Blue

This morning about 7 AM she had a seizure and her sats (oxygen) dropped to 36 for about 3 minutes. She was blue and we were scrambling. We put her on 5 liters with an oxygen mask. Her sats didn't budge. Then near the end of the seizure they just popped up to 99%. It's like the air couldn't get through.

Afterwards she was completely wiped out. I kept her home from school today.

That was a good choice.

She had another seizure and dropped her sats to 75% and then another time while sleeping (no visible seizure) she dropped to 86 (before I popped the O2 on her).

Now she is awake and doing fine. But it was scary.

I called neurology, they are going to order an EEG. The Dr. knows of a company that will come do it at your house...isn't that awesome?

Half of last week and continuing on into this week she has been having a clear discharge in her diaper (I am assuming vaginal, but it is hard to tell---somewhere in the front region). Well this morning it was a ton of goo. Probably 3 T. It is clear with no odor. I'm assuming it's a yeast infection or UTI.

I made a Dr. appt for this afternoon. He thought if it was a UTI she would have fevers or vomiting. He thought because of the large quantity that it is a bacterial yeast infection, instead of viral yeast infection.

He wrote a prescription for a 5 day course of antibiotics. If it doesn't clear up, then just to call and he will call in a different prescription. He said it is really hard to culture them, because by the time the goo has been sitting in the diaper it is contaminated. So it is kind of trial and error, which medicine will help.

Last week she did wake up once or twice with a really high heartrate (115ish). I didn't take her temperature, I just figured I put too many blankets on her. But maybe they were fevers?!?!?! I should have at least taken her temperature. Although I can pretty much guarantee it was high.

The seizures are more than likely due to her being sick.

She hasn't had a single ear infection or sinus infection since getting the new butterfly tubes. She was getting them about every 6 weeks. It has now been a few months. AWESOME!

She has been having weird desaturations (low oxygen) during the night. She is dropping her O2 into the 70s and 80s even with bipap and oxygen on. That SHOULD NOT happen. It doesn't make sense. This happened last winter also. We tried switching out her bipap machine and apnea monitor, nothing. It kind of resolved itself...and now it's back. It is a pain.

I get up with her 1-5 times per night when her alarms go off. Half of the time I'm so sleepy that I can't think straight to fix the problem. Thankfully it usually fixes itself within a few minutes.

So far this winter I have talked to pulmonology/sleep Dr., neurology (thinking maybe it's a seizure), her pediatrician, and the rehab Dr.

Pulmonology had us do a sleep study. She had a perfect night with oxygen above 95% the entire night...of course.

Neurology said we could do an EEG overnight. But I thought...if you find it's a seizure am I willing to do anything about it (meds, diet, VNS, etc...)? Probably not for a few seizures a night. But then after the one this morning after talking to Jason we decided to go ahead with the EEG.

Her pediatrician thinks that it is a seizure paralyzing her diaphragm. This makes sense. If the diaphragm is paralyzed it can't move the air into and out of the lungs. So it doesn't matter how much oxygen you pump into her...it is not getting there.

Neurology had also said that the baclofen (medicine that is pumped into her spinal fluid to relax her muscles) could be pooling and depressing her ability to breathe. So when I went to Rehab last week I talked with them about this. They said, they didn't think that was the case, but wanted to lower her dose anyway.

That got me thinking...I know that sleepiness can be a side-effect of baclofen. But I am trying to remember back to before she got her baclofen pump. She got it in Mar of 2005. She was almost 3. So I am trying to remember back to when she was 1 and 2 years old... Did she have her "sleepy days" then? I cannot remember.

To explain her sleepy days...within the first 3-5 minutes of taking her mask off in the morning. I know whether it will be a sleepy or an awake day. SHe is either asleep for the majority of the day and she won't do anything. Or she is awake and doing great. Lately she has been having a lot of sleepy days. Now I'm thinking maybe these are baclofen related?!?!?!

The special care Dr. wrote a prescription for ritalin for her. You know the ADD medication? We haven't started it yet. But the plan is to give one or two doses to her on her sleepy days and it will wake her up. It is a controlled substance. It is an "upper". The bad parts about it are that the Dr. is not allowed to write any refills on it. Even the pharmacy can't call the Dr. for refills. And the medication cannot be called in to the pharmacy. You have to give them a paper prescription each month. Which means I will have to call the Dr. a few days before we need it, have them mail it to us, take it to the pharmacy, then return to pick it up. It better be worth it.

Another medication we have started recently is gentamicin. It is an IV antibiotic. We mix it with a few CC's of saline and she breathes it in through a nebulizer. This is to combat the pnemonia's that she has had previously. Both were pseudomonas which is really hard to get rid of. It is susceptible to gentamicin. We do these treatments twice a day for 2 weeks, then take 2 weeks off. It is really a pain. It takes 20 minutes for the actual treatment, let alone the set up and clean up time.

The rest of this blog entry is talking about "growing up"... just to warn you. It might get a little personal. So stop now if that is going to make you uncomfortable.

One last medication that we have recently started is estrogen. I have delayed posting about this on the blog, because I didn't want any negative feedback. So to be honest, if you have questions, that's fine, and if you say good idea that's fine, but if you disagree, I don't really want to hear it. About a year ago we met with a developmental pediatrician at the U, a pediatric OB at the U and an endocrinologist at Primary Children's to get all of the information about "stunting" Ellie's growth.

She is 9.5 years old now. She weighs 60 pounds. She is 4 feet tall. She is normal size for a 9 year old. She is not a frail little thing in a wheelchair (I wish!) She is heavy. Jason and I are only going to get older. She is only going to get heavier. The heavier and bigger she gets the less we want to move her into and out of her wheelchair and the more time she spends lying down on the couch. Jason and I both have back problems, mine often aggravated by transferring Ellie.

So Dr. Mary Murray (awesome by the way!) is our endocrinologist. She wrote the prescription for estrogen. It is a low dose birth control pill. This will send her body into puberty (breasts, periods, etc). When you go through puberty your growth plates fuse and you don't get any bigger. Before starting they did a "bone age" (just an x-ray) of her hand to see her growth plates, then they will know when they have fused.

This was not a snap decision, we thought for months about this. We feel that it best for all of us.

She has been on the estrogen for a few months now and she has gained 2.6 pounds (we were told she would go through a growth spurt). She is chubbier in her breast region. She already had pubic hair (since she was 4 or 5). The doctor said that periods usually start in "typical" girls 1 year after breast development.

This has not been done a great deal. It is done, but just not a lot. So it is slightly experimental. But it is a highly safe drug, just not used for this purpose and not usually in children so young. I hope that by us stepping forward and doing this, and now writing about it, that other special needs parents who either haven't thought of it, or are nervous will become more aware.

So far I haven't seen any adverse side effects (besides the growth spurt). I am just thrilled for her to stop growing. I want to be able to take care of her in our home. Not have to put her in a nursing home because I can't lift her anymore.

For anyone thinking about doing this, I would make an appoint with Mary Murray when your child is 4-6 and/or 35-40 pounds. I felt like 45-50 pounds is doable (liftable). Once you get past 45-50 pounds it is dramatically harder. You will have a harder time convincing the Dr. the younger your child is, but stick with it. Your child is not getting any lighter. (PS meeting with the developmental pediatrician and OB was not very helpful---maybe the OB---but even that---really not necessary).

I guess the reasons it's controversial is because it is a little strange to have a child with breasts and periods. It is also strange to have an adult the size of a child. Some people claim that you are taking away the child's rights to "grow up". But really, if these people took care of Ellie for 2 or 3 days, I am fairly certain they would side with us.

By the way, I don't know if there is something similar for boys?!?!?! I'm assuming there is?!?!?!? Progesterone??!?!?