Just click on the arrow to open the album. An November 17, 2009 update from Lyn is below.
LISTEN UP, SATURDAY NIGHT, NOVEMBER 28- BE THERE IF YOU CAN!
Royal Purple Lodge at the Elk’s Club in North Bay on
Saturday November 28th at 8:00 p.m.
This will feature the talents of Wayne Miller (Elvis) with the proceeds
going to help local children in need including Mikylah. Tickets are $20.00 each and you are encouraged
to bring a Teddy Bear for a child. We
like to make an appearance at all these events, so if all goes well, we’ll be
there.
November 17, 2009 Update
Sorry
everyone! I know there has been a
ridiculous amount of time that has passed since I last updated Mikylah’s
website. I also know that I’ve used the
excuse before that I never seem to have time to sit down and write an update,
but I really don’t. Obviously
there are a few things that have happened since our last update. To start, the fall fairs were fantastic. We were able to circulate a lot of
information about Biliary Atresia, and with the help of many people (thanks
Margaret!) we were able to adorn many wrists with “Hope For Mikylah”
bracelets. As far as Mikylah herself is
concerned, not a lot had changed at that point.
Her weight never increased, not even a gram, and her bilirubin levels,
and vitamin levels had their highs and lows.
We of course, made several predictable trips back and forth to Sick Kids
Hospital, knowing that things were not going to change.
At an appointment in the beginning of October, we were told by doctors that it would be in Mikylah’s best interest to have a permanent feeding tube surgically implanted into her abdomen. This was because she failed to demonstrate her abilities to thrive. So, very reluctantly, we went back to Sick Kids on October 19, 2009 and Mikylah had her gastrointestinal (G-Tube) put in. Now, upon going there, I had spoken to several different people who had experiences with the tubes, and they said they were “no problem”. We thought this to be fantastic news, in that it would alleviate some of the stress involved in feeding Mikylah. Boy, were we wrong! Not only did we have the stress of feeding her and hoping she would gain weight, but now we had to worry about the tube protruding from her stomach. We spent a week in the hospital learning how to care for the G-Tube and how to feed our daughter.
When we got home and unloaded our vehicle, our house quickly transformed into a hospital room with all the medical supplies and I.V. poles needed to care for Mikylah. Her first feed was disastrous as it was now a two-person job. While my husband mixed and prepared the formula and set up her feeding pump, I started to prep Mikylah. I loosened the stopper on her tube, but ended up taking it off too far. This caused the fluids that were in her stomach to come out all over her and myself. Trust me when I say that this is not pleasant. We have since mastered a system on how to hook her up to her machine.
The original plan with her tube was that she was to take however much formula she could by mouth, and we would feed her any formula left in the bottle through the tube. It’s like eating as much as you can until you feel full, and then having someone force more food into your stomach. Doesn’t sound very comfortable does it? When we had a follow up appointment in Toronto, to no surprise, Mikylah had not gained any weight. So, her team of doctors decided that she should try continuous feeds throughout the night and not worry about eating in the daytime. So now in one feed, she is supposed to have 650ml. This doesn’t sound like much, but it was originally the total amount she was having throughout a 24 hour period.
We had not been able to settle with this new feeding schedule because although Mikylah doesn’t eat much in the daytime, the large volumes at night caused her to vomit. So we spend our nights by her crib with a bucket for her to vomit into. We had to play around with the total volume she would receive over night (and keep down) and found that a rate of approximately two and a half tablespoons per hour is all she can handle. Hopefully, this volume will increase over time.
Mikylah is due to undergo her liver transplant operation in the next few months. At her last couple of visits to Sick Kids, her levels have not been in her favour and her liver and spleen continue to enlarge. We hope to start the process with a living donor (her daddy) and take it from there. It is recommended to have at least three potential donors. In the event that donor “A” is not a match, there are still others that may be. If none are, then we resort to a non-living donor. Either way, we are prepared to do whatever it takes to help our baby.
I should take this opportunity to thank a number of people once again. The staff at “The Brick” organized a fund raiser for Mikylah and went above and beyond with it. So we would like to thank Jenna, Annette, and all the staff and customers of The Brick who participated in that. Also, some members, congregation, and friends of the Wesleyan Church had a concert night for Mikylah which was so much fun. There certainly was a lot of talent there. We couldn’t possibly name each and every person who has been praying for us and helping us, but we want you to know just how much we appreciate it. In times of exasperation, it’s those thoughts and prayers that keep us pushing on.There is an upcoming concert being held by the Royal Purple Lodge at the Elk’s Club in North Bay on Saturday November 28th at 8:00 p.m. This will feature the talents of Wayne Miller (Elvis) with the proceeds going to help local children in need including Mikylah. Tickets are $20.00 each and you are encouraged to bring a Teddy Bear for a child. We like to make an appearance at all these events, so if all goes well, we’ll be there.
I’m sure there will be many things to write about at the next update. In any event, I’ll most certainly have lots to say. Until then………………