Emergency surgery....surgery #12

I will post a longer version of this when I can do this for my computer and not from my phone. But I wanted to post a quick update in Riley. We had to go in for emergency shunt revision surgery today. Riley is doing really well, but we will be in the hospital for at least the next day if not two days.

Thank you to everyone one who sent us their thoughts and prayers today.

Return of the apnea

I am been meaning to write this up for a while.

On 1/20/12 Riley went for another sleep study. And, the results came back saying that her obstructive apnea is back. Her overall episodes per hour were up from 5.7 hour (obstructive (ob) - .2hr, hypopnea (h) - 2.2hr, & Mixed apnea (MA)- .7hr) to 16.6hr (ob - 2.0hr, h - 10.3hr, MA - .8hr, & Central (C) - 3.5hr). This falls into the severe obstructive apnea category. When I first saw these numbers I was concerned that they had gone up but not overly so until I saw that they were high enough to fall into the serve range

Now you might say "If I saw that my child stopped breathing 16.6 times in an hour while sleeping I would be freaking out. Why aren't you?" And I was concerned but the fact that Riley is on oxygen at night which helps to keep her oxygen up even if she stops breathing for a few seconds helps to keep me from freaking out. Also 16.6 was nothing compared to 68.7 which was the number of episodes she was having in December 2009. Riley's first sleep study results showed she was having 68.7/hr. (ob - 38.6/hr, h - 15.6/hr, MA - 3.0/hr, & C - 8.4/hr). So when I saw a 16.6 I was disappointed that it was up and a little worried but though we would just increase her oxygen.

Well the doctors had other ideas; Her pulmonologist felt that the obstructive apnea was back for one of two reasons: (1) Riley's tonsils and adenoids were blocking her airways and if they were removed then the obstructive apnea would go away again or (2) her Arnold Chairi could have gotten worst, as your brain stem controls breathing. Riley's pulmonologist wanted us to go see her ENT before we got in touch with her neurosurgeon.

We went and saw the ENT and she thought based on the result so the sleep study that it was a good idea to go ahead and take out her tonsils and adenoids. On 3/16/12 we went in to have Riley's tonsils and adenoids out, we also were going to have her trach site and g-tube site completely closed. During the surgery her ENT decided that her tonsils were not very big and they didn't need to come out.  

On 7/2/12 Riley had a follow-up sleep study that came back it the result of 26.6/hr (ob-14.0/hr, h-10.0/hr, MA-1.6/hr, & C-1.0/hr).  So those results were not what we were looking for.  The  pulmonologist wants Riley to wear a CPAP. HAHAHAHA...is what I say to that.  We have had the machine for 6 weeks can still can't get her to wear it with it turned on.

We also went for two MRIs on 8/28/12.  One was a cine MRI, the hope of this one was to see exactly where she is obstructing.  We went on Friday to see the ENT and were disappointment that they were not able to get her to obstruct during the test.  So we got no answers.  The second was a regular brain MRI which showed slight changes in her brain.  Her neurosurgeon has scheduled us for a Shunt Patency test this coming Thursday.

A shunt patency test is used to evaluate the proper flow of cerebral spinal fluid through the shunt system and to make sure there are not any blockages. The scan involves the injection of a radioactive tracer into the shunt reservoir by the nuclear medicine doctor. Pictures will be taken to follow the path of the tracer through the shunt.

So we hope at after we meet with the neurosurgeon on 10/2/12 we might have so more answers.