Surgery and the Week from Hell

 So Monday Jan 20th arrived and we got up to the hospital early so we could spend some time with Wyatt before his long awaited surgery to get everything all put back together. He looked so good and was surprisingly happy considering he hadn't been given any food since 2pm the day before. We were super nervous but excited for his surgery because he needed to be put together before he can come home and we really wanted to get rid of his ostomy and his mucous fistula, but it is also a major surgery and he's still so tiny. It was so hard to take him downstairs and have him be wheeled away. His surgery lasted about 1hour and 40 minutes and when we came back to see him he was actually awake. They had talked about taking the breathing tube out because was doing so well, but then they wanted to keep the tube in so we could manage his pain well without worrying about him not breathing. We had to go up on his pain meds several times that day because he was in so much pain so we were glad he had an airway, but it was not fun having that breathing tube in. The next day we were really hoping to get that tube out but the nurse didn't want to change his pain meds so we left the tube in for another day. At that point he really wasn't breathing anymore on his own and was relying completely on the ventilator.

Right after Wyatt got back from the OR

They wanted to leave a drain in his incision for 4 days so that his belly could drain to help prevent infection

Wednesday came and he still wasn't breathing anymore on his own. We decided to cut his pain meds in half to see if he could get him breathing. After a few hours we stopped the pain meds completely because he still wasn't breathing. After that he really started gagging and coughing on his breathing tube. It was awful to see because he would cough and gag and since the breathing tube is in he wasn't able to cough out his own secretions so the nurse would have to suction them out. When they suction him it pulls all the air out of his lungs with the secretions which scares him and then he would try to cry and his oxygen levels would get really low. This happened multiple times every hour. It was so painful to watch. They had been checking chest x-rays and his right lung was collasped which they attributed to his secretions blocking his airway so we were working on getting his lungs re-expanded too. After 8 hours off his pain meds he still wasn't breathing consistently on his own. We decided to restart the morphine to see if maybe he was in so much pain and it hurt to breathe so he decided not to breathe. He also still seemed super sedated. Because he kept coughing and gagging that night we got another chest x-ray and they sent a respiratory viral panel and unfortunately we found out he had rhinovirus and his chest x-ray looked like he had viral pneumonia. When you have a breathing tube it causes your lungs to make secretions and the rhinovirus causes secretions, but then he couldn't cough him out and needed suctioning which causes his lungs to collaspe so at this point we were in a vicious cycle and his blood gases were looking worse and worse so we had to keep increasing his ventilator support. They also started some steroids to help with the stress of surgery and his cold in case adrenal insufficiency was part of the problem which is common in premature babies. He also had a lot of fluid on board from his surgery and was pretty swollen everywhere but especially in his face. This is caused by the stress of surgery and being sick. 

They had to start poking his fingers for blood gases because he wasn't perfusing his feet well. It was so sad to see all of his little fingers get poked

Isolation room for the rhinovirus

Looking really puffing post op

Thursday morning started off bad. He still had his breathing tube but was finally starting to breathe a little more on his own. He was really sensitive for any noises or touching or any kind of stimulation. They took the rate off his ventilator to see how well he would breathe on his own. During the trial he completely stopped breathing and turned blue and the nurses couldn't get his oxygen saturations to come back up and they got so low that they were undetectable. Soon his heart rate started to drop and got as low at 49 at which point the pressed the code button. The whole medical team came running and luckily they were able to get him back up once they bagged him without requiring chest compressions. The rest of the day was kind of touch and go. They had to change us to an isolation room because of the rhinovirus so that he wouldn't get any other kids in our room sick. Later that day he woke up for the first time since he came back from the OR. He was looking really good, but again he kept gagging on his breathing tube and coughing and getting mad about it. They repeated a chest x-ray and it was starting to look better so we decided to pull the breathing tube. He did really well for the first couple of hours afterwards but then started having some desat episodes where his oxygen levels dropped. After watching him during these episodes we figured out they were pain related. He would squirm or take a big breath which would hurt his tummy and then cry and hold his breath. The faster we could respond the better he would do so Scott and I didn't leave until really late that night. His nurse pretty much couldn't leave the room or she would have to get a baby sitter to watch him when she left. Once we got on top of the pain he seemed to get a lot better so we eventually felt okay to go home and try to get a little sleep.

On our way to the hospital Friday morning we got a call that he had coded again that morning. This code lasted about 2 minutes and again his heart rate dropped really low. They didn't have to do chest compressions and he came back up with bagging. For the next 3 hours he looked really good and didn't have any issues. They decided to start another medication called theophylline that is similar to caffeine to help his breathing as well as dilate his bronchioles and increase his urine output to get some of that extra fluid off. Right when we started infusing the medication he starting squirming and then his heart started to drop, he held his breath and within seconds his oxygen levels dropped from 96 to 80 to 58 to 7. By the time the nurse got to his bed he was dark purple and his heart rate was in  the 40's again so we called another code. Everyone raced back to his bedside and worked on him for a couple of minutes. The got a bunch of labs on him and checked another chest x-ray and no one could figure out what was going on. He sounded good, his labs were good and his x-ray looked better than the previous one. We changed his respiratory support to CPAP with a rate which is the highest support you can give before putting the breathing tube back. After this second code he looked surprisingly good and was awake for the next 3 hours. They did an EKG and had cardiology come and consult to see if any of these episodes were related to his heart which they didn't think so. We also discussed doing some brain studies of he had another episode to rule out seizures. Luckily the rest of the day was great. He was still on a lot of respiratory support and on all of his medications but at least he wasn't coding any more. He even got stable enough that we were able to hold him again and give him a sponge bath which we hadn't done since before surgery.

Chest x-ray right after his 2nd code on Friday

Happy to be extubated and able to suck on his binky

Finally looking a little more stable and snuggling with dad

We stayed at the hospital again Friday night and haven't left yet today. He has been stable all day today with only minor dips in his oxygen levels. His voice is really hoarse and he keeps coughing because of the rhinovirus which hurts his belly, but overall he is doing a lot better. We still are waiting for his intestines to start working again before we can restart his feedings and he is starting to act really hungry so we hope that is soon. We have been so grateful for all of our friends and family who are praying for us and have been supporting us through this really challenging time for us.