WHAT A WHIRLWIND.....

Well things have been very busy here this morning! Cooper is doing good. I asked to give him a bath this morning and they were eager to let me. So I bathed him and dressed him in some cute clothes. Shortly after that Coop decided he was done with his IV and pulled it out. He is a quick little fella'. Anyway, it was the last IV he had and it was in his head. We are suppose to keep it until we leave here so I was so upset they would have to be sticking him but to my surprise they elected not to put it back in because he was not receiving any meds or anything else through it. So Cooper got his way and his IV is gone. That's my boy!!! Anyway, so the next thing I knew people, many people, started coming in and out flooding me with questions and information. So the story is they are trying to get us out of here by Sunday! Yes I said SUNDAY, the day after tomorrow! Yipee! Now there is no guarantee and many things that have to be done between now and then but that is the plan.

So in preparation for our long awaited departure they are trying to get Cooper up to 7 feedings of 130cc/feeding. They are still fortifying his milk to 24k/cal and therefore this seems like a lot. I worry about this a little because he is fed with a feeding tube so it is not like he will just stop if he gets too full. There is a nutritional team along with the doctors making these decisions though so I am sure it is ok. They also involved me and I expressed my concern and they are going to increase the feeds very gradually and therefore think it will be fine. They had discussed increasing his caloric intake as well but I let them know I did not think it was a good idea because we had experienced problems with this before. They agreed after hearing that we had tried it before. Cooper also had to go for a development screening and hearing screening this morning. He passed the hearing with flying colors and they had told me that he would not do well on the developmental because it is designed for 6 months and above and the 6 month olds just don't do very well. Coop once again surprised them and did really well! The test themselves are very weird and are done in the pressure booth that made both me and the nurse very dizzy and a little nauseous so I am not sure how Cooper was able to perform well. They said some people react this way to the booth and others don't but my head is still hurting and I feel really weird. Cooper is sleeping though so it must not have bothered him too much. We will be repeating these tests every 6 months until he is 5 and then yearly until he is 18. Yep, isn't that crazy! Studies have found delayed affects from ECMO that have affected hearing and development, hearing being the most prominent. We will also have repeat MRIs done yearly for the same reason. Needless to say we will forever be visitors of Children's Mercy and they will forever be recipients of our paychecks, hahaha! (I am trying my best to stay light hearted about that issue!) Standard hospital protocol is that an MRI must be done before we leave. In order for them to do the MRI, Cooper has to be completely sedated and back on the vent. Are you kidding me???!!!! Do they realize we are still suffering the consequences of the ventilator and still trying to wean him off the sedation medicines???!!! Well yes, apparently they do because the surgical staff is working desperately hard to waive the MRI at this time and schedule it in about 3 months. This would definitely be a set back if we were to have to do it right now and would keep us here again. We are to know about this by tomorrow.

We will go home with a very detailed medical plan consisting of strict feeding guidelines and medicine dosages. It will take us about another month to get Cooper weaned from the Ativan and Methadone. It will also be a big adjustment to learn to "read" him again. He has no voice so deciding why he is upset if sometimes difficult. Is he hurting? Is he just withdrawing? Is it his teeth? (oh yeah, he is starting to teeth through all of this) Is he hungry or tired? It is learning his cues all over again just like a newborn. Terry and I talked last night that we will begin introducing sign language as soon as we return home. This will give us another way to communicate in case this vocal cord or hearing issues become permanent. It will take a little getting used to things but it will be so nice to be home.

Cassidy and Chandler were by this morning and got to see Cooper for the first time since he came to the hospital. I think they were both very happy! Sherri headed back to Scott City to take Karli home today and of course Raelynn went along. I can only dream that we will be back home when she returns on Sunday!