Originally Posted on | October 22, 2008
We moved to Dell Children’s today. Well, I should say that Kelly helped John move today. I haven’t been there yet. But will be tomorrow. I am taking the morning shift while Kelly goes to the Ladies Bible Study at church. It has been a while since she has been able to go.
The transition went well. John had a good day, especially compared to yesterday. Tuesday he had a pretty severe seizure/desaturation episode and stopped breathing. Kelly was there. But they got him back up and going without much trouble.
Dr. Reardon, the neurologist, has prescribed some new drugs that we hope will help. And we are also trying to determine how much these seizures or seizure-related activity are being induced by stress associated with blockage of John’s airway—either because of eating, or reflux, etc.
Kelly was able to talk to Dr. Shaffer, who will be doing John’s heart procedure (balloon aortoplasty) next week. Actually, it will be on Wednesday. I had said Monday in the previous email. She said he did a great job explain things to her. So we are feeling as comfortable as we can I think going into this. I spoke with Dr. Nowlin, the otolaryngologists who has seen John. He was the one who diagnosed John’s laryngomalacia (no surprise—I misspelled it last time). He will be doing a scope of John’s throat at the same time as the heart procedure to make sure there are no other problems with John’s airway.
We have had so many nice and supportive conversations with the staff at Seton. Last night is was with Dr. Scharnberg. He was not one of John’s primary doctors, but is a neonatologist in the NICU, so we saw him quite a bit. He was always, as much of the other staff was, personally concerned and interested in John’s welfare—and the welfare of John’s parents. Turns out he had recently met a couple of couples that Kelly and I know out in Fredericksburg for the weekend.
A lot of people have asked about meals. There is a CareCalendar set up for anyone who might be interested. As I alluded to in a recent email, we certainly won’t go hungry during this time—thanks to everyone’s generosity. For all the details, you can go to http://www.CareCalendar.org and enter this information: Calendar ID: 7214, Security Code: 3228.
We have the last sentence of this passage on John’s bed: “Not that I am speaking of being in need, for I have learned in whatever situation I am to be content. I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. I can do all things through him who strengthens me.” – Philippians 4:11-13. Kelly was talking to a nurse about John a little while back, noting how tough a particular issue was for John at the time. The nurse pointed to the verse with a smile and quoted it.