Wednesday, January 23, 2008

I had tried to put a new post on yesterday and lost it before I could get it published. I didn't have enough energy to redo it. We had a pretty good day on Monday. He slept a little better Sunday night and woke up a bit happier. They decided to do a CT scan on Monday to look at his renal arteries for any narrowing or hardening. In order to do the CT scan he had to lay very still for about 10 minutes. They decided to sedate him in order to accomplish this. Since we haven't had a lot of luck with any of the sedation medication in the past, they tried something else. It was our magic drug. He was back to normal for a couple of hours. He was happy and just a little bit goofy. It was awesome!! It was short lived, but worth it even for just a couple of hours. The only bummer with this is that they had to start an IV because they had to use contrast for the test and couldn't use his port for that. Of course this was traumatic and as soon as we got into the "treatment room" he knew he was going to get an ouchy. The CT scan showed normal renal arteries, which is great!! They put a pulse-ox sensor on his finger to watch his sats while he was on the medication and he called it his shark and the cord to the machine was a snake. So the shark was pulling the snake. It was hilarious. When we got back to our room, they were going to take it off and he wanted to leave it on, so they let him keep it for awhile. They also did an echo cardiogram on his heart to see if there was anything abnormal that would be contributing to his high blood pressure. His left atrium is slightly enlarged, but since he has had pretty consistent high blood pressure for the last few weeks his heart is working harder and therefore is slightly enlarged. They are thinking that his high blood pressure must be from the steroids. This is a side effect from prednisone, but it is usually easy to control it and that's not the case for Elijah. His last day for the steroids at the high dose he is on now is Friday, so they are hoping it will get better after that. I will have to check his blood pressure at home daily for awhile and follow-up in the office with these doctors, but they said they would try and coordinate with our other appointments. He ended up getting a fever Monday night late and that was the start to our miserable Tuesday. He had a fever of about 103.0 all night Monday and so therefore didn't sleep well. On Tuesday morning it had gone down a bit but not for long. It spiked again to almost 104.0. He felt horrible. It was a longgggggg day!!!!!! Otherwise, not much to report for Tuesday other than his ANC went up from 90 on Monday to 518!! This is great news. This is the number they wanted to see at 500 before we could go home, so we're there! Now the only problem is that he needs to stop having fevers. He spiked again about 0300 this morning to 102.0, but by this morning at 0800 he was back to normal. So now we're praying for no fevers so that going home on Friday is still our goal. They stopped some of the antibiotics since nothing has grown on the cultures and his counts are up. Apparently there are some antibiotics that have a side effect of causing fevers. I had never heard this before, but they use these all the time and I trust that they know far more than I do on this matter. He slept quite a bit better last night, still not great but even a bit better at this point counts for a lot. Elijah's new favorite thing to do is ride around in the wagon. This is great except now he thinks that he "can't want to walk". We might have to hide the wagon for the next few days. He is getting tired of this room and bed so yesterday I probably walked a few miles around the halls. I would start walking and he would fall asleep in the wagon. I really wanted him to get some sleep so I kept walking, I just wanted to crawl in with him and sleep too. I hope that today is better and we can all catch up on some sleep. I will put some new pictures on. Love you all!!


bonniejean22 said...

I'm glad to her hes doing a little bit better. Hopefuly he will stop having fevers so you can all go home. When Uchenna was at Blanks we walked the halls for hours with the wangon:) He loved it.
Hope all goes well for you guys

Anonymous said...

Hi, guys! Great pictures! You all look amazing for what you've been going through! So glad the trip home may be coming soon and that you've been able to get out of the hospital a little, that has to feel wonderful. Best wishes for a smooth week so you can head home! Take care!
We love you and are thinking about you constantly, Rick. Shani, Isaac and Emma

Courtney said...

It's nice to hear that things are going better, and I hope his fevers go away so you can get home. Good Luck! Our prayers are with you.

Doug and Courtney Giles

Dan and Amanda Arrhenius said...

I just found your blog and have been doing some catch up. Wow! We pray for you guys and hope that things will get better! Let's just get you guys home! Love ya a lot!
Amanda and Dan Arrhenius

Laura Bernard said...

Soo glad to see that cute smile!! Since Saturday I've been thinking of how tasking it must be to keep being gentle and patient when he's sad and whiny. You know he doesn't feel well or understand, but it is still so hard to deal with unhappy kids! I'm glad you got a little break at least! Spaghetti and French Fries, too! Impressive!

Marye said...

It's so great to see a smiling little boy. And it sounds like he is enjoying his food. I hope that you will get to go home this week. It has been a long time coming.