Thursday, December 31, 2009
Posted by LJR at 4:14 PM
Sunday, December 27, 2009
We had a great Christmas. The kids got lots of gifts. Derek's favorite is his guitar and skateboard. Ella likes her easy bake oven and Emma loves her new mp3 player and sound machine.
On Christmas Eve we got about a foot of snow, a rare amount for us. We built snowmen today. Here are the pics, and I will update more in a bit its dinner time but Grandpa and Grandma really wanted me to get the pictures up. Pics are from the snowstorm, the snowmen, the kids kissing their snowmen which was Derek's silly idea, Christmas random shots and one big bubble pic of Emma, she sure had a lot of bubbles in her mouth! Love to you all.
Posted by LJR at 5:29 PM
Tuesday, December 22, 2009
Home at last! I am so happy we finally have Emma home. We got home around 5 last night. Emma slept very well in her very own bed last night and loved the fact that no nurses can in the room every 2 hours!!!
The problem was that she had 5 ulcers in her stomach that bled. We had no idea until she started passing blood in her diaper that she had ulcers. Her electrolites and hemoglobin were way out of whack when she got there and they dropped a few times during the trip too. She had 3 blood transfusions , lots of thanks to the 2 A positive and one A neg. donors that saved my baby's life!
She had 2 failed attempts at starting a picc line for the many blood draws she needed on a daily basis, apparently she has flat veins that round caths don't like to go in! So she had a central line put in.
She had 2 endoscopies and a colonoscopy. They took some cells during the tests and think she has a problem with her milk she got in her feeding tube, she apparently has a allergy to the type of protein in it and that is what caused the ulcers. Her seizure medicine she spent years on also causes ulcers so we are off that now, and on no seizure meds as of yet, they want to see if she she managable off medicine. So far so good.
She is on a new formula and 2 medicines and will be pretty much forever I guess. Prevacid for acid control and Carafate to coat her stomach.
We did a lot of praying that we would be home for Christmas and I am beyond excited to have her well and home now. This was the sickest she has ever been in her life. They said we can pretty close to losing her those first few days, due to her hemoglobin dropping so low. But the little miracle she is, with all the courage and strength she carries around, she showed those doctors a thing or two and has more or less made a full recovery!
Thanks for all the prayers you have sent, and to our family who helped us during our stay. Thanks goes out to those from church her brought food, and visited and prayed for us. That love really helped keep our spirits up. There isn't a thank you card big enough for all that was done, and we are so very grateful and humbled by the outpouring of compassion. THANK YOU!!!!
Posted by LJR at 8:39 AM
Sunday, December 13, 2009
Sorry I didnt update as I said I would,yesterday and the day before were kind of busy and I didn't make it down to use the computer. Today Dad is here and I have the netbook here for a while.
Still bleeding, and still no new answers. They discountined her seizure medicine because it can cause ulcers, maybe that is our answer but they don't think so for whatever reason.
Friday we got an ultrasound of the kidneys done. They look fine, as do the spleen and liver, which they had tested earlier in the week.
Her heartrate was high again yesterday, but labs all look good. They wondered if she was in pain, but she seemed very content so I don't think she was. So today we are doing a CT of tummy and intestines (I think both spots), we are just waiting for them to take her down and to give her some barium
Tomorrow they will be doing a RBC nuclear scan or Red blood cell scan. If her bleed is big enough it will show us where its at, but both the doctor and the radiologist think her bleed is small, so doubt it will show much. The next step will be to scope her again down the mouth and check to see if the ulcers they found her tummy or bleeding, if not they will go into the intestine to look, which is a surgical thing. We have wanted this done all week and frustrations are high because every day she has bloody diapers and everyday we get told to wait and see if the medicine they have coating her stomach works.
Please pray we will get answers soon so we can go home.
Posted by LJR at 11:48 AM
Thursday, December 10, 2009
Emma is at Children's hospital in Oklahoma City. We have been here since Saturday. She has been admitted with a GI bleed, which is something very new for us. A lot to update on what has happened the last few days, will have to try to be as simple as possible.
We were admitted following a bloody diaper at home, she has had several since then. Over the last few days she has had 2 blood transfusions, an endoscopy and a colonoscopy, which are fancy names to say she has been looked at down her mouth and up her bottom. They found 5 ulcers in her stomach, which were not actively bleeding. They have medicated her to see if that helps, but today and yesterday she had bloody diapers again, so there is a chance some of the ulcers are in her intestines and they will have to go in and operate. As of now its all "wait and see if she has bloody stools some more" which is really frustrating to say the least. They did biopsies during the scopes but the results are not back yet, they don't expect them to show anything but they are done as a precaution
She had a central line placed yesterday because they are taking blood ever 6-8 hours and need to have good access. They tried to start a PICC line two times and could not. You can google those terms, if I just completely lost you. I am sorry I am just in hospital mode language right now.
We just want our girl well, if she could be home in time for Christmas that would also be great. No children under 12 can enter the hospital due to Swine Flu fears, so Ella and Derek have not seen their sis all week and I hate to think of them not being with her on Christmas, let alone how I will split my time between here and home.
I just found a wonderful room called the "Ronald McDonald Family room" here in the hospital where I have access to a computer so I will try to update as much as possible. I plan on daily updates, more if possible.
Our Church family has been great, with visits to see her the last 3 days and a group of ladies that will be bringing meals by to Daddy and the other 2 kiddos. Its nice to have them there for support, along with our family.
Immediate pray needs are 1. Make the bleeding stop 2. Let us get home for Christmas and 3. That her blood work and electrolites stay where they need to be so we can avoid more transfusions.
Will update as soon as we have some more answers.
Posted by LJR at 2:30 PM