History: Wow, it has been a long 2 months since Hayden was hospitalized for terrible vomiting. Surgery will be bright and early tomorrow arriving at 7 am for surgery at 8:30 (CST).
I can honestly say not much has changed for his health positively except that we can now give him meds through the tube and push fluids even when he doesn't want to drink. We have also added yet another doctor to our scheduling. After nothing else was working, we sought out specific nutrition advising from a PHD, MS, RD, LD Lea Gebhardt for nutrition counseling for Hayden specifically. This was unlike anything else we have ever heard. It gave us hope and was pretty exciting for our new journey feeding through the g-tube with the Vitamix.
We have tried to tell Hayden honestly what will be happening to him and to educate Hanna as well. One of the DME (durable medical equipment...for those of you less familiar with this lingo) providers gave us a stuffed dog last time at the hospital with a mini feeding g-tube to show what it will look like.
Surgery Notes: We are hopeful that the g-tube surgery will stop all his vomiting. He has been home all week away from any germs to try and keep him healthy enough for surgery. Monday was a low point for Hayden after two heavy vomit filled days where I had to restrain him and place a new tube twice. I really think we should both have been allowed sedation from this mess. I hope he doesn't have PTSD as a result of this feeding tube. He is excited to get the tube out of his nose.
Hayden will undergo 6 hours of surgery + tests as mentioned in the previous post. His recovery from sedation is supposed to be 2 hrs. The other good news is, that Hayden's BFF from his PPCD school, Costa's mom, will be his night nurse for the weekend. Here is to hoping this medical marathon goes well.
On a positive note, Hayden is the running inspiration for a new friend, Becky Boustselis. We just learned of this group http://www.whoirun4.com/. They link mental and emotion encouragement for both runner and honorary runner bringing awareness of the differently abled. It is so fun, like having a great pen pal.
Hayden also had his annual Medicaid evaluation and the nurse said he scored the highest of anyone in the system right now(as Hayden vomited blood as the evaluator walked through the door). Not exactly the best news you want to hear but good news as we will be getting more nursing hours. We love our nurse Dana! The best news however would be that he no longer qualifies for Medicaid as his health has improved dramatically.
Friends & Family: We feel loved & blessed to have friends to schedule care for Hayden's big sister, Hanna, while we drive back and forth to the hospital. It is really something humbling to trust our friends for caring for our daughter and for them to love us enough to let us impose. We will have family coming from Montana to help with the recovery when Hayden is discharged from the hospital hopefully Monday morning.
Many of you ask, what you can do to help? Help us laugh. Send Hayden a video on my iphone or e-mail for my ipad. He loves to play & watch videos.
Don't be afraid to reach out. You won't bother us at Dell Children's Hospital. If we are busy, we just won't answer:).
Here is a fun viral news story of a little girl in the hospital that had too many pizzas!childrens-hospital-overwhelmed-with-pizza-after-cancer-patients-window-sign/
Thank you again for all the positive energy, messages, meals and phone calls!
Love,
Hayden & his family
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