thus.
almost two weeks into our time at SickKids and we are getting used to how they do things here/we've been beaten into submission (depending on your perspective - ours shifts daily). we're slowly finding a few people we like and trust, though none of them doctors yet.
and for all the trouble of our first week, there was some good news. one is that Ford has been occasionally smiling. before last week, we'd never seen him smile while intubated. here they intubate through the nose instead of the mouth like in Vancouver, and that has freed his lips to more varied expression. he smacks his lips too and is able to (sort of) chew on his soother. he lost his ability to suck when he had the stroke, but he sure loves to try and remember, which is great.
we captured some video of him smiling and though it looks fine on the camera, it is indistinguishably dark on the computer. who has software to brigthen? maybe i could send you the file. RSVP.
other good news is that he doesn't have DiGeorge syndrome, which they were chasing down due to his recurrent infections.
also, results from the transplant assessment bloodwork show that he is still compatible for an ABO mismatch heart. they will test for this monthly. babies can remain compatible for up to 18 months and it means that the donor heart does not have to be of the same blood type as Ford.
the bloodwork was also to test for certain anti-bodies. since Ford has foreign tissue in him (the bit of heart tissue from an 18 year old who died in a car crash that was grafted onto his aorta during the Norwood) and has had multiple blood transfusions, he was at higher risk for having developed said anti-bodies. positive or high results wouldn't exclude from getting a heart, it would just mean more aggressive immuno-suppressants post-transplant. but with the exception of one positive result, which was low enough to be almost negligible, Ford's results were negative. which is good news too.
we're glad for the good news, and we're relieved and encouraged by the smiling, but we're also struggling. it is so hard when he is intubated. we can't pick him up or hold him and because of the pain management sedation, he spends most of his day asleep. we sit by his bed and read and wait for the few minutes he will be awake so we can smile and wave and coo before he slips back into sleep. the team here is not optimistic that he could be extubated and the thought of waiting at his bedside like this for months leaves us daunted and dodging depression. that said, they are trying to slowly wean the vent, as no breathing tube is much healthier for Ford than having it, if he can manage to breathe on his own of course.
in other news, we've been in the Ronald McDonald House for a week now gratefully not in any kind of theme room. and today, we are moving into an apartment run by the RMH. they have four in the city for their more long term families (ug) and one just became available. it will now be a subway ride instead of a short walk to the hospital, but we are looking forward to our own space.
lastly, i'd been saving this for Valentines day but then missed the occasion - Ford bled a heartshape onto his GJ dressing in january just to send you all some love in return for all the love sent:
and so and so, &c, &c.
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Thank you sweetheart for all the sharing. Good news amidst all the pain and struggle. And I love the photo of Ford's bleed - a perfect metaphor it seems.True love always, mom.
ReplyDeleteChrista,Nick and Ford,
ReplyDeleteYou 3 are always in my heart. The three of you deserve all the compassion and prayers the world can give. But you are right, you also deserve to handle and give updates on your terms. None of is is in your shoes so the least we can do is just appreciate the sharing when it comes. Thank you!
Please never worry about demands from us readers! That you are having so many struggles, and enduring such hardship and pain and still manage, whenever you can, to keep us filled in is absolutely astonishing to me. I am sure I speak for many when I say we are grateful for any updates and check regularly only because our hearts are there with the 3 of you and, somehow through the checking, we can strengthen the fibres of the connection.
ReplyDeleteFord's valentine bleed is beautiful~thank him for me, will you? and tell him that when he is ready I will have a collection of heart shaped rocks,that the faeries and gnomes keep leaving in my garden, for him to play with!
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ReplyDeleteYikes! thanks for the words as always, I used your Hubble numbers at our philosophy club meeting and intend to google it myself. I can't imagine life getting more complicated for you 3, I checked all the links, I was hoping that roc'd ment rocking..... BIG HUG to all.
ReplyDeleteLike the others who have posted here, I do eagerly await your updates but respect that they cannot be forced but must be offered freely. Please know that you and Ford remain in my thoughts and prayers. It must be so hard to not be able to physically hold him, but I know that he must enjoy hearing your voices.
ReplyDeleteMy late husband used to talk about the healing power of singing -- explaining how the sound of people chanting in a sweat lodge during ceremony reminds one of the muffled voices and singing we heard while safe in our mother's womb. Christa, I imagine that when you sing softly to Ford as he lays in that hospital bed it too reminds him of his time before birth, and brings him feelings of comfort and safety that are similar to what he would feel if you were able to cradle him in your arms.
All of you are in my thoughts. I do eagerly await your updates. Sesame Mucho is on my bookmarks bar & is my first checked site in the morning. Having said that I completely understand when the updates don't come for awhile. I think it takes a lot of energy to keep us all in the loop.
ReplyDeleteLike everyone else, I'm sending Ford and you two lots of love and all of my best wishes. I am holding strong my positive thoughts for you sweet Ford. Grow strongly and know how blessed you are to have such parents. :)
XO,
Lynne