Saturday, December 31, 2011

More Surgery

We received the results of Abby's sleep study a few weeks ago. They showed that when she was capped, she had severe obstructive sleep apnea. She had more than 30 episodes an hour of apnea or hypopnea. Therefore, her bronchoscopy that was scheduled as a formality in getting her trach removed turned into trying to determine what the obstruction was. The bronchoscopy showed that the muscle flap has not atrophied like they expected and that it is blocking a large part of her airway near the larynx. She will need another surgery to go in and debulk the flap. Her ENT was hoping to get that done within the next month, but we don't have an date set yet. It will probably delay her chemo anywhere from two weeks to a month, depending on the timing. After she has had a few weeks to heal, they will repeat the sleep study and it should show that she no longer has the obstructive sleep apnea. At that point, we will be able to move forward with decannulation again. During the bronchoscopy, she also had a granuloma removed from her trach site, which should help a little bit with the irritation that she has felt. Her ENT is hopeful that this next surgery will fix a lot of her gagging and vomiting problems because he thinks the placement of the flap is triggering her gag reflex.

Abby has finished two days of her five day chemo. Although we are spending New Year's Eve in the hospital, we are very thankful that we were able to spend Christmas at home. Both the girls had a great Christmas and loved ripping into all the presents.

Tuesday, December 6, 2011

Clean Scans and More

Abby had her scans two weeks ago while we were in for her last chemo. They showed NED (No Evidence of Disease). This is what most people would call remission, but that is a leukemia term while NED is for solid tumors. This is great news because it means that Abby is cancer-free!

Because she was doing so well during her last chemo, Abby's oncologist gave us permission to go home for Thanksgiving. I'm not talking about back to our house, I'm talking about Kansas City. We were so excited! We had always been told that we couldn't leave the state while Abby was going through treatment. If Children's Mercy hadn't been in KC, then we still probably wouldn't have been allowed to go. We had a wonderful time and the girls both enjoyed playing with their cousins and aunts and uncles. I was so happy to see all my family again, especially my grandparents. It had been a year since we had been home, which is the longest stretch we've ever had.

While Abby was in for her last chemo, they also moved up her sleep study. Instead of happening the last week in December, it has now already happened. It is supposed to take two to four weeks to get the results and it has been two already. I'm not feeling very hopeful about the results because she did not sleep well at all. I don't think it was due to the capping because every time she woke up, she complained about the CO2 probes in her nose. I don't see how she slept at all with all the sensors glued to her head and on her chest, plus two straps around her chest. There were 20+ things attached to her body. Hopefully I'm surprised and the results turn out well and her bronchoscopy later this month goes well.