Sorry for the gap in posts – the past few weeks have been a little hectic!! First off, HAPPY BIRTHDAY to our Princess ISLA!! She turned four last week : ) (the poor thing was sick almost the whole week of her bday though… high fever but never did find out what it was…maybe coxsackie virus?)
On June 2nd, Siena saw Dr. Gottlieb. She had lost a little weight since her previous weigh-in… she was 14.54 oz. We are thinking this is because she is no longer on Pediasure and is much more active these days. Hopefully she will gain in back quickly.
We discussed with Dr. Gottlieb the recent Sleep Study and explained that we were holding off on the CPAP until after surgery. We will revisit it if we need to at that point. Also talked about Carnitine and he asked to be emailed the info Dr. Miller had sent us. He is not opposed but would like to learn more information. (MORE on this later)
We will keep her dosage of the seizure medication the same for now. After surgery we will see is the seizures decrease, try to start Carnitine supplement and if these do not help then he suggest the 24 hour ambulatory EEG.
He gave clearance for surgery and would like to know how she is doing next week.
From Gottlieb’s we went to duPont for Siena’s Pre-Surgical Appointment. They evaluated Siena and drew blood for anesthesia. They will keep Siena overnight after surgery on Monday – this is usually outpatient but because of her low muscle tone and PWS they will keep her for evaluation. One person may stay in the room with her overnight. I have put a request to stay at the Ronald McDonald House Sunday and Monday nights – we won’t know until tomorrow night if there is room. We must be there by 6:45am Monday – surgery will be around 8am.
So for the L-Carnitine blood tests – we took Siena to have blood drawn at Hershey last Tuesday…. with Isla in tow, we drug the whole family to the lab….they said the test would “only” require a foot prick, and they sent us on our way – saying results would be sent to pediatrician’s office. We finally heard from the office on Wednesday – the lab did the WRONG test. Instead of testing for L-Carnitine, they tested for Creatinine… said Carnitine is not a foot prick and we had to come back in to give more blood!!!! Excuse: Carnitine isn’t a “normal” test and they probably couldn’t tell because of doctor’s writing. RIGHT. Poor Siena has had to give blood three times since last Tuesday – we were not happy. But we took her back in and of course, they couldn’t get a vein yesterday. They suggested having them draw the blood during surgery on Monday when they give her IV. I have checked with duPont and they said to bring the work order and they will get it done. Let’s hope so!!!!! Why is it so hard to understand that this Carnitine could tremendously help Siena and quite possibly enable her to be off of seizure meds!!!!!! The thing is – even if her Carnitine levels are normal it could still help her… as it has been shown to do with other PWS patients. Frustration is starting to be a common thread these days.
We see the Endocrinologist from duPont on Thursday next week and I am hoping and praying she is on board with Growth Hormone. If not, a trip to Dr. Miller will be our next step.
Will keep you posted on surgery. Keep Siena in your thoughts and prayers on Monday. xo