Great Progress

Sorry to not keep this updated. It's much easier to get updates on facebook. Just a quick summary. Levi is still in the PICU. He was moved her on Wed night. Thurs morning things were getting serious enough that we were told the ventilator was the next step. We have since realized that this whole episode is likely caused by a new medication  he was on. We have since stopped that medication and have seen remarked improvement in his condition. That along with steroids and anti-biotics and he is headed back in the right direction. He is being weaned from his oxygen and is tolerating very well. The next step is getting his feeds back up to a level he can go home on. He went on a hunger strike due to feeling bad so this may prove to be a hurdle. Please pray for continued progression.

Crazy Cold

Some of you may know already Levi Landed in the hospital this week. Its nothing short of a miracle that this is his first sick visit to a hospital since his NICU journey ended. A kid with his medical history should be making frequent trips for this sort of thing so we thank God for His protection over the past two years.

Basically Levi caught a common cold as far as we can tell. His chest X-ray was negative as well as the RSV swab. We are fairly certain that this ACTH treatment he was on wiped his immune system to the point he just can't fight this cold. We made two trips to the doctor on Sunday and then Tuesday and the was a progressive worsening to the point yesterday it was time to go. Levi's airway was already compromised so the irritation caused by the cold has all but shut it off now. Immediately upon arrival the good breathing treatments and steroids got going and we saw an immediate impact. Levi was feeling much better last night and this morning and even took a couple bottles. It looks like he could be stuck in there a little longer though. His body is pretty much wiped out so he is trying to sleep a lot to catch up and not eating enough to sustain himself. He has IV fluids until he gets back to it though. This afternoon Levi hit a rough patch again and had a freak out session crying until he eventually fell asleep. It looks like he's not quite out of the woods so please pray for him if you will.

While I am here I will give a quick update on the infantile spasms. The last post I made talked about the treatment he was starting called ACTH. Levi has since completed that treatment and it was not fully successful. Although the spasms were greatly reduced they were not gone which is the necessity when treating this. So he was weaned off and is now on a drug called Sabril. Sabril is more of an anti-convulsant I believe but is the other drug considered to be top notch in IS. The downfall is this drug has possible lasting vision side effects. We are praying that Levi doesn't get any of this damage as his eyes are already not 100% due to the ROP as a preemie. We are trusting God in this and praying for a resolution of the spasms for his brain to normalize and his development to continue.