Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Saturday, September 1, 2007


We thought everything was nailed down for Alex's second repair(Glenn) and everything is still on, however there are a few things that played into this whole thing that have changed slightly. Like: Alex had his four month well baby visit and vaccinations not too long ago and we have to wait six weeks for the surgery because when he goes on the heart and lung bypass machine, if we don't wait then the vaccinations will be eradicated from his system. We would have to do the whole series of shots over again. Not fun considering that he is so unhappy after getting them done. So instead of doing the Glenn on the 26Th as planned he will now be having it on the 1st of October. The cardio-cath will still be done on the 21st. The cardio-cath goes in through the groin and checks his blood pressures and his heart to make sure it all looks open and ready for surgery. It is a same day procedure. On Wednesday (26Th of Sept) Ryleigh leaves with grandma and papa Homer for a visit to Florida to see her cousin Grace and her Auntie Lisha and Uncle Ryan. They are all helping a ton to take her during this time. Also on that day the Dr's and surgeons have a board meeting and present all the upcoming cases. They will do an overview of Alex's case and talk about his past too. Then we check into the hospital on Sunday the 30Th and Alex will have his surgery the next day Monday the 1st. Ryleigh will come home Wednesday the 3rd and Jeff will stay at the hospital with Alex on Thursday, Friday and Saturday morning while I have Ryleigh and then Grandma and Papa Clawson will come Saturday afternoon and take her to Orem for a visit to play with the Auntie's and cousin Arlington, and uncle Marc and Auntie Lisa; until Alex is home which we hope won't be too long. Our family has been such a support and help, thank you. I am totally scared doing this all over again. I know how dramatic the change in his health will be, this is a driving force to get it done. I want him comfortable too so I already got him a little CD player and some tunes... I think that I will buy him a few very soft pillow cases.(he prefers them to blankets, weird kid, i know) I hope we can make him comfortable without holding him. Or I hope I can hold him soon after...... I will just be getting all my loves in now...


Anonymous said...

oh, wow does this bring back a flood of memories. THey immunizations. I remember that being a factor with bryson as well. However I also remember being in and out within a week. YEA!! Heres hoping Bryson taught Alex that trick. As far as the holding thing that was the hardest. We were asked not to even touch him, or even talk in his room the first 2 days out of surgery until they got the pain under control. I guess the new pressures in their head causes huge headaches. So they see/hear mom and dad and want to be comforted and cry and that only increases the pressures in their head and makes it worse. So that was hard but once we got passed that hurdle things sere better becuase at least we were able to hold him. Even though comforting him was hard. They say this is the easiest of the 3 surgeries. So if there is anything we can pass on from Bryson to Alex it would be to remember that stick to the routine of in and out in a week. No tricks! :)
You guys take care. WE are excited to see you soon and the picnic.

Anonymous said...

Miss Brynn:
Wow, your future month sounds like one full of anticipation! I am here for you if you need anything. Thank you for keeping this blog so updated! I love reading how little Alex and Ryleigh are doing!