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) for 2 hours. The hope is that the extra pressure that SCUBA provides will help open that lobe up, but this also gives David a break from being on SCUBA constantly. He tends to keep his mouth open when he’s breathing, so all the additional pressure that is being supplied to his lungs to keep them open just escapes through his mouth, but SCUBA doesn’t allow that pressure to escape. He’s already receiving maximum amount of respiratory treatments with chest beaties and nebulizers every 4 hours, so there is not much else they can do to try to open up that lung. The team would prefer to not intubate him again, but may have to if SCUBA doesn’t work.

David’s kidney labs were more normal today. One of the numbers is back to within normal range, and the other is trending in the right direction, but it may take a little time for it to come down. The ultrasound didn’t show much change from yesterday, but the kidney doctor came by and said things are hard to see. She still believes that the additional fluid is helping out his kidneys and that there is nothing additional that needs to be done. She also does not believe he has any stenosis – thank goodness! If he did, his blood pressure would be quite elevated and he would be on several blood pressure drips to keep it down. His kidneys are not perfect, but that is to be expected based on his heart physiology. They don’t quite get the amount of blood they want – they want want lots of fluid. However, for his heart to pump as well as it can, it needs him to be quite dry. So, it’s just finding the balance and walking a tight rope to try to keep his kidneys and heart/lungs happy and in a good place. This evening, they decided to start some dopamine to help him. This is a medication David has been on before, and they are choosing the lowest dosage. It’s a med that can raise his blood pressure a little bit, but more importantly, it helps with perfusion of blood to the kidneys. The hope is that his kidneys appreciate the added blood without putting too much more fluid into him. If his blood pressure gets a little too high, he’ll have some nipride ready to bring it back down. Everything is a difficult balance with David. 

This morning, David was very alert and awake for quite some time. He even started giving some smiles again! He was also had a visitor from the cardiology clinic. David was excited to show her his beach bod, although it is a little more puffy from Monday since now he’s trying to retain a little more fluid. 

David continues to spike fevers and get his art line dressing dirty. Today the dressing needed to be changed twice! Usually the dressing should be good for 1 week after it’s been changed, so changing it daily and now twice daily is getting to be a bit much. Anyway, both the fevers and runny stools are signs of withdrawal. David says it is not fun not being on sedation meds, but he’s trying hard. 

David was visited by all the different therapies today. Music therapy came by and sang some songs to him. Then OT came by and worked on stretching him out. While OT was here, speech stopped in as well. They were hopeful that he was taking his bear pacifier more than he is. A lot of times it just sits in his mouth and there’s not a lot of sucking motion (likely because his throat is sore is my guess). It took some time, but he clamped down on speech’s hand twice briefly. He still is not allowed to eat, so we cannot start paci-dips yet, but at least they have a baseline as to where he is and that it might take quite a bit of effort to get him eating again. Our child family life specialist also brought in some new toys and a mirror to try to make OT more fun – although, David really needs to open his eyes to see the toys. He had his nurse, OT, and child family all trying to play with him and get him to look at the toys – he really does love when everyone visits. 

Today was trivia day – the theme was fill in the missing brand. David got second place! First place answered the questions so quickly, and David was doing his best to make sure to read all the answers before selecting an option. He was quite excited to get second. Later in the afternoon, I got to play with Fern for a moment. She’s such a good dog – she was playing tug with her mom, and then I was going to play tug with her. However, she sees me as a patient so she’s very gentle and doesn’t really want to play tug because she thinks pulling hard is not allowed. After we both raced for her toy, then she realized she can pull as hard as she wants so we got a good tug session in. 

Then this afternoon, David and I had a nice long snuggle session. He mostly slept and seemed very comfortable. When he opened his eyes for a brief period of time, we read one of his books and looked at one of his toys. Eventually though, I needed to go home – I couldn’t believe it was STILL snowing. It really can stop anytime now, and we don’t really need rain either unless the temperature is above freezing. 

As for the others – Anna had a followup ENT appointment. She got tubes put in over a year ago, so she’s been getting followup appointments every 6 months since then. Her ear clinic is right across the street from the hospital, so I brought her and Eli down with me this morning. They hung out with Adam doing some activities until her appointment, and then after the appointment it was time for their adventure – Nickelodeon Universe at MOA. When I chose her clinic date last September, I was expecting to be grieving the loss of David at this point, so we chose a Tuesday for Toddler Tuesday to allow them a day of fun activities. They still got their day of fun activities, but under different circumstances. Her hearing is good – one tube is out some fluid but normal levels for a cold, and now she’ll have another followup in 3 months. They had a blast at MOA even though it was super busy according to Adam. Eli usually sticks to two rides (big rigs and Paw Patrol), but this time they tried a few more.