Alex and Maddy

Alex and Maddy

Wednesday, September 17, 2008

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

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