The Latest on Antonio

I really hate that I have to write this update tonight.  Yesterday morning around 6:20am we got a call from the PICU, Tony was coding. We physically ran to the hospital. By the time we got there he had been coding for probably 10 minutes. They told us he got upset, probably trying to poop, and his oxygen saturation dropped. Then his heart rate went with it. They tried to use the ambu bag to give him breaths instead of the vent and couldn't get his airways to open back up. After probably 30 minutes of chest compressions they decided to try to put him on ECMO. That's a machine that basically does the work of the heart and lungs for a time. At first we said okay, but after seeing how long it was taking to get started, knowing that he had been without much oxygen to his brain for more than 30 minutes, I started telling them that I didn't think we should proceed. They agreed that there was almost no chance that his brain was being perfused most of the time they had been doing CP

Easter week was decent, we were increasing the trigger trials by 2 hours every 2 days and had gotten up to 18 total hours from 12am to 6pm by Friday. He wasn't doing perfectly prior to Friday, but not bad enough for us to stop increasing the trials. He had an increase in his secretions the week before, and we kept thinking he could be getting sick but nothing came of it. Friday night he woke up from his nap and his breathing looked awful, and it was still terrible 2 hours after his trial had ended. He had a pooping episode and then calmed down, so we thought maybe that was it.  We held off on the trials the rest of the weekend, but by Sunday afternoon he was really working to breathe and they decided to swab him for an infection and start him on nebulized antibiotics. Monday night the swab came back and he had a pretty large amount of bacteria grow, but thankfully the nebulized antibiotics covered the bacteria and he started looking better at the 24 hour mark. The rest of this week

Not a ton of change this week!  Tony has consistently gained weight the past two weeks for the first time, actual weight and not water weight. He hit 6 kg Thursday, that's about 13 lbs 4 oz. He also took his entire bottle for the first time yesterday! He gets 73ml every 3 hours through his g tube. If he takes a bottle, whatever he doesn't drink from the bottle we put the rest through his tube. So this was the first time in his life that he didn't have to use a tube to eat, that's a big deal!  Other than that we increased his trigger trials to 6am to 6pm and he's tolerating that. He was also signed off on by the endocrinologists and the cardiologists. He no longer has adrenal insufficiency, meaning his body should be able to react to normal amounts of stress now without needing steroids. They also no longer have to watch the device that they used to close his PDA, it should be set in with no risk of it migrating. His pulmonary hypertension has resolved (at least for

The hiccups this week were few and unimportant mostly. Last weekend Fredy and I finally got away for a little more than 24 hours together. It was planned all week because we knew that there were chronic vent nurses working the days and nights that we needed them to, and everyone was so excited for us. It was really really nice, and very needed. Of course Sunday the nurse who had him Saturday called in, so when I called in to check on Tony it was a brand new nurse who had never had him other than one day on his orientation 2 months ago. There was even a nurse on our "list" in the same hall that wasn't placed in his room, it turned out that the night shift charge never saw the list. Thankfully everything was fine. I'm very glad we left, even with the added stress Sunday. I hope we can do this more in the future.  The nurse manager came and apologized and it was all very productive in the end, so I think it can be even less stressful going forward. We were also supposed

The past couple of weeks have been both truly amazing and difficult. Tony seems to be catching up on lost time, which has been thrilling to watch. We basically waited for 7 months to see him progress developmentally in many ways. He's four months corrected age tomorrow, and he's hitting almost all of his milestones based off of that age.  He passed his swallow study last Friday and was cleared to have a bottle for 15 minutes before every feed, meaning whatever he doesn't take in that time will be poured into his feeding bag and we use the g tube. He seems to really enjoy it, even though it's not 100% easy for him, and we have to take lots of little breaks to let him catch his breath. He was doing so well with his latch to the bottle and even his little mouth swabs that I decided to try breastfeeding. To my surprise he latched and nursed for the full 15 minutes! So now we are approved to do either bottle or breastfeeding before each feed. Everyone is shocked and most peo

Thankfully it was another mostly uneventful week. We took the ativan completely away Tuesday, and I think that Wednesday he started to really feel the effects of that. The withdraw symptoms weren't as severe as in the past, but he wasn't himself. He also got 3 vaccines that day so Thursday he really didn't feel well. Today was better, but there were still some lingering issues. He was able to take 13mls from the bottle Monday, 10mls Tuesday, and then only 5mls Wednesday and today before spitting up. We didn't even attempt yesterday because he didn't even want the pacifier. Hoping that tomorrow he'll be back to himself. They didn't touch his vent again this week, which was great because he already struggled a little more with how he was feeling. Monday they'll talk about starting to make it harder for him to trigger breaths again so that he can work towards the home vent. Hoping and praying that he doesn't hate that too much! Grateful to have him here