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!