Things are going okay here. Alex's belly is doing really well on half strength feeds. his ammonia levels are starting to rise again and that makes him irritable. We are at 20 cc's an hour of half strength formula. We will keep everything the same tomorrow and see if his ammonia levels stabilize. The plan is to increase to his goal rate of 55 cc's an hour while at half strength formula and then try to increase the concentrati​on until we get to full strength. So far this is the most progress we have made.

I am really struggling with the nurse situation! Who our nurse is can completely influence whether we have a good or bad day/night. For the most part we are ecstatic with the day shift. Other then one or two days we have had the same group of nurses who have been so wonderful to both me and Alex. The problem has been overnight. We have wound up with new and/or training nurses foir several nights. They are perfectly nice, but unfortunate​ly when they aren't comfortable with everything they turn on ALL the lights every time they come in and if they are training they talk. So Alex and i are gettting no sleep. The other issue is with the overnight PCA's. Several of them were repeating Alex's blood pressure up to 8 times in a row overnight and his temp several times as well. Needless to say Alex is now not wanting to have his vital signs done. And those of you that know Alex and I know how crabby we are when we don't get enough sleep. We have put signs on the door with reminders about how low Alex's temps and blood pressures are overnight and asked to be respectful about lights/talk​ing, but we are still having ttrouble. i am praying that this improves because it makes such a difference in how i feel and cope with being here.

Landon is still holding his own. The plan is to extubate in the next few days.

On a positive note...I have convinced Dr. Koenig to give us a day pass for a few hours on Saturday. We are going to go to the zoo. We will probably be allowed to be out for about 3 hours. We are so excited!

Ali

We are having a really good day! We switched to half strength feeds last night. We were able to get to 15 cc/hr in the J tube today with no stomach pain. He is playing and his spunk is back.

The only bad thing is that Alex's back, shoulders, and chest are covered in a rash. He has had it for a couple days, but despite benadryl and hydrocortis​one cream it continues to get worse. We don't know what he is reacting to. Poor baby is so itchy!

Thing​s are getting back to normal around here. The nurses and doctors are gettting back on regular schedules. Unfortunate​ly, the city is still a complete mess.

Landon is holding his own. He is still on the vent, but plans are to come off this weekend.

We still do not know when we will be home. My best estimate is in 2 weeks. I am so sick of the hospital. I am just bored and ready to be in my house and my bed. Alex has been such a trooper through all of this. He has had his moments, but being in the hospital for a month could make anyone irritable. He loves "his" nurses and seeing his "friends" (the child life girls). He is spoiled ROTTEN, by everyone here.

Thanks to everyone who has sent cards, packages, and called or emailed words of encourageme​nt. They really are appreciated even if I can't always let you know. Please keep the prayers up.

Ali

Pretty boring the last few days. Alex is still having stomach and leg pains everyday. We have decided to try half strength formula to see if that can help. Other then that things are still the same.

Ali