Friday, April 24, 2009

Nathan Update

I realized that I haven't updated about results from Nathan's most recent testing.... it takes a while to get results back, and, things are never really as clear as you might want them to be.

So... what's the scoop on little Nathan?

Doctor's are still deliberating on what his diagnosis is... and are leaning toward epilepsy. I guess his EEG showed sharp wave activity in the occipital lobe and that, combined with description of what he does when he has one of his "attacks" lends itself to that diagnosis. The good news - that he could likely grow out of it in a few years... The decision left to be made - whether to medicate him. The not so great news - a handful of kids with this type of epilepsy can have cardiac/breathing issues... and Nathan has had episodes of stopping breathing.....

Nathan's seizures/attacks/whatever you want to call, happen so infrequently, and there are side effects to taking meds. What to do, what to do.... The doctors could go either way on the medication issue. We've been in a wait and see mode.

I don't know what is going on, but am glad that GOD KNOWS... though sometimes I sure wish he'd let me in on the information! I'm nosey like that... and want to be in control!

Nathan hadn't had any attacks in more than a month and we were leaning toward not medicating, but then Nathan had one in the car last Friday when I was taking the twins to school.... I looked in the rear view mirror and saw that his color was off... and he was staring into space. He became completely non-responsive and I wasn't sure that he was breathing... a scary few moments for sure.... he was out of it for a good half hour, but then seemed mostly back to normal.

Last Tuesday we had our full day of appointments at the CAD clinic at Children's. Silly me thought that we would be there for 2 or 3 hours and then be on the road.... HA.... We didn't get out of there until 3 PM! A LONG day for sure.

There were some neat things that happened though. Nathan's appointment was originally scheduled for two weeks ago..... When the office called to reschedule the appointment to the 21st I was so upset - the older kids were on Spring Break and it seemed like really bad timing.

HOWEVER.... God had something else in mind. I've shared about the little boy, Stellan, whose mother's blog I read (see button at the top of the page). He is hospitalized at Children's. Since Nathan's appointment had been rescheduled, I was at children's at the same time as Stellan and was able to deliver some goodies to MckMama's father to give to MckMama. It was great to meet him, to be able to serve someone, and also to walk the halls praying for Stellan at the same time that he was having heart surgery. God knew that the 21st was a perfect day for me to be at Children's with Nathan! Please continue to pray for Stellan. His ablation didn't eliminate is SVT and it looks like he may be in the hospital for a while.

Anyway... back to Nathan's appointments at Children's.

* They changed around all of Nathan's asthma meds given that he has been sick pretty much since early February.

* They were surprised at the amount of fluid STILL in Nathan's ears - and given his lack of speech, balance issues, and the fluid, they are going to put tubes in his ears in a few weeks.

* Since he will be in surgery to get the tubes, they are going to take the opportunity to do a bunch of tests that they have felt were a good idea, but that they didn't want to have to put him under for. So.. Nathan will have a scope procedure to look at his lungs, esophagus, stomach and intestines. They will take biopsies from each location. He will also get a tube place that will go up through his nose and down into his stomach to measure PH and determine where he stands with his reflux... that tube will remain placed for 24 to 48 hours, so we'll have to stay in the hospital for that time period.

* His last sleep study showed him to have low levels of oxygen while sleeping - they were wondering as to whether he needed to be back on oxygen at night again (please no!!!). So.. he'll have another sleep study next month.

THANK YOU for all your prayers for our little guy. All things considered he is doing really well.

I'm off to take him down to BayState for yet another procedure.... have to pick up his "sleep meds" at the pharmacy first as he needs to be sedated for the procedure! Please pray for us! :)

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