Yesterday was Nate's appointment with his cardiologist. We left home before 7am, so thankfully Nate slept the whole way in.....or so we thought that to be a good thing. Let me go on.
His PC wanted him to be sedated for this appointment so that they would be able to get very accurate diagnostics. The whole point of the appointment was to put together Nate's case, and then present it to Edmonton, to determine the course of treatment.
So at 9:10am, I gave Nate the medicine (chloral hydrate). Nate's nurse told us this was not a nice tasting medicine! Poor Nate, he had a tough time! He had a bit of a cough, too, so his gag reflex was a bit more sensitive.
Then came the hard part. Usually the medicine is effective in about a half hour, but our Nate, in his usual fashion, fought sleep every step of the way. It took over an hour of him being so upset and crying, then closing his eyes and giving in for about 30 seconds, and then getting all worked up again. Not a fun time. But finally he gave in and fell asleep. Note to self: maybe best to keep him awake on the drive in next time!
Our ultrasound tech was delighted with all the amazing pictures he could take! He just kept taking more and more, since getting shots of this quality would never have happened if he was awake. Even Dr. Soni (his PC) was able to do a thorough physical exam, checking his liver, etc. and was pleased that the liver was not enlarged. They also did and EKG and took his blood pressure.
After review the results, Dr. Soni came in and we talked about where we were headed.
- She feels his breathing issues are now heart related
- We will increase his meds in the interim
- She will present Nate's case to Edmonton on Tuesday, during which the panel will discuss and determine how best to treat Nate (there are 3 different surgery options)
- After the panel, Nate will be scheduled for surgery in Edmonton in the next 3-4 months
Interestingly, Dr. Soni told us she had just been in Edmonton at a conference that weekend. One day of the conference had been specifically geared to discussion of treatment of C-CTGA (or L-TGA). She said there are really very few cases that they have treated, and it seems there are differing opinions of treatment.
After Nate woke up, we had a quick consult with physiotherapy for some breathing therapy. We got out of the clinic just after 12.
So, those are the facts! Maybe another day I'll get into how I actually feel about all this!
And since what's a post without a picture....here are my two favorite boys!
1 comment:
Madelyn had many doses of chloral hydrate during her NICU stay. It works wonders for fussy babies with many tubes. Poor Nate, having to drink it. As for the feelings it's hard to put into words that you feel some relief about the fact that there is a team going to discuss your childs case; but yet again, you wish that there wasn't a case for them to discuss. Praying for you and Nate.
Karen
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