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
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