Not that he's thrilled about his new Nose Accessory,
but we finally got him to wear it!
And I even got my sensory boy giggling lastnight.
(sorry for the awful quality, iPhone pics)
However, our first night didnt go so well!
Jack started off by complaining the cannula hurt his nose so he begun breathing thru his mouth instead. I even cut the little tips of the prongs but he still wasnt happy. Then the big scary blue machine concentrator was too loud so I rolled it into the bathroom with the cannula tubing extension. Then after threatening that I was going to tape it to his face, He cried "your the meanest mom in the world!" then he ended up in tears, saying he was sorry and asking why he wasnt born a normal boy...Then I cried, I guess so much has been going on with him lately that I just needed a good cry anyway. His sats were in the low 80's all night, I tried to sneak it on him but he got so combative in his sleep, by 6am I gave up.
But thats all in the past now!
It was comforting these last two nights to see him sitting well in the 90's, from 96-98 all night. He sleeps soundly and I havent heard any of the gasping he normally does while sleeping. He also wakes up feeling pretty good and no major sleep episodes either. So Im praying this means its working for him! But the next blood draw needs to reflect that too.
But so far, so good.
VEEG RESULTS...
After a month with NO word on our inpatient VEEG, I emailed Dr. S's nurse, Pam to let me know whats going on. She apologized, she thought Dr. S gave them to me and he thought she did!
Anyway, the results were very much the same as his quickie office EEG he had a few months ago. ABNORMAL with "background slowing" was mentioned again. They did capture 3 "stiffening events" overnight but none were epileptic in nature. So not sure what those are, nothing worrisome Im guessing. So I havent heard from Dr. S. yet on what he thinks. I guess nothing since there was no change from the other one. I imagine we'll just go over it when we see him in October for his usual 6-month follow-up. So thats that!
UROLOGY...
I talked to Jacks Urologist again this week, she called and told me she wanted to have the Urodynamics Study the next available, we have it set up for Sept. 13th. Im not looking forward to this one as its very uncomfortable to be put through. But we all agree we need to be sure we know if Jack is progressing in this area. We cant treat him without knowing whats going on. Ive put him back in pull-ups, as much as I didnt want to, I had to do it. We just couldnt handle the continual daily accidents. Jack hates wearing them (and I HATE buying them!) but I think he's actually relieved, at least his brothers wont be giving him such a bad time anymore. I feel for him though, poor kid. Lets face it, being in diapers at age 8 sucks.
GI...
Jacks continues with the stomach pain and the blood coming from his tube. Some days its more than others and it has tapered off some but its strange. Does this have to do with the stomach pain? Our GI's nurse seems to think its just some irritation, probably so. I havent been overly worried about it, its just not his norm.
I sometimes find blood in his tube like this
in the morning, after a full feed.
Some days if you open his gtube (sorry!), you can see blood on the inside but also leaking around his stoma. But he has NO granulation tissue growing and after you clean him up, his site looks great. its strange. But like everything GI related, these things are not easy to figure out, at least without a lot of testing anyway.
Liver Function...
Jack had another recent blood draw showing higher ALT (liver enzymes) what this means, I dont know. His GI thought it was due the the chemo drug he's been taking for a couple years now for his small bowel inflammation. So we cut the dosage down, but to our surprise, his ALT number actually went up after a month. I havent heard from the GI on what she wants to do about it. We're not sure if it has something to do with the drug or not now. The number isnt scary though so we have a lot of time to figure it out. Just hate to see anything odd going on here.
I think thats about it for now. We're off to visit my Mom for her Birthday tomorrow morning, so a great family day ahead! and a warm one, 83 in Seattle, say it isnt so! :)
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6 comments:
Hi Heidi,
Oh there is always so much to worry about with our little ones...
I am happy to hear that his sats have improved!!! Are you seeing any improvement in energy level or overall behavior?
Lucy's eeg was very abnormal in December with a lot of background slowing, even more than her previous four eeg's. We have chosen not to medicate her...yet, as the meds come with huge side effects that directly affect quality of life. The types of seizures we see in our girl are the absence kind; she just seems distant when these occur. I am choosing not to count the number of times we see these, as they are too numerous some days, and not very obvious on other days. I write all of this to tell you that it is frustrating knowing what to do with the information you receive from tests, there is no one answer.
As for GI bleeds, this was something we were seeing in Lucy too. I am going to assume that Jack deals with GERD. For Lucy adding Protonix twice daily, another reflux med, has helped to almost eliminate this issue from her g-tube drainage, we still see blood in her j-tube but that is something different.
Liver numbers are scary; Lucy's have gone from being slightly elevated as a baby, to being five to six times higher than the norm. We have been told that the liver is a big organ that can withstand a lot. That being said it is wise of you to investigate all of Jack's meds. We routinely do this with Lucy's med list, being careful to match any new symptoms to possible drug side effects.
Praying that Jack's lab work indicates that his body is tolerating the O2. Praying even more that he just plain feels better with it! Lucy tells me, "it just feel better mama!”
Sorry about the removed comment. It was just a misspelling - but a very noticeable one. I am glad you were able to get Jack to wear the canulla - and even got a smile out of him. That's great that his sats were up. I hope the blood draw shows improvement and that the o2 helps Jack in many ways. I also hope the doctors can come up with ways to help him with the other stuff that's going on. My thoughts and prayers continue to be with you all.
I haven't commented before but I have read your blog for quite some time now. Jack is such a sweet boy. I follow a few blogs that have kiddos with mito. I pray for Jack daily along with the other kids. Thank you for allowing me to read your blog.
Heidi.....answered prayer with the O2.... Hopefully the blood work will also reflect that!
For the most part sounds like he is doing o.k.?
Lots of info to swallow, huh?
Thank you for continuing to keep H in your prayers....you know where I'm at if you need me ;) wink!
Xoxo deb and Hudson
So glad the 02 seems to be helping! We'll be hoping the labs show the same thing! Can I ask how you guys ended up with a pulse ox at home? We just have the fingertip kind which isn't all that reliable and I'd like to get ahold of a tabletop oximeter for at least a short period of time to see what exactly is going on with K and her weird breathing.
One or two of K's EEGs showed diffuse slowing, but no actual seizure activity...she's had normal EEGs since, so maybe that will be the case for you guys. I hope so.
She has similarly elevated labs and nobody is concerned. Our GI doctor said that the next investigative step is a liver biopsy, but she doesn't think low elevations like this warrant such an invasive test and I'm inclined to agree. She said that the mito doc will probably be re-running that test anyway, so we'll see if it continues to go up and then decide what to do (if anything).
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