Snowy Saturday

Liam and Glo-worm have developed a weird ET like relationship. It calms him immediately and he can just stare all day at Glo-worm.

Not much to update- his chest xrays this morning looked better than yesterday which is a positive sign. Doctors think we will be here still for a while until he starts to slow up on drainage, which definitely hasn't happened yet, he is draining 600-800ml a day. I'm getting more anxious to actually hold him and feel his skin against mine, and from the looks of it, he is too. Its hard to get the stares, cries and then, the sigh of defeat from the little man. He has a line that feeds directly into the right atrium and as long as he has that, we can't hold him.

He isn't on much right now in terms of meds compared to last week when we didn't know what was happening to him. Liam has developed some small clots so they have him on Heparin to help thin it out. Because of his chest drainage, he is losing proteins, platelets, etc so they are trying to replace those as they come out but other than just plain IV fluids and some Valium for discomfort, he looks better than he did before the second surgery, which gives us hope. At that time, he had 4 IVs and about 12 different meds going in. We are on one IV and one main line now.

We are starting to climb the walls in the are we ever going to leave sense. Its so hard to watch him, losing weight, not the same personality or spunk as he had when we first came. He is definitely going to need to start eating to get back to his chubby wubby status. Hopefully the doctors will let him start feeding sometime over the next few days, he hasn't had a bottle since last Monday. I prefer my baby with little baby fat rolls! Thanks to all for the prayers..we asked the chaplains here to visit with us as well and we will take the love and thoughts from all.

Thursday, 2/4 11am

Post Op #2

Liam ended up going down to surgery yesterday first with Dr. Spray. We rolled him down in his bed at 7:30am and I asked the doctor if we could at least kiss his head, since we couldn't hold him this time. My parents kissed him, then Alex and I was allowed to hold his head and kiss him. As soon as I did and whispered a few encouraging words, he began crying so hard and tears were just everywhere, between Liam and his parents and grandparents. It about broke my heart. I snuck his teddy bear in and told the doctor Patton would be watching.

We met with Dr. Spray until about 8:15am and he explained what he thought happened. Where the patch was, basically in the corner of the four chambers, instead of blood flowing across the small hole they left, which is absolutely routine, it was going into the upper chambers instead. He wouldn't know until he went in and saw the heart, but would tell us when he was done.

Our group headed to a lounge area and waited. Our nurse came down at 9:15am and told us that they were already in the chest, which was good news because the surgeons had concern with going through fresh tissue so shortly after the last surgery (they usually wait at least 2 months..this was 2 weeks to the day that they had to go back in). They could see the patch and were about to put him on bypass. A few minutes later, Alex's parents arrived.

We weren't expecting another update to about 10:15 when the nurse came back in about 9:40am and said they were done with the repair and just about to take him off the bypass machine. By 10:30am, we were in the consult room waiting for Dr. Spray. He got there about 10:45a, and basically the original patch had the hole as we know but when the heart expanded, it went from 2 mm to almost 5 mm, tearing across. This was causing the exuberant amount of blood flow into his heart and out into his chest cavity. Poor little man. They reinforced his patch with a particular type of stich and he was on the bypass for only 20 minutes. Dr. Spray was very happy with how surgery went.

It took some time for us to see him but he was out of it most of the day. We had a celebratory lunch at Chipotle, yay, no cafeteria food. Both of our sister's came down in the afternoon to see the little guy. Both sets of parents and Alex's sister headed back while Alex, Heather and I just hung out. I even got Heather to do her homework. Success.

He was awake last night around 9 and just was worming around, dancing, trying to move but he was so sedated I don't think he realized he couldn't move very well. Heather and I went back to the Ronald McDonald House around 10 and played Are you Smarter than a 5th Grader and we are not. Oh well.

Overnight, Liam's temp dropped a little bit so he had a warmer for a little while and the doctor decided to leave the breathing tube in to later this afternoon, allowing him to rest a little bit and take some drugs to fight any anti flammatory issues from having a breathing tube. Heather and I are hanging out in the ICU with the patient, Daddy is working out, showering, getting some normal sense of life back. The doctors are letting Liam take it easy and doing a much slower return to normal, which is perfectly fine with us. Thanks again for all the prayers..just need to get through a solid week or 10 days of good recovery, and then I will breathe again.

Tomorrow

We will be second tomorrow morning for the surgery, first one is slotted at 7 so Liam will probably go around 10am.

We got to see a video of yesterday's procedure showing us the issue today. When they inject the left side of his heart with dye, the right side should not light up at all or minimally. About half, if not more, lights up, meaning that hole is not tolerable and a stitch may have come loose due to the pressures. This extra blood flow causes all the pressures to rise, which is forcing the lymphnodes to leak and the extra blood is then flooding his lungs- before the surgery, he had 80% flow, and should have 100% now. He is at 400% of blood flow which is why his little body cannot get rid of the fluid or breathe well. All is expected to really instantaneously slow down with this surgery.

OHS #2

This is not a post we thought we would be writing. The cath showed that the small residual hole they left behind which typically balances out the two chambers has gotten bigger, most likely the patch tore because his pressures were too high. Those pressures are still too high and is causing all the fluid issues and everything else we have seen since Wednesday.

They called our surgeon who is traveling and he thinks Liam is stable to wait until he returns on Wednesday so he can do another open heart surgery to fix the tear. He knows where everything is, why things were done a certain way, etc If something changes between now and then, one of his colleagues will operate immediately.

While this seems like a set back, it is an answer, something we haven't had in almost a week as we have watched our son get worse without cause or knowledge to effectively treat it. Without this procedure, the worst would happen. The risk of not doing the surgery outweighs the risk of the current day to day care. We are both pretty calm and almost excited to see our little guy be himself hopefully by the end of the week. I dread handing him over again but he needs this surgery and I want him to thrive.

Thank God they found the issue and were able to point to something directly and say this needs to be fixed. We were told that would likely not happen. The power of prayer is on our side and that will help us all get through this chapter. Thankfully, only Alex and I will remember this time.

Procedure Scheduled

At about noon tomorrow, Monday, Liam will have a cardiac catheterization to take accurate readings of the pressures in his heart, veins, etc. Its about a four hour procedure and he will yet again be under general anesthesia. We signed all the consent forms tonight and while we are scared for him, we are very hopeful that this will result in answers. Just pray it won't take a further toll on his body and recovery.

He has taken a beaten the last few days as the doctor told us tonight so we hope this procedure will be the beginning of the answers and a treatment plan. They can't even find a place to draw blood from anymore. When you see your 10 week old's arm covered in bruises that look like a cigar burn, we appreciate those first sleepless nights of our inconsolable newborn more and more. I wish that was the worst of our issues! Apparently, we hit yet another rare column to mark off with the chylothorax complication. We just want Liam to be healthy again and it looks like it will be a timely process to treat the chylothorax after it is determined why he is leaking this fluid.

Both chest tubes are draining a ton of fluid but most of what is coming out now is what they are putting in. I was amazed at the number of IVs and tubes today, well overwhelmed, and recalled that before last Tuesday, he had had only one infant dose of Tylenol for a slight fever before this began! In other news, his original incision from the open heart surgery is basically healed. Little man continues to fight back to the nurses and doctors, love that he tried to pull out his tubes today.

I held him..

I am going to start this blog with good news. Dr. Maim, who we met when we first arrived, let me hold Liam today, tubes and all. It was a major deal to move him with several doctors there but I held my baby..he was still lying on a foam mattress, so I really held that, but I could kiss his head and talk to him. First time in 4 days. Still feel the weight in my arms an hour later.

Well, the bad news is we still aren't sure what is causing the set back and fluid build up and they think its one of two things. They plan to do another procedure on Monday that will be about 4 hours long, to measure his heart and lung pressures and to truly see how his heart is operating post surgery. It will be catheters through his legs that will take long wires up to his heart and be inserted. Wow science. Basically, when they finished his surgery last week, they left a residual VSD (hole)less than 2mm at the repair patch, which the majority of babies tolerate very well. They typically just close on their own as babies grow but with Liam's set backs, it may need to be fixed if it is showing that this is the issue which is then pushing fluid out into the chest cavity because the right atrium's pressure is too high. There is a chance that he just isn't tolerating it and causing all of this fluid build up in his lungs. If they see this is the cause, they may be able to also fix the repair during this procedure by putting a tiny balloon through the catheter. If they can't do it this way, it will mean another open heart surgery. We are praying for it to be fixed in the catheter procedure so we do not have to traumatize him any further. And his incision has actually healed already, one scar is enough.

In the meantime, he has two chest tubes in now and it is draining a lot of fluid. The left side is a little under 800 ml and the right side is catching up, since it was only put in yesterday morning. He is so tiny, so to think of all that fluid, its unbelievable. They confirmed the fluid coming out is something called chyle, which is lymphatic fluid. Typically, cancer patients have this and cardiac surgery patients. However, his type of repair was not one that would have injured the lymph nodes and the repair was not near the duct that carries chyle so this is really why they are doing the procedure. The team here is unsure of why he would have this fluid, so while they are in there, they will also check the duct that carries it. If it ends up being the duct, this is a long process to treat. We start with his feedings (chyle is the fat fluid your gut makes so food effects the amount of fluid he has). They already started him on prescription formula and once the tubes finish draining, he needs to remain on this for 30 days and then start weaning off it. If the formula doesn't work, there are some medicines but the results are not great, 1 out of 15 it has worked in. The best treatment really is another surgery, similar to a vasectomy, they basically clip that duct off because we don't need the chyle. This is hard to explain so I'm sorry for the confusion. I have a picture the doctor drew but we are limited in scanning!

We hope its one of these two issues because we simply are just waiting for a treatment plan and in the meantime, he is sedated, with tubes coming out of him, and its plain scary. He is stable and that's the best thing but it looks like with either outcome, we will be in ICU for some time. Chyle is very hard to treat and can take weeks to months of treatments if its not repairing of the heart..again. This is heartbreaking for us so we are hoping he does respond well to the plans that come out of Monday's procedure. We will update the blog probably late Monday or on Tuesday, they won't put him under to late afternoon\early evening. We know so many people are praying, please keep my baby in your thoughts. While I am dreading that this might mean several months in the hospital, I just want to take him home healthy.