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??!?!?

Awake and going home

She woke up about 11:45. We started pedialyte through g-tube and increased it over the next hour. We were discharged about 12:45.

Then we went to radiology and got an x-ray of her hand (unrelated to surgeries) to get a baseline of her growth plates (bone age) for endocrinology.

Now she is being patient while I eat some lunch and get my tapioca fix.

We will be doing eardrops for 5 days and discontinuing the oral antibiotics.

She is doing well. SHe is still a little sleepy and her mouth has dried blood. But really doing well.

Yea for going home!!!!!!

Super Sleepy

She has opened her eyes just a bit a few times now...but mainly is just sleeping. The anesthesiologist wants to keep her for at least 4 hours. So the earliest we can leave is 12:45. She is really sleepy, we'll see if she wakes up by then.

She shouldn't have much pain. Her mouth is really bloody. Not actively bleeding, but dried blood everywhere. Maybe we'll ask for toothbrush in a bit.

The nurse said I could be in charge of restarting her feeds when and how I want to do it. We haven't done anything yet.

Dental done-all is well

Dental is done. They did x-rays. No cavities. Apparently when you are tube fed the calculus (spell check) that builds up on their teeth actually protects them from cavities. They cleaned the calculus off her teeth. And pulled two baby teeth. One was being pushed forward by the permanent tooth and one was a little wiggly.

Now I just wait for 20 or so min until she gets settled and waked up a bit. (It usually takes her a lot longer than 20 min before they call me back).

ENT done-went well

ENT is done. Everything went well. He put the longer Butterfly tubes in her ears. She hasn't had that kind before...so here's hoping. He said her right ear had a lot of fluid but didn't look infected (that is the tube that was already out). The left tube was partially plugged.

In the OR

She got taken back to the OR about 7:50 AM. ENT will go first and only take about 10 min (after getting her asleep and everything). THen dental will take 1 hr 15 min-1 hr 30 min.

Super smiley

For some reason she got super smiley while we were in the waiting room. Maybe she knows she is going to feel better.

On another note...her top tooth on the left (she lost the baby tooth last time she was intubated) is breaking through.

checking in

We are waiting to check in.  I have never seen so many people in the waiting room.  There are 8 kids waiting for surgery.  The most I have seen before is probably 4-5.  It is very crowded.  Some people brought 5 or 6 additional people with them.  I hope it doesn't bump Ellie's surgery later.

One interesting thing...yesterday while I was on hold waiting to talk to the surgery registration people...their recorded message said to bathe the patient the night before for infection control.  I have never been told that before, and they still never told me...I just happened to hear it.  I'm sure it probably won't kill you if you don't, but I guess it is a good idea.

Oh, another person just checked in.

News

I think she has had 2 more ear infections since last posting.  I have been too lazy to post, and really you probably don't care.  Anyway...tomorrow she is going in for surgery.  The ENT is going to put butterfly tubes in her ears.  They are longer and will hopefully cut down/cut out these ear infections.  I also arranged for them to do a dental cleaning while she is sedated.  I will keep you updated tomorrow.

Scare

Sat night Ellie was gagging and coughing during the night.

Sun morning it seemed like she had stuff draining down her throat which was making her cough/gag. So I went between conference sessions and got her some meds.

I love the pharmacists at Smiths on Country Hills and Harrison. One time she was really bloated and gas-x said not to use under age 12...I asked the pharmacist and he said it would be fine...just give her 3/4 of one.

Anyway...so this time I said I needed a liquid childrens nasal decongestant/dry out your sinus' kind of thing.

They got me Sudafed D (behind the counter). I asked if it dries out your sinus' or just makes them drain. He said that one makes them drain, but benadryl will dry them out. I didn't think I wanted them to just drain because she was already gagging and coughing and I didn't want it to lead to pnemonia. Without me asking he said..."you can give both at the same time". I said "then that's what I want to do."

I asked if you have to alternate them he said no you can give both at the same time.

It seemed to help for the rest of Sunday.

Monday morning she had a fever of 100.7 rectally. Her oxygen was hanging out at 88%. We cooled her down and put oxygen on her. I was really worried some of the drainage had gotten to her lungs and caused pnemonia. I took her to the Dr. a few hours later. He thought it was just a cold. BUt to keep a close eye on it because it could develop into something worse (like pnemonia).

Tues she did fantastic. She needed oxygen in the morning but went without out it for the rest of the day.

I kept her home from school today again because I didn't want her exposed to all of the germs at school.

I was really really worried a few days ago because I am going on a trip Thur-Sat and I didn't want to be gone if things went bad for Ellie.

She seems to have perked right up and is doing great. As long as she doesn't pick anything else up.

It was truly a blessing from the Lord.

We are trying to be super diligent about doing her vest treatment 3 times a day (normally it is only 2) sitting her up and doing regularly scheduled suctioning to cause coughing.

No crying

No crying today and she was awake and alert. So I hope the ear drops are now doing their trick

Another ear infection

I wish I was kidding...but I'm not.

Last Wed night (Sept 21) her right ear started bleeding.

On Thur I called the ENT (I skipped the pediatrician) and the nurse called in drops.

We have been doing the drops.  But I am still getting blood on the cotton ball every morning and night.  Yesterday (Wed Sept 28) she had an ENT appt (it had been scheduled for months as a follow up for her surgery she had on July 13 replacing one of her ear tubes).

We first went in to have her hearing checked.  The checked it in the fall of 2010 (I think???  I'd have to look it up) she failed.  She has always passed the pass/fail test until this one.  I was supposed to get it rechecked a month later...but...well...here we are (it never got done).  I wasn't worried about it.  I know she can hear.  And I know she has hearing loss.  So I wasn't worried about it.  Maybe I should have been...but it seemed like just one more Dr.'s appt.  Water under the bridge.

Anyway, back to the current story, we took her in (before the ENT appt) to get her hearing checked.  Because of her current ear infection and a lot of debris in her ears the audiologist couldn't do it.  She said go down to ENT and maybe after he cleans things out he will send you back up here.

So we went down to ENT.  He cleaned a bunch of stuff out.  They have these freaky attachments that they hook up to the suction machine and he sucked out a big blood clot.  He said that the tube was blocked so the drops we had been using for a week weren't really getting to where they needed to be.  He said to continue the drops for another week.  We have another appointment for a hearing test and ENT appt in 3 weeks.

If it comes back or doesn't get better...then he wants to culture it before we start more drops.  If the culture is resistant to antibiotics then we would have to treat with stronger drugs.

Dr. Gabrielson (her pediatrician) has done at least 2 ear cultures in the last 6 months.  They have shown infections but nothing that is resistant to antibiotics.

If she keeps having ear infections and it is not resistant then he wants to do a CT scan to see if there is some sort of abnormality growing there.  If there is then it would require surgery (about on the level of tonsils and adenoids---which was a really rough one).

I asked if her earwax (she always has a ton) could be blocking the tubes thereby causing infections.  So do we need to use drops or other methods to clean her earwax out regularly.  He said no.  It is unknown if it is safe to use the earwax drops when you have tubes in.  He said it was not an earwax problem.  It was an infection.

This morning her cotton ball was soaked through with drainage...which is good...we hadn't been seeing that for the previous week.

She was also crying this morning and she has slept all day.  I don't think she is feeling good.

The other appointment we had yesterday was Dr. Nancy Murphy's Special Care Clinic.  It was our first time at this clinic.  I had heard good things about a year earlier from Chris R.  (another special needs Mom).  But it just seemed like another appointment to fit into a busy schedule.

During her most recent hospitalizations Dr.'s and nurses and social workers and chaplains etc, etc...kept bringing it up.  And saying we should try it out.  So we agreed.

It was a great appointment with a great Dr.

The purpose of the Special Care clinic is to help families with complicated medical needs and make their life easier.  It is kind of like the concept of a "medical home"  if you are familiar with that.

A Medical Home is where the family and all Dr.'s communicate and are on the same page.  So for example if Ellie is sleeping more than usual all of her Dr.'s work together to figure it out.  Neurology says maybe it's seizures.  Rehab says maybe it's pain.  Pulmonology says maybe it's lack of sleep.  Etc...Then they work together to form a plan of attack.  It is a great theory.  But I don't see how it could possibly work.  The Dr.'s are overly busy.  So I have never put much thought or effort into the concept of a Medical Home because I don't think it is an attainable reality.  So the responsibility falls on me to coordinate all of her medical needs and concerns, get her into the appropriate Dr.'s and sort out what I think is the best plan of attack.

For the first appointment in the Special Care clinic they schedule an hour (we took 2).  Dr. Murphy was so patient and kind.  I was very open and honest with her such as...I told her that she has night arm splints but we haven't been using them because they are a pain to adjust correctly.  Etc...  She never acted like "You're such a bad Mom, I can't believe you aren't doing everything possible to help your child".  She was more like "It's fine, you're busy, Ellie is happy and healthy and you are doing such a great job taking care of her."

I cried several times during the appointment because it is hard to rake through so many hard issues in such a short amount of time.

We discussed her diarrhea/constipation issues.  We give Ellie lactulose morning and night and a suppository every morning.  It takes all day for the suppository to work.  If we put it in at 7:30 in the morning, she won't have a bowel movement until 4-6 PM.  She said that is way too long.  Maybe we need to try something else.  First she thought we should try giving the suppository at dinner time to hopefully work before bed.  I don't know...I still like giving it in the morning.  I don't want her to go during the night and be sitting in it all night. It's a complicated thing that we're still thing to sort out.  She gave us a few things to try.

We talked about her spine and surgery which will be sometime in the future.

We talked about Ellie growing bigger.

We talked about her contractures and muscle tone.

We talked about "growing up".

A few of the Dr.'s that we follow up with she said...I don't think you need to go to them...I can write your prescription refills and save you a trip.  Wow!  Yea!  Like she said Gastroenterology (Dysphasia) meets on the same day as me (Dr. Murphy) I can just talk to Molly (Gastro) and have her pop in rather than having a whole appointment with her.  These steps are fantastic.  Ellie has 15-20 specialists that all want to see her (mostly every six months) (a few are every year) it is a lot.

She is going to call one of her Dr.'s (endocrinology) and see if we can start a plan of action right away rather than wait until our next appointment with endocrine in Dec.  I know that was vague...but I'll talk about it another time.  The point is...she is doing some of my leg work for me.

Another HUGE help that her clinic is offering is to try and schedule appointments back to back on the same day.  This is difficult to do.  But she thinks she can work it out and pull some strings.  Woo Hoo. We love those kinds of strings.

They also try and help you acquire any equipment you need though applying and appealing insurance.  Or other funding sources.

They let you know about resources that might help or be of interest to you.

She said we can call or email her with any questions or problems or anything.  I am so excited.  It was great.  She is truly trying to help and I believe she will succeed.

Have any special needs parents seen an immunologist at PCMC?  Who? and would you recommend them?  We see one in Layton, but he is not a pediatric one and is not used to dealing with complicated medical issues so I need to get a second opinion.

Ear infection

Ellie has another ear infection in her left ear (starting yesterday).  I think it's been coming on for a while now.  While she was inpatient I had them check her left ear because it had massive amounts of ear wax.  They said it looked fine.  Then on the Sunday I took her in for gas/bloating she was grinding her teeth that day too.  But they also didn't see anything.

Yesterday it started draining so I called ENT to see if he wanted me to take her to the peditrician or if he wanted to see her (since that ear tube was just placed on July 13).  He just called in ear drops for us.  Which was good...it saved us a trip to the Dr.