Home Sweet Home Again-- hopefully to stay :)

Noah came home on Sunday afternoon from MMC. He is doing and looking so much better. Very sleepy today but the poor thing has been through so much!!! So happy to be home. And to have my little boy home and feeling better. ITs been a tough week and Im glad he is such a fighter and we got through all the obstacles.

Mommy is doing ok. Im very exhausted and overly emotional now. But I got through all that was dealt my way and was strong in the moment. It really was a scary week and it made me realize not to take any day for granted.

He is doing well and we have a follow up appt with the PCP tomorrow and hopefully he will return to school wednesday....we will see how he is doing!

Back at MMC

So yesterday afternoon Noah was discharged from MMC. We went home.... through the evening being home it became extremely clear that he wasnt himself. Very twitchy and hyperactive and he wouldnt sleep. It was making me nervous. This morning I decided that I didnt know what was causing it and I didnt want to take the chance that it was siezures so as much as I hated the thought I had to do what was best for Noah and bring him back to MMC.
Apon arrival he was very out of sorts and wouldnt stop moving and twitching and very irritable. Thankfully some of the doctors who saw him this last week came and saw us down in the ER and they thought that he needed to be readmitted.
The doctors called the neurologist on call and he thought that maybe the hyperactivity and twitching could be caused by his increased Keppra dose and the first step was to reduce the dose and if things didnt seem to calm down they would do an EEG tomorrow. They did give him a dose of Diastat in the ER and it seemed to settle him for a while and he doesnt seem to be as hyperactive now. However last night Noah only slept a total of 2 hrs for the nurse. Which was also 1 hr here and 1 hr there it wasnt a full back to back 2 hrs of sleep. Tonight Mommy has tried everything to get him to go to sleep. I have rocked him, cuddled him, hummed to him, rubbed his head...and even crawled into bed and snuggled and his eyes are wide and he isnt going to sleep. Its gonna be a long night.
I hope tomorrow brings answers and they figure out how to help him. My poor little boy has been through so much this week... Keep those prayers coming...and hopefully the next time we go home it will be for more than 12hrs!!!

Home Sweet Home---I can almost feel it!!!

So Noah is returning to himself more and more everyday. He is doing great actually. We were moved up to the Barbara Bush wing on Monday night around 9pm. Yesterday he woke happy and alert, and very vocal. He was almost back to himself. Still congested on/off and still having a few siezures but Drs say his lungs sound great and that they are ok with a few siezures expecially if they are short ones in length. The neurologist came in to the room last night and talked to us and answered questions and we discussed how in the future we are going to address his med levels that tend to dip when he gets sick. This seems to have become a pattern. Noah gets sick and runs temps and then he seems to end up having subclinical siezures because his meds are at low levels. In the future we are gonna be able to come get his levels checked when he gets sick and hopefully we can catch them dipping before they get him into siezure issues.

Dr's have suggested today that we might be going home. That will be nice and I think I am comfortable with that. This momma is exhausted and still somewhat stressed. This has been a long week for me and very emotional draining. Im so glas that he is such a fighter. Im so proud of him....and I was so excited to finally be able to hold and cuddle him yesterday...

We are slowly but surely getting closer to be able to go home and Im so glad. I miss my bed.... and I miss my sleep..... LOL!!! Thanks to all for the prayers and positive thoughts.... The healing power of prayers is so wonderful!!!! We luv u all!

The hardest days yet!!!

So Noah is back in MMC. He came here on Saturday night by ambulance because he was having trouble breathing on his own. He kept turning color and his stats kept dropping. He is now in PICU. Sunday morning they had to put him on life support because we found he was having continuous siezures which was causing him to have respiratory failure. Yesterday he was able to come off of the life support because his siezures had stopped being continuous. He is still having on/off siezures and he is still very congested in his breathing but thank god that we have overcome the continuous siezures. I have never been so scared. They had a very difficult time to get his siezures under control and we were getting close to running out of options for the poor little man. Finally at 10pm on Saturday things began to look up.

He has a central access so that they didnt have to keep poking and prodding to get blood or administer IV meds. IT makes things much simplier.

We are not out of the woods yet but are improving please keep him in your prayers....

Poor Little Man

MY little man has phemonia again... and is still home but not feeling very well. Last night I was up until Midnight with the nurse and Noah because he was running a temp of 105.3 and after tepid baths and cool cloths it took 3 hrs to bring it down to 100.9....very scary. This morning he is doing better...very sleepy and out of it but his temp seems to be down.... hopefully the antibiotics will begin to kick in.
We have a doctors appt at 11:45am this morning...we will see what the doctor says...

Lets keep him in our prayers and pray for a fast recovery!!!