Do I sound like a broken record?? One would think they would go craaaaaazy for as much as we have been through but I don't think I'm too bad.....YET!
Bruce is back in Children's Mercy. His infusion Monday went fantastic but I brought to attention his newest medical mystery....a black tongue. From what I heard, there was some slight panicking on behalf some of the staff but quickly a cause was found and it's from one of the strong antibiotics. Hopefully next week when his 4 months of antibiotic therapy is over, his black tongue will go away. (On a side note, I did make Halloween cupcakes the day I noticed it and they did have black marshmallow fondant but I can assure you, my 5 month old did NOT eat the cupcakes.) I thought it was ironic though.
But the tongue is not why he's back. On Tuesday, he had Special Care Clinic and Infectious Disease appointments. For the last week now little man has been incredibly fussy, which babies do, but as parents you know your child and if something is wrong. With all that Bruce has been through this summer, the docs agreed a ct scan would be helpful to make sure everything with the shunt was alright and nothing was out of place. Fortunately, everything looks ok shunt wise but on the ct scan, they noticed the ventricle is slightly enlarged. Which is concerning. So they admitted him and a bunch of tests have started again.
Right now, we really don't have any answers. The neurologist stopped by today and upped his seizure meds because come to find out, he's chunky. I guess he's been putting on too much weight but as a momma, that's music to my ears. There is nothing wrong with a healthy, well-conditioned baby. We're waiting to hear from neurosurgery if they have any suggestions but last we knew, they weren't too concerned. So, it's literally a waiting game. Bruce is still fussy but the nurses on 5 Sutherland are glad to have him back. Secretly, I think he's happy too to see his ladies.
Back to the 'too many chefs'. Every doctor has their own agenda when it comes to Bruce but the end goal really is to get him healthy. The communication has been lacking some but hopefully our geneticist is going to step up and herd up the free-ranging cats and get everyone on one page. Her theory to Bruce's poor eating habits is from the damage done to his brain from the abscess and suggests maybe a more permanent tube in his stomach for feeds. We were hoping as parents that the antibiotics were the culprit and once he was off them, he'd feel better. It will be interesting to see how next week plays out and how Bruce responds. A g-tube may be necessary but one thing is for sure, we will work with Bruce each and every day to make sure he is learning and growing and doing as best as he possibly can. Soon we meet with a Behavior and Development specialist at CMH and we'll get the ball rolling with as many programs and work as he needs!
When we were riding up the elevator Tuesday to Bruce's first appointment, we ran into his old NICU buddy's grandma. His buddy was born in March, two months premature (his due date was the same as Bruce's) and had a lot of respiratory issues. Finally after 7 months, he was getting to go home!! We were so excited for them and wish them the best of luck on the outside!!! Hopefully one day his momma and I can get the two ornery fellers together for a play date and we can tell them both how many headaches and sleepless nights they gave us....and how proud we are of them for growing big and strong!
Surprisingly, but then really not, we are in our same room we had six and a half weeks ago. It's like they saved it for him. It feels a little too much like home.....but I do enjoy the view of Union Station twinkling in the night lights as I sit here and type!
I started working, YAY!! It's a fantastic opportunity to do some things I really love....organize, data entry, emails and blog! I know, I'm a dork. It's for a Kansas City-based online marketing company, Turn The Page Online Marketing, and I get to do pretty much everything from my computer. And my computer goes with me everywhere - home and hospital - so I have something to focus on in between doctors and nurses popping in and out and while little man snoozes away at night. It's a great company and has some really great people working and I'm soooo excited! While I miss all the guys and farmers and office folks at the coop in Iowa, I'm happy I can do something that allows me to learn a new industry and be with Bruce as much as I am. I'll still spend some time this winter sitting around drinking coffee with all my favorite farmers though....
So that's the latest. I haven't made arrangements to stay at Ronald McDonald house yet because who knows how long this stay will last but if it looks like we'll be here throughout next week, I'll get a room. For now I'll be bunking in Liberty at mamacita's...home cooking beats cafeteria food!
Bruce sends his love and his parents say THANK YOU for the continued support and prayers!!
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