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Tuesday, November 10, 2009

Weak little one

Regardless of my feverish attempts at keeping my kids sanitized and free from germs, I have failed. Sure, we went a few places here and there, but it was always in the stroller, not touching anything and using sanitizer. Besides the fact that with as many doctors appointments, therapies and tests/labs we go to on a weekly basis, I presume there is no way to fully avoid the dreaded cooties.

PJ came down with a head cold last Friday early morning. He started the barky drainage cough, and turned into a daylong fever the next day and was better by Sunday. By Sunday, Paul and Gabriella were both down with the crud. Gabriella was hit hard, spiking moderate fevers and looking frail and beat. Paul went to the Doctor Monday and was given antibiotics for a sinus infection. Gabriella, on the other hand, only got worse on Monday with an angry cough and consistent fevers. When the cough started to sound wet and rough Monday, my pediatricians FANTASTIC nurse made me an appointment to come in Tuesday morning. The lovely thing about our ped is that due to Gabriella's heart status, and our need to keep her as healthy as possible, they have us sign in and take us RIGHT back to the room to wait and has us leave out the back door. Anyways, he reviewed Gabriella and immediately said what I knew he was going to.... X-ray to check for pneumonia.

Wanna hear a funny story? We went the the imaging place and I signed in. I stood in the center of this uncomfortably small room, chairs filled with angry and unhealthy looking people, and held Gabriella so close to me I could feel her heart beating. I asked the receptionist how long of a wait it was, and she said over an hour. Panic mode set in. I asked if I could make an appointment or call ahead and she said they made NO exceptions, it was walk in only. I could almost SEE the germs floating in the air. All I could think of was that IF Gabriella did have pneumonia, I was exposing her severely susceptible body to more germs. I felt this insane feeling of anxiety and panic over me and scratched her name off and left. I told a friend, I felt like Bob Wiley on the movie 'What about Bob?'. My doctor's office called and got that 'no exceptions' thing taken care of. We went back a couple hours later, and waited in a back room for the X-ray. I felt much better about not having her wait in that area with all of those sick people, yet still had my sanitizer pump sticking out of my purse. Nothing says designer bag like a bottle of Walgreens foaming sanitizer!

Results came back tonight. Doc called to let me know she had the beginnings of pneumonia, and he wanted to start treating her right away. She is on a 10 day round of antibiotic, and we are putting her back on Singular since it seemed to work so well when they had her on it pre-stroke. We started the antibiotic tonight, and not an hour later she threw up anything in her tummy. Hoping we can get doses in tomorrow!!!!! I want nothing more than to kick this at home, and not end up back in the hospital!

This just goes to show how weak her immunity is already. A simple head cold so quickly took a turn on her and turned into pneumonia in no time. Her body just cannot muster up the energy to fight off illness like other kids. Aside from her heart failing, she is rapidly loosing weight, which makes her even weaker. I cannot get her to eat ANYthing of caloric value anymore, drink ANY nutritional drinks, nothing. People are mentioning it like her ECHO tech and therapists. We were a script away from a referral to a nutritionist last week from our Cardiologist, who would surely resort right to a NG tube on the first visit, but I was able to buy her another month of trying to gain some weight. She is petrified of getting another NG tube. We are going to be consulting with Loma Linda tomorrow on an appetite stimulant her pediatrician is recommending, and I PRAY it's safe for her and effective in getting her to eat something. We have until mid-December to fatten her up before we are sent to someone for it. Right now she is 45" tall and she is down to almost 36lbs- not anywhere close to being healthy enough for transplant or recovery and I know Loma Linda is going to have a fit when they see her in January if we can't get this improved. I offered being a donor for a fat transplant, but supposedly that isn't available yet.

P.S.- Oh yeah, I got the head cold, too. But Mom has no time allowance to be ill, so I was forced to suck it up. ;)


Comfypjs said...

Continually praying and asking for prayer at my church for your little princess! I pray that God hides her under his wing away from all the germs.

Emily said...

Prayers for her as always :( I wish I could have pneumonia for her :)

And I had to LOL at the fat donor comment!!!! Glad you are keeping your sense of humor during all of this Kristi :)

Tasha said...

Praying for a quick recovery for all! I hope she starts feeling up to munching on something soon for ya. It is nerve racking to see your child not willing to eat.

cici said...

SO sorry you have to deal with under the weather kids on top of everything.
Have you tried adding bananas and pediasure to ice cream milkshakes?
I know it's hard if she's not hungry, but sometimes good old fashioned apple pie ala mode and oatmeal cookies, rice pudding with raisins and whipped cream((think what grandma would serve ;)
Maybe it's just me that gains weight eating that!
You will all be in my prayers for a quick recovery and a cootie free winter!