No apnea!

We got some good news this afternoon! Lila does NOT have apnea like the doctors believed. We have had problems with her holding her breath until she about passes out. She turns blue and this always happens when she gets extremely angry. At first I though these were seizures, so we had an EEG and she actually did one of these "episodes" during it. But it didn't show up on the EEG as a seizure. We did a sleep study and that came back fine, showing that she had normal breathing patterns during sleep.It turns out that her chiari malformation is to blame for this. Apparently in kids with chiari they sometimes don't have the sensation that they need to take a breath when they hold their breath. This makes them experts at holding their breath but can scare the pants off their parents! Which is exactly what is happening to us! The pulmonary doctor said that Lila should be fine and that it doesn't look like we need to do the decompression surgery anytime soon because her breathing appears to be normal. He explained that in kids and adults without chiari, when we hold our breath CO2 builds up and causes us to have an urge to take a breath. In kids with chiari they sometimes don't get that sensation. Anyway I thought this was interesting and wanted to share our good news! The neurosurgeon agrees that we don't need to have the decompression surgery yet.We are still in the hospital and they are stilling trying to figure out her eating problem but it looks like we might be going home soon with a NG tube. Thanks for your prayers and please keep em' coming!

EEG and Sleep Study Pictures

Sleep Study

Wired.
Gettin' the wires on for the EEG.
This is during our 24 hour EEG.

Back to the Hospital

Dear Friends,

We find ourselves in the hospital again. A few weeks ago we noticed that Lila stopped eating as much and just didn't seem hungry. As the days went on she took less and less and fought every time we tried to feed her. So we made an appointment with our regular doctor. He added up how much Lila was taking and determined that it wasn't enough. That appointment was on Wednesday July 21st. On Thursday we got a call from the doctors office. The doctor had decided that we needed to go to Cardinal Glennon for some observation. We packed up, took off work, and headed to the hospital on Friday. When we got there they took blood, got a urine sample, got an IV in (it took 6 tries and finally had to put it in her scalp, but is significantly better than the 14 tries it took in Fairfield) and got a CT scan and x ray of her shunt. Her shunt seems to be in working order, which is a prayer answered. Blood tests came back good as did the urine sample. On Saturday we had a 24 hour EEG to determine if she was having an seizure (we are still waiting for the full results of that test). On Sunday we had a kidney ultrasound to make sure that her kidney's were working and healing from her last surgery ( she had surgery 6/30/10 to remove an obstruction). On Monday night we had a sleep study. The results from that won't be back for a few days. And this morning we had a MRI. To say the least our stress rate has been through the roof! LOL. Daniel went back home last night so that he could be to work today. So Lila and I are up here alone. We try to sleep whenever we can but it's hard with all the doctors and nurses coming in all the time. So far the doctors are stumped as to why she won't eat. She acts normal until you try to feed her. When you try to put the bottle in her mouth she pulls it away and shakes her head and fusses. It's very confusing. I hope that we can find some answers soon. The doctors are trying all the can and we are trying not to get a feeding tube but it looks like we are headed that way. Please keep us in your prayers. I will post some pictures that I have and update again later.
Love,
Alyssa, Daniel, and Lila