This conversation happened during our big day in spine clinic last week with spinal x-rays, a spine rod expansion in ultrasound, and then a meeting with both the spine surgeon and the head of pulmology. There was a lot to this appointment, but the Pulmonologist sat with me and really wanted to be sure that I understand that Aimee has Chronic Respiratory Failure due her inability to exhale carbon dioxide. He said that her left lung is not functioning nearly as much as her right lung. There are a few implications particularly to be aware of during illness. Basically he said to pray that if she gets a respiratory infection next winter that it hits her bad lung, not her good one. He said it will take her longer to recover with an infected bad lung, but she will be much more sick if her good lung becomes infected. They consider her stable still, but are really watching the levels in her blood as an indicator of how well the respiratory supports we have in place are doing for her. They are not happy with her current numbers and want to see improvement in the coming months, before next winter especially.
He was also concerned with how her weight growth curve has changed over the past 2 years. She has gone from steady gain, to maintaining, to losing ground. We are trying to address that with increased food, but it is a slow process with the j-tube feeds.
In the midst of these things, the process of adolescence is upon us causing some odd behavior, new seizures, and concerns from many practitioners about how puberty is going to shift the situation. Every doctor says that this is a critical time for their area. We don’t really know how hormones and cycles will change life for her, but, like it or not, it is upon us.
Overall, Aimee is generally happily spending time with her brothers, time in the sunshine, and, of course, lots of time snuggled up in her bed for whole days sleeping. It is hard to believe the dark picture that lurks in the background. Whatever the future holds, however far away that may be, we are enjoying the sunshine, the view, the joy as we walk across what we are cautioned is a thin ice plateau.
We saw Aimee’s neurologist last week and discussed some episodes we had just started seeing in the past 6 months or so. At first I didn’t think that they were seizures due to the extreme vocalizations that happen during, but the neurologist thought that they were definitely seizures. She recommended doubling the dose of one of Aimee’s seizure meds and we compromised at a 50% increase with the agreement that if we continue to see them that we will increase again. Given Aimee’s struggles with energy, I am always hesitant to up meds that may make her any extra drowsy. It will take about 1 month for us to tritate up her dose to the increased level and we are hoping for no decrease in alertness.
We took her back down for a routine GJ tube change in Interventional Radiology. She did great with the change and I was grateful to have a nurse to help as I could not be in the room with her. It is pretty complicated to coordinate between having a young child along who cannot go in the room, being pregnant so not being able to stay there, and needing to gown up in the surgery suit in order to take Aimee in and to move her onto the table. Moments I am so grateful to have a nurse!
This week we also met with the sleep pulmonologist. There was some confusion as one of the settings that they planned to change was not a setting available on our machine. We are also concerned about how high they have turned up her back-up rate. They decided to bump her up to 24 breathes per minute. We’ll see what bloodwork shows, but it seems like she won’t have enough time to exhale between breaths. She has also had some of those big desats she had before with a pressure change, though not nearly as many as before. It seems like they’re not entirely sure what the best course is going forward, so we wait for the next blood results in about a month.
We are interviewing a second nurse this afternoon and praying that she is a good, right fit for our family. It is so hard to have a stranger come in to take care of your vulnerable child in the midst of family life. Yet, we need to have that care established before baby arrives at the end of August. With how long it has taken for them to hire a new option, there is some pressure to accept this new person.
In family life, our cow delivered another heifer this week. There is new life and new experiences all around us. I especially love seeing Walter sit outside in the garden quietly watching new things, listening to birds trill at him, excitedly name the animals he sees, or sit in front of my berry bucket happily eating as I go. 😂
