When I arrived at the hospital this morning Josiah was off oxygen and looking good. He even had his chest physio with suctioning and maintained his sats. At around 10:00 AM his amazing nurse and I took Josiah (in his crib) to the second floor to have an ultrasound. While we were waiting in the hallway, Josiah gagged and spit up. During the ultrasound Josiah was quite irritable but his sats were good. The nurse was concerned about his colour as he became very pale. He started to desat right when we were ready to leave so she put the oxygen mask by his face. This nurse worked in the CCCU for a year but prefers the ward as she can be silly with the children and have more of a relationship with the families. She did say she picked up great skills in the CCCU, especially learning how and what to think when children deteriorate quickly.
Back in the room, his sats wouldn't stay up so he ended up being put on 1.5 L/min of oxygen which he remained on for the rest of the day. He threw up again around 3:00 PM for no apparent reason. The nurse was surprised as it had been three hours since his previous feed. When he had physio in the afternoon, the PT was able to get out quite a lot of thick secretions, including a large plug. The fellow called for an x-ray which showed that Josiah has very wet lungs. He'll get more lasix tonight and they are monitoring him very closely. If he gets a fever, they will start antibiotics as they will assume he has pneumonia.
His echo from yesterday showed no changes from his previous imaging. The ultrasound of his right groin showed that the previous clot hadn't changed. I actually found out that there are two clots there but only one is an occluded clot.
Josiah's picc line was TPA'd again as they couldn't pull back blood. One lumin was done and then they both worked beautifully and blood was sent to the lab and in less than an hour the lumins didn't work again. The other lumin was then TPA'd and I didn't hear if that worked. (Update: I just spoke with the night nurse and she wasn't able to draw back anything but then another nurse worked on it for a while and was able to draw back so it's clearly very finicky which isn't surprising given that the end is inside a clot.)
The nurse practitioner said she would need a full day to read through his entire history. She told me she's staying on her tiptoes for a while.
We weren't able to attempt any oral feeds or developmental physio today but our new physiotherapist said that Josiah will be on a mat tomorrow (as long as he is stable). His PT isn't on the floor on Wednesdays but he did come down to do Josiah's afternoon session. He is very kind and really seems to care for Josiah, telling him what a brave boy he is and commenting on his cuteness. Josiah usually doesn't like getting the vibes on his chest and hates the suctioning down the back of his nose but the catheter goes in his mouth after that and he calms down right away. He bites on the catheter and we think he likes the feeling of the suction on his tongue and his right cheek. That's his treat.
Two phrases I hear a lot are "it's a balancing act" and "he doesn't have any reserve."
Grandma and Grandpa L. were able to visit this afternoon and they both pushed Josiah in the stroller. Even though Josiah wasn't overly stable today, he would go from being mad to giving a beautiful smile.
Isaac had a wonderful playdate with a friend from church this morning and later in the afternoon he had a Daddy date, getting his hair cut, looking at animals at Petcetera, going to the library and then out to dinner.
One of the staff members at RMH told me that she brought in ten new families last night and two tonight. There are room for 80 families here and they have only one or two more spaces available, though there are often people leaving as well.
Apart from asking for healing for Josiah, I often don't know what to pray for or what to ask you to pray for so that's part of the reason that I let you know what's been going on so you can decide what to pray. We really appreciate your prayers for Josiah and our family. We are blessed indeed!
Blessings,
Elizabeth
Wednesday, 7 November 2012
Tuesday, 6 November 2012
Pinker
Josiah had a good day today. He was pinker. Yesterday was the first time I looked at him since he's been feeling better and I noticed how blue his skin looks. He had better sats today and he went down from 2L/min of oxygen to 0.5L/min of oxygen.
Josiah slept a lot today and was also uncharacteristically calm. His hearing test had to be cut short and is rescheduled for next week. There may be some hearing differences in his left ear but she thought it was something that he would outgrow. The previous test showed that Josiah had good hearing in his right ear so we praise God for that.
I may have mentioned a family here whose daughter is waiting for a bone marrow transplant. When I arrived back at RMH tonight, they told me the exciting news that a donor has been found! The transplant won't take place until January. They are thanking God for this wonderful gift!
Josiah wore a sleeper today! It was size 9 months but it seemed a little snug. Grandma is bringing more from home tomorrow. It was nice to see him in clothes again.
God answered an unspoken prayer today. I had been wondering if we'd see one of the nurses we really enjoyed in April. She's one of the charge nurses and she did Josiah's carseat test in April. I walked into Josiah's room this morning to found her as his nurse for today and tomorrow. I haven't been doing Josiah's enox shots but tonight she passed me the needle and said it was the perfect time to practice (on Josiah). We were both surprised at how well it went (after I finished my swallowing and aiming routine).
Josiah's heart rate is lower than in used to be but the doctors are assuming it's due to his medication and it's a good thing. It's been around 104 bpm when he is sleeping and around 110 when awake. His heart rate doesn't change much when he is angry due to his medicine.
The OT assessed Josiah as we attempted an oral feed with a bottle for his 3:00 feed. She was surprised that he didn't gag on it. He gnaws on the bottle nipple so he barely drank any milk. She said we might try a spoon feed to see what he does.
It looks like we will probably go to our own room tomorrow or Thursday. It's clear that I do not have to be there 24-7 so I'll probably sleep at RMH on the weekend while Graham and Isaac are here. Isaac will be allowed in Josiah's room if he's feeling well.
I had a nice chat with another heart mom today at the hospital and another chat tonight with the mom of a girl with leukemia.
Thanks to Oxford Properties Group for an amazing dinner tonight. It's time to go to sleep. Thank you for your prayers! There are a lot of Christians here so it's nice to be able to share the daily good news and thank God together.
Blessings,
Elizabeth
Josiah slept a lot today and was also uncharacteristically calm. His hearing test had to be cut short and is rescheduled for next week. There may be some hearing differences in his left ear but she thought it was something that he would outgrow. The previous test showed that Josiah had good hearing in his right ear so we praise God for that.
I may have mentioned a family here whose daughter is waiting for a bone marrow transplant. When I arrived back at RMH tonight, they told me the exciting news that a donor has been found! The transplant won't take place until January. They are thanking God for this wonderful gift!
Josiah wore a sleeper today! It was size 9 months but it seemed a little snug. Grandma is bringing more from home tomorrow. It was nice to see him in clothes again.
God answered an unspoken prayer today. I had been wondering if we'd see one of the nurses we really enjoyed in April. She's one of the charge nurses and she did Josiah's carseat test in April. I walked into Josiah's room this morning to found her as his nurse for today and tomorrow. I haven't been doing Josiah's enox shots but tonight she passed me the needle and said it was the perfect time to practice (on Josiah). We were both surprised at how well it went (after I finished my swallowing and aiming routine).
Josiah's heart rate is lower than in used to be but the doctors are assuming it's due to his medication and it's a good thing. It's been around 104 bpm when he is sleeping and around 110 when awake. His heart rate doesn't change much when he is angry due to his medicine.
The OT assessed Josiah as we attempted an oral feed with a bottle for his 3:00 feed. She was surprised that he didn't gag on it. He gnaws on the bottle nipple so he barely drank any milk. She said we might try a spoon feed to see what he does.
It looks like we will probably go to our own room tomorrow or Thursday. It's clear that I do not have to be there 24-7 so I'll probably sleep at RMH on the weekend while Graham and Isaac are here. Isaac will be allowed in Josiah's room if he's feeling well.
I had a nice chat with another heart mom today at the hospital and another chat tonight with the mom of a girl with leukemia.
Thanks to Oxford Properties Group for an amazing dinner tonight. It's time to go to sleep. Thank you for your prayers! There are a lot of Christians here so it's nice to be able to share the daily good news and thank God together.
Blessings,
Elizabeth
Monday, 5 November 2012
A better day
Josiah had a better day today. He was fussy this morning but a stroller ride did the trick. He had a big nap this afternoon and he's sleeping peacefully now without any extra sedation. He was given extra sedation last night when his nurse was on break. He was on two litres of oxygen per minute until around 5:00 PM when he was turned down to one and a half litres of oxygen.
They increased his physio to three times per day as his x-ray showed his right upper lobe looking worse. This is the area that has repeatedly been problematic.
His 3:00 PM feed was my milk fortified with Goodstart formula. His is still being fed using his NG tube. When they are happier with his breathing, we can attempt oral feeds.
Thankfully he hasn't had fevers so I think he'll need to stop being diaper boy. I'm taking over a sleeper for him in the morning.
He is scheduled for a 10:00 AM hearing test tomorrow but he must sleep through it in order for it to work.
Tomorrow morning the team will discuss if it's time for us to move to our own room. I'll keep you updated.
Thanks so much for your prayers!
Blessings,
Elizabeth
P.S. Thanks to TD Bank for a delicious dinner!
They increased his physio to three times per day as his x-ray showed his right upper lobe looking worse. This is the area that has repeatedly been problematic.
His 3:00 PM feed was my milk fortified with Goodstart formula. His is still being fed using his NG tube. When they are happier with his breathing, we can attempt oral feeds.
Thankfully he hasn't had fevers so I think he'll need to stop being diaper boy. I'm taking over a sleeper for him in the morning.
He is scheduled for a 10:00 AM hearing test tomorrow but he must sleep through it in order for it to work.
Tomorrow morning the team will discuss if it's time for us to move to our own room. I'll keep you updated.
Thanks so much for your prayers!
Blessings,
Elizabeth
P.S. Thanks to TD Bank for a delicious dinner!
Sunday, 4 November 2012
Always Faithful
I awoke to the sound of Isaac falling out of bed. Thankfully the pillow fell first as the flooring is hard. He only cried for a moment after I picked him off the floor and gave him a hug and then he immediately pointed to the mattress on the floor, deciding that it would be a better place to lay his head. He was awake for about an hour before he went back to sleep which was mainly my fault because I wouldn't give him milk. The clock said that it was just after 4:00 AM but I hadn't turned the clock back so I thought it was just after 3:00 AM. I learned later that the clock automatically changed to the correct time so to Isaac's body it was actually after 5:00 AM. Within the time he was awake he had a brief period of hysterics when everything I tried to do was wrong. However, it usually works when I ask him if we should pray to God to ask Him to help Isaac to calm down. As soon as I start to pray he is quiet and then at the end he will say, "Amen." After that he was able to lie down and drink his milk which meant that Mommy could go back to sleep.
We made it to church in time to participate in the singing portion of the worship service. It's great to sing to God in unity with others. Speaking of unity, it's amazing to have so many people from various Christian traditions supporting us. Here is a photo of a Prayer Quilt that was made by members of St. Peter's Lutheran Church in Kitchener, where one of Graham's co-workers attends. It's a beautiful quilt of Noah's Ark that has knotted threads all over it. Each knot represents a prayer that was said for Josiah and as people come and pray for Josiah, they can tie more knots. It's an amazing visual reminder of God's love and His open ears to all of our prayers.
In addition to this amazing gift from Lutherans, we have had prayer and other practical support from the following traditions in alphabetical order: Anglicans, Baptists, Brethren In Christ churches, Catholics, Coptic Christians, Mennonite Brethrens, Pentecostals, and others.
My sister-in-law very kindly stayed with Josiah most of the day. It was great to know that Josiah had someone to cuddle him while we were at church and then eating lunch with Isaac. Josiah enjoyed the company and had quite a good day with just a few fussy times. He is now receiving regular ventolin in a mask to help with his breathing and saturation levels. He was on one and a half liters of oxygen today when we left him. Here is a photo of Josiah receiving developmental physiotherapy on the weekend. It's not his favourite activity.
My other brother and sister-in-law also came to visit today so all six adults and four children (not counting Josiah) were able to be together. It also meant that Graham and I could have a short visit with Josiah together. It was good timing because the nurse practitioner came to speak with us. In order for Josiah to go home, he needs to be able to have feeds and be off his oxygen or at least have stable and low oxygen needs. She thought we might be able to get to our own room this week. We'll see how Josiah is doing tomorrow to determine if we can try some oral feeding or not. While we are well aware that it will be Josiah letting us know when he is ready to the leave the hospital, the nurse thought it was reasonable to think that we might be home by the end of November and sooner if all goes really well but hopefully at least by Christmas. : ) One day at a time.
My brother and sister-in-law brought more cards from church members today. They are so encouraging to read. Thank you!
Here is a video featuring Sara Grove's song, "He's Always Been Faithful." My mother-in-law sang this at our wedding. He has certainly always been faithful and we know He always will be. Today we remember our Little One whom we lost four years ago today in an ectopic pregnancy.
Thank you for your love and prayers!
Blessings,
Elizabeth
P.S. I just called 4D and found out that one his CCCU nurses is his nurse tonight. Yeay!
In addition to this amazing gift from Lutherans, we have had prayer and other practical support from the following traditions in alphabetical order: Anglicans, Baptists, Brethren In Christ churches, Catholics, Coptic Christians, Mennonite Brethrens, Pentecostals, and others.
My other brother and sister-in-law also came to visit today so all six adults and four children (not counting Josiah) were able to be together. It also meant that Graham and I could have a short visit with Josiah together. It was good timing because the nurse practitioner came to speak with us. In order for Josiah to go home, he needs to be able to have feeds and be off his oxygen or at least have stable and low oxygen needs. She thought we might be able to get to our own room this week. We'll see how Josiah is doing tomorrow to determine if we can try some oral feeding or not. While we are well aware that it will be Josiah letting us know when he is ready to the leave the hospital, the nurse thought it was reasonable to think that we might be home by the end of November and sooner if all goes really well but hopefully at least by Christmas. : ) One day at a time.
My brother and sister-in-law brought more cards from church members today. They are so encouraging to read. Thank you!
Here is a video featuring Sara Grove's song, "He's Always Been Faithful." My mother-in-law sang this at our wedding. He has certainly always been faithful and we know He always will be. Today we remember our Little One whom we lost four years ago today in an ectopic pregnancy.
Thank you for your love and prayers!
Blessings,
Elizabeth
P.S. I just called 4D and found out that one his CCCU nurses is his nurse tonight. Yeay!
Saturday, 3 November 2012
Clocks turn back
I will not be turning back our clocks until tomorrow morning, after Isaac wakes up. Otherwise, the early hour might be too much of a shock. No one warned me prior to having children that the extra hour is no longer taken up with sleep. :)
I was mainly at RMH with Isaac today while Graham was with Josiah at the hospital. Josiah was desatting to the 50s and 60s today so the CCRT fellow was called. An x-ray showed some congested areas in the lungs so he had a mask put on his face with ventolin and more chest physio and both of these seemed to help. At one point he was receiving four liters of oxygen per minute through his nasal prongs. He was on two liters for a lot of the day but he is on three liters now. After the CCRT assessment, he was NPO so he missed his 3:00 PM feed but he received half his feeds at 6:00 PM and 9:00 PM. He did not gag or spit up today. The CCRT fellow who was consulted was another one of our previous fellows from CCCU who happened to be the doctor who intubated Josiah the second time.
Josiah was given extra sedation overnight and today. He was also given more lasix today through his picc line (he is now on oral lasix regularly). I believe people think that one reason for his fussiness is all the sedation he has come off of.
This afternoon we had a nice visit with our family who live near Ottawa. Both my brother and sister-in-law were able to hold Josiah. It will be great to spend some more time with them tomorrow and be able to give my nephew more cuddles.
It was nice to be able to get more rest today while Isaac napped but I was also quietly texting with Graham, wondering what was happening with Josiah.
Graham just skyped me from Josiah's hospital bed so I was able to see him. He was getting more ventolin. The nurse said that ventolin is like a rush of adrenalin or having ten cups of coffee so it will unfortunately keep him awake for a while. He will receive ventolin as needed, with doses separated by at least four hours.
Our amazing physiotherapist from CCCU worked on Josiah this morning so it was nice that Graham was able to meet him and Graham shares my high opinion of him.
Okay - I have great faith in our ability to get to church on time tomorrow as long as Josiah's condition cooperates, Isaac doesn't throw up, and firefighters don't cook our breakfast. I hope we don't arrive an hour early!
Thank you for your prayers and support. I confess I was wondering what floor Josiah would be on when I arrived at the hospital this afternoon. He is still in need of God's touch and so are we. I've been extra tired these last few days and my knees are acting up a little. It's been great to have Graham here.
Blessings,
Elizabeth
p.s. I was able to dip Josiah's soother in my milk and Josiah seemed to like it.
I was mainly at RMH with Isaac today while Graham was with Josiah at the hospital. Josiah was desatting to the 50s and 60s today so the CCRT fellow was called. An x-ray showed some congested areas in the lungs so he had a mask put on his face with ventolin and more chest physio and both of these seemed to help. At one point he was receiving four liters of oxygen per minute through his nasal prongs. He was on two liters for a lot of the day but he is on three liters now. After the CCRT assessment, he was NPO so he missed his 3:00 PM feed but he received half his feeds at 6:00 PM and 9:00 PM. He did not gag or spit up today. The CCRT fellow who was consulted was another one of our previous fellows from CCCU who happened to be the doctor who intubated Josiah the second time.
Josiah was given extra sedation overnight and today. He was also given more lasix today through his picc line (he is now on oral lasix regularly). I believe people think that one reason for his fussiness is all the sedation he has come off of.
This afternoon we had a nice visit with our family who live near Ottawa. Both my brother and sister-in-law were able to hold Josiah. It will be great to spend some more time with them tomorrow and be able to give my nephew more cuddles.
It was nice to be able to get more rest today while Isaac napped but I was also quietly texting with Graham, wondering what was happening with Josiah.
Graham just skyped me from Josiah's hospital bed so I was able to see him. He was getting more ventolin. The nurse said that ventolin is like a rush of adrenalin or having ten cups of coffee so it will unfortunately keep him awake for a while. He will receive ventolin as needed, with doses separated by at least four hours.
Our amazing physiotherapist from CCCU worked on Josiah this morning so it was nice that Graham was able to meet him and Graham shares my high opinion of him.
Okay - I have great faith in our ability to get to church on time tomorrow as long as Josiah's condition cooperates, Isaac doesn't throw up, and firefighters don't cook our breakfast. I hope we don't arrive an hour early!
Thank you for your prayers and support. I confess I was wondering what floor Josiah would be on when I arrived at the hospital this afternoon. He is still in need of God's touch and so are we. I've been extra tired these last few days and my knees are acting up a little. It's been great to have Graham here.
Blessings,
Elizabeth
p.s. I was able to dip Josiah's soother in my milk and Josiah seemed to like it.
Friday, 2 November 2012
Familiar faces
God sent some familiar faces today, a lovely gift to me. One of the receptionists also works in the CCCU, the EP fellow saw Josiah's name on a list and came to see us, one of the charge nurses from the CCCU saw that we weren't downstairs so she came and found us, and there was also one of his previous nurses and one of his previous fellows in addition to the nurse practitioners whom I have known since April. We're also in the same room as Aleeda (a little girl awaiting a heart transplant) whose mom I know from RMH. Oh yes, I also saw Josiah's cardiologist in the hallway and we had a chat; we haven't seen him for ages as he is mainly involved when Josiah is at home and returns for clinic visits. Wow - I didn't realize how many familiar faces there were until I started the list!
It was a tiring day but not nearly as tiring as yesterday and I had a good sleep last night. Josiah was put back on the oxygen prongs last night as his sats were hanging out in the low 60s and then dipped to the 50s when he was upset. The CCRT fellow told the nurse to leave the oxygen prongs on Josiah today.
CCRT stands for the Critical Care Response Team. They follow children who leave the critical care unit and go to the wards. Usually they follow up for 48 hours (two visits) but Josiah will be followed for 72 hours and the fellow who came today (the same fellow who last had to intubate Josiah) told me that I could ask the nurse to page them at any time even after the 72 hour mark. The charge nurse from CCCU also told me that they can come up and assess Josiah if the need arises. I hope neither of those options will be needed but it's amazing to know that all the support is there.
Yes, Josiah is still in the step-down room and I am so thankful. Our new physiotherapist came by a couple of times today and he also seems great. Josiah now has a tumble forms chair to use to support him in a more upright position. This weekend he will just have some chest physio to help with secretions but on Monday he'll have more developmental physio. His left arm is doing better but his left leg needs more work.
Today was tiring as Josiah was quite fussy and also gagged and seemed to be bothered by reflux. Thankfully the stroller still seems to calm him but he starts getting fussy as soon as I stop moving. I'm trying to be careful to not overwork my knees. One advantage that will come when he is in his own room will be the couch/bed that I can lie down on when Josiah is sleeping.
Although Josiah won't receive my milk or start oral feeds until Monday, they did say that I could dip my finger or a soother into my milk and put it in his mouth over the weekend. Hopefully I'll get a chance to try that tomorrow. When I hold him in my arms he still seems to root so I'm hoping he remembers what to do. The nurse told me today that if he ends up needing thickened milk, he won't be able to have my milk as there is no longer a product to thicken it (the previous product was recalled and is no longer used for babies under one year of age). I suspect that Josiah will remember how to nurse but the bigger question is whether or not he will be able to breath at the same time, keep his sats up and not aspirate. As I said before, it was amazing that he was able to nurse in the beginning as most heart babies do not learn this. I would love to go home without an NG tube down his nose so even if he just learned to take a bottle, that would be great.
Josiah's enox level was down today so his dose has increased and another level will be done tomorrow morning. On 4D they won't take the blood from the picc line to check the level as it is now heparin-locked so they have to poke him. I don't like holding him down to get the needle but I'm glad I can be there.
Graham just returned from a visit with Josiah. He said that Josiah was fussy. It seems like a number of people think his fussiness is due to the amount of sedative that he used to be on. May God give the doctors and nurses wisdom to help Josiah.
Thanks for your prayers!
Blessings,
Elizabeth
It was a tiring day but not nearly as tiring as yesterday and I had a good sleep last night. Josiah was put back on the oxygen prongs last night as his sats were hanging out in the low 60s and then dipped to the 50s when he was upset. The CCRT fellow told the nurse to leave the oxygen prongs on Josiah today.
CCRT stands for the Critical Care Response Team. They follow children who leave the critical care unit and go to the wards. Usually they follow up for 48 hours (two visits) but Josiah will be followed for 72 hours and the fellow who came today (the same fellow who last had to intubate Josiah) told me that I could ask the nurse to page them at any time even after the 72 hour mark. The charge nurse from CCCU also told me that they can come up and assess Josiah if the need arises. I hope neither of those options will be needed but it's amazing to know that all the support is there.
Yes, Josiah is still in the step-down room and I am so thankful. Our new physiotherapist came by a couple of times today and he also seems great. Josiah now has a tumble forms chair to use to support him in a more upright position. This weekend he will just have some chest physio to help with secretions but on Monday he'll have more developmental physio. His left arm is doing better but his left leg needs more work.
Today was tiring as Josiah was quite fussy and also gagged and seemed to be bothered by reflux. Thankfully the stroller still seems to calm him but he starts getting fussy as soon as I stop moving. I'm trying to be careful to not overwork my knees. One advantage that will come when he is in his own room will be the couch/bed that I can lie down on when Josiah is sleeping.
Although Josiah won't receive my milk or start oral feeds until Monday, they did say that I could dip my finger or a soother into my milk and put it in his mouth over the weekend. Hopefully I'll get a chance to try that tomorrow. When I hold him in my arms he still seems to root so I'm hoping he remembers what to do. The nurse told me today that if he ends up needing thickened milk, he won't be able to have my milk as there is no longer a product to thicken it (the previous product was recalled and is no longer used for babies under one year of age). I suspect that Josiah will remember how to nurse but the bigger question is whether or not he will be able to breath at the same time, keep his sats up and not aspirate. As I said before, it was amazing that he was able to nurse in the beginning as most heart babies do not learn this. I would love to go home without an NG tube down his nose so even if he just learned to take a bottle, that would be great.
Josiah's enox level was down today so his dose has increased and another level will be done tomorrow morning. On 4D they won't take the blood from the picc line to check the level as it is now heparin-locked so they have to poke him. I don't like holding him down to get the needle but I'm glad I can be there.
Graham just returned from a visit with Josiah. He said that Josiah was fussy. It seems like a number of people think his fussiness is due to the amount of sedative that he used to be on. May God give the doctors and nurses wisdom to help Josiah.
Thanks for your prayers!
Blessings,
Elizabeth
Thursday, 1 November 2012
4D
Well, we made it to 4D. Thank You Lord! That's the D Wing of the fourth floor. We were transferred around 1:00 PM. Josiah had a good sleep last night - in his stroller - but he has been fussy all day except for the two times I was able to take him for a stroller ride. Thankfully, we were put in the step-down room where there are three other children and 24-hour nursing. I'm hoping we'll be able to stay in the step-down room all weekend, instead of going to our own room, but it will depend on who is sick and needs the space.
I think I've been more tired today than I have been at any time over the last three months here. I'm not sure of the exact reason for this but I'm going to go to sleep as soon as I finish this post and then I'll get up to do one more pump a little later. No one wants to rock the boat now that we're finally out of the CCCU so the nurse practitioner told me that Josiah won't start oral feeds until Monday.
The single ventricle team decided that Josiah will not have his picc removed and he won't have the dye study which would show whether or not the clot in Josiah's heart is growing. They don't want to risk compromising Josiah's last good access site for a picc line, especially given that he is off intravenous medications right now. Technically, both his left arm and his left femoral area are free of clots (as opposed to the right sides) but they wouldn't want a picc is his left arm as it could negatively affect vessels that need to be in good condition for a future surgery.
It's time to lie down and close my eyes. I look forward to seeing Graham and Isaac tomorrow night and I hope we are able to be at RMH together for the weekend. If Josiah is in his own room, one of us might need to sleep at the hospital. Thank you for your prayers!
Blessings,
Elizabeth
P.S. Thanks to Torys LLP for an amazing dinner tonight. I had salmon coated with sesame seeds and a delicious glaze.
I think I've been more tired today than I have been at any time over the last three months here. I'm not sure of the exact reason for this but I'm going to go to sleep as soon as I finish this post and then I'll get up to do one more pump a little later. No one wants to rock the boat now that we're finally out of the CCCU so the nurse practitioner told me that Josiah won't start oral feeds until Monday.
The single ventricle team decided that Josiah will not have his picc removed and he won't have the dye study which would show whether or not the clot in Josiah's heart is growing. They don't want to risk compromising Josiah's last good access site for a picc line, especially given that he is off intravenous medications right now. Technically, both his left arm and his left femoral area are free of clots (as opposed to the right sides) but they wouldn't want a picc is his left arm as it could negatively affect vessels that need to be in good condition for a future surgery.
It's time to lie down and close my eyes. I look forward to seeing Graham and Isaac tomorrow night and I hope we are able to be at RMH together for the weekend. If Josiah is in his own room, one of us might need to sleep at the hospital. Thank you for your prayers!
Blessings,
Elizabeth
P.S. Thanks to Torys LLP for an amazing dinner tonight. I had salmon coated with sesame seeds and a delicious glaze.
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