As most of you know Gabriel recently spent a week in the hospital with both a viral and bacterial pneumonia along with RSV and a Corona Virus. Since the pneumonia were in both lungs, I guess you could say it was quadruple pneumonia with a triple viral infection. The kid continues to defy the odds. Amy and I are going to have him start picking lottery numbers soon.
Even previous to this, our next adventure was to try and figure out why he seems to be chronically congested and sick. Last year we did a sleep study which identified low oxygen levels in his sleep as well. All of this is related to the epilepsy – both the damage that it can do to normal developmental processes, and the effect of the multiple drugs he is on on the development of muscle tone. All of this effects sleep, eating, etc. One of the issues G has is a tendency to aspirate liquids and food – meaning some of it gets into his lungs. He may also be having night reflux which aspirates. All of this because the muscles in his mouth and throat, and his swallow reflexes have been reduced by either the epilepsy, the drugs, or both. This is, they are pretty sure, the cause of his overnight fever spikes (104 or so) from time to time, his lower than normal Oxygen levels, and his vulnerability to more serious long term infections.
So with all of that, we first visited a Pulmonologist – Dr. Taylor who was one of the most informative and helpful practitioners we have come across. Without being to snide – its amazing how much of a quality difference you can see between sub specialties at a given hospital. I could go on and on about the Pulmonology department, but I’ll just say this – if your child has issues that these docs address, you are in wonderful hands.
Dr. Taylor examined G and suggested that we be seen by the Aereodigestive Group. A newly forming unit at Children’s Mercy. The group is made up of doctors and other specialists from a variety of disciplines. It is a collaborative effort at diagnosing and charting a path for complex patient cases. Here is what happened when we met with them.
After talking with an intake nurse and giving a complete history a few weeks ahead of time, we arrived and, as usual, were weighed in and got normal vitals etc. Gabriel was given a hearing test (not sure how that played in but it was in a cool spaceship like thing), and then we all went together to meet with the team. There were 4 or 5 doctors including representatives from Ear Nose and Throat, Gastroenterology, and Pulmanology. In addition to the docs, there was an occupational therapist, a social worker, and one other person I cant recall what they did.
The intake nurse went over our case with the doctors describing the referral from Dr. Taylor, along with the intake information we had provided. She reviewed all of his medical history with them but it was clear they had all read up on Gabriel’s case ahead of time. They then began asking us questions, exploring in more detail the information we had provided. At the same time, the OT was working with Gabriel to asses his swallowing and other reflexes etc.
I felt like we were on an episode of House, except we were participating as a part of the diagnostic team. Most importantly they were practicing careful, active, and attentive listening. Our whole experience with this team and Pulmanology reminded me of our experience at Johns Hopkins, where the Doctor met us in the lobby, and then orchestrated the team listening to us and giving us feedback one by one. It is amazing what a little active listening and collaboration can do to instill respect and confidence in parents of sick kids. Some day I will write an autobiographical paper on the varieties of experiences we have had through this journey.
After the pow-wow we were dismissed back to our room. The team met together for 15 minutes or so discussing our case and preparing recommendations. Then one by one they came in and examined Gabriel individually and shared with us their recommendations. The best thing about the approach is that it utilized a diversity of specialties to propose one unified game plan for helping deal with G’s issues. So, this is what they recommended.
He has significant issues with oral skills and oral reflexes. This is related to the kinds of drugs he is on (mostly neurological depressants) and the impact of the epilepsy itself. He needs significant continued attention to the fine and gross motor skills necessary to rebuild these skills and resources. (In other words targeted Occupational and Physical Therapy).
However – given the behavior issues and the way those have been address positively by the ADD medicines they want to continue those (thank goodness) but the addition of those meds have lead to weight loss (Fairly significant). He also is not getting enough hydration which affects his ability to have productive coughs. Everything is so interconnected. So in order to better hydrate him, give him the time to practice eating instead of trying to get lots of calories in him, to avoid the battles over liquid medicine that sometimes may be aspirated as well, and in order to get the proper amount of calories while also keeping his behavior regulated with the ADD medications. They are recommending supplemental overnight feeding with a G-Tube.
After getting over the frustration of not being offered this option during the Keto Diet nightmare – (The doctor told us how much easier it would have been with it – almost wish we had not heard this), We were both nervous and excited about the possibilities that the G-Tube could afford. Namely, we can work patiently with Gabriel to eat at a slow pace without worrying he isn’t getting enough nutrition. We can work on his fine and gross motor skills necessary for good feeding. We can use thickened liquid so he doesn’t aspirate without worrying that he wont get enough hydration, and we will be able to give him medicine without anything having to go in his mouth.(Amy was especially relieved about this as she dreads the drama of giving him medicine). All of this will be awesome and will make life much more pleasant. He will also be able to continue to eat and drink normally as he chooses – we will just make up for what he didn’t eat and drink overnight. And he will be able to do pretty much everything any other kid can do including swimming, bathing, etc.
Obviously this is a surgery so it has risks, but it is a very common surgery done on very vulnerable people all the time. Gabriel has been under General Anesthesia before so that lessens our nerves somewhat. But your always nervous when anesthesia and surgery are involved. We meet with the surgical team soon to get details and schedule surgery.
Our plan is wait until school is out before having the surgery. This will allow us the flexibility to focus on Gabriel’s care and tweak new routine’s without outside scheduling conflicts. Our summer will be filled with doctors and therapy appointments. Thankfully Gabriel is a total trooper and even enjoys going to see doctor or “play” with Ms. Amy (PT), Ms. Shelly (OT) and Dr. Hilary (Behavioral Specialist)
The overall lesson here is, its good when a team of doctors listen and collaborate and plan together. We are continually thankful that we asked for the sleep study, all those months ago. This significant issues would not have come to light without that study. We hope this will be another milestone on Gabriel’s continued recovery from the Doose monster.
