Ok, I know I missed a few days posting....I apologize. It is not easy to find time to get on the computer when it is the G-man and I one on one all day. He keeps me busy and creative coming up with new ways to keep him entertained. We blew up hospital gloves one night, we have put toys in socks, used the thermometer case on our fingers as puppets. You name it, we have done it.
He is really doing well. I am so, so proud of him and how strong he is physically and mentally to not be fussy being stuck in a room and bed. They expect in these first two weeks following the chemotherapy and transplant for his body to go into Neutropenia. That is when there is an abnormally low number of white blood cells which makes the risk of infection great. So far, his counts are staying strong. They had a slight drop but then they went back up slightly. They really seem a little surprised to the point that they rechecked all of this Chemotherapy levels from when they were administered and the blood draws afterwards. All were at the expected dose levels and a couple of the draws afterwards indicated levels at the top threshold. So...he is Superman I guess. I know his levels are probably going to drop this week and Superman will be at risk but for now...he is still strong and healthy. Ha..see, a couple of hours after I typed this they came in tonight and said they are going down. His Hemoglobin is also sitting at 9 and they will transfuse at 8 so that will probably be this weekend. He will make it through this. He has proven himself to be strong. We will also know his cell activity next Friday. That is a HUGE day to me. I am very anxious already.
Transition #1 is that they moved us to the new ward we have been hearing about since we came here. I almost wish they would not have talked so much about it because I got this picture in my head based on all the hype that it could not possibly live up to. We were told multiple days we would move but Tuesday was the day. Brad was here to drop off some clothes for Giovanni so he stayed to help move our things over. The new ward is painted in orange and blue paint which definitely is warmer feeling than the white walled halls. The doors are all automatic and the entire ward is air sealed to keep the patience safe from outside germs. You have to wait for the air compression to reach the right level before the doors will open, reseal and air compress again. We get to our room and wow.....it is way smaller than the room we were in and there is only one window....I miss my 4 big windows since I crave natural light for my sanity. Not only is the window small but it has blinds on the inside and you can't raise them, only turn them up or down. My mind is spinning with anxiety and complaining and I feel bad about that but this is where I am going to be living for the next 5 weeks. We were basically just dumped in the room with the malfunctioning beeping door and left. It.would.not.stop.beeping. (and wouldn't you know it, as I type this the door started randomly beeping again. A nice, solid, high pitched beeping while Giovanni sleeps) It was driving me insane. There was no refrigerator like in the other room and they seemed surprised about that, there is a big changing table in the bathroom that semi blocks the door to get into the room, there was no high chair like I was promised, no trashcans and no diapers for him which they told me they were out of his size and I would have to wait until the next day (Brad made a special trip with a package for him). On the positives...it is warmer feeling like the entire ward, the TV is nicer (even though I just put it on the music channel for noise) and feels cozier. The nursing staff and doctors seem annoyed by the rooms a bit and our door is broken and does not open by itself as they should. I really feel bad complaining but this is where I have to stay, 24 hours a day with Giovanni (accept for a few hours every other day when I go home to see the kids). My ongoing joke (yes, I find myself funny) is that I have yet to find the bartender over here at the new ward and when I do I hope he has my drink made.
The kids like the new flat. It gives them much more space and feels more like a home than a hotel like were before. They miss their brother so much and it will really feel like a home when we are all back together as a family. There are 3 parks in walking distance and a canal to walk along as well as little town shops to wander by. It will be nice when G and I are back home and we can explore a bit more all together. I am all about learning what we can about the area we are living. There are several other families here for the hospital living in the Vimodrone area where we are. They do transplants for multiple other diseases so it is just the two MLD families and then another family from Turkey whose son has a different genetic disorder. One of the nurses commented to us that we are the first family from the US to come here that all of the families have been from the Middle East. I thought that was interesting that they all come from the Middle East.
We are in an area of the ward with just two rooms that are behind one of the sealed doors with our own sealed doors. The other family whose child is the #3 gene therapy patinet is next to us. I mentioned them before...they are from Egypt. The mother and I have waved to each other in the rooms and today when she was leaving she stepped in front of our door (the doors are glass) and waved, motioned towards Giovanni and gave a thumbs up? I acknowledged that yes, he was doing well and then asked her the same about her son who finished his chemotherapy today. She gave a thumbs up too. It was a nice exchange between mothers who know what the other is going through. I want to find out if she has a computer over there and we can e-mail each other and translate them into our own language when we receive them. It is as if we have a bond through the wall. She is experiencing the same fears and excited hopefulness that we are.
Our other, less exciting and very stressful transition is that our babysitter Tarah, who lived with us in Omaha, has let us know that she really misses Omaha and wants to go home. This is devastating news to us and frankly, to the doctors too. They have let her know that she cannot leave until we find someone to replace her which will not be an overnight task. We know a lot of wonderful people but they all have children of their own and cannot come here for an extended stay like that. I am most upset for the children. They need stability now more than ever with Giovanni and I gone and she provided that for them. They will now have to meet a new person and go through that tough transition all over again. I worry that they will be left wondering if they did something wrong since they think of her as part of the family and she would be leaving us. Giovanni is very attached to Tarah and he gets very excited when he comes to visit her at the hospital. It makes me very sad that he will not see her anymore. It is all very tough but we will get through it. We have gotten through so much already together.
My head is pounding. This has become a nightly thing the last few nights. Giovanni is snuggled in bed and I am going to join him.
I will try to be better with updates. I realize they don't have to be novels and the more often I post the shorter they can be.
I appreciate you all. We have several friends working on fundraisers. I will be sharing the information with details very soon. We are so blessed to have the people in our lives that we do. We could not get through all of this without you.
Hug Your Babies!
Allergy and Nephrology Appointments
2 months ago