Tuesday, June 30, 2015

End of June Updates

June ended up being a much busier month than originally anticipated!

All of the things in red are Abby appointments, whew.

We received the news from neurosurgery regarding Abby's CT scan and got her in for a sedated MRI to determine whether or not she would require a shunt to drain the fluid pooling in her brain ventricles. Thankfully, it was determined that a shunt was not going to be necessary! Yay!!!! Everything is flowing as it needs to, it's just not doing so in a symmetrical fashion. At this point, nothing needs to be done to remedy the ventriculomegaly. Great news. The craniofacial team will do another assessment of her skull in September before we move, but we are otherwise done with Neurosurg for the time being.

We headed back to orthotics to get Abby a different helmet (helmet #3 if you're keeping track). It doesn't have the big hole on the top like the other two did - this is to encourage her skull to round out more. So sweaty.

Luckily they put wiffleball holes in the top so her poor noggin can breathe a bit!

Ophthalmology changed up her patching routine to 2 hours a day, but only the left eye, as her right eye muscles need more work. I took this opportunity to get her some more stylish eye patches!

Abby also had her sleep study in the middle of this month. We just got the results yesterday, and unfortunately, they are not what we were hoping for. Abby's sleep apnea is worse. She is obstructing more frequently than she was at her initial sleep study in January, and her sats are dropping lower during those episodes. This is bad-news-bears for her heart. In adults, untreated obstructive apnea can cause the blood pressure to rise and the heart muscle to thicken. As Abby's heart muscle is already significantly thickened, it is necessary to start looking for other options to address the apnea, since the oxygen she is receiving overnight isn't doing what we need it to do.

The first step is to attempt a CPAP trial. I insisted this be done inpatient, considering the only time that we've attempted CPAP with Abby was when she coded after her heart surgery. There was no way I was going to try that at home. This means a couple days on the pulmonary floor at CCHMC (it will be so weird not to be with our cardiac people) sometime in July. If this goes well, then we'll start using the CPAP mask at home. If not, we have to start looking at surgical options. An X-Ray of Abby's tonsils and adenoids was taken today, as they are the frequent culprit in obstructive apnea and removing them is the least-complicated surgery, but from reading the report, it sounds like they're fine. We will be consulting with ENT and their surgeons to figure out what we look at next. 

Cardiology is encouraging us to get on top of this before we move, which I understand, but definitely makes things even more hectic than expected. 

So that was June. We did get to celebrate a lovely Father's Day and cheered as Abby mastered rolling belly-to-back, but yeesh, I hope July will hold fewer surprises on the medical front!