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!!!!