Friday, February 12, 2010

Back From the Hospital Again......

Yep!! Another hospital stay!! Just for a couple of days this time. Kaden went to the doctor on Monday and his blood pressure was 137/102. That was high enough to send us packing to our room which the doctors had ready for us at Hurley. I was kinda glad we were at Hurley instead of Detroit. I do like Detroit better than Hurley but man, it sooooo disrupts our life when we have to stay sooo far from home. Our doctors are kinda fifty-fifty. Half of them are Detroit doctors and half are Hurley doctors. We cant really help it. Hurley doesnt even have pediatric nephrologists or audiologists so we are kinda split between the two hospitals!
Our hospital stay was pretty quick. Kadens blood pressure meds were readjusted and he had a 24 hour EEG ( to check for seizures) and a upper endoscopy ( to check for ulcers, a side effect of the ACTH). The BAD news----- the seizures are back. I kid you not the very first day he was off of the ACTH we noticed some weird rolling of his eyes. By the second day I saw it happen many times. I knew in my heart they were back. I really didn't need a EEG to tell me that but I guess the doctors do. They aren't huge crazy seizures or nothing...... they just involve the eyes. Sometimes his eyes roll downward and kinda shake for a few seconds and sometimes they roll back into his head for a second and he may do this 3 or 4 times in a row. What can I say.................We tried. That medicine (ACTH) was pure torture for him and us!! And we knew it would come with a price...... but we had to try it. Other wise we would have always wondered if it would have worked. I am happy to say that with everyday he has not gotten a shot its like he has come back to life!!! We saw him smile for the first time in almost 2 months!!!! He is feeling so much better!!!! He has regressed in the last 2 months. He is very floppy. He has pretty much no head control, but hopefully we can gain some ground soon!! Nothing to do but to look ahead............... with that being said..........we are on to the last option for seizure control. The ketogenic diet. We will see the neurologist from Detroit on this soon. So until then I will take a deep breathe, and be thankfull..................thankful we are out of the hospital, thankful I am back home with my other kids, and thankful for a smile!!! And to all you wondeful people who have been cookin up a storm for my family- thank you so much! It really does help so much.

Tuesday, February 2, 2010

Just when I thought we were out of the woods.....

Well, we are back from a some what unexpected hospital stay. We are so close to being done with the ACTH and thought maybe we had avoided some of those potential nasty side effects. Kaden goes to the Doctor twice a week just for blood pressure checks. The ACTH can cause it to increase. I kinda thought we would never have a problem with this since Kaden was already on a few heart medications for his "SVT Past". The meds he was on already keep his blood pressure running low. But as the weeks have worn on the trend has definitely been going up. Finally a pressure of 145/95 sent him and us packing for Detroit. Cardiology said this was way to high for a 10 month old and said we needed to see a nephrologist to rule any other causes of the high bp out. All the testing showed its nothing more than a side effect of the ACTH. So the plan is to wean him much quicker off it. An echo (ultrasound) of his heart showed a moderate increase in the size of his heart since the last echo which was done in August. This leads them to believe that the blood pressures have been too high for too long. His hearts been working harder and enlarging because of it. His pressures were pretty bad the first day there. He had a few that were 160/106!! So we just had to find the right combination of meds to bring it down. Unfortunately even after the ACTH is weaned we are told the blood pressure issues will take possibly a few months to resolve themselves. So I now have to do manual blood pressures 3 times a day on Kaden. Man, it is soooo much harder to do one on a baby than an adult. Its sooo hard to hear it.
But we are so glad to be home! My furniture feels like heaven to sit on after sitting on a hard bench and chair for 5 days. Kaden was actually really good in the hospital and not to fussy so that made it easier on all of us. And thank goodness for the Ronald McDonald House! Its right next to the hospital and we can shower and have a comfy bed to sleep on. Brandon and I took turns sleeping. He would sleep till 2am then we would switch and he would stay next to Kaden and I would sleep. Its the best solution we could come up with!! Thanks for all your prayers. I hope we are not back there for a long time!!!!