I've not written for the past few days for a few reasons, I've just been trying to digest life and my laptop has decided to crap out on me. I didn't realize how often I was blogging at a very late hour when the house was quiet and I could get some thoughts down! I don't know if we can find the part for my laptop (as it is quite old) so the blogging might still slow down for a bit. It is difficult to find time to sit down at home during the day downstairs and the hospital computer is somewhat limiting.
Braeden has certainly been holding his own the past few days. He is tolerating short holds (about 1/2 hr to an hour) which is therapeutic for all involved (usually me). They have weaned him down on his morphine with the hopes of getting a better idea of his movements and it is easier to track possible seizure movements. It's not really so much good days and not so good days anymore for me, it is good hours and not so good hours. Thankfully we've been having more good hours than not in the past few days.
I met with the Neurologist yesterday to view his MRI pictures. What I didn't realize is that it wasn't one stroke it was actually a series of several small strokes. It was quite something to take a look inside your child's brain and see the areas of stroke. We (Michael and I) are trying to keep a positive outlook on the brain function until they can tell us otherwise. Braeden is still far too swollen to do an EEG (brain scan) so the plan right now is to do a MRA (same as a MRI but different views) next week. The other thing that the Neuro pointed out is that B's actual brain is small for it's size. He does have 'all the parts' it is just small. She told me that she is unsure what this means, as she could hypothesize all she wants and in two years I would come back and tell her she is/was wrong. Only time will tell with Braeden that if he is strong enough to pull through all of this, how he will be able to function in everyday life. I know enough now that I won't take 'no' for an answer with this kid. There will be no waiting till he is 4 1/2 like we had to with Torin.
Braeden's blood pressure is up again so they are looking again at the kidney function. It is pretty hard to come back from renal failure without some consequence. He is out putting urine but it is hit and miss at times which makes me wonder (totally speculating) if one kidney is working harder (more?) than the other.
The good news is that the phenol barbitrol (sp?) is keeping the seizures at bay for now. He certainly doesn't need to add anymore of those to his repertoire right now.
Everyone is asking how we are doing. This is not a question easily answered, not that we don't appreciate the concern. Just know that we are getting out of bed each morning and carrying on, that is about all we can do right now. Torin and Rylan are so excited (of course) on the count down for this blasted holiday approaching and we are just doing our best to keep things 'normal' for them. They do struggle at times, certainly it is to be expected but we are just being honest when questions arise and trying to give them some leeway.
If people are still looking at ways to help, my friend Lorna Zebedee (along with Kiran Parhar and Amie Roman) is organizing a blood drive in Braeden's name in the new year here in Calgary. I know many of you are not local to us so feel free to doing something in your area. I am so proud of the people that are already donating. As my sister-in-law Angela Watt said, "If I didn't pass out donating, anyone can!". I am finding it really important to 'give back' and I know how much these resources are needed. I was holding Braeden's hand yesterday when they called a 'code blue' over the hospital intercom. Now I heard these quiet frequently at Foothills and didn't think too much of them (as disturbing as they are) but to hear it called at Children's Hospital, knowing that it is someone's child just made me ill. It is so difficult to imagine a child in pain and suffering but they are certainly out there and they certainly need our help. If it weren't for all of Braeden's transfusions (and I've lost count of them all), he wouldn't be here with us. At birth Braeden himself was coded as a 'code blue', I've been there and don't ever want to hear those words associated with my child(ren) again.
Time, time will tell.