Ryan Snell
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I had Boy/Girl twins at 28 week gestation. My daughter was born weighing 1 lb 10 oz, and my son Ryan was 1 lb 4 oz. He has had a very difficult life already.
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Madison came off the vent pretty early... and was sent home on her due date with oxygen. Ryan on the other hand, stayed in the hospital from their birth date (12/15/01) until May of '02. He came home for 1 week ONLY on oxygen and a Mic-key.. and had to return due to respiratory distress. He finally had to be intubated again and finally sent to Children's Mercy in Kansas City where we live. We watched our son CODE 3 times that day... it was the worst day we have ever had to endure. He was put back on the Oscilator and then back and forth to the vent... finally stable again. They felt the best thing for him would be to trach him... and after I found your website... that's what we did. At this point Ryan was 7 months old. He came home in October of 2002 on a T-Bird vent, 4 litres of O2, getting 3 different breathing treatments 3x a day. With 24 hour nursing care when they could staff it. One of the PICU Docs told us the day we were leaving that "You will be back... and I don't want you to think you failed." Isn't that nice to tell a Parent?? By February we were done with those breathing treatments... By June we were OFF the Vent during the day, By July we were OFF the vent all day. And now Ryan ONLY has 02 on 1 litre... with a Passy-Muir just last week.
Ryan is a true fighter... and God has a definite plan for this angel. 2 weeks ago he started crawling, today he is pulling himself up in his crib. Even our Pulmonologist said he was a "MIRACLE PATIENT". No one ever thought he would come this far ... except us.
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Update on Ryan Snell - November 2004: Our “little miracle”... is growing up fast! He went from the passy-muir valve to being “capped” in about 2 months. At first we gave him 02 via a nasal canula (to see if he would tolerate it in case he got decannulated). And he did fight it at first.... until we learned to put it on him after he fell asleep.
We did try to take him off his seizure meds... the Neuro Doc felt that since he hadn’t had a seizure in a year... maybe he didn’t need it. But we were proved wrong.... because after about a month... he had another. So we’re back on the Trileptal.... and no seizure since!
Ryan is learning to take food orally… and takes about 40% by mouth now… with the rest through his Mic-Key… but we’ll get there!
We were scheduled to be decannulated in August 2004, and he got a cold that week... so they didn’t want to risk it because he was coughing a lot, which irritates the bronchs... and they want all conditions to be perfect. So we rescheduled 3 weeks later... Sept 2004... and he ended up with pneumonia. We took it as a sign from God that Ryan wasn’t quite ready. We caught the pneumonia early... and was able to manage him at home with the oxygen and nebulizer. He was over it within a week! So we rescheduled again.... and as of OCTOBER 7th 2004... Ryan has NO TRACH! And completely off the O2.
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We stayed in the hospital over night for observation on the pulseox. He sated 95%. We knew that he would do ok, because he had been capped 24/7 for over a month. (Come to find out.... the ENT said we shouldn’t have capped him 24/7.... without having 24 hour nursing care, because it was too dangerous.) But our Pulm Dr was obviously comfortable with it... and we never had a problem. In any case... Ryan is a remarkable toddler now. He is walking all over the place.... into everything he shouldn’t be... vocalizes a few words, and signs about 10 words too. He continues to get OT/PT/ Speech and Special Instruction Therapies.... which has done wonders for his development... and we thank everyone that has helped him. He has many girlfriends in Therapists!!
We pray that other parents..... with kids like our Ryan... don’t ever give up... there is a light at the end of the tunnel. God has a plan for your baby too.
Update, August, 2005: Ryan had surgery on July 15, 2005 to sew up
his trach stoma. Surgery went great but we did have to spend the night in the
hospital for observation. Ryan always used his trach hole to breathe out of...
(and to make rude noises :) .. If after surgery he tried hard to blow through
that hole, he could have ripped his stitches inside... and then the air would
have no place to go but in his chest cavity. And then... I don't want to think
of what could have happened. Thankfully we had no problem with that!! He is such
a tough little guy!!
Now all we have left is the Mic-Key feeding tube that he uses about 50% of the
time. He still doesn't know how to chew... but we're working on it. He
LOOOOOOVES to eat though!
Ryan starts back to school next week...He goes to Blue Springs Special Service
Center 4 days a week..... it has been such a great experience for him... and
shown much improvement the last year, and I know he will only get better!
Developmentally he is probably about 18-24 months... but we have faith he will
catch up eventually. Just like everything else he's done... its on "Ryans
Terms".
God Bless all of you going through similar experiences... Fight for your baby
and don't ever give up!
Thanks for all you do!
Gwen Snell
Lee's Summit, MO
