Saturday, October 24, 2009

Test Results in But Still Not Feeling Well

Well, yesterday they confirmed that Mia did not have a shunt infection so we were off the her pediatrician's office this morning. She continues to have a low grade fever, which she has had since last Sunday. Today the doctor rechecked her ears and found the left ear to be slightly infected. Hopefully that explains the fever. We also tested her urine for a UTI. The rapid test came back with some bacteria but not enough to warrant a fever. They sent the sample off and we will get those results on Monday. In the meantime, she is taking an antibiotic that will hopefully take care of her ear and possible UTI. We really hope this resolves soon! She was up most of last night and is up again tonight. She is definitely not herself!!!!

Wednesday, October 21, 2009

First Tap

Yesterday we met with Mia's neurosurgeon. It was an extremely frustrating appointment. I really can't go into the details because I'm sure it would all sound like gibberish! Plus, I get way too fired up. I left wanting to scream and cry all at the same time. Anyway, she did have her first "tap". Basically, they tested the fluid inside the shunt to make sure her fever is not a result of a shunt infection. They placed a needle through her scalp and passed it into a reservoir in the shunt. It was not pleasant but it was done right in the office and was over fairly quickly. We will get the results back Friday. On a positive note, she did seem a little more like herself today. Her fever has gone down so hopefully this was all just a virus. I'll post when I get the results.

Monday, October 19, 2009

The Phone Call

Sorry it has been a while since my last post but you will understand after you read the drama! Yesterday, my two wonderful sister-in-laws and I headed out for a relaxing, girlie afternoon - Yeah!!!!- each of us leaving our husbands to tend to the children....even better:) We all took one car and headed to a fashion show to benefit Daystar, where Mia attends. It is the most wonderful place in the world but that is a whole other post! Anyway, the first part of the luncheon began with a silent auction. We bid on items and then went in for our lunch and fashion show. We made it through the salad and about 4 models. Then, I got "the phone call". Dave was hysterical. He told me Mia had been crying for two hours and then vomited (one of the major signs of shunt failure) and he was taking her to emergency so I should meet him there. Because we took one car, we all had to leave! I called him back and he said to hold off that she looked okay now. At that point we had already left and were on our way home. When we walked into the house, Mia was happy as a clam! Obviously I was relieved that she was okay but disappointed that our perfect and very rare afternoon was a bust. Since I needed a drink, my sister-in-laws and I went out to lunch (very close to home and with separate cars - I wasn't taking any chances) where I had a very tall glass of SamAdams! It's never too late to become an alcoholic is it?? Just kidding, relax mom!!!!

Now there was great reason for Dave to panic because this has been brewing all week. I have spent every night on the couch with Mia since last Monday. She didn't sleep much in the hospital so at first I thought maybe she was having a hard time getting back into the routine. Then, it continued and I thought maybe it was her extremely raw bottom (it was like a second degree burn that was bleeding). Maybe she had a little virus seen she seemed a little congested. Maybe it's her shunt. Maybe she is getting an infection (our biggest fear). Fortunately, her incision looks great so we ruled that one out. Needless to say, there are too many maybes and two very worried parents.

Last night she started with a fever and she continued to be out of sorts and uncomfortable. Today I was suppose to chaperon a field trip for Mia's brother but instead Dave and I spent the afternoon at the doctor's office with both babies. Gabriella has an ear infection and a sinus infection. As far as Mia goes, we still are not sure what is going on. There are still a lot of maybes. We have an appointment with her neurosurgeon tomorrow so hopefully we will have more answers. I will keep everyone posted.

Wednesday, October 7, 2009

Awestruck!

Mia came home a day earlier than expected!!! When I look back at this experience, I am completely awestruck. Mia's recovery has been unbelievably smooth and speedy. When you look at her, you would NEVER know she just had surgery. She is smiley, playful and just beautiful.

Upon returning home from Mia's fifth surgery, I couldn't help but think how far we have come in her ten short months. It truly is amazing!!!! Mia's outstanding pediatric surgeon has done all three of her colostomy surgeries. There are no words to express our gratitude. His advice and fortitude to move forward with her reconstruction has obviously changed all of our lives and clearly Mia's future. When Mia was three months old, without hesitation, he said, "We are going to have her poopin' out of her bottom by the time she is ten months!" At 10 months and 10 days, Mia was poopin' out of her new bottom. There are no words when someone transforms your child's future for the better and uses his/her God given talents to create what you never thought could be!

Monday, October 5, 2009

We've Got Poop!!!!!




Have you ever seen an angel poop? Well, at 9:10am this morning our angel pooped out of her new coolie!!! It is the most awesome feeling. I don't think I've ever screamed "poop" so loud. A little obsessed? Maybe. You would be too. Mia continues to just fight every step of the way. She is doing so well. We are finally able to feed her:) It is the first time she has eaten since Thursday morning!!!! We couldn't be happier. If all goes well, we should be home in a couple days. She looks great. She is smiling and almost back to herself. Thank you for all your comments and e-mails. I apologize for not responding but I have only been home twice to shower and update the blog. I have gotten all your good wishes and will try to respond to all of you when I get back home, but I cannot promise that either. Thank you again for all your prayers!

Friday, October 2, 2009

Surgery Went Well

As I said, we were admitted yesterday afternoon. Mia pretty much cried from the time they put a tube and IV in until they took her this morning for surgery. We were up ALL night. We just walked the floors of the hospital so the little boy next to us could sleep. I went in the operating room with her until they put her under. She was very upset but then fell peacefully asleep. The doctor said everything went well. I just left the hospital around 1:30 and she was still in and out of sleep and very uncomfortable. I am on the run to pick up the other kids and bring them up to see Mia. I just wanted to let everyone know that surgery went well. We will keep you posted. Thanks you for your thoughts and prayers.

God is funny!!!!

Well, let me tell you that yesterday did go off but not without a hitch!! Mia was admitted to Strong yesterday for her pre-op procedures. They gave me a window between 12-2, no later than 2, and they would call me with a specific time. As fate would have it, my son was up all night complaining his ear hurt. I sent him to school and told him to ask the nurse to look at it. If she felt I needed to bring him in, I would but if she didn't think it was infected I could use that time to get everything ready for the hospital and get everything else taken care of before I left. Of course, the nurse calls.....he has an ear infection. I call the doctor's office, the only time they can see him is 1:30!!!! Funny, right? So now I have to tell the hospital the situation and go there as soon as I am done with his appointment. So, I pack the car for the hospital, load the girls and go to pick up the older two from school. I take all four kids to the office with me. In the meantime, I have to rearrange all the sitting situations. I am frantically calling my husband, my mother, my in-laws, etc. My mother meets me in the parking lot and give her the older two. Then my father-in-law meets me in the parking lot to take the baby. Finally, I am off to meet Dave at the hospital! It really was chaotic and comical all at the same time!!!!