Wednesday, February 4, 2009

Update on Life- SERIOUS

Okay, so, I have no idea where to even start...
On Thursday, January 25th, I took E to her pediatrician because she was just not getting over a really nasty sinus infection. When I got there, I told her that I had an appointment scheduled for E at Loma Linda for her GI specialist the next morning. She told me that were it not for that appointment, she would personally hospitalize E, but she wanted her to go to that appointment and would call the doctor herself. Due to her feelings about hospitalizing E and the fact that she would be contacting the specialist, I took D's advice and packed a hospital bag for two of us just in case they admitted her up there at the children's hospital. Well, lucky I did because as soon as we sat down with the specialist, she asked me how far along I was and if there was enough help at home for my older children and I told her we had taken care of it all. She admitted E that evening to Loma Linda Children's Hospital and they started i.v. treatments of antibiotics and started watching her eating and weight and dirty diapers like a hawk. They also started running tons of tests to try to start honing in on what has been creating her eating, weight gaining, and development problems. After a week and a half, they decided to put in a G tube to start doing feedings through the night while she is asleep as a supplementation to her normal eating during the day. That went in today. They also got test results back on her chromosomes and found that she has an abnormal "fish" or chromosome 22 and it means that she has a very mild form of DiGeorge syndrome. I haven't been brave enough to research this disorder yet, but I do know that the doctors already checked to make sure that it hasn't caused heart damage, immune system damage, or calcium deficit and she was in great health on in the heart and calcium areas. They did a swallowing study to make sure she is swallowing well and were able to see why her food has always leaked out of her nose when she eats. There will be more clear information on that in a few weeks when we go back with her as an out-patient to the ENT's (Ear, Nose, and Throat specialists) to run their own tests and get a look. They will be doing a scope to see what is going on in her sinuses and get a better look in her ears. We will also follow up closely with her GI specialist and will be seeing her geneticist. All that and I am having my c-section on THIS Friday. In fact, the only reason I am home now and D is with E is because I had to book it to my OB to get the blood work and pre-admission paperwork done this afternoon. I couldn't put it off any longer and had to take care of this part of things. I will have one full day home before I am in the hospital to have my baby and I am crossing my fingers that D and E will be home by tomorrow night so that D can be there when the baby is born. Otherwise, my mother-in-law will be in the room and D will still be at Loma Linda tending to E. It is a crazy mess, but I am feeling so hopeful now that someone has found a significant key to what has done this to E. Please send TONS of prayers our way as we are all in desperate need of them. They have held us together thus far and I couldn't be more thankful to God than I am right now. God bless.

4 comments:

Brittanie said...

Oh honey, I'll be praying for you and your sweet Elizabeth! Here's hoping that this is what she needed to start getting better! And best of luck with your delivery tomorrow. I hope everything goes smoothly so you have the least amount of stress possible on that front! (hugs)

Bri said...

I hope all goes well. I'm so glad to hear that your mother-in-law will be her to help out. We will pray for all of you.
Lots of love,
Bri

Kari said...

Holy Moley! What a whirlwind! Good luck with everything; we'll be praying!

Amouwful said...

I hope all is well now :) she is a great little girl...and i hope to see pics of ur new little boy soon!! good luck