Day 18

So today I cried. Yep. I cried big bucket tears, or as my girlfriend would say, I had the ugly cry face. They retested Elijah's chest output and it came back positive for fat, or chylous.  To top that off, they have seen the amount increase, not decrease. Now we are questioning their numbers because the tube had been clogged again, but nevertheless, things are not going our way. This is not news that we wanted to hear. The surgical team agreed to give him 24 hours before they make a change. However, if they do make a change it will not be a pleasant one. They will take away all food and drink for the next 3-7 days. If this does not work to fix the issue, then he will need another surgery.

On the bright side, I was able to see a glimpse of my little Elijah this evening. He perked up and was talking to everyone and asking to color. Elijah hasn't asked to do anything since we have been here. We have toys in the room, but he hasn't wanted to play with anything. We took him to the playroom and he didn't want to play, he only wanted to go back to the room. He is depressed and sad. Noah was able to get Elijah to paint with him and he managed to cheer him up for a few minutes this afternoon. But this evening I saw him smile and play. It breaks my heart to think of what we might have to put him through.

Day 17

Today was much the same with a little bright spot. The surgeon came in this morning and said that Elijah's x-ray looked a little better. It looks as though the bottom part of the lung has been able to get rid of the excess fluid, although he still has fluid on the top portion. She suctioned his tube again and was only able to get a little fluid out. She was a bit perplexed as to why the bottom would come out, but the top wouldn't. She wants to leave the tube in for a few more days in hope that with some movement, we will be able to get that fluid out. She is also going to keep him on the high dose of diuretics to help continue to "dry" him out. The hope is that if we can get him completely dry, we will then be able to wean some of the diuretics and his body won't produce extra fluid. He is currently on IV diuretics and he needs to be able to wean down to oral.

Elijah is satting better and his heart rate has decreased from last night. The night nurse was awesome and was able to cluster all of his care last night and he finally got a good night sleep. It really showed in his attitude today. We have taken two really good walks around the unit and he has spent time sitting in the chair.

Day 16

Before I get into the roller coaster that is Elijah's recovery, I want to talk about Noah. Last night Noah "graduated" from preschool. I know that graduating from preschool is not a huge accomplishment. I know that the huge ceremony that we attended was overkill. But I also know that it came just in time for Noah. I know that Noah needed a moment to shine. He needed a moment when all of his parents' attention was on him and him only. He needed to be our sole focus, if even just for an hour. He needed to know that he was still a priority to his parents during all of the chaos around him.  Noah had to recite a poem, using a mic, during the ceremony. I am so very proud of the little boy Noah has become. A huge thanks to our friends and family who covered for us at the hospital in order to allow Noah to have his moment.

Now onto the not to fun stuff. Yesterday things were looking up for our little guy. His right lung looked the best it had looked in a long time and he was breathing easy. There was even a little talk of being able to pull his remaining tube in the next couple of days. However, today looked very different. This morning's x-ray showed fluid in his right lung and an effusion in his left. To top this off, his remaining chest tube had clogged again. A surgeon came in and she was able to unclog the tube, but not much came out. At this point, they think that the effusion is in a pocket of the lung that the current chest tube can't access. It looks like the current tube has done it's job. However, that still leaves the effusion in place. The plan at this point is to increase his diuretics and watch and see. It is possible that they will be able to "dry" him out enough to take care of the extra fluid. However, his sats have not improved today and he is panting instead of breathing. All of this points to extra fluid on his lungs. He has not wanted to eat and he has been miserable.

Please pray that the diuretics will do their job and dry out his lungs. He needs a break. And pray for his spirit. He is so sad.

Day 14- Chest Tube Drama

And the chest tube issues continue. The good news is that his output was down from 380cc the previous day to 310cc today. The bad news is that this morning the doctors discovered that Elijah's right chest tube had moved even more and that there was now an air bubble outside of his lung. This meant that the tube had to be pulled right away. His output from that tube was 120cc during the previous 24 hours. They don't like to pull out the tubes until the output is closer to 50cc, although they will pull them at 100cc. Elijah was so close that they decided to postpone placing another chest tube, and they increased his diuretics. They are hoping that his body will eliminate the extra fluid that is currently in his right lung.

To put Elijah through another chest tube would be horrible. The tube would have to go in a different place. His poor chest is so full of stitches and scars.

Day 14

Today marks two weeks at CHLA. Elijah is continuing to drain from his two chest tubes, although the amount has decreased. He is eating a low fat diet and and his fluids have been restricted. He gets daily x-rays and more meds than I care to count. His attitude is starting to improve. Today is the third day that we have been able to get up and walk. He was almost running today while walking with his brother. He spent an hour in the playroom before he tired. Overall, we are making the best of a long hospital stay.

I think that as long as his chest tube output continues to lessen, they will allow us to continue as planned. Unfortunately, Elijah pulled out one of his chest tubes by a couple of centimeters. This may or may not be a big deal, but it is a concern and may put us on more of a timeline. He is having a terrible time sleeping. It seems that the pain and aggravation catch up to him at night and he cries, tosses and turns, and moans for most of the night. I think that it was during the night that the chest tube moved. Both Dion and I have taken to spending most of our nights in his bed trying our best to comfort him.

Please continue to keep us in your thoughts and prayers.

Day 13

Today was much of the same except that today we got to visit the playroom! Noah came for his daily visit and we hooked Elijah up to a bunch of machines and off we went. The nurse stayed with us the entire time and Elijah was so, so happy. He and Noah played for about 45 minutes and then Elijah got tired. To top off all of the activity, Elijah went for two good walks. He is exhausted, but he is happier.

As for the draining chest tubes... it is trendy down, but not where it needs to be. Yesterday it was around 500 cc during a 24 hour period and today we are at around 400cc. The cardiologist came in and discussed some possibilities with us, none of which we liked. Apparently some surgeons treat prolonged draining by not allowing kids eat or drink for a week. That would be absolute torture for everyone. On top of all of that, the chest tubes stay in. I guess during surgical rounds, they discussed this as a possibility. I cannot imagine putting Elijah through that. I can only hope and pray that his output continues to slow at the current rate so as to convince the surgeons to give us more time.

Day 12

Yesterday we woke up expecting them to wheel Elijah back to IR and place yet another chest tube. They thought that either the current tube was clogged, or the fluid in his left lung was in a place that the tube could not reach. At about 11 am a surgeon came into the room to make sure that we understood the procedure. During that visit, she did a hail Mary and attempted to pull the fluid out one last time. And who would have guess that the clot came out and so did a boat load of fluid that had been building in his left lung. This meant that we did not need to get another tube placed. To add to our good luck, we had a great nurse who was determined to get Elijah up and moving. We went on a little walk and Elijah got out of his room for the first time in over a week. That really seemed to lift his spirits. I actually saw him smile last night.

Today was much of the same. Heart-wise, he is doing good. He is on oral medications and has been weaned to 1/2 liter of oxygen (the lowest they will go while there are chest tubes in place). During rounds, the doctors said that we are basically waiting for the fluid to stop draining. They can't estimate how long it will take because quite honestly, Elijah has taken his own route on this. We did learn that his fluid output is not fatty. Apparently when they have this much output, and it is fatty, there could be bigger issues.

We were moved to CV Acute, the stepdown unit today. I know that this is considered a good thing. We are no longer needing the CTICU team and that is definitely a good thing. However, the care in the CTICU is excellent. Elijah has had so many major setbacks, I am fearful of leaving. The doctor came into our room to talk to me one and one and make sure that I was okay with the move. He has been with us through this crazy ride and I think he knew I would be hesitant. So here we are, in a shared CTICU room. Hopefully it will be peaceful and everyone will be able to sleep!

This is what true strength looks like...

Day 10- 3 Steps Forward....

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.

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.

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.

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.

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.

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.

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!

Fenestration what????

So first let me tell you that today sucked. I mean royally sucked. Basically, Elijah's numbers went completely wonky this morning and he made everyone, and I mean everyone, work for their money. At one point we had 20 people in his little room trying to figure out what was going on with him. Although they discovered that his fenestration had indeed closed (say whaaaatttt! who knew this could happen????), they agreed that they did not think that this was the problem. After a big pow wow and some serious argument, his team believed that if they backed off of his meds, added another chest tube to address the fluid in his lungs, and gave him some time, he may be able to adjust. So far, so good. They took a different approach and he has been responding well. His chest tube dumped a large volume of fluid and his breathing became far less labored. He is still being supported by a great deal of oxygen and quite a few meds, but he is stable. Hopefully, he will remain this way throughout the night so that he will be stronger in the morning. His night nurse is amazing so I am hoping he will continue to rest throughout the night.

Fontan Night 1

Elijah did okay over night. They had to medicate him every hour to keep him calm. They are restricting his fluid intake and man oh man did that make him angry. Every hour, once the medication wore off, he would demand his water bottle. The nurse was able to keep him calm until around 5am. He became incredibly agitated and was thrashing around. They had to restrain him and put him on additional sedation. This was so hard to watch. During all of this, his heart rate increased and his sats decreased. He also developed a fever.

During rounds, the doctors developed a plan for Elijah to address his heart rate/rhythm issues which includes both medication and a pace maker. They also discovered that Elijah has fluid around his left lung. They are going to start him on lasix to helpfully dry him out and therefore negate the need for an additional chest tube. Basically, we now sit and wait and see if the medication does its job. Hopefully they are able to keep him calm and resting in order to allow his little body to heal.

Fontan Day 1

So today was THE day. I have decided that the hardest thing in life, as a mother, is handing your child off to complete strangers fully knowing that they will cause your child hurt and pain and yet also fully knowing that there is no other option. This was by far the worst experience so far. I have been through this several times already and having a child that can voice his fear and pain is like having someone reach into your heart and tear it to pieces little by little.

All of this aside, the procedure was a success. The did have to give him a fenestration, but other than that, it was a typical Fontan. They were able to pull his breathing tube before returning to the floor, which was good. However, his heart is having rhythm issues and he is on a pace maker. They have restricted his fluids which is making for a very unhappy little boy, but they are working to keep him calm with medication. Right now he is resting comfortably. Lets hope for a restful, healing night.