"Liam has proven to be his own man"

While this picture may not look like progress, it is. One month ago he had his first OHS. 2 weeks ago, he had a second life saving OHS. We are getting closer to home, I can feel it now. There is true progression each day.

So I feel like every time I blog, I jinx Liam's progress. I tend to stay upbeat and positive, because I truly only want positive thoughts, but as soon as I submitted my little Valentine's post, the you know what hit the fan.

I had been playing with him for about an hour on Sunday afternoon after my Mom and Dad went back to NJ after spending the weekend with us.He was getting sleepy, so I picked him up to rock him to sleep. I look down as I stood over the crib and notice his Blake chest tube, which sits in the center of his chest, was hanging quite a bit lower on his legs than normal. I laid him back down and asked the nurse to take a look- thank God. A few minutes later as we waited for the doctor, it began oozing the fluid it was originally collecting inside the tube, meaning the tube definitely had moved in the insertion area on his chest. The suction was still working and the doctor ordered an xray to see if it had moved inside of him.

The way the Blake works is it is one long tube, one end started in the left lung cavity, looped through the center, over to the right lung and then out of his chest. Each area had a small hole where the fluid would collect in the tube and suction out into a bulb at the end, which was what laid on the outside. Well, the xray showed the tube was no longer even in the left side of his chest cavity. The surgical team came to take it out and said the xray also showed that air had been getting in to his lungs through the insertion hole. The doctor said the fluid was not at a significant amount so they did not think they needed to put more tubes in, they were going to take it out in a few days as it was.

But as luck would have it, the big risk of pulling any chest tube out is collapsing a lung and unfortunately, yet another complication added to our list as his right lung collapsed. It was a scary hour for me, because I was sitting down the hall, watching all the flurry of activity and scared that I somehow did this to him. The doctor assured me that the tubes do come out and it wasn't, but I was the one holding him as things went to hell. Because of the lung collapsing, they immediately had me sign consent forms for them to put a different chest tube on his right side to get the air out. There was a small pocket of air on the left but that lung was still stable.

The difficulty at this point was the air being in a tiny space and that both sides would have scarring from the first set of chest tubes. At the end, they only put it in on the right side because the left was too dangerous and the air was not a risk. As soon as the tube was inserted, the air came out and his lung came back up.

I had held it together pretty well for three weeks but this hit me hard- we were so damn close to the end of the road for him and yet, another blip on the radar. I got a lot out of tears out on Sunday..in fact, I think I terrified the doctor who has been with us this entire time. I did ask about prognosis and what next steps were, and one of our two favorite doctors, Dr. Bird, made a pretty funny comment about what most kids would do followed up by, "although I think we all know Liam has proven to be his own man". Happy Valentines Day to me.

Sunday into Monday was one of Liam's worst nights, hospital or home. He screamed most of the night, mostly due to discomfort and that they weren't feeding him. They wanted to wait to Monday morning to make sure the left side did not need a tube, if he did, he had to have an empty stomach. Thankfully, they allowed him to eat..and by bottle! It was the first time in three weeks and he kicked ass. He would eat 2 oz most meals and then full bottles here and there. It was a great relief!

On Tuesday, he woke up working a little bit harder to breath. That morning, we were moved from our private room back to the open pod to allow an older kid to have some privacy. I packed up all of our stuff and by the time I got back to his bedside, the team decided it was time to put in the chest tube on the left side. That side was filling up with fluid that had no where to go. On the right side, it was draining a very small amount. So on Tuesday, he had his 5th chest tube this stay put in.

Going back to 'being his own man', our other favorite doctor, Dr. Naim came to me after the procedure was over with a concerned look which of course, made my heart drop. She told me he was ok but despite the large amount of sedation he had, he never fell asleep. In addition, he watched the entire procedure with much curiosity. Sigh. My 3 month old little man is more intrigued now then scared of having metal instruments placed in him. Not a good sign for my future endeavors as he gets older.

Today was a good day for Liam- he ate for me, 3 oz at a time, played and even smiled at me first thing this morning. I held him for about 5 minutes but he was in pain and we put him back down. We had a bath and a good long nap, something he needed. My dad came down to visit after work and it was nice to see Grandpa playing with Liam again. My mom and grandma are coming tomorrow night, then Alex is back Friday after work. The days actually fly by here. By the time I pump, feed him, take a shower, or grab a bite to eat, the cycle begins again. He is much more awake here than he is at home and we play, read, stare at one another, quite a bit. Hopefully once we get home, he can sleep better in a much more quiet place!

On a sad note, this is a children's hospital with quite a few sick little ones. We have become friends with many parents, some living here full time with their kids waiting for transplants and it hits us, we have it good, despite all of this. I found out this evening that a family was told their little girl might not make it. And throughout the last 24 hours, several kids, including a 10 month old baby of new friends of ours, have been coding. Please just say a quick prayer for all these little innocent kids- its been heartbreaking to watch my own son go through this, much less be of much use for a parent who has it worse. I try to remain positive for my sake and theirs, but I know the power of prayer and faith is strong.