Mr.B had a very rough day yesterday unfortunately and needed yet another transfusion of blood cells and then followed it up with lasiks. He was uncomfortable, upset and sweaty most of the day and when they drew blood they found he needed a transfusion. We can be happy though, it is the first transfusion that he's needed for awhile!
I have seemingly given into the COLD. I feel like I got hit by a truck, not so nice. Being sick is made so much worse by not being able to be near Braeden. I took Mike up tonight because we were birthday present shopping for Mr.T (who turns 7 tomorrow!!!). I had to sit in the parent lounge while Michael went into see our little guy...that sucked. Being so very close but yet not able to be close enough. It was oddly comforting just being within the hospital though, just the familiarity of it I suppose. I am taking the homeopathics out the wazoo and just drinking as much tea and lemon and honey as I can put down. Did you know that sympathy ice cream does not help when you have a cold? Damn. Although my Mom did offer to make me a hot butter rum...hmm.
You know I realized today that one of the most common sentences I hear from people these days are, "well, I have nothing to complain about compared to you!". Just because my life is a bit out of the stratosphere at the moment doesn't mean that your life can't suck too! I guess the true upside is that if I can help people feel better about their lives and situations then that is a good thing right? Braeden's roommate's Mom and I were chatting tonight and I was so surprise to hear she thought that. Her life is certainly going to be hard, no considerations to mine are needed! Hey, being a parent of healthy, typical kids sometimes has its sucky times too! :)
We did get a diagnosis of sorts for B's lack of being able to come off his oxygen. The ENT (ear, nose throat) believes that B has 'Pierre Robin' Syndrome. This is due to the small lower jaw he has as well as the tongue falling back into his throat, blocking off the airway. This is something that he could grow out of (yes please) or they have a couple of different solutions one being a tube through the nose to the top of the throat for an airway and another would be wiring the jaw forward with surgery. The last option is a tracheotomy, but I'm not even going there. http://en.wikipedia.org/wiki/Pierre_Robin_syndrome It is just another piece of the puzzle that is Mr.B.
2 comments:
Hi Lia-
I came across your blog, as I am a member of the group that donated the blanket Braeden recieved (I didn't happen to work on his specifically, but I have worked on many others). I also know in many ways what you are going through and how hard it is having a little one with health issues. My 4 year old daughter was born with a severe heart condition (DORV) and Dr. Fruitman was her Cardiologist for quite some time (we are originally from the States, but lived in Calgary for several years and now reside in Edmonton). I assure you that your little guy is in amazing hands!! Please know that if you find yourselves in Edmonton and you need anything, please do not hesitate to ask. I will continue to follow Braeden's progress and my family will be praying for yours.
God Bless,
Sharon G.
P.S. If you ever think of it when you see Dr. Fruitman or Patti Knox, please let them know that the Giles Family sends their best!!
Thank you so much Sharon, what a small world it really is that we live in! Dr. Fruitman has been a huge support to us through this whole process, she is certainly an amazing doctor! I will certainly pass on your regards, she'll be thrilled I am sure!
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