Rambling of an *Almost* Sane Parent

White Blood Count - 1240 cells/microliter
Absolute Neutrophil Count - 250 cells/microliter
Segmented neutrophils - 18%
Band Neutrophils - 2%
Lymphocytes - 22%
Monocytes - 52%
Eosinophils - 6%
Basophils - 0%
Metaphils - 0%
Myeloblast - 0%

ANC is at 250! It is increasing exponentially at this point, so every day it is doubling. So tomorrow, Cael will probably be at 500, then 2500 by Friday. It has all started to move along very quickly now.

Today, they took him off the Ativan (anti nausea), and have made it available as needed. They also reduced the xopenex (used to open his airways in his lungs - used a lot by asthmatics) to every 8 hours, instead of every 4 hours. Soon, they will decrease the lasik (diuretic) from every 6 hours to every 8 hours. That will be taken away once he is taking most of his medicines by mouth. They want that to happen before he leaves the hospital. Then when we come back to the clinic, they will give him his other medications that he needs. They tell us he will start by coming into clinic about 3-4 times each week for about half a day each time. It seems we will still be pretty busy after we leave the hospital. 

It's looking like it will be just a couple more weeks until he gets to leave. Maybe even less than that. Probably some time next week we will get to leave! (Assuming nothing drastically changes between now and then) I'm a little nervous about leaving. He won't have the constant monitoring to know if something isn't quite right, and we won't have the doctors and nurses around to help in those instances. It seems that things are going remarkably well, but his health is the absolute number one concern for us when we leave here. I'm going to be pretty cautious about everything for quite some time. I'm especially nervous about it being the winter time and the sick season. I just don't want to come into contact with someone who is sick, then bring it home and get Cael sick. I think the first 100 days after transplant are the most critical, which is why they want us to stay in Houston for the first 100 days. After that, I don't know how things will change. We haven't had that conversation with the doctors yet. From the few families with SCID children that I have spoken to, it sounds like it will be a long time before things are really normal again. At this point, I just plan to take everything one day at a time and deal with any new things as they arise. I have no set plans at this point.

**It took me a very long time to write this post. When I started writing, I really didn't think I was worried about leaving, but as I got going, I realized that we really will be leaving the hospital soon, and that things are going to be very different. Hospitals are so clean and precautions are taken by all the workers to make sure he is safe. When we leave, it will be completely up to us to keep him safe. I don't think anyone in our lives really understand the enormity of what is happening. We won't just be leaving, then waiting to go back to Austin, then our lives are just *bam*, back to normal. To this point, I have been VERY optimistic about everything. I think I have been so much so to a fault. Please do not mistake my optimism for thinking that everything is A-OK. Things are going well, yes, but that doesn't mean there aren't major concerns. Our lives are forever changed due to this. We will have to continue to be careful for quite a long time. We will have hospital visits very often, then slowly taper off. At the longest, we will still need to take Cael to the hospital every single year for check ups. Even then, there are going to be concerns about his cell counts forever. We don't know at this point if he will need continued IVIG, or if his immune system will be truly re-established.

We have spent so much time counting down until we get to leave and go home that we haven't put a whole lot of thought into what will happen once we get to go home. My parents have plans to come stay with us for a while in order to help me get back to work and keep Cael at home. But they can't stay forever, and I don't want them to. (No offense Mom and Dad). I spent a lot of time in my life preparing for a life on my own, with my family, and I don't know how well I will do going back to living with my parents. lol (Who would??) We are going to have to figure out some way to adjust our lives to our new circumstances and make the best of everything. 

That was really ALL over the place. Sorry about that. I sometimes have a hard time collecting all my thoughts, and then I just end up rambling and repeating myself. It might also be that I am going just a little crazy after being in a small hospital room for the past 4 months.