Soon

This post spans two writing periods. The first is in the hospital on Monday and the second is on Wednesday morning.

I am sitting here in the hospital with Parker and my wife as we wait for Parker's IVIG to finish being administered. We have been here for about five and half hours now and probably have about another 30 minutes before we are done. The immunoglobulins are administered at a much slower rate than we have been accustomed to at Sick Kid's but I am sure that has something to do with the protocol of the hospital.

This week is definitely a big one for our family as we have our meeting with the head doctors on Thursday and then we are admitted to the isolation room on Saturday at 10:30am (Milan time). I know that it is going to be difficult going back into isolation especially since only one of us will be allowed in the room with Parker except during visiting hours which span three hours in the afternoon. While in isolation at Sick Kid's, I am sure that some of the nurses would say that we were difficult and anal retentive at times. My wife and I have already discussed the fact that we will try our best to not come across that way during our stay at the San Rafaelle. It will be very difficult being confined in such a small room with Parker and not being able to have each other to help but we will be patient and will make sure to support one another through the process. Nana and Gaga are here to help out wherever and whenever they can. They have been great the past few weeks watching Parker for us so that we have some extra time before going into isolation. However, I have a feeling that while Parker is in isolation, it will be my wife and I who will have to stay with Parker in the actual filtered room within the room we will be staying. With Parker being so active and the room being so small I have a hard time seeing it any other way. Regardless, it means so much to my wife and I that they have put everything on hold at home so that they could be with us during this extremely difficult time. We want them to know that everything they have done and continue to do for us is appreciated more than they could ever know and just having them here for emotional support has been a tremendous help. Parker is very lucky to have his Nana and Gaga and we know that he loves them very much.

It has been a few days since I cut Parker's hair. He was very good during the haircut. He watched his Backyardigans while I tried the best I could not to wreck his hair too much. I think we are used to his hair now but once I had done it my wife was a little disappointed at my haircutting skills. We all think he looks a little bit older now with his haircut.

We all went to the Duomo yesterday. All five of us. Gaga remembered his camera so he took quite a few images while we were down there. Mommy, Daddy and Parker are used to the number of stairs at the metro but it was a little difficult for Nana but she tackled them with flying colours. We had a wonderful day together and finished it off with some gelato before leaving.

Mommy is currently feeding the little monkey his breakfast right now. Lately I have been giving him cream of wheat with strawberry jam and strawberry yogurt which he really likes and therefore eats fairly well. From what I hear coming from the kitchen his regular cereal junior cereal mush is not going as smoothly. His lunch and dinner are Parker's responsibility. You saw the video. We give him the food and he finds a way to feed himself. We were told that that may cause a problem in isolation since they measure his ins and outs. That means they need some way to measure how much food he consumed. We will have to figure that one out.

Parker is coming off Septra/Bactrim and starting Pentamidine again. Septra is apparently more toxic to the bone marrow and for that reason it will be discontinued for the duration of the procedure. Pentamadine is administered through an IV every few weeks instead orally three times a week like Septra. It will be nice not having to worry about having to give Parker Septra in isolation. Diflucan and Cyclovarin will be enough for us to do by ourselves.

We have our meeting tomorrow afternoon and will no more information about the procedure then. On Saturday morning, we will meet with the head nurse of the BMT unit where Parker will be staying and they will train my wife and I on the isolation procedure.

I hope that everyone has a great week.

Ciao for now.