Aleshia had an Echo this morning. She was sedated for it and did not wake up well from the sedation. The doctor got a good piece of my mind and will again. We won't be going back to him either, because I think he gave her too much medication. She is spending a night in the PICU for observation, but is back awake after a very long 8 1/2 hours at least of sleeping. I was with her during the day and Brent is with her now, so that I could come home with the other kids.
She was doing much better when I left though. Praise God for this smile!
We all miss her terribly. Life just isn't the same without her here. Julianne was asleep when Aleshia left this morning for the Echo and is missing her worst of all I think.
I had to use the flash on the camera to get this picture of her. She went in, flipped out her light, and was sitting like this when I went in to check on here.
Yes, she was sitting and holding Aleshia's picture from Aleshia's old picture album. She got it out all on her own. This is so SWEET and so SAD too. Julianne has slept in her own bed every since Aleshia came home. They giggle and laugh after the lights are out and Julianne even turns them back on sometimes. (wink)
She misses her very much as do we. I bet I have a little girl back in my bed tonight. Praying Aleshia continues to do well and is back home tomorrow morning before Julianne even wakes up.
Aleshia has a family now and WE don't know what to do without her!
Precious! Precious! Precious! Oh my gosh...so touching! Praise God above that she has a family to miss her. I pray the time passes quickly until she can be back home again.
ReplyDeleteARGH! I'd like to give that doctor a piece of my mind, too! So sorry you're going through this. So sweet how much her sister misses her! I'm still praying that she recovers quickly from that drug and comes home soon!
ReplyDeleteI was not there so I can just speak in generalities based on my experiences with kids with Downs Syndrome and my medical knowledge. You may have other reasons not to like/trust this doctor but in terms of the sedation a few thoughts. One is that kids with neurological differences have a higher rate of unusual or paradoxical reactions to medications. Another possibilities is that people who are frightened can put out adrenaline and other stress hormones that can oppose sedation. As a result, they need to be given more. Once the adrenaline or fear wears off, then then have that extra medication on board and will be sedated longer. It can happen. Aleshia may just be someone who does less well with certain anesthetics. It might be worth finding out what she was given so if she needs sedation in future you can let the anesthetist know how she reacted to this drug. Was there an anesthetist there? Without knowing what they gave her, I would have thought there would be an anesthetist if they were sedating a child with unknown medical history and unknown cardiac issues. I do hope she is back to her smiley self this morning. Take care, Ellen
ReplyDeleteThere was A LOT he did that shouldn't have been done. He didn't even attempt doing it without sedation even though she was very sleepy bc it was way before she normally gets up. They were able to get an EKG and should have attempted the ECHO, especially since they knew they were using a medication that hasn't been used there long bc of the other medication no longer being made. Her pulse was only in the 50s, so you'd have thought they'd have taken that as something to be cautious about, since she had cardiac stuff done in Bulgaria and they didn't have good info which was why the ECHO was being done. They didn't use an anesthetist. He then gave her another dose of medication before even attempting the ECHO, bc she wasn't asleep yet. http://en.wikipedia.org/wiki/Pentobarbital is the medication she was given.
ReplyDeleteShe is back to her normal self and home doing well. He hasn't heard the last of me though, as I plan to make sure what he did is evaluated and make sure he is educated to take more caution with all his patients and especially those with Down Syndrome and little medical history because of adoption. We will be switching to a different cardiologist and that one knows exactly what I think of him! They will also not use that drug with any of my kids again and wouldn't have now if I'd realized they had switched what was being used and had a chance to research the medication.
Wow, that is certainly not at all what I would have expected. Phenobarbital? I have not heard of that being used for sedation since I cannot remember when. What drug is no longer being made?
DeleteI had read through quickly and you are right, really no need for sedation for an echo other than for really behaviourally challenged kids. Most can lie still enough for long enough. I am so glad she recovered. There are several choices for sedation that are very short acting and are more often used. Check out propafol and versed as starting points. They do require an anesthetist present but our children's hospital will do it.
You no doubt know this now but good questions include:
what is the drug/treatment/procedure suggested?
What are the risks? What are the common side effects and how are they managed and what are the rare, but serious side effects?
what are the alternatives?
what is the risk of not doing it/not using it?
why are you suggesting this one (CHOICE is yours, suggestion is doctors)
are there particular risks/side effects with kids with neurological differences?
I totally understand (well as much as anyone who has not just brought 5 new children into an already busy family can) why you are not blogging much but I do miss your updates. In the end, how did her tests check out? Is she okay?
Ellen