Original Text of an E-mail from Douglas to Family/Friends
Got home a little later then expected. Alexandria started an episode shortly before we left. Afterwards we went through the discharge paperwork and began just chatting with our nurse Lisa. We talked a bit about her children, one of that was born fairly small like Lisa (but without any additional conditions). After a while of Kim and I chatting her ear off I asked if we were keeping her from any other patients. Come to find out Kim and I were the last family on the floor. They apparently had closed 3 earlier in the day to save costs and had everyone on 2, except us, so she was in no hurry either. 🙂 Lisa told me this was a somewhat new experience for them. It wasn’t very often that they discharge a child in Alex’s condition to go home. Most of the time children who have serious conditions either pass away before the parent’s leave, or are discharged into the NICU. I told her that Alex was good at beating the odds, she’d done so by making it to delivery and by surviving delivery, now by making it home. She’s an incredible fighter.
They attempted to give us this nice wooden “memento” box, which someone made for people to take things home in who are in our situation. We explained that I was creating a memento box out of the extra wood that was left over from building Alex’s casket. We really appreciated the offer, but believe another family would need it more then we would. She said they were a little small for some of the things they do and wished they were a little bigger. I told them about my wood shop and offered to make some bigger ones for them if they need them, so when things calm down I’ll do so.
It was much more difficult to leave then I had anticipated. Before Alex was born I had this strong urge to get her home as quickly as possible, to get her into familiar territory. The comfort and backup of the hospital was overwhelming though. Whenever we had questions, there was a button to push and an expert to ask. The NICU, although we never used it, was literally one door away from our room. I really really didn’t want to leave. Earlier in the day I had signed all of the paperwork for hospice. Although I have grasped what is to come, signing it with ink makes things much more real.
When we got home it was like a weight was lifted though. It felt so good to be home, to have her home.
Alex had one episode around 9pm, 12:30am, 1:30am, and 3:30am. She hasn’t had one in 2 hours, and Kim is sleeping soundly on the pullout couch in front of us, so we are sleeping. 🙂 Alex’s episodes last a little longer, but I’ve noticed that she doesn’t get as blue as she did before. I think she’s breathing very shallow, intermittently, rather then a complete stop as before. Her heart-rate doesn’t seem to crash as before either. While talking with hospice they explained that as time goes on her body will compensate for what is happening, that her episodes may dissipate and get better for a while, but then she and social worker said, “but they will return.” Neurolgical problems with the brain communicating and functioning the rest of the body is one of the main issues with Trisomy 18.
Now the challenge will be to get into a pattern of sleep and support. We’ll touch base with hospice today, and begin to get the boys familiar with having her home. Thank you to everyone supporting us.