ANOTHER WEEK....

I just had a consult with the new intensavist for the week, Dr. Erica Molitor-Kirsch. She was very sympathetic to the fact we have been here a very long time and recognized the fact that each week when a new doctor comes on, they change the general care of Cooper. She said she knew this was a concern of mine and wanted to assure me that she will make no major changes. Cooper's heart is doing well. It is still slightly swollen but this is to be expected. She does not think they will be doing anything further in regards to his heart this stay. His incision looks very good and is healing nicely. His lungs are also doing much better. His x-ray this morning looked much better than it had. The swelling in his stomach and liver has subsided and Cooper looks like Cooper again. All in all, Cooper is recovering well from the heart surgery. They still have to get him switched completely over to the Digoxin and Captopril but believes they have found the correct dose of Captopril so this shouldn't take long. However, the issue of withdraw is another matter. Cooper had a very hard time when they removed his drips and Cloridine patch. Basically they have loaded him back up with Ativan and Methadone. He did not sleep at all last night and finally dozed off around 6am. They have kept him well "drugged" so far today and he has been sleeping. They basically had to start over with this process. When Cooper started going through the withdraw his blood pressure elevated and SAT level dropped. They could not chance he would go into heart failure and did not want him to go back on the ventilator either so they drugged him back up. Today they do not plan to make any major changes. They have ordered a consult with pharmaceutical and they will now be involved in the plan that is derived to get Cooper off the meds. They will then follow us to the 4th floor and that way we have a consistent team to oversee this process when we leave the PICU. I am to meet with them today. They do not assume we will be released from the PICU for another week or so. As if that was not enough bad news they also said that they saw a small abnormality in one of Cooper's genes and have ordered a copy of the full genetic testing that they did when he was born. They said that it is very small and may not even be determined a genetic disorder but want to follow up on this. We had never been told about this before and that does not make me very happy. Dr. Molitor-Kirsch said this is nothing to worry about at this time but just want to find out exactly what it is. I will meet with the geneticist later today as well. I have also been asked if I would like to meet with a financial assistant consultant to review any options we may need as they are roughly estimating we will not walk out of here under a million dollars!!! I opted to meet with them.

Did I mention I hate Monday's! Monday's always bring bad news! Did I mention I want out of here! 19 days and counting!!!!! Everything is starting to make me angry. I know this too shall pass but let's be honest, that does not help right now! Trust me, I do realize that there is a lot of good news for Cooper too and I am glad that his heart is recovering but who would have thought about everything else. I think there should be a book for parents, "Best Case Scenarios and Worse Case Scenarios; A parents guide to dealing with the ups and downs without poking your eyes out!" See I already have the title for it.

I did go running this morning and good thing after all this. I headed out and it was slightly raining. I knew I needed to run west but I decided to go a little north first because there was a long sidewalk. Big mistake! So you have all seen those runners standing at a crosswalk who just keep jogging in place and as you drive by you think to yourself they are crazy. Well that was me this morning. There are a hundred crosswalks and so much traffic you actually have to obey them. So I am jogging in place at this cross walk looking around and realize there are quite a few homeless and empty buildings. Was making a conscious decision I probably needed to not go any further when a homeless man approach and asked me something about my Ipod. I was politely telling him I needed it to run when a man in a suit was approaching and he put his arm around my shoulders and led me away from the homeless man while telling me, "You do not talk to the homeless and you need to run not go any further North or East only West!" I thanked him and headed West. It made me laugh a little bit because when the homeless man approached me I knew I shouldn't talk to him but I also didn't want to be rude. Anyway, I headed west and discovered Town Center is right here. I ran all over Town Center and every time I saw stairs ran them 3X. Do you know how many sets of stairs there are in Town Center and Washington Park? Thousands! Probably not but by the time I was done it felt like it. It was a great run and everyone was pleased to see me return. I will definitely start doing that every morning. I felt very good afterwards.

Well the pharmaceutical team is here so I will keep you updated.