Oh my dear. I went into full frustrated Mother mode and contacted the Janeway, SickKids and our dermatologist. Yesterday we got the needed response from SickKids, they had expedited our assessment appointment and booked us in for October 3rd. There are 3 appointments for Jake on that day - G Tube Assessment, Mapping Ultrasound and Preanaesthetic clinic. As things currently stand, Jake won't be getting his G Tube on that trip. :(
The plan is for Jake's pacemaker to be moved on that first trip, then for him to come home and heal before making a second trip to SickKids to finally get the G Tube. There is a slight possibility that all will be done in the one trip, but we won't know until we get the results from the tests being done on October 3rd. Please pray for it to not be necessary for Jake's pacemaker to be moved - for the surgeon's to see a route to get around the pacemaker without needing to do two separate procedures. I'm holding out hope for this, even though I feel the likelihood is slim.
In the meantime we are doing "use" tests for 3 different kinds of tape and 2 kinds of barrier creams (Cavilon and AllKare) to see which allergies are legitimate. This test involves different kinds of tape being taped to his inner arm area, leaving it for 4 days, and then seeing if there is a allergy reaction when the tape is removed. I'm beginning to suspect that it's the barrier creams and duoderm, as the reactions have always been a straight line of red - not heart or animal shaped like the hypafix would be.
Jake is still his happy and smiling self, although he does try to remove the tape from his arms whenever he gets a chance. Check out this shot from today while waiting for big sister's bus to come down the street...
Dollface :)
We're having some technical challenges right now in our home - it's week 2 with no oven as we are still waiting for the part to come from the mainland, and this evening Jon broke my slow cooker while cleaning it out after supper. Oh my. We're getting creative anyway!
Georgia has adjusted well to school, and likes her teacher and loves riding the bus. I'm so proud of her. Lukey likes to wait at the bus stop for Georgia too. Here are some waiting for the bus/getting off the bus pictures...
We are really loving our life at the moment, despite the stresses of the NG, taping and germ anxiety. We are blessed, and we know it. Each day is a treasure, regardless of how chaotic and stressful it is.
Tonight we went to Chapters with the whole family, and I really felt my germ phobia and anxiety taking over my whole experience - and certainly interfering with Jake because of all the hand washing and sanitizing I had to do while we were there. From now until his October appointment I need to keep Jake well - there is no chance of surgery or anaesthetic if he is sick. The last thing we want is a prolonged stay at Ronald Mcdonald House waiting for Jake to be well enough for his appointments. Where is that bubble when I need it? I'm seriously considering taking Jake out of any outside activities between now and then - music, church, etc. I don't know what to do. How do I find a balance that is healthy for Jake while not depriving him at the same time? I'm thinking it might be reasonable to have short term restrictions until after his procedures - this is shaping up to be a boring, stay at home month. I don't know. I don't have the answer to this puzzle. Oh dear.
I think I need to make this my mantra...take a deep breath and...
We received a generous gift of help from a friend, completely out of the blue, that will take away some of the stress of the travel and time away from home. You know who you are - thank you!
Don't forget Jake's blood donor clinic is coming up this week...Here's the poster again in case you missed it last time!
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