Bleeding

View Messages
Privacy + Settings
Login
Theme
- Green
- Lavender
- Pink
- Neutral

August 28, 2007 at 3:04 PM by Mom_2_Boyz
4 Comment(s)
33 Total Views

Add Shortcut

Our surgery scheduled for today was CANCELLED! Drew had some abnormal lab results. It was a blood count and bleeding times. It's a big mess. He has a Chromosome 22q11 Deletion which can cause thrombocytopenia (low platelets) which could cause bleeding. Throw in easy bruising, easy nosebleeding and two occasions of bleeding problems with surgery and they freaked and cancelled even though the hematologist they consulted said the results were not that abnormal and they could go ahead with the surgery!

We are so bummed! Drew kept saying, "I am running away!" after we broke the news. He wouldn't say why he was mad, but I feel it was the sadness and confusion at what was going on and the knowledge that Mom and Dad were upset.

He really needs this bone graft so we can move on with a p-flap or speech bulb. ARG!!! I hate this! We have to see a hematologist for further testing now before Dr. Motoki will operate. I love and trust Dr. Motoki... but GROWL! This is just one more complication in the mix. And though I am SO GRATEFUL to be so close to a children's hospital, it is an hour drive both ways to PCMC. We spend plenty of time on I-215 as it is! And he is in 1st grade now, so I hate for him to miss school for appointments. I guess you do what you have to do. Worst case scenario, they find a hematological problem and the fix is to "monitor him closely in surgery", which we could have done today and had it overwith!!! I am hoping for find it and fix it or normal. Lets pray!

Some days I really hate being a SuperMom to Exceptional Kids! And I am pretty sure I stink at it! I feel like this is all my fault for bringing up the risk of low platelet count with the Same Day Surgery nurse! I feel if I had just answered her "bleeding problems" question by telling her he had trouble 3 years ago with his tonsillectomy and 2 years ago with the palate repair and left it at that we would be walking Drew back to surgery right now! I just know I would NEVER have forgiven myself if I had kept quiet about his chromosome deletion and the risk for low platelets because of it and something awful happened to Drew!!!

Add A Comment

Written by Mom_2_Boyz on August 28, 2007 at 3:04 PM
33 total views
See all posts by Mom_2_Boyz
Everyone can see this journal post.

Comments:

As hard as it is I think you did the right thing. I hope that everything goes well the next time around.

mommalady Aug. 28, 2007 at 3:18 PM

been in your shoes!! just last month when TJ had his tubes done we had to rescheled his surgery because he was sick the week before the surgery. TJ was suppoted to have it on june 18 but had to rescheled for july 2nd lets just say that did not go well with my bose but she did understand though and I always hate to leave a shop druing the hoilday weekend. but as i said at my interview that my kid comes frist!! and hell with my job! ( i only work weekends at the coffee shop) drew will be in our thoughts.

christy1977 Aug. 28, 2007 at 3:50 PM

Honey, as hard as it might seem I think you answered your own question and did the right thing. I know, more tests and all, but you never know what might have been. We are ending up at PCMC in Sept. Our twins need to have a sleep study done, again. Good grief! They aren't gaining weight and they eat like little piggies. Their ENT, Dr. Park, thinks all the calories they intake are going to breathing and not to growing-though they are so very active. They were both born with micronathia and had to have a mandibular detraction. I hope it's nothing serious, no more surgeries. Although if it did come to that I would be able to handle it having gone through it before. (But I would cry) Dr. Park said it may just be an obstruction. Let's hope. My prayers to you and your little man. How frustrating for him. Hugs-Tiff

dinosaur4mommy Aug. 28, 2007 at 5:12 PM