Make A Wish

February 2005

Kids with Mickey
Stitch and Lilo Mickey and Minnie with the Orton Family
We were lucky to have our good friend Becky come with us.
Pluto saying hi to everyone...

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On February 6th, the Orton Family left for Walt Disney World. We were picked up in a stretch white limosuine that took us to the airport. From there we caught our plane to Orlando, FL. We were met by a "Give Kids The World" volunteer. (only wish kids are able to stay at GKTW) He collected our luggage, brought us to our rental van, gave us directions to GKTW and sent us on our way. We stayed for a total of 10 days and were able to take in many sites and attractions. GKTW in itself was like it's own theme park. They had a huge movie theatre, mini-golf, a merry-go-round, ice cream parlor, face painting, Disney characters that came to the village special to see the wish kids and much more. We visited EPCOT, MGM, Magic Kingdom, Sea World, Universal, Adventure Islands and of course Ben's grandparents who were staying in Tampa, FL at the time. It was an unbelievable, unforgettable and magical trip of a lifetime! We want to thank our wish volunteers, Maureen and Kim, who made it possible. We love you

January 2005 PICU Stay

What a crazy month January was. We were scheduled to leave on the 6th for Ben's "Make A Wish" trip to Disney World. The kids were SO excited! Unfortuanately Ben got sick on the 4th - two days before we were to leave. I still had great hopes that we would make it home in time to leave. (wishful thinking) I took Ben to the local ER like I always do and there they did all the regular tests and blood work before calling for DHART to come pick him up. On the way to Dartmouth, Ben got worse and they ended up putting him on the vent to rest him until he arrived in the PICU. There we found out that he had pseudomonas - something he probably is colonized with - but when his immune system is compromized, it can infect him and make him really sick. He actually looked really good for being so sick. The doctor's tried to wean him off the vent the next day so that he could fight this on his own but Ben would have no part of that. He was on a small amount of pressure support, just enough to make life a little easier while coasting through his illness. He had IV access for ceftazidine which they treated him with for 14 days. For some reason, we couldn't wean Ben off the vent. After the first week the doctor's began thinking that maybe Ben's brain was deteriorating and shutting down slowly. All his numbers continued to get lower and lower the longer he was on the vent. He was hypothermic, had bradycardia, low blood pressure and his CO2 levels were really low as well. I had my hunch that the vent was causing all of this and not his brain. After 3 weeks there I wanted them to push him more and get him off the vent so that he could bring up all his numbers. That is exactly what they did and sure enough his numbers came back to normal. We were prepared to go on his wish trip with a vent - which we were trained on - but thank goodness that did not have to happen. We were so happy. After 23 days, Ben went home!

Daddy and Ben with his buddy "Elephant"
Ben on his vent
A bigger view of his vent
Ben right after his bath
Mom kissing her sweet boy

2004 Surgery

October brought yet another surgery to Ben's history. (sigh....) Dr. Moen is Ben's orthopedic doctor and when we went for our annual visit in August, she decided that the time had come for Ben to have some release and lengthening done on his muscles because they had become so contracted. We actually tried botox first, but it never really worked for Ben. As you can see above, Ben's legs were placed in removable casts so that we could watch his skin carefully. (he has very sensitive skin) His feet were actually casted from his knees down. Ben spent a total of four days in the PICU where he recovered marginally. He had his usual post-operative respiratory issues but other than that he did fine. They had him weaned down from morphine for the pain to just tylenol. The doctor had us do a few trial hours of getting him out of bed and into his chair to make sure the pain wasn't too bad. He passed with flying colors.

Aunt Suzanne sent you a buddy to comfort you.
Ben in the PICU
Going HOME!!!:)

Trach Change

Every two weeks I used to take Benjamin up to Dartmouth to get his trach changed. Laura Cogswell would usually changes Ben's trach although Dr. Gosselin, Ben's ENT doctor occasionally would do it too. The reason we had it changed up at Dartmouth and not at home is because since he has a cuffed trach it is much more difficult to pull it out and to put it in and usually causes a good amount of bleeding. These changes use to cause Ben to have some major coughing spasms but now they spray lidocaine into his airway before the change to prevent these spasms. These pictures are from a visit in May of 2004 when both Laura and Dr. Gosselin did it together.

Laura preparing the trach
Dr. Gosselin pulling trach out
Laura getting ready to put trach in
All done! Dr. Gosselin securing his trach ties

Second Birthday

Ben turns 2!
He was the life of the party! (can't you tell?)
Funny faces with Kayla
Proud parents

Ben taking the "traditional Hutchins' Bite".

Families Are Forever

Summer 2003

Our first family photo with Benjamin
Mom and Kayla with Ben
Daddy and his boy

Kayla loves her brother

Summer Surgeries 2003

Summer of 2003, Ben had two major surgeries. The first one was performed in June by a pediatric surgeon, Dr. Latchaw. The name of the surgery was a "Fundoplication" or Nissan wrap. This is where they take the top of your stomach and wrap it tightly around your esophagus so that the food in your stomach won't "reflux" or travel back up the esophagus into your mouth. This surgery was done to prevent Ben from aspirating food into his lungs. He stayed 8 days in the PICU at Dartmouth and recovered quite nicely from the surgery. The only drawback was that his swallowing capabilities were changed and so when his secretions would pool in the back of the throat he would start coughing, choking and turning blue. We tried so hard to fix this problem but in the end, the only thing that helped was to have a "Tracheotomy" done.

Dad seeing Ben right after his trach surgery
Sleepin peacefully after surgery
Ben's fundoplication surgery

First Birthday

April 2003 was such a milestone for us. I just kept thinking that if we could make it to his first birthday that everything from there on out would be okay. Well, Steve and I planned this really big party with all our friends and family that have been so monumental in our lives and wouldn't you know that the night before his big day Ben catches RSV. I remember not having such a great feeling the night before because his oxygen levels were slowly dropping and by morning they were around 83%. I packed our bags and headed to the local ER where they then prepared to have us transported to Dartmouth by the DHART team. This was Ben's second go around with RSV and it was worse than the first time. We spent a total of 11 days in the PICU that time and it was eerily similar to exactly a year before when he was born. We spent the same exact days in the ICN there, the 5th through the 15th of April two years in a row.

Ben was only happy in my lap.
Ben's sats were so low they had to use a face mask and nasal cannula to get him the oxygen that he needed.
Ben got lots of neb treatments during his stay.
Poor baby was so sick.
This is mostly how he looked, he was really sick and uncomfortable. I never left his side.

Benjamin's First Year

Kaleb holding Ben at Dartmouth. He had viral pneumonia and was in for 10 days.
Working the binkie with the oxygen mask.
Ben sporting his Nike outfit.
First thumb splints - they were a little big.
This boy loved his baths. They would calm him when he cried.

Another stay at Dartmouth for viral pneumonia. This one lasted 8 days.
"Look Mom, NO HANDS!":)
Attempting a smile...
Mimi made me this hat to keep my head from burning in the sun.

Family Reunion 2002

This is me when I was only 5 months old. I'm not very happy in this picture.
My Uncle Zach and I sharing a moment together.
My very large extended family from my mom's side. Can you see me all the way in the back on the left side?