2 Steps Back. I knew I shouldn't get my hopes up yesterday. Today started very different than we had hoped. Elijah's left chest tube is not putting out any more fluids. We thought this was a good thing. We were wrong. The tube was clogged. They were able unclog the tube but nothing came out. Come to find out, Elijah has collected more fluid in his left lung and it is in an area that the chest tube can't access. Basically, this all means that the little guy will have to get yet another chest tube tomorrow. Ugh. Here we were thinking that the tubes would come out, and now we are getting an additional one. The additional fluid in his lung is substantial and has resulted in decreased sats. On the positive side, we have weaned off of all continuous IV meds. This means that he has a little more freedom to move, although not much considering the rest of the tubes and wires attached to him.
Noah has visited his brother virtually every day since Saturday. He has been such a trooper. However, he is starting to show signs of stress and he is beginning to unravel. Today he got into a little argument with another kid on the playground at CHLA. When he came up to tell us about it, he came unglued and couldn't stop crying. I held him and he sobbed that he just wanted me. He didn't want to let go. Ugh my heart broke all over again. My parents have taken great care of him during this past week, but nothing takes the place of mom and dad. Noah has gotten very little of our attention and he doesn't have the words to express his feelings. He is worried about Elijah. And to be truthful, I think he is a little scared. I am going home a little early tonight to be with him. It is so difficult because he needs me, but so does Elijah. I guess we are doing the best we can, and yet it never quite seems like enough.
Saturday, June 20, 2015
Friday, June 19, 2015
Day 9
Today we made further progress in the right direction. Elijah had his pacer wires pulled and he has continued to be weaned from the many IV medications he was on. His chest tubes are putting out considerably less fluid. One of the nurses even said that she thought that they might pull them tomorrow. I try to not get my hopes up.
Elijah's spirits are still quite low. When I got to the hospital early this morning he was a big teary mess. Dion and Elijah had a rough night with the night nurse. Although we very much appreciate the care from everyone here at CHLA, a night nurse can make or break your night. Some night nurses "batch" care and time everything so that they only interrupt every few hours. Other night nurses like to stay busy and therefore are constantly in and out of your room messing with everything from the patient to stocking supplies. We had the latter. Which led to our emotional, upset little guy this morning. No sleep equals a very unhappy little boy.
We tried to pick up spirits. Dion went and got his favorite meal from "the sandwich place" ie Jersey Mikes. That made all the difference. The nurse allowed us to eat as a family at his bed and man did that make him happy (you are not allowed to eat in the CTICU). The nurse even had the doctor put orders into the system allowing us to eat as a family at bedside. He had not eaten all morning and the doctors said that they really needed him to eat before they would consider taking out the tubes. Apparently when you start eating you can start putting out more fluids. They need to see if the fluids increase when he eats. After he ate he got some pain meds and took a nice, long nap.
At this point we are in a waiting game. We are waiting for the chest tubes to get pulled, waiting for the oxygen to be further reduced, and waiting for the IV meds to be weaned.
Elijah's spirits are still quite low. When I got to the hospital early this morning he was a big teary mess. Dion and Elijah had a rough night with the night nurse. Although we very much appreciate the care from everyone here at CHLA, a night nurse can make or break your night. Some night nurses "batch" care and time everything so that they only interrupt every few hours. Other night nurses like to stay busy and therefore are constantly in and out of your room messing with everything from the patient to stocking supplies. We had the latter. Which led to our emotional, upset little guy this morning. No sleep equals a very unhappy little boy.
We tried to pick up spirits. Dion went and got his favorite meal from "the sandwich place" ie Jersey Mikes. That made all the difference. The nurse allowed us to eat as a family at his bed and man did that make him happy (you are not allowed to eat in the CTICU). The nurse even had the doctor put orders into the system allowing us to eat as a family at bedside. He had not eaten all morning and the doctors said that they really needed him to eat before they would consider taking out the tubes. Apparently when you start eating you can start putting out more fluids. They need to see if the fluids increase when he eats. After he ate he got some pain meds and took a nice, long nap.
At this point we are in a waiting game. We are waiting for the chest tubes to get pulled, waiting for the oxygen to be further reduced, and waiting for the IV meds to be weaned.
Thursday, June 18, 2015
Day 8
Today was a better day. Elijah is still very sad and withdrawn, but his health has improved. Although his breathing is fast, it is markedly slower than yesterday. His heart was not being paced today and he was able to maintain rhythm and pace on his own. His blood pressure was stable and his oxygenation was good. All of this, plus reduced chest tube output in his middle chest tube, led to having one chest tube pulled, the line in his neck and groin removed, and the high flow oxygen taken away. They were able to place the pic line as well. I can't help but be a little sad about the pic line. This means that they expect us to stay a while and they can't risk infection with the line in his neck. The pic line can stay for up to 6 months.
The highlight of the day was when we returned to his room after his pic line had been completed. This is a surgical procedure and we were not allowed to remain in the room. They sedated him with a medication that can cause hallucinations. I was a bit concerned about this because I didn't want him to be frightened. However, when we returned, Elijah was very talkative. He told me all about the river that he went to with his brother and how he flew in the sky with an eagle. Ha! He was excited to share with me. He was relaxed and happy, although he did tell me off for not having been in the room when he woke up. I know that this was the medication talking, but I have to say that it was nice to hear his little voice again. He wanted to order food and he was excited to eat. He had not been excited to eat all day. I am hoping that we can hold onto some of that spirit for the days to come.
The highlight of the day was when we returned to his room after his pic line had been completed. This is a surgical procedure and we were not allowed to remain in the room. They sedated him with a medication that can cause hallucinations. I was a bit concerned about this because I didn't want him to be frightened. However, when we returned, Elijah was very talkative. He told me all about the river that he went to with his brother and how he flew in the sky with an eagle. Ha! He was excited to share with me. He was relaxed and happy, although he did tell me off for not having been in the room when he woke up. I know that this was the medication talking, but I have to say that it was nice to hear his little voice again. He wanted to order food and he was excited to eat. He had not been excited to eat all day. I am hoping that we can hold onto some of that spirit for the days to come.
Wednesday, June 17, 2015
Same ol' same ol'...Day 7
I know that some of you have seen the photo of Elijah sucking on a popsicle. That was last night. Elijah woke up from a nice little morphine nap after his nasty reaction yesterday and he was breathing so much better and he actually ate and drank a bit. We went to sleep thinking that we had turned a significant corner.
However, today we were back to the same ol' same ol'. His breathing is rapid again and his heart rate keeps increasing. He needs to get the line in his neck removed and a pic line placed, but he hasn't been stable enough for the procedure. He isn't allowed to eat or drink anything again which just makes him even more miserable. On the positive side, we were able to move him to a chair today and sit with him. That made him cough a little more, which was good for his lungs. He is peeing more and his chest tube output has decreased, although it is still quite generous.
Please pray for Elijah's breathing and chest tube output. And for his spirit. My baby is so, so sad. It breaks my heart to see him like this.
However, today we were back to the same ol' same ol'. His breathing is rapid again and his heart rate keeps increasing. He needs to get the line in his neck removed and a pic line placed, but he hasn't been stable enough for the procedure. He isn't allowed to eat or drink anything again which just makes him even more miserable. On the positive side, we were able to move him to a chair today and sit with him. That made him cough a little more, which was good for his lungs. He is peeing more and his chest tube output has decreased, although it is still quite generous.
Please pray for Elijah's breathing and chest tube output. And for his spirit. My baby is so, so sad. It breaks my heart to see him like this.
Terrifying- CHLA Day 6
I don't really have a word that would describe yesterday. Terrifying is the best word I could come up with. I didn't have it in me to update the blog. To be honest, I needed to recover myself. Elijah was off all day. He wasn't talking to anyone, he refused to eat, and he didn't want to sit up at all. His breathing was very, very fast and he just looked like he did not feel well. I tried to get him to blow some bubbles and he couldn't even get enough breath to blow a single bubble. My heart was breaking. He was still dumping a very large amount from his chest tubes and they were/are talking about putting in a pic line because he still depends on his pacer and the line in his neck really should go soon.
We thought that if Noah came to visit, Elijah might cheer up. And he kinda did. During that same visit, the nurse increase the dose of a blood product (can't recall the name right now, think I may have blocked it). Elijah began to fall asleep while Noah happily played on Elijah's bed. Dion commented that Elijah looked as though he were shivering. I went over and checked on him. Not only was he shaking, but he was in the fetal position, stiff as aboard and shaking, all the while taking very short, fast breaths and making painful noises. He was unresponsive. My mom ushered Noah out of the room while the nurse got the doctors and she started to examine him. He would not move or open his eyes. His jaw was clenched. His blood pressure went through the roof and his heart rate sky rocketed. They thought that he was experiencing an allergic reaction to the blood product. But they weren't sure. They pushed benedryl and suddenly he spiked a fever. They gave meds for that as well. I sat there powerless watching my baby, my heart, suffer. I couldn't do anything but stroke his head and ask him to keep breathing. Terrifying.
It took a while for him to calm, but the meds definitely helped. His breathing was still really fast and he seemed uncomfortable, so we gave him some morphine. He finally rested. Unreal.
We thought that if Noah came to visit, Elijah might cheer up. And he kinda did. During that same visit, the nurse increase the dose of a blood product (can't recall the name right now, think I may have blocked it). Elijah began to fall asleep while Noah happily played on Elijah's bed. Dion commented that Elijah looked as though he were shivering. I went over and checked on him. Not only was he shaking, but he was in the fetal position, stiff as aboard and shaking, all the while taking very short, fast breaths and making painful noises. He was unresponsive. My mom ushered Noah out of the room while the nurse got the doctors and she started to examine him. He would not move or open his eyes. His jaw was clenched. His blood pressure went through the roof and his heart rate sky rocketed. They thought that he was experiencing an allergic reaction to the blood product. But they weren't sure. They pushed benedryl and suddenly he spiked a fever. They gave meds for that as well. I sat there powerless watching my baby, my heart, suffer. I couldn't do anything but stroke his head and ask him to keep breathing. Terrifying.
It took a while for him to calm, but the meds definitely helped. His breathing was still really fast and he seemed uncomfortable, so we gave him some morphine. He finally rested. Unreal.
Monday, June 15, 2015
CHLA Day 5
First, lets go with the good news. The good news is that Elijah is off of the high flow oxygen and the medication that comes with it. This means that Elijah can eat and drink! Although his first meal consisted of only a few bites, his second meal was substantial. I am hoping that this will help him gain some strength and also help him rest more peacefully. The other good news, at least for now, is that they have stopped the epi drip. I say "for now" because his lactate levels have increased and there is a possibility that they may need to resume the drip. More good news, Elijah's sats have been great and in all honesty, he has never looked better color-wise. He is pink and the swelling is going down.
Now for the not so good news. Day 5 actually means post op day 4. That is important to know because each day signifies something. For example, Fontan patients often have a fever during the first 1-3 days post op. Elijah had a fever until yesterday. Fontan patients typically slow down their chest tube output during the first several days post op. Elijah has not slowed down his output. In fact Elijah has increased his output to such an extent that they are walking a very fine line trying to replace his fluids. We have had several doctors today express concern over the amount of fluids he is dumping. Dr. Starnes came by this morning and said that he believe there was a 80/20 percent chance that they would have to go in and redo the fenestration. Meaning 80 percent we don't have to do it, 20 percent we will have to do it. We thought this was positive. However, throughout the day, the dumping has increase. The doctor this evening went over his concern at length and said that he agreed that it was either 80/20 or 70/30 and that he believed that this was actually significant in that 1 in 5 or 1 in 4 that that they will need to fenestrate. He actually said that he was "concerned." This is a word I have learned to dread when it comes out of a doctor's mouth. Ugh. Please pray that Elijah's body will figure out his new physiology and in turn his out put will decrease. And pray that Elijah will be without pain and will be able to rest peacefully.
Now for the not so good news. Day 5 actually means post op day 4. That is important to know because each day signifies something. For example, Fontan patients often have a fever during the first 1-3 days post op. Elijah had a fever until yesterday. Fontan patients typically slow down their chest tube output during the first several days post op. Elijah has not slowed down his output. In fact Elijah has increased his output to such an extent that they are walking a very fine line trying to replace his fluids. We have had several doctors today express concern over the amount of fluids he is dumping. Dr. Starnes came by this morning and said that he believe there was a 80/20 percent chance that they would have to go in and redo the fenestration. Meaning 80 percent we don't have to do it, 20 percent we will have to do it. We thought this was positive. However, throughout the day, the dumping has increase. The doctor this evening went over his concern at length and said that he agreed that it was either 80/20 or 70/30 and that he believed that this was actually significant in that 1 in 5 or 1 in 4 that that they will need to fenestrate. He actually said that he was "concerned." This is a word I have learned to dread when it comes out of a doctor's mouth. Ugh. Please pray that Elijah's body will figure out his new physiology and in turn his out put will decrease. And pray that Elijah will be without pain and will be able to rest peacefully.
Saturday, June 13, 2015
Day 3
Today was a better day for Elijah. He looks better in that his color has improved and he is warm in his hands and feet. However he is on a great deal of support to look that good. The doctors focused on keeping him stable and allowing him to rest from the events of yesterday. His little body needed to recover, so they didn't change much in his treatment. They were able to slightly lower one of his medications, but overall things stayed the same. He was able to go off the pacer today for a little while, but his rhythm couldn't quite stay regular so they had to turn it back on. His lungs are sounding better and he is beginning to cough quite a bit, which is actually good. He is incredibly vocal about wanting water and demands that anyone who comes into the room bring him some. It's so hard to see him so miserable. He isn't allowed to take anything by mouth right now.
Noah came to visit for the first time today. He had been asking to see Elijah since Thursday, but with the events of yesterday being so intense, I didn't feel comfortable having him here. Today was calmer, so Noah was able to visit. He handled the visit very well. He sat on the bed next to his brother and held his hand. At one point Elijah rolled onto his side and put his arm over Noah. He wanted to cuddle with his big brother. You could feel that Noah brought Elijah comfort and Noah was happy to see his brother. I was hesitant to let him see Elijah in this state, but I think that seeing him was better for Noah then just allowing Noah to imagine what was happening.
I am hoping that we have a calm night and that we are able to make some adjustments tomorrow, but I also don't want to rush him. Keep us in your prayers!
Noah came to visit for the first time today. He had been asking to see Elijah since Thursday, but with the events of yesterday being so intense, I didn't feel comfortable having him here. Today was calmer, so Noah was able to visit. He handled the visit very well. He sat on the bed next to his brother and held his hand. At one point Elijah rolled onto his side and put his arm over Noah. He wanted to cuddle with his big brother. You could feel that Noah brought Elijah comfort and Noah was happy to see his brother. I was hesitant to let him see Elijah in this state, but I think that seeing him was better for Noah then just allowing Noah to imagine what was happening.
I am hoping that we have a calm night and that we are able to make some adjustments tomorrow, but I also don't want to rush him. Keep us in your prayers!
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