David has had another day with not a lot of changes. These are good days. He was super excited to have the nurse who has cared for him the most back today, and gave her a few of his rare smiles. The plan for today was the same as yesterday - RAM during the day … Continue reading March 29, 2024
Author: Jess
March 28, 2024
Small changes again today. First, after 43 days, David's art (artery) line was removed. This was in his left femur, and close to the groin - he was starting to get it dirty every day from his diaper and he started to get a sore near it. It was time for it to come out. … Continue reading March 28, 2024
March 27, 2024
Another day heading in the right direction. It makes Adam and I laugh when they introduce David in rounds now. Usually they give a short synopsis on the diagnosis and procedures so far so that everyone is on the same page, but lately they have just taken to "Now we have David Tilly our 4 … Continue reading March 27, 2024
March 26, 2024
Today, David's right upper lobe of his lung is more collapsed, so to try to get that opened up David is now on SCUBA for 4 hours followed by RAM (I think this is the term they used - I'm not sure if it is BiPAP or another setting but it's with the nasal cannula) … Continue reading March 26, 2024
March 25, 2024
Busy day for our little guy. For the third day in a row, David needed his art line dressing changed. His stools are super liquidy, which is a sign of withdrawal, and they keep finding a way onto the dressing. He is off all his IV sedation drips now, and you can definitely tell he's … Continue reading March 25, 2024
March 24, 2024
Happy snowy day! I don't have much to report since I spent most of the day at home - had I realized that the snow wouldn't start sticking to the roads until this evening, I would have stayed longer. I brought Eli and Anna to the hospital once everyone was awake and dressed this morning … Continue reading March 24, 2024
March 23, 2024
Today went really well for David. After 38 days, he was finally reunited with his best friend Bear. I wasn't sure if he would remember Bear or even want anything in his mouth at this point, but he immediately was happy to have Bear back. David was extubated this morning, and is currently on CPAP … Continue reading March 23, 2024
March 22, 2024
It was brought to my attention, that today is day 50 of our current hospital stay. In some ways it feels longer, and other ways it doesn't feel like that long at all. Well, today was a fantastic day for Mr. David. He exceeded expectations with his fluid goals and only took in 519 ml … Continue reading March 22, 2024
March 21, 2024
David had a great day! He tolerated a sedation wean over night, and then again this morning. He was doing so well, that they weaned him again this afternoon and may wean it again this evening. He's mostly happy when he's awake and falls asleep calmly. His pneumatosis seems stable. They switched him from 2-view … Continue reading March 21, 2024
March 20, 2024
I would like to say that it was another fairly uneventful day today; however, David's x-ray this morning was showing a bunch of gas in his intestines. The prevailing thought is that this is pneumatosis, so he is still NPO (no feeds), and was started on 3 different antibiotics. This was a fun exercise for … Continue reading March 20, 2024