All last week she had a big white spot on her nose. She gets zits so I thought it was probably that. Her nose was also red all over. But I thought that was probably from her mask (bi-pap) rubbing her wrong. But it just didn't seem to be getting better after a few days. In fact on Wed her nose looked swollen (the outside of her nose). I was debating taking her to the Dr. But I still thought it was probably a zit and her mask.
Thurs when she came home from summer school her respite worker came to get me because there was stuff draining out of her left ear and running down her neck. It was a clear to light yellow fluid. Her other recent ear problems have all been her right ear...this was her left ear.
The respite worker laid her down on the couch with that ear up and within an hour or so her outer ear was filled with fluid. We cleaned it out with a cotton ball and it kept filling up every hour or two.
I called ENT to see whether to take her to her pediatrician or what they wanted me to do and to make sure that her ENT was going to be coming in during her surgery next Wed. They said that I could either do the cipro ear drops or I could take her in to her pediatrician. I decided to take her in so that he could culture the drainage.
I made a Dr. appt for Fri morning.
At the pediatrician he cultured both the ear fluid and also got a little drop of blood from the nose sore to culture. The results should be in today (Sunday). He is going to be out of town until Jul 5. So he left instructions for his colleagues what to do depending on what the culture comes back. He wanted us to do the cipro ear drops in the left ear and bactroban on her nose sore and surrounding skin. He thought the spot on her nose looked more like a localized infection than a zit. He thought if they come back as staph or something bad...they might not want to do surgery this Wed. We'll have to see what the culture says and then talk to the Dr.'s down at Primary's.
The ear drop don't seem to be helping so far. The cottonball I put in her ear at night (after the ear drops) is completely soaking and yellow in the morning (she is still draining a ton of fluid). Last night her heartbeat was irregular and her heartrate was between 58-75 (low). Her apnea monitor was going off a tone last night...at first for low heartrate...then for apnea (not breathing for 20 seconds---even though she had her bi-pap mask on). I must have gotten up 20 times during the night. Finally I took the apnea belt off and put it back on and that seemed to help a bit. So maybe it was just getting a bad reading on the apnea. But her heartrate was low because I checked it with the apnea monitor and the pulse ox.
When she is sick her heartrate and body temp drop. So I know she is sick. Her temperature was OK though. 95.8 F (which is normal for her).
She seems to be a little more regulated today. Her heart is more regular.
I think she is also constipated which never helps...I think her seizures are worse when she is constipated and I have heard this from other special needs moms too. She bit her lower lip several times yesterday, which seems to be a type of seizure she sometimes has. So her lip was really fat and swollen yesterday.
So this morning I started a bowel cleanout on her. This is her new cleanout program prescribed by Dr. O'Gorman (Of course in this case I just have to change the days around a bit since I'm starting Sun morning). She normally gets 10mL of lactulose and a suppository every morning anyway (when not doing a cleanout).
Fri night
3 oz magnesium citrate
15 mL lactulose
Sat Morning
3 oz magnesium citrate
15 mL lactulose
If no stool then do a Suppository or if her normal schedule is a suppository on Sat morning then do one anyway.
Sat night
15 oz lactulose
Sun Morning
15 oz lactulose
Sun night
15 oz lactulose
I hate doing these cleanouts they are such a mess and really stinky. But she needs them. I think I'm going to start doing them once a month so maybe it won't get to the point where she is having seizures and what-not.
No comments:
Post a Comment