Last night the nurse told Graham that the staff physician on call would be available to speak with us this morning after rounds as they often leave after that on Sundays. Thankfully my brother and sister-in-law were able to look after Isaac so that Graham and I could meet with the doctor together.
The plan is to continue on the same course for the next two to three weeks. This means they'll keep extubating him to CPAP when he's ready and then they'll try to get him off CPAP. If he still can't handle being extubated after around three weeks, then Josiah would have a cardiac catheterization and/or an MRI from which they would determine if he needs surgery and whether or not there is a surgery that can help him. Given that Josiah has had three recent surgeries, they do not want to rush into any surgery. We are happy that they are happy to wait.
When we were at his bedside this morning, Josiah's sats were in the 50s and his blood pressure was very low. He received a blood transfusion to increase his volume and optimize his haemoglobin and both his sats and blood pressure improved.
It was a blessing to be able to hold my nephew again. He seems to be excited by everything around him (except when he's in an elevator). Isaac enjoyed giving him hugs and loved the attention from his aunt and uncle. I look forward to seeing Isaac give Baby JaJa a hug.
Other important news - Graham discovered that we have a medicine cabinet in the bathroom I've been using for over eight weeks! Our counter looks a little tidier now.
One of Josiah's previous nurses told us today that we are very laid back parents. Ordinarily those would not be the first words I would use to describe either of us but I guess she's seen a lot of parents. Hopefully God's peace is evident in our lives. If this were just Graham and I without the peace and comfort of Jesus through the Holy Spirit in our lives, I think this would be a very scary, lonely, sad, questioning time. We love Josiah and we're so thankful to have him. God has provided an incredible support network to help carry us through this time and we are grateful.
Graham just emailed me from the hospital (I'm at RMH as Isaac is in bed.) In case you're wondering, Josiah's numbers are currently: heart rate 140, respiration rate 28, and an oxygen saturation level of 86. He's on 40% oxygen with a peep of 9 and a rate of 20. Just so you know, extubation doesn't take place until he's at a peep of 5.
I was just looking up 1 Peter 5:7 ("Cast all your anxiety on him because he cares for you.") when I found Psalm 55:22 ("Cast your cares on the Lord and he will sustain you ....")
Good night and thank you for your prayers and support.
Blessings,
Elizabeth
Sunday 30 September 2012
Saturday 29 September 2012
Reintubated again
Graham called me from the hospital around 10:15 PM. He went to see Josiah and found that he had just been reintubated. They didn't call to tell us as it was an emergency. The fellow thinks it is due to his heart and not his lungs. He assumes that the problem is Josiah's main valve. My understanding had been that he would need to have a cardiac catheterization; however, the fellow told Graham that he did not see the point in having a cath. So, we may need to wait until tomorrow to find out next steps. Graham is still at the hospital so perhaps he'll find out more tonight. He just emailed - Josiah looks much better, has sats in the mid-70s, heart rate in the 150s, his blood pressure has improved and he has a fever so he has ice on his head. He's resting comfortably.
It was great to see our family today. My nephew is a very happy baby and it was wonderful to hold him. My sister-in-law was able to hold Josiah but unfortunately he has not enjoyed being held by anyone these last couple of days. He did seem to enjoy his head massage and bath which calmed him down a little this afternoon. Unfortunately he was desatting to the 50s and 60s shortly after.
I'm sad for Josiah having to go through this. This is the fifth time in total that he has been intubated. Being intubated means that he is at increased risk of lung infection but it also means he doesn't have to work at and use his energy for breathing as the ventilator does it for him.
I was encouraged by Josiah's arm strength today. He was able to use his left hand to pull his CPAP mask down so that the bottom of it went in his mouth. I don't think this was accomplishing what he wanted but he did keep persevering. Given that he's intubated, they should be able to put polysporin in the area between his nostrils to help his skin heal.
As usual it's been great to have Isaac around. I love listening to him speak and repeat things. I told him last week that the wooden red bird on the wall outside was a cardinal and he remembered and told that to Daddy this morning. We thank the Lord for the personality he gave to Isaac to help him deal with all that's been happening. We were hoping to be able to let him see Josiah today but there are a number of infections in the CCCU so they didn't want to risk bringing extra children into the rooms.
We look forward to spending more time with our family tomorrow before they need to head back to the Ottawa area. We are seeing if we can have a meeting with the staff physician tomorrow while Graham's here.
Like King David we say, "But You, Lord, are a shield around me, my glory, the one who lifts my head high. I call out to the Lord and he answers me from his holy mountain."
Thanks for all your prayers and support! We send a special hello to our Sunday School class that starts up tomorrow - we'll be missing you.
Blessings,
Elizabeth
It was great to see our family today. My nephew is a very happy baby and it was wonderful to hold him. My sister-in-law was able to hold Josiah but unfortunately he has not enjoyed being held by anyone these last couple of days. He did seem to enjoy his head massage and bath which calmed him down a little this afternoon. Unfortunately he was desatting to the 50s and 60s shortly after.
I'm sad for Josiah having to go through this. This is the fifth time in total that he has been intubated. Being intubated means that he is at increased risk of lung infection but it also means he doesn't have to work at and use his energy for breathing as the ventilator does it for him.
I was encouraged by Josiah's arm strength today. He was able to use his left hand to pull his CPAP mask down so that the bottom of it went in his mouth. I don't think this was accomplishing what he wanted but he did keep persevering. Given that he's intubated, they should be able to put polysporin in the area between his nostrils to help his skin heal.
As usual it's been great to have Isaac around. I love listening to him speak and repeat things. I told him last week that the wooden red bird on the wall outside was a cardinal and he remembered and told that to Daddy this morning. We thank the Lord for the personality he gave to Isaac to help him deal with all that's been happening. We were hoping to be able to let him see Josiah today but there are a number of infections in the CCCU so they didn't want to risk bringing extra children into the rooms.
We look forward to spending more time with our family tomorrow before they need to head back to the Ottawa area. We are seeing if we can have a meeting with the staff physician tomorrow while Graham's here.
Like King David we say, "But You, Lord, are a shield around me, my glory, the one who lifts my head high. I call out to the Lord and he answers me from his holy mountain."
Thanks for all your prayers and support! We send a special hello to our Sunday School class that starts up tomorrow - we'll be missing you.
Blessings,
Elizabeth
Friday 28 September 2012
Another weekend begins
Graham and Isaac arrived before 9:00 PM. Isaac woke up but he snuggled into my neck as I carried him upstairs and he soon fell asleep. Carrying him in is one of my favourite moments of the week. Graham went to park the car at SickKids and then he'll have a visit with Josiah before heading back here.
On rounds this morning the doctors said to try Josiah off CPAP two times today for three hours each time. During this morning's trial he lasted for two and a half hours. They were planning the second trial for 5:00 PM but around 3:00 PM his sats stayed in the high 60s and his breathing was more laboured so the RT would not try him off again. For most of the day he was fever free but he developed one later this afternoon.
This week I've usually stayed with Josiah until shift change at 7:00 PM and then I've tried to get back to RMH quickly to say goodnight to Isaac on FaceTime before I pump and eat dinner. Tonight there were leftovers from a wonderful dinner hosted by Deloitte.
I caught Josiah putting his fingers from his left hand in his mouth so that was wonderful to see. It's funny how he may not want to grasp onto one of his toys but he'll grab onto the side of his CPAP strap and pull on it. It will be wonderful when we're able to say goodbye to CPAP. Josiah seems to have very sensitive skin so he has a number of duoderm dressings on his face to protect him from the CPAP mask. He's developed a sore between his nostrils where part of the mask sits.
The nurse removed the dressing from the scar down his chest yesterday. It's been healed for a while. I've seen it before and it looks quite good. He certainly has a number of scars on his body from the various lines he's had and his thighs are covered with marks from his enoxparin injections. I was practicing giving a needle to an orange today. One of these days I'll need to graduate to Josiah whose skin does not remind me of an orange.
My brother, sister-in-law and nephew are heading to Toronto tomorrow from the Ottawa area. It will be wonderful to see them.
Thank you to everyone for your support and prayers!
Blessings,
Elizabeth
On rounds this morning the doctors said to try Josiah off CPAP two times today for three hours each time. During this morning's trial he lasted for two and a half hours. They were planning the second trial for 5:00 PM but around 3:00 PM his sats stayed in the high 60s and his breathing was more laboured so the RT would not try him off again. For most of the day he was fever free but he developed one later this afternoon.
This week I've usually stayed with Josiah until shift change at 7:00 PM and then I've tried to get back to RMH quickly to say goodnight to Isaac on FaceTime before I pump and eat dinner. Tonight there were leftovers from a wonderful dinner hosted by Deloitte.
I caught Josiah putting his fingers from his left hand in his mouth so that was wonderful to see. It's funny how he may not want to grasp onto one of his toys but he'll grab onto the side of his CPAP strap and pull on it. It will be wonderful when we're able to say goodbye to CPAP. Josiah seems to have very sensitive skin so he has a number of duoderm dressings on his face to protect him from the CPAP mask. He's developed a sore between his nostrils where part of the mask sits.
The nurse removed the dressing from the scar down his chest yesterday. It's been healed for a while. I've seen it before and it looks quite good. He certainly has a number of scars on his body from the various lines he's had and his thighs are covered with marks from his enoxparin injections. I was practicing giving a needle to an orange today. One of these days I'll need to graduate to Josiah whose skin does not remind me of an orange.
My brother, sister-in-law and nephew are heading to Toronto tomorrow from the Ottawa area. It will be wonderful to see them.
Thank you to everyone for your support and prayers!
Blessings,
Elizabeth
Thursday 27 September 2012
A wealth of information
Josiah's physiotherapist (PT) is amazing! The nurses all speak so highly of him. Today he told me that the left side of Josiah's body needs some work. For example, it is hard for Josiah to bring his left shoulder and upper arm forward in order to bring his hand to his face. This clinical diagnosis matches up with the location of the perinatal stroke shown in the MRI. The PT showed me how to position Josiah and support him on my lap and in bed and pointed out the cues to look for to know when to let him rest and lay back instead of holding him more upright.
He said that Josiah is showing classic signs of not knowing where his body is in relation to other things - he feels lost in space (I forget his words and don't know how to explain it better than that). He told me to put pressure on his tummy with my hand to help Josiah feel more secure. He asked the nurse if she had friends in the NICU as a volunteer makes beanbag hands for the NICU babies. The beanbag hand would go on Josiah's tummy when my hand is not available.
When Josiah is awake he needs to be on his side in the bed or on a chair or in my arms (the best option). If he's lying in bed, he needs a mirror in front of him and something under his feet to push on if he wants.
Lastly, the PT asked to put a soother in Josiah's mouth. He's never sucked on a soother but he used to gnaw on it. This time he just kept his mouth open and wouldn't touch it. I also noticed that he hasn't enjoyed the pink sponge water lollipops as much the last couple of days. The physiotherapist told me that babies that have been intubated and extubated a number times often develop an oral aversion. So, he is going to make a referral to an Occupational Therapist who will work on fixing this aversion.
The doctors were hoping to let Josiah off CPAP for an hour and a half to two hours today but he didn't tolerate it this morning. He was desating to the 50s.
***
I wrote all of the above midafternoon. When I saw Josiah later this afternoon I found out that he had been off of CPAP for two hours and had no problems. Before shift change he did have a heart rate in the 180s for a while. They did an ECG which showed an arrhythmia but he was able to come out of it himself and did not have any negative consequences. He is currently sleeping snug as a bug in a rug.
Josiah's day nurse was one of the charge nurses. She arrives early so when she saw that she was assigned to someone else she asked to be changed to Josiah. He has such wonderful care.
I ate late but there were delicious leftovers from the dinner put on by TD Bank and I'll be able to take some for lunch tomorrow. While I ate I chatted with a grandmother from Jordan and shortly after I met a woman here from Nunavut. It will be good to see Graham and Isaac in person tomorrow night.
Time to pump and the sleep. Thank you for your support and prayers.
Blessings,
Elizabeth
He said that Josiah is showing classic signs of not knowing where his body is in relation to other things - he feels lost in space (I forget his words and don't know how to explain it better than that). He told me to put pressure on his tummy with my hand to help Josiah feel more secure. He asked the nurse if she had friends in the NICU as a volunteer makes beanbag hands for the NICU babies. The beanbag hand would go on Josiah's tummy when my hand is not available.
When Josiah is awake he needs to be on his side in the bed or on a chair or in my arms (the best option). If he's lying in bed, he needs a mirror in front of him and something under his feet to push on if he wants.
Lastly, the PT asked to put a soother in Josiah's mouth. He's never sucked on a soother but he used to gnaw on it. This time he just kept his mouth open and wouldn't touch it. I also noticed that he hasn't enjoyed the pink sponge water lollipops as much the last couple of days. The physiotherapist told me that babies that have been intubated and extubated a number times often develop an oral aversion. So, he is going to make a referral to an Occupational Therapist who will work on fixing this aversion.
The doctors were hoping to let Josiah off CPAP for an hour and a half to two hours today but he didn't tolerate it this morning. He was desating to the 50s.
***
I wrote all of the above midafternoon. When I saw Josiah later this afternoon I found out that he had been off of CPAP for two hours and had no problems. Before shift change he did have a heart rate in the 180s for a while. They did an ECG which showed an arrhythmia but he was able to come out of it himself and did not have any negative consequences. He is currently sleeping snug as a bug in a rug.
Josiah's day nurse was one of the charge nurses. She arrives early so when she saw that she was assigned to someone else she asked to be changed to Josiah. He has such wonderful care.
I ate late but there were delicious leftovers from the dinner put on by TD Bank and I'll be able to take some for lunch tomorrow. While I ate I chatted with a grandmother from Jordan and shortly after I met a woman here from Nunavut. It will be good to see Graham and Isaac in person tomorrow night.
Time to pump and the sleep. Thank you for your support and prayers.
Blessings,
Elizabeth
Wednesday 26 September 2012
Moving forward
Josiah had a good day. He was off CPAP for an hour this morning and an hour this evening and passed with flying colours. He wears nasal prongs when he is off of CPAP so he continues to get oxygen. I held Josiah for approximately forty-five minutes and look forward to doing so again tomorrow.
We are back on the physio schedule. It had been put on hold for a few days so it was nice to see the physiotherapist again today. I'm working with Josiah to help him grasp toys and objects so that we can eventually get to the place where he's grasping objects and pulling them to his face. The therapist will also work on stretching his neck muscles. He took photos of me doing these exercises with Josiah so that he can put them on the wall to remind me of what I should be doing.
The continuous infusions of morphine and diazapam were stopped this morning. Josiah now gets small doses of these drugs alternately every three hours. Now that he's more stable he should get his four month vaccines soon.
I worked hard to get a smile or an almost smile this afternoon - it's a little hard to tell when he has bubbles all over his lips due to the CPAP. I haven't given Josiah his enoxparin injection yet but today I did put the drug into the syringe. Baby steps. Josiah doesn't seem to mind the needles but he has marks all over his upper legs. The nurse yesterday told me that he had spoken to a soldier who recalled when they didn't have the technology for small needles. He said the needles were large and they were used more than once so they became less sharp. There are so many reasons to be thankful that it's 2012!
It was great to see Graham's parents today and be able to have a visit.
I said goodbye to another mom of a premie baby who has been transferred to their local hospital. There are always new people to meet here.
It's time to say goodnight. I'm going to pump first and then have a good sleep until the alarm wakes me. I heard yesterday that one of the other hospitals has a communal pumping room. Let's just say I'm thankful that I'm not at that hospital. :)
I thank Jesus for His joy during this adventure.
Blessings,
Elizabeth
We are back on the physio schedule. It had been put on hold for a few days so it was nice to see the physiotherapist again today. I'm working with Josiah to help him grasp toys and objects so that we can eventually get to the place where he's grasping objects and pulling them to his face. The therapist will also work on stretching his neck muscles. He took photos of me doing these exercises with Josiah so that he can put them on the wall to remind me of what I should be doing.
The continuous infusions of morphine and diazapam were stopped this morning. Josiah now gets small doses of these drugs alternately every three hours. Now that he's more stable he should get his four month vaccines soon.
I worked hard to get a smile or an almost smile this afternoon - it's a little hard to tell when he has bubbles all over his lips due to the CPAP. I haven't given Josiah his enoxparin injection yet but today I did put the drug into the syringe. Baby steps. Josiah doesn't seem to mind the needles but he has marks all over his upper legs. The nurse yesterday told me that he had spoken to a soldier who recalled when they didn't have the technology for small needles. He said the needles were large and they were used more than once so they became less sharp. There are so many reasons to be thankful that it's 2012!
It was great to see Graham's parents today and be able to have a visit.
I said goodbye to another mom of a premie baby who has been transferred to their local hospital. There are always new people to meet here.
It's time to say goodnight. I'm going to pump first and then have a good sleep until the alarm wakes me. I heard yesterday that one of the other hospitals has a communal pumping room. Let's just say I'm thankful that I'm not at that hospital. :)
I thank Jesus for His joy during this adventure.
Blessings,
Elizabeth
Tuesday 25 September 2012
No more tube
Aecon hosted an amazing meal tonight. They must have organized some sort of potluck as there was an incredible selection of delicious food and lots of leftovers. After dinner I met another mom whose baby will be transferred tomorrow to a hospital closer to their home after being here for three months. Early on they were asked to sign a DNR and were told that their baby would never be able to take a bottle along with a host of other problems. Now, she is taking a bottle and has also learned to nurse and the expected future outcomes are much more promising.
I was mistaken in a previous post. The room Josiah is in does have one-to-one nursing care. They were just short-staffed the other day. These photos were taken on the weekend when Isaac visited "Baby Ja Ja". It's time to pump and then head to bed. Thank you for your support and prayers! We rest in God's peace.
Blessings,
Elizabeth
Monday 24 September 2012
Uneventful day
Josiah has been stable today. His cultures came back negative so he's off his antibiotics. When I left him this evening the ventilator was giving him 35% oxygen with a peep of 5. He was weaned to 6mcg/kg/hr of morphine tonight. They had stopped weaning his sedatives for a couple of days after he was reintubated last Thursday but he hasn't needed any extra sedation since then. His feeds were reduced over the weekend as he had thrown up a few times so he is now getting 50 millilitres every three hours. He has had ice on his head for most of the day but his fevers haven't been too high.
Actually, when I walked in this morning I could tell by his face and his squirming that he wasn't happy. The ice on his head had slipped down onto his shoulder and arm which were freezing to the touch. His nurse was on break and the others hadn't noticed as he can't make a sound because of the tube down his throat. I'm sure it wasn't like that for long but I was glad I arrived when I did.
During his alert periods I put objects in his hands and read him his Clifford book. He seems to like looking at the pictures. If I'm not there to hold his hands or watch them, his hands need to be restrained so that he can't pull out his tube or other wires. I know it has to be done but I hate the look of it.
My parent's neighbours are moving so they generously blessed my parents with lots of toys for Isaac to play with. He was thoroughly enjoying his new truck when I called him on FaceTime tonight. Isaac kisses me on the screen to say goodnight. That's the reason for the smudges on Grandpa's iPad. Graham's iPod gets smudges because I kiss Josiah's photo goodnight as well (and at other random times during the day).
Graham found out that his work contract will be extended for another year so we are very happy about that. What a blessing!
It's time to get my laundry out of the dryer. Thanks for reading and thanks for your prayers and support!
Blessings,
Elizabeth
Actually, when I walked in this morning I could tell by his face and his squirming that he wasn't happy. The ice on his head had slipped down onto his shoulder and arm which were freezing to the touch. His nurse was on break and the others hadn't noticed as he can't make a sound because of the tube down his throat. I'm sure it wasn't like that for long but I was glad I arrived when I did.
During his alert periods I put objects in his hands and read him his Clifford book. He seems to like looking at the pictures. If I'm not there to hold his hands or watch them, his hands need to be restrained so that he can't pull out his tube or other wires. I know it has to be done but I hate the look of it.
My parent's neighbours are moving so they generously blessed my parents with lots of toys for Isaac to play with. He was thoroughly enjoying his new truck when I called him on FaceTime tonight. Isaac kisses me on the screen to say goodnight. That's the reason for the smudges on Grandpa's iPad. Graham's iPod gets smudges because I kiss Josiah's photo goodnight as well (and at other random times during the day).
Graham found out that his work contract will be extended for another year so we are very happy about that. What a blessing!
It's time to get my laundry out of the dryer. Thanks for reading and thanks for your prayers and support!
Blessings,
Elizabeth
Sunday 23 September 2012
A better report
When Graham and I left Josiah tonight his temperature was 36.8 degrees, his heart rate was 127 bpm, his sats were 82, and he was on a peep of 5 with 50% oxygen. This is so much better than yesterday or even earlier this morning. We thank God for His touch.
Josiah was given another blood transfusion today to optimize his haemoglobin. We noticed last night that his abdomen was quite distended but it looked better tonight and an x-ray done earlier today didn't show any problems. His eyes were open quite a lot today and he was able to focus. He was given a nice bath first thing this morning and he was apparently playing with all the wires he could get his hands on and enjoying some of his toys with the nurses.
Josiah saved up his one smile for his Grandma today. Graham was with Isaac and I was pumping while my parents were with Josiah. He clearly enjoyed Grandma's singing. My parents came this afternoon to pick up Isaac which allowed Graham and I to be with Josiah together - such a nice treat. I think I may have found another pleasure for him (in addition to his water sponge lollipop). I now give him a foot massage with lotion before I leave him at night.
Graham will get up early and walk to the hospital to see Josiah before he heads back to Kitchener and to work around 7:00.
We decided to skip church today as we wanted to be near Josiah. We know he was prayed for in at least three churches this morning. We are so blessed by such support!
Blessings,
Elizabeth and Graham
Josiah was given another blood transfusion today to optimize his haemoglobin. We noticed last night that his abdomen was quite distended but it looked better tonight and an x-ray done earlier today didn't show any problems. His eyes were open quite a lot today and he was able to focus. He was given a nice bath first thing this morning and he was apparently playing with all the wires he could get his hands on and enjoying some of his toys with the nurses.
Josiah saved up his one smile for his Grandma today. Graham was with Isaac and I was pumping while my parents were with Josiah. He clearly enjoyed Grandma's singing. My parents came this afternoon to pick up Isaac which allowed Graham and I to be with Josiah together - such a nice treat. I think I may have found another pleasure for him (in addition to his water sponge lollipop). I now give him a foot massage with lotion before I leave him at night.
Graham will get up early and walk to the hospital to see Josiah before he heads back to Kitchener and to work around 7:00.
We decided to skip church today as we wanted to be near Josiah. We know he was prayed for in at least three churches this morning. We are so blessed by such support!
Blessings,
Elizabeth and Graham
Saturday 22 September 2012
In need of God's touch
Josiah hasn't been well today. He's been lethargic and has had fevers and has also thrown up. It looks unlikely that he has an infection as the preliminary results of the cultures show no signs of this and his blood work does not indicate an infection. Fevers can also be a sign of heart failure. If the doctors decide that this is what's happening, the next step is to have a diagnostic cardiac catheterization. This would provide information about the pressures and blood flow and allow them to more accurately assess his inlet valve regurgitation.
We were allowed to take Isaac in to see Josiah so we all went to the hospital this morning. After lunch, Isaac and I went to the play park in the hospital and then went back to RMH for a nap while Graham stayed with Josiah. I went and said good-night to Josiah after dinner. His eyes were open so I put on his mobile and it was nice to see him watching it. I also gave him his mouth care which he loves. I wish he would take a soother so he could enjoy having something in his mouth but he only "bites" it so it's more stimulating than soothing and it doesn't stay in his mouth.
I was thinking today how I've been treating this time as a sort of waiting period - waiting for Josiah to get better so we can go home. Instead, I want to really think about enjoying my days with him in case God answers our prayers in a different way than we want. He is a good God and we trust our little Josiah to His care.
It's a bit of a low night for me but it's been a good day for many reasons. Isaac's favourite shape is the circle and he shows me how he can run in a circle. He's good at counting from one to five and he can almost count to ten but remembering number six can be a little tricky. He still loves my hair and falls asleep with his fist full of it. He was very quiet and well behaved when visiting Josiah - he liked being able to touch Josiah's foot. Someone made a lot of dinner and invited everyone to have the leftovers so we enjoyed some homemade soup and other tasty items. Isaac loves books and there are lots to choose from in the library that is down the hall from our room. We didn't need to walk in the rain today. Speaking of rain, I was reminiscing about our trip to Northern Ireland one year ago and looking at our photos. Josiah would have already had his heart condition at that point, unbeknownst to us. A lot has happened in the past year and God's timing has been perfect every step of the way. His love for us has been so evident.
It's time to pump and then go to sleep. Thank you for your love and prayers! We appreciate all the support.
Blessings,
Elizabeth
Update at 11:50 PM - Graham returned from the hospital and let me know that Josiah will be NPO until the morning rounds when the doctors can reassess the situation.
We were allowed to take Isaac in to see Josiah so we all went to the hospital this morning. After lunch, Isaac and I went to the play park in the hospital and then went back to RMH for a nap while Graham stayed with Josiah. I went and said good-night to Josiah after dinner. His eyes were open so I put on his mobile and it was nice to see him watching it. I also gave him his mouth care which he loves. I wish he would take a soother so he could enjoy having something in his mouth but he only "bites" it so it's more stimulating than soothing and it doesn't stay in his mouth.
I was thinking today how I've been treating this time as a sort of waiting period - waiting for Josiah to get better so we can go home. Instead, I want to really think about enjoying my days with him in case God answers our prayers in a different way than we want. He is a good God and we trust our little Josiah to His care.
It's a bit of a low night for me but it's been a good day for many reasons. Isaac's favourite shape is the circle and he shows me how he can run in a circle. He's good at counting from one to five and he can almost count to ten but remembering number six can be a little tricky. He still loves my hair and falls asleep with his fist full of it. He was very quiet and well behaved when visiting Josiah - he liked being able to touch Josiah's foot. Someone made a lot of dinner and invited everyone to have the leftovers so we enjoyed some homemade soup and other tasty items. Isaac loves books and there are lots to choose from in the library that is down the hall from our room. We didn't need to walk in the rain today. Speaking of rain, I was reminiscing about our trip to Northern Ireland one year ago and looking at our photos. Josiah would have already had his heart condition at that point, unbeknownst to us. A lot has happened in the past year and God's timing has been perfect every step of the way. His love for us has been so evident.
It's time to pump and then go to sleep. Thank you for your love and prayers! We appreciate all the support.
Blessings,
Elizabeth
Update at 11:50 PM - Graham returned from the hospital and let me know that Josiah will be NPO until the morning rounds when the doctors can reassess the situation.
Friday 21 September 2012
Friday Night Fever
The exciting news from today is that Josiah's surgical drainage tubes (aka "JPs") were removed at about 1:00 PM. Elizabeth got to see the whole procedure, and was amazed at how much tubing was inside of him. Now that the tubes are out, the six-week countdown is on for the portagen. It will be great to give him Elizabeth's milk again after the six weeks are up.
Unfortunately Josiah has been battling a fever off and on for the last day, so they decided to put him on antibiotics tonight as a precaution. They have also sent blood and urine cultures for testing -- the results won't arrive for 48 hours or more. When Graham was there tonight they had a big bag of ice on his head and some special ice packs on his chest to bring the fever down.
Graham and Isaac arrived safely once again tonight and will stay in Toronto until Sunday evening. It looks like it's going to be a rainy weekend, so we'll see what we can come up with to keep Isaac entertained as he loves the outdoors.
Thanks again for following along on this journey. We appreciate all the love, support and prayers we are receiving -- it's making the difference!
Blessings,
Graham and Elizabeth
Unfortunately Josiah has been battling a fever off and on for the last day, so they decided to put him on antibiotics tonight as a precaution. They have also sent blood and urine cultures for testing -- the results won't arrive for 48 hours or more. When Graham was there tonight they had a big bag of ice on his head and some special ice packs on his chest to bring the fever down.
Graham and Isaac arrived safely once again tonight and will stay in Toronto until Sunday evening. It looks like it's going to be a rainy weekend, so we'll see what we can come up with to keep Isaac entertained as he loves the outdoors.
Thanks again for following along on this journey. We appreciate all the love, support and prayers we are receiving -- it's making the difference!
Blessings,
Graham and Elizabeth
Thursday 20 September 2012
Up and Down
The good news is that Josiah will get his chest drainage tubes out tomorrow. I wanted to head back to RMH when the nurse shift changed tonight so I asked them to wait until the morning to take out the tubes as I would like to watch.
Unfortunately, Josiah had significant desats this morning and early afternoon so he was reintubated. This is his fourth time getting intubated so he's a pro now. The echocardiogram showed that the shunt is fine but there is more regurgitation in his main inlet valve. The physiotherapist noticed that Josiah's face was more swollen today. The fellow said that the valve issue could cause this. The nurse thought that it might just be a respiration issue as his sats came back up to the 70s with the tube. The staff physician may decide that he wants a cardiac catheterization in order to better assess what's going on.
My parents came to visit today (Isaac is currently at our home with Graham's mom). We went out to Toys R Us to look for some developmental toys that the physiotherapist told me about. We were also able to buy a beautiful mobile off Kijiji. This morning the physiotherapist showed me some things to do to help Josiah learn to grasp objects. The physiotherapist held him in a sitting position and stretched his neck. He also let go of his upper body momentarily in order to work Josiah's core muscles.
Josiah is still in the CCCU but his current room is usually reserved for those who are less critical and who are approaching discharge to the fourth floor. Instead of one-to-one nursing, the nurses have two patients. The baby girl beside Josiah is five months old and has been in the hospital the whole time.
A friend came and visited me tonight so it was great to catch up with her. My meal schedule was a little off today so at around 9:00 PM I ate delicious leftovers from the dinner put on by the Ontario Municipal Employees Retirement System.
It's time to pump and go to sleep. Thanks for your prayers and all the support. I look forward to seeing Graham and Isaac tomorrow night.
Blessings,
Elizabeth
Unfortunately, Josiah had significant desats this morning and early afternoon so he was reintubated. This is his fourth time getting intubated so he's a pro now. The echocardiogram showed that the shunt is fine but there is more regurgitation in his main inlet valve. The physiotherapist noticed that Josiah's face was more swollen today. The fellow said that the valve issue could cause this. The nurse thought that it might just be a respiration issue as his sats came back up to the 70s with the tube. The staff physician may decide that he wants a cardiac catheterization in order to better assess what's going on.
My parents came to visit today (Isaac is currently at our home with Graham's mom). We went out to Toys R Us to look for some developmental toys that the physiotherapist told me about. We were also able to buy a beautiful mobile off Kijiji. This morning the physiotherapist showed me some things to do to help Josiah learn to grasp objects. The physiotherapist held him in a sitting position and stretched his neck. He also let go of his upper body momentarily in order to work Josiah's core muscles.
Josiah is still in the CCCU but his current room is usually reserved for those who are less critical and who are approaching discharge to the fourth floor. Instead of one-to-one nursing, the nurses have two patients. The baby girl beside Josiah is five months old and has been in the hospital the whole time.
A friend came and visited me tonight so it was great to catch up with her. My meal schedule was a little off today so at around 9:00 PM I ate delicious leftovers from the dinner put on by the Ontario Municipal Employees Retirement System.
It's time to pump and go to sleep. Thanks for your prayers and all the support. I look forward to seeing Graham and Isaac tomorrow night.
Blessings,
Elizabeth
Wednesday 19 September 2012
A new room
In the last few days there have been three separate incidents that have underscored how little it takes to set me off and how much I try to be in control of those things that I think are in my realm of influence. In the big things (like heart surgeries for example), I am fully aware that I cannot bring about outcomes so I am more than happy to say, "This serve is for You God" and I can be quite relaxed, knowing that God is in control and He is able. However, if you mess with me on Kijiji or don't share my son's test results or (gasp!) change Josiah's room without calling me, I will be thrown for a loop.
This morning I called the nurse at 6:45 AM to find out how Josiah's night went. That's when I found out that he had changed rooms last night at 11:00 PM while I was typing unaware. Instead of being thankful that he was moved to a different room because he needs less care, Miss Attitude showed up and I welcomed her home. Miss Attitude always focuses on principles and feels justified and righteous in her indignance. There are many other preferable options than indignance but of course it feels good to be "right" and I want people to know how they can do better ... instead of reminding myself how often I fail to live up to others' expectations, and how often I miss the mark, and how much God has forgiven, and how much I need Jesus, and how God brings good out of the bad.
Josiah ended up having a nurse back for her first shift after being off for 8 months, backpacking around the world. She was lovely and she said it was the perfect first shift because we were so nice. The next time I'm thrown for a loop, I want to say, "Thank you Lord for the opportunity to see your goodness." I'm guessing it might take a few practice runs. Thankfully Graham is more centred than I am and helps me to keep things in perspective. I'll end the introspection now so that I can tell you about Josiah.
He had a good morning. He was off of CPAP for an hour and fifteen minutes and his breathing wasn't laboured. He had two good physio sessions and I was able to hold him twice. This afternoon he ended up desating to the 50s and it took quite a while to determine that the problem was due to one of his medications. He was in the high 60s for quite a while on an oxygen rate of 75%. I ended up staying until around 9:45 so it was a long day. This was the first time I didn't leave during shift change; I just stayed with Josiah until the problem was (hopefully) solved.
He was much more alert today and his cough is stronger. He focussed on the mobile and some of his toys for a while. October 14 is the date when he will be allowed to push up on his arms so physio will need to work towards that. I'll try to hold him more upright tomorrow and we may also try him on his tummy. I was reminded tonight that I have a friend who has lots of experience working with infants who are behind or compromised in some way with their gross motor skills so she'll be able to give me some tips. God is the perfect provider!
It looks like Josiah will get his drainage tubes out tomorrow - yeay! I'm sure he'll also try being off of CPAP a couple of times again.
Emma Stewart is back in the PICU. It is so often a roller coaster ride on our floor.
Thank you so much for your emails, kind words, verses, and prayers! We couldn't do this without you. It is so encouraging to have your love and support.
Blessings,
Elizabeth
P.S. Thankfully there were leftovers when I arrived back at RMH. Rubbermaid had provided a delicious meal!
This morning I called the nurse at 6:45 AM to find out how Josiah's night went. That's when I found out that he had changed rooms last night at 11:00 PM while I was typing unaware. Instead of being thankful that he was moved to a different room because he needs less care, Miss Attitude showed up and I welcomed her home. Miss Attitude always focuses on principles and feels justified and righteous in her indignance. There are many other preferable options than indignance but of course it feels good to be "right" and I want people to know how they can do better ... instead of reminding myself how often I fail to live up to others' expectations, and how often I miss the mark, and how much God has forgiven, and how much I need Jesus, and how God brings good out of the bad.
Josiah ended up having a nurse back for her first shift after being off for 8 months, backpacking around the world. She was lovely and she said it was the perfect first shift because we were so nice. The next time I'm thrown for a loop, I want to say, "Thank you Lord for the opportunity to see your goodness." I'm guessing it might take a few practice runs. Thankfully Graham is more centred than I am and helps me to keep things in perspective. I'll end the introspection now so that I can tell you about Josiah.
He had a good morning. He was off of CPAP for an hour and fifteen minutes and his breathing wasn't laboured. He had two good physio sessions and I was able to hold him twice. This afternoon he ended up desating to the 50s and it took quite a while to determine that the problem was due to one of his medications. He was in the high 60s for quite a while on an oxygen rate of 75%. I ended up staying until around 9:45 so it was a long day. This was the first time I didn't leave during shift change; I just stayed with Josiah until the problem was (hopefully) solved.
He was much more alert today and his cough is stronger. He focussed on the mobile and some of his toys for a while. October 14 is the date when he will be allowed to push up on his arms so physio will need to work towards that. I'll try to hold him more upright tomorrow and we may also try him on his tummy. I was reminded tonight that I have a friend who has lots of experience working with infants who are behind or compromised in some way with their gross motor skills so she'll be able to give me some tips. God is the perfect provider!
It looks like Josiah will get his drainage tubes out tomorrow - yeay! I'm sure he'll also try being off of CPAP a couple of times again.
Emma Stewart is back in the PICU. It is so often a roller coaster ride on our floor.
Thank you so much for your emails, kind words, verses, and prayers! We couldn't do this without you. It is so encouraging to have your love and support.
Blessings,
Elizabeth
P.S. Thankfully there were leftovers when I arrived back at RMH. Rubbermaid had provided a delicious meal!
Tuesday 18 September 2012
A banner day!
Where to start?
When I arrived at the hospital today I found Josiah on CPAP on a peep of only five! That means he came off of Bi-PAP and was weaned from a peep of at least seven. He was off of CPAP for an hour this afternoon with just nasal prongs and he did quite well for the first forty-five minutes and then he had more indrawing and was paler but he did not desat until he was back on CPAP. He'll try again a couple of times tomorrow. The oxygen level on the machine is around 45%.
He went off milrinone this morning (a heart medication) so his only continuous medication is the morphine which was at 24 mcg/kg/hr this morning but was weaned to 18 late afternoon. At his peak he was on 70 mcg/kg/hr so he has come so far! He also hasn't needed any extra sedation since before the weekend and he hasn't seemed restless or agitated for at least a few days.
He had two physio sessions today for his lungs and enjoyed both of them. He's doing much better at coughing up his secretions himself and his cough is a lot stronger. He still has congestion in his lungs but he hasn't had any collapsed areas in a while. Later this week he will transition to physio that will work on his movement and control and things like holding up his head.
There hasn't been any increase in Josiah's drainage. If this continues to be true, he may be able to get his chest drainage tubes out on Thursday. His feeds were up to 55 millilitres and are going up by 5 millilitres each feed, every three hours.
Ever since a nurse mentioned that it would nice if the hospital had more mobiles, I've wanted a mobile for Josiah. When I walked into Josiah's room today he had a mobile. I had asked the nurse to speak with the Child Life Specialist and she was able to find one with good developmental patterns and colours to stimulate him. I'm not sure how interested Josiah was but Mommy was happy. I later asked the Child Life Specialist if she had a rattle that I could use with Josiah until Graham brings some toys this weekend and she brought me a bag from the Starlight Children's Foundation. They "help seriously ill children and their families cope with their pain, fear, and isolation through entertainment, education, and family activities." In Josiah's case this meant he was given a helicopter rattle, another toy that makes a rain noise, a Clifford book, and a soft mini blanket with a giraffe head. How kind and thoughtful!
I was given the results from neurology today and they are very encouraging. The MRI showed evidence of an old stroke. This is presumed to be a perinatal stroke, occurring either in utero or at birth. There are usually excellent outcomes from these types of strokes and it's promising that we did not notice deficits previously (such as only moving on one side) and he is currently showing equal movement on both sides of his body. Apparently these strokes are not all that uncommon and risk of recurrence is extremely low as it's assumed that the original clot was from the placenta. Josiah's risk may be a little higher given that he has a heart condition.
They are questioning whether or not Josiah has a clot in the venous system in his head. The MRI was inconclusive so he needs to have a CT Venogram. I believe we'll wait until Josiah can breath on his own before this is done. We do not need to rush as the treatment for a clot is the enoxaparin which he is already on. The visual Evoked Potential test results showed normal results on both eyes. He is able to get the signal from his eyes to the back of his brain. The somatosensory Evoked Potential test did not give normal results but they also weren't distinctly abnormal so they don't know how to interpret this. This test isn't very reliable for such young children so it will be repeated when Josiah is older.
There is no evidence of new brain ischemia (insufficient blood flow to the brain resulting in poor oxygen supply and death of brain tissue or cerebral infarction - stroke). Additionally, nothing has affected the white matter in the brain. This is incredible! There were many times when Josiah had very low saturation levels. I remember once asking the nurse how low Josiah's oxygen saturation levels had gone after she told me that his blood gas results came back and they put him back on nitric oxide because they were low. Her answer was, "as low as they can go."
So, in terms of neurology, Josiah will have the CTV before we are discharged and then he will be followed up by the stroke clinic three months after discharge. In terms of any deficits in Josiah's abilities, we just need to let Josiah grow and develop before we know more. While Josiah seems to be more alert when he is awake, he still doesn't usually focus on me when I'm in front of him speaking to him. He's also very lethargic. His lethargy can't be assessed until he is off all of the sedation. His fingers are also quite blue which surprised the staff physician yesterday. She said she is used to blue feet but hasn't seen blue fingers like his. The fellow thought Josiah would be in the CCCU until at least next week.
Sadly, I missed a visitor today but she kindly left me some chocolate so I would know she had come. I missed her visit because I was at RMH getting a free fifteen minute massage on my neck and shoulders. A massage therapist volunteers her time for patients and parents at RMH. Not surprisingly, she said my shoulders were very tight and suggested I do some shoulder rolls.
Lest anyone be tempted to feel sorry for me, please know that in addition to my massage and chocolate, I was also blessed with a steak and baked potato dinner and an ice cream sundae all thanks to McDonalds who provided this meal at RMH. I am currently enjoying my tea as I type and watch the lights on the C.N. Tower and listen to music that proclaims Jesus' faithfulness. I had a wonderful snuggle and snooze with Josiah this afternoon and afterwards I discovered ...
... (I saved the best for last as a reward for those who kept reading my novel) ... that Josiah cut his first tooth!!! How exciting is that!? The medical staff didn't seem quite as excited as me but that's okay! The nurses kept talking about how much better Josiah looks and how great he's doing.
Okay, actually the best news is that Emma Stewart was moved out of PICU and to the ward. Thank You Lord!
Time to pump and then go to sleep. Thanks for your prayers! We are so grateful for all God has done and continues to do.
Blessings,
Elizabeth
When I arrived at the hospital today I found Josiah on CPAP on a peep of only five! That means he came off of Bi-PAP and was weaned from a peep of at least seven. He was off of CPAP for an hour this afternoon with just nasal prongs and he did quite well for the first forty-five minutes and then he had more indrawing and was paler but he did not desat until he was back on CPAP. He'll try again a couple of times tomorrow. The oxygen level on the machine is around 45%.
He went off milrinone this morning (a heart medication) so his only continuous medication is the morphine which was at 24 mcg/kg/hr this morning but was weaned to 18 late afternoon. At his peak he was on 70 mcg/kg/hr so he has come so far! He also hasn't needed any extra sedation since before the weekend and he hasn't seemed restless or agitated for at least a few days.
He had two physio sessions today for his lungs and enjoyed both of them. He's doing much better at coughing up his secretions himself and his cough is a lot stronger. He still has congestion in his lungs but he hasn't had any collapsed areas in a while. Later this week he will transition to physio that will work on his movement and control and things like holding up his head.
There hasn't been any increase in Josiah's drainage. If this continues to be true, he may be able to get his chest drainage tubes out on Thursday. His feeds were up to 55 millilitres and are going up by 5 millilitres each feed, every three hours.
Ever since a nurse mentioned that it would nice if the hospital had more mobiles, I've wanted a mobile for Josiah. When I walked into Josiah's room today he had a mobile. I had asked the nurse to speak with the Child Life Specialist and she was able to find one with good developmental patterns and colours to stimulate him. I'm not sure how interested Josiah was but Mommy was happy. I later asked the Child Life Specialist if she had a rattle that I could use with Josiah until Graham brings some toys this weekend and she brought me a bag from the Starlight Children's Foundation. They "help seriously ill children and their families cope with their pain, fear, and isolation through entertainment, education, and family activities." In Josiah's case this meant he was given a helicopter rattle, another toy that makes a rain noise, a Clifford book, and a soft mini blanket with a giraffe head. How kind and thoughtful!
I was given the results from neurology today and they are very encouraging. The MRI showed evidence of an old stroke. This is presumed to be a perinatal stroke, occurring either in utero or at birth. There are usually excellent outcomes from these types of strokes and it's promising that we did not notice deficits previously (such as only moving on one side) and he is currently showing equal movement on both sides of his body. Apparently these strokes are not all that uncommon and risk of recurrence is extremely low as it's assumed that the original clot was from the placenta. Josiah's risk may be a little higher given that he has a heart condition.
They are questioning whether or not Josiah has a clot in the venous system in his head. The MRI was inconclusive so he needs to have a CT Venogram. I believe we'll wait until Josiah can breath on his own before this is done. We do not need to rush as the treatment for a clot is the enoxaparin which he is already on. The visual Evoked Potential test results showed normal results on both eyes. He is able to get the signal from his eyes to the back of his brain. The somatosensory Evoked Potential test did not give normal results but they also weren't distinctly abnormal so they don't know how to interpret this. This test isn't very reliable for such young children so it will be repeated when Josiah is older.
There is no evidence of new brain ischemia (insufficient blood flow to the brain resulting in poor oxygen supply and death of brain tissue or cerebral infarction - stroke). Additionally, nothing has affected the white matter in the brain. This is incredible! There were many times when Josiah had very low saturation levels. I remember once asking the nurse how low Josiah's oxygen saturation levels had gone after she told me that his blood gas results came back and they put him back on nitric oxide because they were low. Her answer was, "as low as they can go."
So, in terms of neurology, Josiah will have the CTV before we are discharged and then he will be followed up by the stroke clinic three months after discharge. In terms of any deficits in Josiah's abilities, we just need to let Josiah grow and develop before we know more. While Josiah seems to be more alert when he is awake, he still doesn't usually focus on me when I'm in front of him speaking to him. He's also very lethargic. His lethargy can't be assessed until he is off all of the sedation. His fingers are also quite blue which surprised the staff physician yesterday. She said she is used to blue feet but hasn't seen blue fingers like his. The fellow thought Josiah would be in the CCCU until at least next week.
Sadly, I missed a visitor today but she kindly left me some chocolate so I would know she had come. I missed her visit because I was at RMH getting a free fifteen minute massage on my neck and shoulders. A massage therapist volunteers her time for patients and parents at RMH. Not surprisingly, she said my shoulders were very tight and suggested I do some shoulder rolls.
Lest anyone be tempted to feel sorry for me, please know that in addition to my massage and chocolate, I was also blessed with a steak and baked potato dinner and an ice cream sundae all thanks to McDonalds who provided this meal at RMH. I am currently enjoying my tea as I type and watch the lights on the C.N. Tower and listen to music that proclaims Jesus' faithfulness. I had a wonderful snuggle and snooze with Josiah this afternoon and afterwards I discovered ...
... (I saved the best for last as a reward for those who kept reading my novel) ... that Josiah cut his first tooth!!! How exciting is that!? The medical staff didn't seem quite as excited as me but that's okay! The nurses kept talking about how much better Josiah looks and how great he's doing.
Okay, actually the best news is that Emma Stewart was moved out of PICU and to the ward. Thank You Lord!
Time to pump and then go to sleep. Thanks for your prayers! We are so grateful for all God has done and continues to do.
Blessings,
Elizabeth
Monday 17 September 2012
A nice visit
I had a nice visit with my pastor and his wife tonight. They were each able to come in and pray with Josiah. He opened his eyes to say hi to both of them. There isn't a lot of news today. Josiah had another ultrasound of his diaphragm this morning but the results were good.
The current prayer requests are:
Blessings
Elizabeth
The current prayer requests are:
- That Josiah would tolerate being fully weaned from his morphine and diazepam
- That Josiah's chylothorax would be healed
- That Josiah would be able to breath on his own (he's currently on Bi-PAP and they weren't able to wean his settings at all today)
- That Josiah would not need additional surgery
- That the "peace of God, which passeth all understanding" would continue to be ours
Blessings
Elizabeth
Sunday 16 September 2012
On Bi-PAP
This morning Isaac woke up thinking about the farm. He was more than happy to tell his sleepy mommy about the animals he'd seen and the sounds they make.
I called the night nurse before shift change this morning. She said that during a third big suction Josiah's sats had dropped to the 60s and did not recover so they put him on Bi-PAP. He then slept all night and was still on Bi-PAP when I left him tonight. He was allowed to just rest today. He hasn't needed any extra sedation and he has tolerated the weaning of his drugs.
Graham, Isaac and I walked to church this morning. Now that Graham is only here on the weekends, we don't have in and out privileges in the parking lot so we're trying not to drive more than necessary. There is a nice playground between the church location and RMH so Isaac was able to practice his climbing skills before lunch.
Graham held Josiah this afternoon while I napped with Isaac. Then we met at Swiss Chalet with Graham's parents and afterward Graham's mom was able to hold Josiah.
It's time to pump and then go to sleep. It's great to know that we're in your hearts and prayers - thank you!
Blessings,
Elizabeth
I called the night nurse before shift change this morning. She said that during a third big suction Josiah's sats had dropped to the 60s and did not recover so they put him on Bi-PAP. He then slept all night and was still on Bi-PAP when I left him tonight. He was allowed to just rest today. He hasn't needed any extra sedation and he has tolerated the weaning of his drugs.
Graham, Isaac and I walked to church this morning. Now that Graham is only here on the weekends, we don't have in and out privileges in the parking lot so we're trying not to drive more than necessary. There is a nice playground between the church location and RMH so Isaac was able to practice his climbing skills before lunch.
Graham held Josiah this afternoon while I napped with Isaac. Then we met at Swiss Chalet with Graham's parents and afterward Graham's mom was able to hold Josiah.
It's time to pump and then go to sleep. It's great to know that we're in your hearts and prayers - thank you!
Blessings,
Elizabeth
Saturday 15 September 2012
Farm Fun
Today we managed to break out of the confines of RMH and SickKids and ventured to Riverdale Farm with Isaac. He enjoyed seeing the horse, donkey, cows, pigs, sheeps, goats, chickens, cat and turkeys. He now loves saying "gobble, gobble" like a turkey and is really good at imitating a cow.
Josiah was extubated in the early afternoon, and placed directly on CPAP. He wears the same little nose mask that he wore previously. The respiratory therapist described what CPAP feels like as "holding your head out a car window while driving". The nurses said tonight that his latest blood work came back looking good. They are hoping he has an uneventful night and is able to get some rest. He's looking around a lot these days, so they put a cloth over his eyes to hopefully make it dark enough for a sleep.
We plan on attending church in the morning and then look forward to an afternoon visit with Graham's parents, before Graham and Isaac head back to Kitchener in the evening. Thankfully Graham and Isaac have always had great travels to and from SickKids.
We are constantly reminded that we are not the only ones facing a difficult journey with a child. We met Jamie Stewart (pastor at KRT) this weekend, as his daughter Emma is at SickKids with Leukemia. We are praying with them for a miracle for Emma.
Thanks again for all your prayers and support.
Blessings,
Graham and Elizabeth
Josiah was extubated in the early afternoon, and placed directly on CPAP. He wears the same little nose mask that he wore previously. The respiratory therapist described what CPAP feels like as "holding your head out a car window while driving". The nurses said tonight that his latest blood work came back looking good. They are hoping he has an uneventful night and is able to get some rest. He's looking around a lot these days, so they put a cloth over his eyes to hopefully make it dark enough for a sleep.
We plan on attending church in the morning and then look forward to an afternoon visit with Graham's parents, before Graham and Isaac head back to Kitchener in the evening. Thankfully Graham and Isaac have always had great travels to and from SickKids.
We are constantly reminded that we are not the only ones facing a difficult journey with a child. We met Jamie Stewart (pastor at KRT) this weekend, as his daughter Emma is at SickKids with Leukemia. We are praying with them for a miracle for Emma.
Thanks again for all your prayers and support.
Blessings,
Graham and Elizabeth
Friday 14 September 2012
Watching and Waiting
I'm typing this in the washroom as Isaac is sleeping in the main room and the lights are off. Graham and Isaac arrived around 9:00 PM. Tonight was the first time we were able to get Isaac from the car straight to the bed without a long wakeful period. His eyes were only open for a few moments. He's usually a boy on the go so I love carrying him in that semi-asleep state when he snuggles into me.
Graham went to park the car at SickKids and then he'll sit with Josiah a while before walking back here. I suggested that he give Josiah a mouth swab if he's awake. This is Josiah's one treat so I love to give these to him. It's a little pink sponge on the end of a lollipop stick. I immerse it in water and put it in his mouth and he loves to bite it with his gums. It's nice to feel like I bring him a little bit of pleasure.
Josiah had his head MRI done today and it went well though I don't expect the results until next week. I saw Josiah's cardiologist the other day and he said I should take the results with a grain of salt as they can't predict future abilities. There were a few times today when Josiah had his eyes wide open today but I still can't say that he's looked at me and engaged me or looked at me the way he used to. I'm sorry to say that I spent some time feeling sad about potential results instead of just waiting and trusting and just dealing with things as they happen.
The lovely chaplain dropped by this afternoon. I told him that I didn't know if I would get to take home the boy I fell in love with over four months, or if I would need to take home a different boy and fall in love with him. Well, the song we've sung to him since his birth starts with, "We'll love you forever" and we certainly will. I'm someone who needs closure. I like to say and wave good-bye and blow kisses. If we find out that Josiah has changed, it's like I didn't get to say good-bye. I want to see that same beautiful smile ....
Josiah is being weaned of his morphine and diazepam on alternate days. I would really like him to be weaned as much as possible before we head to the ward. The plan is to try to extubate Josiah tomorrow morning. During rounds the fellow suggested that we could extubate tonight but the staff physician looked at my face and said it could wait until the morning.
I watched the nurse give Josiah his enoxparin shot tonight. She said I would be welcome to try to give the injections when I want. I forgot to bring back some needles. She suggested I could practice on an orange.
I learned tonight that Josiah is actually on three different antibiotics. His chest x-ray looks better than it did a couple of days ago. The physio is helping.
We're going to have a great weekend together. Josiah's room and the whole unit is very busy right now so I'm not sure if we'll be able to get Isaac in to see Josiah. Thank you so much for all your support and prayers. We are held safely in God's arms of love. I don't want to think what this would be like without Jesus.
Blessings,
Elizabeth
Isaiah 26:3 "You will keep in perfect peace, whose mind is stayed on You, because he trusts in You."
Graham went to park the car at SickKids and then he'll sit with Josiah a while before walking back here. I suggested that he give Josiah a mouth swab if he's awake. This is Josiah's one treat so I love to give these to him. It's a little pink sponge on the end of a lollipop stick. I immerse it in water and put it in his mouth and he loves to bite it with his gums. It's nice to feel like I bring him a little bit of pleasure.
Josiah had his head MRI done today and it went well though I don't expect the results until next week. I saw Josiah's cardiologist the other day and he said I should take the results with a grain of salt as they can't predict future abilities. There were a few times today when Josiah had his eyes wide open today but I still can't say that he's looked at me and engaged me or looked at me the way he used to. I'm sorry to say that I spent some time feeling sad about potential results instead of just waiting and trusting and just dealing with things as they happen.
The lovely chaplain dropped by this afternoon. I told him that I didn't know if I would get to take home the boy I fell in love with over four months, or if I would need to take home a different boy and fall in love with him. Well, the song we've sung to him since his birth starts with, "We'll love you forever" and we certainly will. I'm someone who needs closure. I like to say and wave good-bye and blow kisses. If we find out that Josiah has changed, it's like I didn't get to say good-bye. I want to see that same beautiful smile ....
Josiah is being weaned of his morphine and diazepam on alternate days. I would really like him to be weaned as much as possible before we head to the ward. The plan is to try to extubate Josiah tomorrow morning. During rounds the fellow suggested that we could extubate tonight but the staff physician looked at my face and said it could wait until the morning.
I watched the nurse give Josiah his enoxparin shot tonight. She said I would be welcome to try to give the injections when I want. I forgot to bring back some needles. She suggested I could practice on an orange.
I learned tonight that Josiah is actually on three different antibiotics. His chest x-ray looks better than it did a couple of days ago. The physio is helping.
We're going to have a great weekend together. Josiah's room and the whole unit is very busy right now so I'm not sure if we'll be able to get Isaac in to see Josiah. Thank you so much for all your support and prayers. We are held safely in God's arms of love. I don't want to think what this would be like without Jesus.
Blessings,
Elizabeth
Isaiah 26:3 "You will keep in perfect peace, whose mind is stayed on You, because he trusts in You."
Thursday 13 September 2012
Five Months Old!
Josiah turned five months old today and had a much better day than yesterday. It was great to walk into his room this morning and see him relaxed. He had some sedation in the morning but he didn't need extra sedation for the rest of the day. They kept his morphine dose the same today but I expect they'll start weaning again tomorrow.
The intubation went well last night but sometime in the night he had a fever so they started him on antibiotics. He has an infection in his lungs. His blood pressure was also low so they gave him some medication for that. He wasn't peeing much last night so they inserted a catheter and also put him on some lasix and he was peeing well today. This morning they put him on additional antibiotics and they repeated a number of cultures. He's had chest physio today and they were able to get a lot of secretions out.
He had an EP (Evoked Potential) study done to test the visual and somatosensory nerve pathways. We don't have the results yet from this. He was given more blood. They want his haemoglobin to be above 140 to maximize the capacity of the blood to carry oxygen. His haemoglobin was at 134.
I bought Josiah a balloon for his "birthday". It has Winnie the Pooh on it holding an umbrella in the rain, smiling. There are a few rain storms in Josiah's life right now but he is safe in God's arms, dry beneath the umbrella.
It's time for bed. I'm excited to see Graham and Isaac tomorrow. There was a dinner tonight put on by the Pinball Clemens Foundation. Pinball Clemens is very friendly and kind. He was greeting everyone at the beginning and later he was cleaning up. The dinner was delicious.
Thanks for your prayers and support!
Blessings,
Elizabeth
The intubation went well last night but sometime in the night he had a fever so they started him on antibiotics. He has an infection in his lungs. His blood pressure was also low so they gave him some medication for that. He wasn't peeing much last night so they inserted a catheter and also put him on some lasix and he was peeing well today. This morning they put him on additional antibiotics and they repeated a number of cultures. He's had chest physio today and they were able to get a lot of secretions out.
He had an EP (Evoked Potential) study done to test the visual and somatosensory nerve pathways. We don't have the results yet from this. He was given more blood. They want his haemoglobin to be above 140 to maximize the capacity of the blood to carry oxygen. His haemoglobin was at 134.
I bought Josiah a balloon for his "birthday". It has Winnie the Pooh on it holding an umbrella in the rain, smiling. There are a few rain storms in Josiah's life right now but he is safe in God's arms, dry beneath the umbrella.
It's time for bed. I'm excited to see Graham and Isaac tomorrow. There was a dinner tonight put on by the Pinball Clemens Foundation. Pinball Clemens is very friendly and kind. He was greeting everyone at the beginning and later he was cleaning up. The dinner was delicious.
Thanks for your prayers and support!
Blessings,
Elizabeth
Wednesday 12 September 2012
Reintubated
The fellow just called me from SickKids to let me know that they are reintubating Josiah. He didn't have a good day today so I wasn't surprised by the news. It is a relief to know that he won't be struggling overnight. He had chest indrawing while breathing for most of the day and he was receiving a high percentage of oxygen.
When I arrived this morning I learned that Josiah had lost weight. He now weighs 5.77 kg. Shortly after signing my consent, he went to get his PICC line and that went very well. I asked about the second culture from his lung secretions and it again showed a bacteria but Josiah will only receive additional antibiotics if he gets a fever. After returning from his PICC procedure, his pacing wires were removed and he had an ultrasound of his diaphragm. Josiah's breathing then changed so he had a chest x-ray but the lungs were not collapsed, just somewhat congested. They were wondering if there was something wrong with his diaphragm that was affecting his breathing but the ultrasound looked good.
The nurse turned away physio in the early afternoon as Josiah was not stable. The nurses took out the central line in his groin as well as the ART line in his right arm as it was leaking. He also had an ECG in the afternoon. I was able to hold Josiah again around 6:00 PM. He was a little more content for some of our cuddle.
The thought is that he had too much going on and had to come off of the BiPAP too much this morning and that threw him off. In terms of his breathing and saturation levels, there are two hypotheses that I have heard: 1) Josiah just needs more time as he is weak from being on the muscle relaxant for so long, or 2) Josiah's shunt is too big so the blood vessels in his lungs are dilated and possibly obstructing an airway.
He was off heparin for a while today so I trimmed his nails with clippers. Tonight he transitioned off heparin to start enoxparin. He didn't seem to even notice the injection.
I'm tired and falling asleep while typing. I left Josiah at 7:00 and arrived "home" in time to say good-night to Isaac via Facetime. I then pumped milk after which I went to the kitchen and had some chats as well as a tasty dinner. There was Home to Dinner the last two nights and I was able to enjoy leftovers when I arrived but I don't know who made the food as the signs were gone.
Thank you so much for your continued support and prayers. It's definitely harder to watch him struggling than it was when he was on muscle relaxant. I saw the Christian grandmother again tonight and she gave me a hug and said a prayer. God provides for all our needs.
Blessings,
Elizabeth
When I arrived this morning I learned that Josiah had lost weight. He now weighs 5.77 kg. Shortly after signing my consent, he went to get his PICC line and that went very well. I asked about the second culture from his lung secretions and it again showed a bacteria but Josiah will only receive additional antibiotics if he gets a fever. After returning from his PICC procedure, his pacing wires were removed and he had an ultrasound of his diaphragm. Josiah's breathing then changed so he had a chest x-ray but the lungs were not collapsed, just somewhat congested. They were wondering if there was something wrong with his diaphragm that was affecting his breathing but the ultrasound looked good.
The nurse turned away physio in the early afternoon as Josiah was not stable. The nurses took out the central line in his groin as well as the ART line in his right arm as it was leaking. He also had an ECG in the afternoon. I was able to hold Josiah again around 6:00 PM. He was a little more content for some of our cuddle.
The thought is that he had too much going on and had to come off of the BiPAP too much this morning and that threw him off. In terms of his breathing and saturation levels, there are two hypotheses that I have heard: 1) Josiah just needs more time as he is weak from being on the muscle relaxant for so long, or 2) Josiah's shunt is too big so the blood vessels in his lungs are dilated and possibly obstructing an airway.
He was off heparin for a while today so I trimmed his nails with clippers. Tonight he transitioned off heparin to start enoxparin. He didn't seem to even notice the injection.
I'm tired and falling asleep while typing. I left Josiah at 7:00 and arrived "home" in time to say good-night to Isaac via Facetime. I then pumped milk after which I went to the kitchen and had some chats as well as a tasty dinner. There was Home to Dinner the last two nights and I was able to enjoy leftovers when I arrived but I don't know who made the food as the signs were gone.
Thank you so much for your continued support and prayers. It's definitely harder to watch him struggling than it was when he was on muscle relaxant. I saw the Christian grandmother again tonight and she gave me a hug and said a prayer. God provides for all our needs.
Blessings,
Elizabeth
Withdrawal
I mentioned in last night's post that Josiah was quite restless yesterday. I called the night nurse and she noticed the same thing during the night. She gave him some ativan but that didn't work so they ended up giving him extra morphine. The nurse is going to suggest that they stop weaning his morphine for a day or two. So, please pray that Josiah will adapt quickly and easily to not having morphine and that his symptoms will abate.
Thanks so much! I'm heading over early to see him before he gets his PICC line. Please pray that this procedure will go well. Have a great day!
Blessings,
Elizabeth
Thanks so much! I'm heading over early to see him before he gets his PICC line. Please pray that this procedure will go well. Have a great day!
Blessings,
Elizabeth
Tuesday 11 September 2012
Growing up
Josiah has been NPO since 6 AM yesterday. I thought NPO stood for "nothing passes orally" which is the correct meaning but according to Wikipedia it actually stands for "nil per os" which is Latin for "nothing by mouth."
I can't remember if I wrote about this previously but according to the care map for chylothorax (which he developed due to his lymph system being nicked in his first surgery), if Josiah's chest drainage increases with feeds, he should be NPO for five days. This morning the staff physician decided that Josiah should do this so he'll only get lipids and TPN (total parenteral nutrition) into his veins for five to six days. This may have had something to do with why his blood pressure was up today. I think he would prefer to have some food in his tummy.
Josiah had two rounds of physio today and should have three rounds tomorrow. It is helping to loosen his secretions. The x-ray this morning showed that both upper lobes (right and left) had collapsed a little. The fellow told me this morning that Josiah is on a lot of breathing support. She said there are four levels of support: 1) Intubation - breathing tube; 2) BiPAP - Bilevel Positive Airway Pressure; 3) CPAP; and 4) Oxygen. Josiah is receiving BiPAP so he has pressure keeping his lungs somewhat open and when he initiates breathing, there is additional pressure. It's something like that anyway. He can't go to the ward unless he's only on oxygen or just breathing air.
Neurology came and started to assess Josiah. They will recommend an MRI which will need to be approved by the cardiologist but I don't think that will be a problem. They seemed to see good signs in that all of Josiah's limbs are moving and his eyes are tracking and he has good reflexes - however, they can't do a good assessment until he's fully off of the morphine (he's at 32 today and should go down to 25 at noon tomorrow). It sounds like they will be following up regularly.
One of the grandmothers staying at RMH gave me some Bible verses today so it was nice to discover that she and her family are Christians.
I'll end with a line from Keith Green's song, If You Love The Lord: "If you love the Lord you will love his will for you. Instead of questions why, there will be praise for all he brings you through."
We praise the Lord for all He's done and continues to do. Thanks for your support and prayers!
Blessings,
Elizabeth
Monday 10 September 2012
Extubated
Josiah was extubated around 4:00 this afternoon. He was able to tolerate just having his head in an oxygen tent for a while but then his breathing became more congested and laboured so he was switched to VPAP (variable positive airway pressure machine). This looks like a little mask over his nose with straps around his head to keep it in place. He wasn't too impressed with all the suctioning he needed so his blood pressure was high for a while. He was sleeping when I left him at 7:00 (shift change).
He's going to get his pace wires out tomorrow. They've also put in a requisition for a PICC line in case we need it. It sounds like they may stop his heparin tomorrow and start his twice daily injections that replace the heparin. These are injections that we will need to give him at home when we leave. He'll need these as long as he has the shunt.
Someone from neurology should come and see Josiah this week in order to put a plan in place for neurological assessment including an MRI.
I've been reading No Compromise: The Life Story of Keith Green on Graham's iPod while I pump. I'm listening to his song, "Song for Josiah" while I type.
I grieve for the parents of Baby Angelo. I believe he passed away. Please pray for his family.
Thank you for all your prayers!
Blessings,
Elizabeth
He's going to get his pace wires out tomorrow. They've also put in a requisition for a PICC line in case we need it. It sounds like they may stop his heparin tomorrow and start his twice daily injections that replace the heparin. These are injections that we will need to give him at home when we leave. He'll need these as long as he has the shunt.
Someone from neurology should come and see Josiah this week in order to put a plan in place for neurological assessment including an MRI.
I've been reading No Compromise: The Life Story of Keith Green on Graham's iPod while I pump. I'm listening to his song, "Song for Josiah" while I type.
I grieve for the parents of Baby Angelo. I believe he passed away. Please pray for his family.
Thank you for all your prayers!
Blessings,
Elizabeth
Sunday 9 September 2012
Another weekend over
I'm posting this from the hospital as I await my walk home. Security is just running a test of some sort but they should be able to walk me back in around twenty minutes.
I said good-bye to Graham and Isaac around 7:30 tonight. Hopefully Isaac will have a good transition back to his grandparent's home. He had a great sleep on his mattress last night ... until around 4:15 AM when he woke up wired! We were able to hold off the milk until around 5:00 AM and I think it was around 5:30 when we caved in and put a dvd on so that Graham and I could try to get some more sleep! How did I become a dvd parent?!
We ventured to The Meeting House for church this morning and enjoyed the sermon on faith. We were challenged to live lives of full (not empty) faith which was defined in four bullet points: 1) Believing that God exists, that he's good, and can be trusted; 2) Pursuing God every day, and doing what he says; 3) Living counter-culturally, even when it seems crazy [I believe the context was when God tells you to do something]; and 4) Tuning your perspective into God's bigger plans.
I've been a Christian a long time. Frankly, the first bullet point is easy to do because God has shown Himself good and faithful time and time again even in challenging circumstances. I wish I could say I was doing a better job in the other three bullet points; however, I have a long way to go.
Josiah had a fever this morning but tylenol and ice did the trick. His temperature tonight was 36.5 degrees. His x-ray this morning showed an issue with the lungs and one of the cultures from his lungs looks like there might be something there - we should know more tomorrow. He wasn't extubated today but if his x-ray and cultures are good in the morning, he may be extubated tomorrow. I noticed that his oxygen level was 45% all day so I asked the fellow if there was any reason for it not to be weaned and he said there wasn't so he lowered it to 35%. Josiah was looking a little pale tonight so he'll get some more blood.
I filed Josiah's nails tonight. We were told not to use clippers as he's on heparin, a blood thinner, and I guess there's a story about nail clipping that went badly.
Over a year ago I read Ann Voskamp's book, One Thousand Gifts. I keep meaning to reread it. I was just looking at some quotations of hers online as one of her quotations was used in church this morning. One of the nurses thought I was worried about something to do with Josiah earlier this week. I said I wasn't worried and that I had seem him much worse. I like this quotation: "Worry is the facade of taking action when prayer really is." It's so true that we can take time and mental energy worrying or we can talk to Jesus. I'm not saying I never worry but what a beautiful gift from God to know that His ears are always open to our cries, fears, and heartaches. One more quotation from the book: "Lament is a cry of belief in a good God, a God who has His ear to our hearts, a God who transfigures the ugly into beauty. Complaint is the bitter howl of unbelief in any benevolent God in this moment, a distrust in the love-beat of the Father's heart." We serve a good God. We are blessed beyond measure.
It's time to head back to RMH. Good night and thank you for taking action by praying!
Blessings,
Elizabeth
I said good-bye to Graham and Isaac around 7:30 tonight. Hopefully Isaac will have a good transition back to his grandparent's home. He had a great sleep on his mattress last night ... until around 4:15 AM when he woke up wired! We were able to hold off the milk until around 5:00 AM and I think it was around 5:30 when we caved in and put a dvd on so that Graham and I could try to get some more sleep! How did I become a dvd parent?!
We ventured to The Meeting House for church this morning and enjoyed the sermon on faith. We were challenged to live lives of full (not empty) faith which was defined in four bullet points: 1) Believing that God exists, that he's good, and can be trusted; 2) Pursuing God every day, and doing what he says; 3) Living counter-culturally, even when it seems crazy [I believe the context was when God tells you to do something]; and 4) Tuning your perspective into God's bigger plans.
I've been a Christian a long time. Frankly, the first bullet point is easy to do because God has shown Himself good and faithful time and time again even in challenging circumstances. I wish I could say I was doing a better job in the other three bullet points; however, I have a long way to go.
Josiah had a fever this morning but tylenol and ice did the trick. His temperature tonight was 36.5 degrees. His x-ray this morning showed an issue with the lungs and one of the cultures from his lungs looks like there might be something there - we should know more tomorrow. He wasn't extubated today but if his x-ray and cultures are good in the morning, he may be extubated tomorrow. I noticed that his oxygen level was 45% all day so I asked the fellow if there was any reason for it not to be weaned and he said there wasn't so he lowered it to 35%. Josiah was looking a little pale tonight so he'll get some more blood.
I filed Josiah's nails tonight. We were told not to use clippers as he's on heparin, a blood thinner, and I guess there's a story about nail clipping that went badly.
Over a year ago I read Ann Voskamp's book, One Thousand Gifts. I keep meaning to reread it. I was just looking at some quotations of hers online as one of her quotations was used in church this morning. One of the nurses thought I was worried about something to do with Josiah earlier this week. I said I wasn't worried and that I had seem him much worse. I like this quotation: "Worry is the facade of taking action when prayer really is." It's so true that we can take time and mental energy worrying or we can talk to Jesus. I'm not saying I never worry but what a beautiful gift from God to know that His ears are always open to our cries, fears, and heartaches. One more quotation from the book: "Lament is a cry of belief in a good God, a God who has His ear to our hearts, a God who transfigures the ugly into beauty. Complaint is the bitter howl of unbelief in any benevolent God in this moment, a distrust in the love-beat of the Father's heart." We serve a good God. We are blessed beyond measure.
It's time to head back to RMH. Good night and thank you for taking action by praying!
Blessings,
Elizabeth
Saturday 8 September 2012
Another quiet day
Guess who enjoyed sleeping on his mattress on the floor last night? That's right - his name is Graham! Isaac is much too smart to fall for, "Wow - look at your special bed on the floor!" However, Daddy obviously made it look very comfortable because tonight Isaac asked to sleep on the floor.
As per the pharmacist's instructions, Josiah was weaned another seven units of morphine today and seemed to tolerate it. Both of his central lines to his right atrium and his catheter were removed this morning. He had more physio this afternoon and the nurse said he seemed like he enjoyed it. He hasn't had a fever all day and his x-ray looked clear. His white blood cells were a little high and his CRP test results were slightly above the normal range (by 0.1) but we won't get the results from his cultures until tomorrow or the next day. I would love it if Josiah's eyes focused better together. The fellow said this isn't surprising given the amount of sedation Josiah is on but it could also indicate neurological issues so we're praying against that.
The fellow told me that that the next goal is extubation. Josiah is doing the breathing on his own now but he is still breathing in 45% oxygen (room air is 21%). He would be extubated to CPAP which is a mask on his face. He has never had this before. The fellow told me they might consider extubating him tomorrow (Sunday) but I know there are other medical personnel who think that would be too early as they are concerned about his lack of muscle as he has been on muscle relaxant for so long. His coughs are very weak due to his lack of muscle and this makes it harder to remove secretions.
Thanks for continuing with us on this journey. We are so blessed by our family and friends and all of your prayers! It's time to go back to bed.
Blessings,
Elizabeth
As per the pharmacist's instructions, Josiah was weaned another seven units of morphine today and seemed to tolerate it. Both of his central lines to his right atrium and his catheter were removed this morning. He had more physio this afternoon and the nurse said he seemed like he enjoyed it. He hasn't had a fever all day and his x-ray looked clear. His white blood cells were a little high and his CRP test results were slightly above the normal range (by 0.1) but we won't get the results from his cultures until tomorrow or the next day. I would love it if Josiah's eyes focused better together. The fellow said this isn't surprising given the amount of sedation Josiah is on but it could also indicate neurological issues so we're praying against that.
The fellow told me that that the next goal is extubation. Josiah is doing the breathing on his own now but he is still breathing in 45% oxygen (room air is 21%). He would be extubated to CPAP which is a mask on his face. He has never had this before. The fellow told me they might consider extubating him tomorrow (Sunday) but I know there are other medical personnel who think that would be too early as they are concerned about his lack of muscle as he has been on muscle relaxant for so long. His coughs are very weak due to his lack of muscle and this makes it harder to remove secretions.
Thanks for continuing with us on this journey. We are so blessed by our family and friends and all of your prayers! It's time to go back to bed.
Blessings,
Elizabeth
Friday 7 September 2012
Weaning Morphine
Today Josiah was weaned from being on 70 of morphine to 60 of morphine (I forget the units but it's a lot of morphine). There was a procedure going on in his room this morning with another patient so I wasn't able to see him until around noon. When I did see him he looked a lot calmer than yesterday but I found he became a little more restless as the day went on. His eyes looked much less glassy than yesterday.
This morning's x-ray showed that his right lung was partially collapsed so he is now having physio twice daily to try to remove more of the secretions from this lung. His one eye is a little red and he had a fever tonight so they've sent a bunch of blood work and samples to culture and we should find out the results of those tests between 24 and 48 hours. His two head sores are looking better.
In terms of his feeds, he is now given one ounce of portagen every three hours via his NG tube. With the increase in the amount of his feeds over the last couple of days, it is looking like his chest drainage may also be increasing. If this continues it could be a sign that the area of his lymph system that was nicked during the surgery on the 15th may not be healing. If they decide that's what's happening, the care map for this condition directs that he not have any oral feeds for five days. We'll see what happens overnight and tomorrow.
I saw Josiah's surgeon briefly today and he said he was happier with Josiah's numbers. A lot of the nurses are coming by his bed and saying how much better he looks. It was great to have my parents visit today. My dad thanked my nurse for all the care being given to Josiah and she answered, "We love him." She also said that if his lung looks better tomorrow, we could try to hold him.
Graham and Isaac are on the way. I've put a mattress on the floor and I'm hoping Isaac will be excited to sleep in his own bed tonight. It will great to all be in the same city for the weekend.
It's time to put some things out of Isaac's reach so I'll say good-night. Thanks for reading and for all your support. We appreciate your love and prayers!
Blessings,
Elizabeth
This morning's x-ray showed that his right lung was partially collapsed so he is now having physio twice daily to try to remove more of the secretions from this lung. His one eye is a little red and he had a fever tonight so they've sent a bunch of blood work and samples to culture and we should find out the results of those tests between 24 and 48 hours. His two head sores are looking better.
In terms of his feeds, he is now given one ounce of portagen every three hours via his NG tube. With the increase in the amount of his feeds over the last couple of days, it is looking like his chest drainage may also be increasing. If this continues it could be a sign that the area of his lymph system that was nicked during the surgery on the 15th may not be healing. If they decide that's what's happening, the care map for this condition directs that he not have any oral feeds for five days. We'll see what happens overnight and tomorrow.
I saw Josiah's surgeon briefly today and he said he was happier with Josiah's numbers. A lot of the nurses are coming by his bed and saying how much better he looks. It was great to have my parents visit today. My dad thanked my nurse for all the care being given to Josiah and she answered, "We love him." She also said that if his lung looks better tomorrow, we could try to hold him.
Graham and Isaac are on the way. I've put a mattress on the floor and I'm hoping Isaac will be excited to sleep in his own bed tonight. It will great to all be in the same city for the weekend.
It's time to put some things out of Isaac's reach so I'll say good-night. Thanks for reading and for all your support. We appreciate your love and prayers!
Blessings,
Elizabeth
Thursday 6 September 2012
Eyes Open!
Once again, it is wonderful to see my boy's eyes! They stopped the muscle relaxant this morning and Josiah seems to be tolerating it. His sats and NIRS were a little low at times but when I left him tonight his numbers were better. He has seemed quite restless and his feet move a lot but it sounds like that's normal behaviour after coming off of the muscle relaxant. He is still on a lot of sedation so although his eyes were open, they still looked glassy and he wasn't focusing too well.
I met with the nurse practitioner today. She told me previously that she needed to have a talk with me regarding the time he was on ECMO. There are followup protocols for kids who have been on ECMO. First, he will have a hearing screen done before he leaves the hospital. Some children have hearing loss as a result of ECMO. Secondly, he will see a psychologist at SickKids about a year after being discharged in order to check his developmental progress and plug him into any resources he needs. We're clearly praying that the results of these screens are positive but we're also so thankful that he has access to these resources and any help he needs. If he hadn't gone on ECMO for those few hours we would have had to wait to see if one of his other health care providers had any concerns in order to be referred to a psychologist even though his saturation levels were much worse when he wasn't on ECMO.
I've hesitated whether or not to write the above information because I really don't want everyone trying to figure out if Josiah has developmental delays or asking me if he's hitting his milestones. I don't need that stress. However, I do want to give God the glory for all the good I see coming out of a bad situation. Granted, there are a lot of risks involved with ECMO, but in Josiah's case I have a list of benefits that came his way and for that I am truly thankful to Jesus. Also, this information will help you to pray for specifics.
I also met with the EP (electrophysiology) fellow this afternoon. They stopped the medication for Josiah's arrhythmias yesterday; however, the medication has a long half-life so it will be in his body for months. They had found at least three different arrhythmias in Josiah's heart that happened because he was stressed. Though he hasn't had the arrhythmias for a couple of days, he told me that there is at least one short circuit that is ready to go off and these often don't go away on their own. It's not a big emergency if it goes off; the heart rate would be in the 160s or 180s but it didn't seem to affect his pressures or other numbers. It would just tire out his heart which is something he doesn't need.
At a minimum the plan for home would be for me to check his heart rate once a day. He told me this would be easier to do with a stethoscope. (Note: I will feel very cool if I get to have a stethoscope). There is also the option of having medicine and more testing. He was leaning towards medicine but I'm thinking it would make sense to wait and see first. Of course, if the arrhythmia happens again in hospital, it probably means we need medicine. This is something else to pray about.
Graham and Isaac will head here tomorrow night for a weekend together. It will be great to see them. It's now time to pump and then put the light off. This schedule is tiring so I'm going to try to have a nap during the day while I can.
Thanks for your prayers!
Blessings,
Elizabeth
I met with the nurse practitioner today. She told me previously that she needed to have a talk with me regarding the time he was on ECMO. There are followup protocols for kids who have been on ECMO. First, he will have a hearing screen done before he leaves the hospital. Some children have hearing loss as a result of ECMO. Secondly, he will see a psychologist at SickKids about a year after being discharged in order to check his developmental progress and plug him into any resources he needs. We're clearly praying that the results of these screens are positive but we're also so thankful that he has access to these resources and any help he needs. If he hadn't gone on ECMO for those few hours we would have had to wait to see if one of his other health care providers had any concerns in order to be referred to a psychologist even though his saturation levels were much worse when he wasn't on ECMO.
I've hesitated whether or not to write the above information because I really don't want everyone trying to figure out if Josiah has developmental delays or asking me if he's hitting his milestones. I don't need that stress. However, I do want to give God the glory for all the good I see coming out of a bad situation. Granted, there are a lot of risks involved with ECMO, but in Josiah's case I have a list of benefits that came his way and for that I am truly thankful to Jesus. Also, this information will help you to pray for specifics.
I also met with the EP (electrophysiology) fellow this afternoon. They stopped the medication for Josiah's arrhythmias yesterday; however, the medication has a long half-life so it will be in his body for months. They had found at least three different arrhythmias in Josiah's heart that happened because he was stressed. Though he hasn't had the arrhythmias for a couple of days, he told me that there is at least one short circuit that is ready to go off and these often don't go away on their own. It's not a big emergency if it goes off; the heart rate would be in the 160s or 180s but it didn't seem to affect his pressures or other numbers. It would just tire out his heart which is something he doesn't need.
At a minimum the plan for home would be for me to check his heart rate once a day. He told me this would be easier to do with a stethoscope. (Note: I will feel very cool if I get to have a stethoscope). There is also the option of having medicine and more testing. He was leaning towards medicine but I'm thinking it would make sense to wait and see first. Of course, if the arrhythmia happens again in hospital, it probably means we need medicine. This is something else to pray about.
Graham and Isaac will head here tomorrow night for a weekend together. It will be great to see them. It's now time to pump and then put the light off. This schedule is tiring so I'm going to try to have a nap during the day while I can.
Thanks for your prayers!
Blessings,
Elizabeth
Wednesday 5 September 2012
Open and Shut
Josiah's chest is now closed. A surgical fellow did the procedure this morning and it all went well. Tonight when I left him most of his numbers were good. His NIRS numbers are a little low but it's unclear if it's just a bad reading. His temperature also reached 37.8 degrees so he has a big bag of ice on his head. It's quite normal for the temperature to be elevated for about 24 hours after closing the chest. It sounds like they will try to start lifting the muscle relaxant tomorrow. He has been on continuous profusion of muscle relaxant since his surgery. Our nurse said he may have some shakes and a hard time coming off of the medication so please pray about that. She said I'll probably see him trying to cry but of course with his tube in he can't make any noise.
I met with the dietitian to find out more about Josiah's feeds. He is currently on very small amounts of portagen as his lymph system was nicked during his first surgery on the15th. I had mentioned before that he'll need to be on portagen for six weeks. As it turns out, those six weeks don't start until all of his drainage tubes come out of his chest. The dietitian said an OT will work with us to help with Josiah's feeding when it's time to transition off the NG tube.
It was a beautiful day today. Yesterday I decided to get some regular blood work done that my doctor had ordered a few months ago. While in the waiting room it didn't take me long to start thinking, "Why is only one nurse on?" and "Why is the wait so long?" Fortunately God gently reminded me of where my son is and of the incredible care he is receiving and how blessed I am to be able to walk into a hospital and get blood work done after only a short wait in a comfortable chair. How quickly I lose site of reality.
After Josiah's chest was closed I noticed a little wound up thread on his chest. I asked the nurse about the thread. She said that if they determine he needs more room in his chest, they can pull up the chest bone with this suspension thread which would be tied to something over top of Josiah. Thus the bones and also his skin would be pulled away from his heart without needing to open up the chest. She said it sounds and looks a little barbaric. It's usually used shortly after the closure so we're hoping Josiah won't need it now that he's already gone about 12 hours since the procedure.
It's time to pump once more before going to sleep. My milk supply seems to be decreasing a little so please pray about that as well. I spoke with another mom who had a long stay in the CCCU and she said her milk supply decreased so much that her daughter can't breastfeed now.
Thanks so much for your support, emails, comments, prayers, and verses. We appreciate them all so much! God is so faithful and He's taking care of all of our needs.
Blessings,
Elizabeth
I met with the dietitian to find out more about Josiah's feeds. He is currently on very small amounts of portagen as his lymph system was nicked during his first surgery on the15th. I had mentioned before that he'll need to be on portagen for six weeks. As it turns out, those six weeks don't start until all of his drainage tubes come out of his chest. The dietitian said an OT will work with us to help with Josiah's feeding when it's time to transition off the NG tube.
It was a beautiful day today. Yesterday I decided to get some regular blood work done that my doctor had ordered a few months ago. While in the waiting room it didn't take me long to start thinking, "Why is only one nurse on?" and "Why is the wait so long?" Fortunately God gently reminded me of where my son is and of the incredible care he is receiving and how blessed I am to be able to walk into a hospital and get blood work done after only a short wait in a comfortable chair. How quickly I lose site of reality.
After Josiah's chest was closed I noticed a little wound up thread on his chest. I asked the nurse about the thread. She said that if they determine he needs more room in his chest, they can pull up the chest bone with this suspension thread which would be tied to something over top of Josiah. Thus the bones and also his skin would be pulled away from his heart without needing to open up the chest. She said it sounds and looks a little barbaric. It's usually used shortly after the closure so we're hoping Josiah won't need it now that he's already gone about 12 hours since the procedure.
It's time to pump once more before going to sleep. My milk supply seems to be decreasing a little so please pray about that as well. I spoke with another mom who had a long stay in the CCCU and she said her milk supply decreased so much that her daughter can't breastfeed now.
Thanks so much for your support, emails, comments, prayers, and verses. We appreciate them all so much! God is so faithful and He's taking care of all of our needs.
Blessings,
Elizabeth
Tuesday 4 September 2012
Decreasing Fluid
Today was another slow day of decreasing Josiah's fluid. The surgeon saw Josiah this morning and decided that he needed to lose more fluid before trying to close his chest. If he loses enough fluid tonight, they might be able to close his chest completely tomorrow.
At around 11:30 this morning, they were able to pace him out of his high heart rate. The rest of the day his heart rate was around 123 bpm. It's so nice to see it lower.
Thanks to WestJet I didn't need to make myself dinner tonight.
We had a nurse today whom we last had in April. She told me this when I called her this morning before seeing her. She must have recognized Josiah's name. She said she had thought of us recently and wondered how we were doing. It was nice to see her again.
I'm looking forward to more progress tomorrow.
Thanks so much for your support and prayers everyone!
Blessings,
Elizabeth
At around 11:30 this morning, they were able to pace him out of his high heart rate. The rest of the day his heart rate was around 123 bpm. It's so nice to see it lower.
Thanks to WestJet I didn't need to make myself dinner tonight.
We had a nurse today whom we last had in April. She told me this when I called her this morning before seeing her. She must have recognized Josiah's name. She said she had thought of us recently and wondered how we were doing. It was nice to see her again.
I'm looking forward to more progress tomorrow.
Thanks so much for your support and prayers everyone!
Blessings,
Elizabeth
Monday 3 September 2012
Arrhythmias
An EP fellow was once again trying to figure out Josiah's arrhythmias today. He seems to have at least three different arrhythmias. The EP fellow said he is able to pace him out of them using the pacemaker in around ten seconds. Our CCCU fellow was able to pace him out when his heart rate was in the 160s but then was unable to pace him out of it when it rose to around 180. I suspect I'll learn more tomorrow.
Josiah was having an echocardiogram when I left him shortly after 6:00 PM. If the results of the echo are good, the charge nurse told me that they will shorten the stent keeping his chest open in order to get closer to closing it up. They may shorten the stent each day so that it's not a big change all at once.
Josiah is peeing and is on two diuretics but he is still quite puffy. The kidneys are clearly working but they may not be in an optimal condition due to previously being on bypass and ECMO. He isn't absorbing his small feeds yet and he is also not having bowel movements. I don't think this is overly surprising as he is on muscle relaxant but he is now on a medication which should make him have a bowel movement.
Graham and Isaac headed back to Kitchener shortly after 1:00 PM. Graham has had a cold the last couple of days so he wasn't able to see Josiah yesterday or today. It was nice to all be together but I think we'll all have a better sleep tonight as Isaac won't be in the bed. Let's just say he doesn't sleep as well here.
I hope you all sleep well tonight - especially all those returning to school tomorrow. Thanks so much for your prayers!
Blessings,
Elizabeth
Josiah was having an echocardiogram when I left him shortly after 6:00 PM. If the results of the echo are good, the charge nurse told me that they will shorten the stent keeping his chest open in order to get closer to closing it up. They may shorten the stent each day so that it's not a big change all at once.
Josiah is peeing and is on two diuretics but he is still quite puffy. The kidneys are clearly working but they may not be in an optimal condition due to previously being on bypass and ECMO. He isn't absorbing his small feeds yet and he is also not having bowel movements. I don't think this is overly surprising as he is on muscle relaxant but he is now on a medication which should make him have a bowel movement.
Graham and Isaac headed back to Kitchener shortly after 1:00 PM. Graham has had a cold the last couple of days so he wasn't able to see Josiah yesterday or today. It was nice to all be together but I think we'll all have a better sleep tonight as Isaac won't be in the bed. Let's just say he doesn't sleep as well here.
I hope you all sleep well tonight - especially all those returning to school tomorrow. Thanks so much for your prayers!
Blessings,
Elizabeth
Sunday 2 September 2012
Cannulae Removed
Josiah's cannulae were removed this morning. Each cannula had been left in his chest after his last surgery so that if he needed to be hooked up to ECMO it wouldn't take as long. This was a sterile procedure done by a surgeon in Josiah's room.
All of Josiah's numbers look good except for his high heart rate. I think it was around 180 when I left him. His oxygen rate on the ventilator is the same as room air - 21%, so that's good news as well. He has secretions in his lungs that need to be suctioned but it's hard to get them up as he can't cough them up because he is on muscle relaxant. The nurses put saline down his tube to help with suctioning. Thankfully the secretions don't show any sign of infection. We thank the Lord that Josiah hasn't had any infections due to his stay in the CCCU.
An infection is one of the risks of having an open chest. We've received some emails asking if Josiah's chest is still open. It is open with a transparent covering. A piece of gauze just sits on top. It's amazing to be able to see his heart pumping. The nurse said he needs to get rid of more of his fluid before they'll close up his chest. When they do close up his chest, a surgical fellow will sew him up in his room. When these sterile procedures happen, all of the parents and visitors of any of the children in the room must be absent from the room.
Josiah's surgeon has been on holiday. In fact I believe the holiday started late due to Josiah. Our nurse told me that the surgeon has called the last two days to see how Josiah is doing. I also learned that two other heart surgeries were bumped last Wednesday due to Josiah's surgery. Some of the nurses were able to watch some of Josiah's surgery as the surgeon wears a video camera that provides a live feed to the nursing station. This allows the nurses to know when to expect patients out of the OR.
My brother and sister-in-law and their wonderful girls came and blessed us with their presence and a delicious dinner. Both my brother and sister-in-law were able to see Josiah just before nursing change. It was great to see them all.
We enjoyed being at St. George the Martyr church this morning. We finally made it on time to a service - it started at 10:45. It was around a ten minute walk from RMH. How lovely to be able to walk to church.
I'm writing this in the washroom as the lights are off in the main room and I don't want to wake Isaac. Isaac did not sleep very well last night. He slept so lightly that we couldn't put him in the playpen so he "slept" between us. He's been in the playpen thus far tonight so hopefully we won't hear him until the morning.
Thank you for your prayers!
Blessings,
Elizabeth
All of Josiah's numbers look good except for his high heart rate. I think it was around 180 when I left him. His oxygen rate on the ventilator is the same as room air - 21%, so that's good news as well. He has secretions in his lungs that need to be suctioned but it's hard to get them up as he can't cough them up because he is on muscle relaxant. The nurses put saline down his tube to help with suctioning. Thankfully the secretions don't show any sign of infection. We thank the Lord that Josiah hasn't had any infections due to his stay in the CCCU.
An infection is one of the risks of having an open chest. We've received some emails asking if Josiah's chest is still open. It is open with a transparent covering. A piece of gauze just sits on top. It's amazing to be able to see his heart pumping. The nurse said he needs to get rid of more of his fluid before they'll close up his chest. When they do close up his chest, a surgical fellow will sew him up in his room. When these sterile procedures happen, all of the parents and visitors of any of the children in the room must be absent from the room.
Josiah's surgeon has been on holiday. In fact I believe the holiday started late due to Josiah. Our nurse told me that the surgeon has called the last two days to see how Josiah is doing. I also learned that two other heart surgeries were bumped last Wednesday due to Josiah's surgery. Some of the nurses were able to watch some of Josiah's surgery as the surgeon wears a video camera that provides a live feed to the nursing station. This allows the nurses to know when to expect patients out of the OR.
My brother and sister-in-law and their wonderful girls came and blessed us with their presence and a delicious dinner. Both my brother and sister-in-law were able to see Josiah just before nursing change. It was great to see them all.
We enjoyed being at St. George the Martyr church this morning. We finally made it on time to a service - it started at 10:45. It was around a ten minute walk from RMH. How lovely to be able to walk to church.
I'm writing this in the washroom as the lights are off in the main room and I don't want to wake Isaac. Isaac did not sleep very well last night. He slept so lightly that we couldn't put him in the playpen so he "slept" between us. He's been in the playpen thus far tonight so hopefully we won't hear him until the morning.
Thank you for your prayers!
Blessings,
Elizabeth
Saturday 1 September 2012
Isaac and Josiah
I just returned from the hospital. I stayed late to pump so I would not wake Isaac. A security guard walked me "home".
We had a lovely gift today. Our nurse asked us if Isaac had seen Josiah. Graham said he hadn't seen him since we arrived so the nurse invited us to bring him in as no one else was in the room. We took a few pictures together. I'm not quite sure what Isaac thought. He definitely would have been grabbing tubes and lines and touching buttons if we had not been holding him. He was quite excited that Baby Josiah gave him his Get Well balloon (thanks goes to the nurse for that great suggestion).
Today was the first day that we've heard Isaac say his whole name. Previously he's just said "I" for Isaac. He had a good time playing in the play room at the hospital.
Isaac is stirring so I'll sign off.
Blessings,
Elizabeth
We had a lovely gift today. Our nurse asked us if Isaac had seen Josiah. Graham said he hadn't seen him since we arrived so the nurse invited us to bring him in as no one else was in the room. We took a few pictures together. I'm not quite sure what Isaac thought. He definitely would have been grabbing tubes and lines and touching buttons if we had not been holding him. He was quite excited that Baby Josiah gave him his Get Well balloon (thanks goes to the nurse for that great suggestion).
Today was the first day that we've heard Isaac say his whole name. Previously he's just said "I" for Isaac. He had a good time playing in the play room at the hospital.
Isaac is stirring so I'll sign off.
Blessings,
Elizabeth
Baby Angelo
The laundry room was packed last night so I was planning to put a load in at 6:30 after my alarm went off this morning. I woke up at 7:42. It appears that the volume was too low on the iPod. It may have been that I needed to meet Baby Angelo's dad in the laundry room when I switched the load from the washer to the dryer. I've seen this family around but I just introduced myself this morning. Baby Angelo arrived here shortly after we did. There's a lot wrong with Baby Angelo and there's not much hope. They don't think they'll be taking him home and he's never been home. I told the dad that I would be praying and asked if I could write about Baby Angelo and ask others to pray and he agreed. So, please pray for this family.
I just spoke with Josiah's nurse. There hasn't been much change since yesterday and it doesn't sound like there are big plans for today (typical for the weekend).
Graham just called and he and Isaac are on the way. Have a great day!
Blessings,
Elizabeth
I just spoke with Josiah's nurse. There hasn't been much change since yesterday and it doesn't sound like there are big plans for today (typical for the weekend).
Graham just called and he and Isaac are on the way. Have a great day!
Blessings,
Elizabeth
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