Monday, January 18, 2010

Friends,

Sorry it has been so long since our last posting! It has been just hectic here and I've only found time to update Face Book lately. I have definitely neglected my blog!

I can't believe it has only been a month. A lot has happened this month.

First, Jonah had another potential seizure episode about two weeks ago. It came on the heels of his being very sick (I am not sure yet but this may be a trigger for his episodes as the past two seem to happen right after an illness). This was an awful episode of tachycardia. We had a church ward friend that is a GP (general practitioner) check Jonah for symptoms of pneumonia or anything serious enough to warrant getting to an ER immediately. After checking him out and finding that his lungs were clear, ears fine and throat fine he told us to do what we were comfortable with but to get him to a hospital because of his high heart rate (thank goodness we have a pulsox in our home). So we took Jonah, with equipment, down as quickly as we could to the childrens hospital in Madera. His elevated heart rate lasted all in all for four hours. Yup, four hours ranging between 180-190. Finally, right upon our arrival, his heart rate lowered and he passed out from exhaustion. Shane used a simple, to the point analogy. Imagine running a marathon beyond your ability without stopping for four hours....that is pure exhaustion. Frustrating for us because we checked in to the ER with Jonah sleeping but stable. All they had was our description (once again) of the event. Jonah was in the ER back in November for a similar episode but by the time the ER doc saw him he was stable so the doctor said could be a seizure and sent us home to call his neurosurgeon. Same thing this time, although because of the length of time with the tachycardia I insisted that a cardiologist be contacted. At least we went home with a referral for a 30-day monitoring device and a referral to Neurology to get a work up on Jonah and discuss "other" testing for seizures. Both specialists that the ER doc spoke with agreed that all the symptoms together (rapid eye movement, claminess, tachycardia, jitteriness, in and out coherence of surroundings) pointed to a seizure. Great, tell me something I don't know! In the mean time they won't treat anything until they have something on paper (test result, etc.) showing Jonah really does suffer from seizures. So how long will it take before we are lucky enough to be testing Jonah and actually capture one of his unpredictable episodes?? My worry is that his little heart won't take several more of these tachycardias and I do not live in an area where there is competent pediatric care. Tough position to be in, living two hours away from the nearest children's facility that is capable of handling my child. *Sigh*

Tomorrow we meet with the neurologist for the first time. We will see what they recommend for testing. The ER doc did talk about repeating Jonah's EEG (which really I feel is not that helpful unless you happen to be in an episode or they are able to induce an episode during testing). I am hoping that tomorrow the neurologist will be more aggressive and perhaps order testing that extends beyond a couple of hours, maybe a 24 hour test or one that he can wear and it record information over a month or so (like the heart equipment he is receiving tomorrow). He picks up cardiology equipment after neurology. The test is referred to as the King of hearts Monitor. Jonah will wear it for 30 days and should he experience another tachycardia it will record everything for evaluation.

Needless to say, we have been somewhat preoccupied at this house! On top of this event, the boys were both sick as can be with bacterial infections and once again this past week they started to get sick again. Noah seems to be somewhat recovering but Jonah and I are very ill. We went to the pediatrician this morning and he did not want to give antibiotics yet but gave us lab slips should things not clear up in a day or two. I even had him look me over as my doctor was not in today. I am completely miserable, thank goodness Grandma and Grandpa Langston are here and have been helping with everything. I have been able to rest and hopefully in the next day or two I will feel better. I hope. I was actually hoping for some antibiotics today, I hate being miserable and it makes taking care of the boys so much more challenging.

Today the boys did not have school and I canceled therapy as they are ill and just need to be home recovering. The weather was just awful, awful. We woke up to an awful wind storm that bent and eventually broke our patio umbrella. Aargh! This is not very cheap to replace but I guess we have a few months until spring and it is just a "thing" and life will go on. Still, it made for a frustrating morning.

Grandma and Grandpa Langston return home Friday. We will miss them. They are such a huge help and thank goodness they were here during Jonah's last episode as we left Noah at home and Shane and I rushed Jonah to the ER. It would make life so much more simple having close family that we could count on but for now, God has other plans so we will be grateful instead for their frequent visits. Both sets of grandparents go above and beyond in their help.

I will update the post later and give information about Jonah's appointments tomorrow. Noah continues to do well. We actually got a bit of bad news last week. Blue Cross decided to change it's HMO plans and now charges a $20 co-pay for every therapy session whereas last year they did not charge any co-pay. That is a hefty bill to pay when you have 8 visits a week and definitely affects the budget. Eventually Medical will reimburse for Jonah (but that takes months), so because of all of this we dropped Noah's occupational therapy. He tested for his actual age with his last assessment (not even adjusted) so I did not feel as badly dropping the OT. He just goes for PT now, which puts us down to 7 visits instead of 8. Shane is due for a cost of living increase and is trying to negotiate the cost of the extra visits but his boss has been MIA about his Christmas bonus (although when he inquired he was told that he was to get a bonus but that his boss, after leaving for vacation, had remembered he'd forgotten to take care of the management bonuses.....we are yet to see the bonus). So we are frustrated to say the least. Pray that things will go through and that somehow we can make this new co-pay expense work out. It is tough not being able to work, especially in situations like this. I keep thinking how much easier it would be if I could work. I know it is not the right choice for us now but it is moments like this that really frustrate me.

Thanks everyone for your prayers and support. We love you all.

2 comments:

LISA said...

Missed ya yesterday! Sorry to hear you are under the weather! I know that extra expense thing can be so stressful.Last week our son Justin got in a car accident. He is fine but the car is history! Seems like is is always something don't you think! Know you guys are in our prayers. Just remember after the storm the sun comes out just like it did today. Praying for sunshine to come your way!

Renee said...

I just weep for your challenges Michelle. There are not easy to bear, but you do it. We all have our trials and we take what comes as it comes. But we know how discouragement can settle in quickly-- especially with this terrible weather. Blech!! Hang on-- (like you have a choice?) The Lord has plans and you are getting groomed for something amazing.. actually, I think you already have something amazing! Your boys are a treasure and we can only imagine what a blessing they are in your life. xox