Fall 2006 PICU Stays

In August of 2006 Ben was unexpectedly sick. This was an unusual time of year for him to become ill. On August 14 I noticed that Ben seemed pretty warm to the touch and so when I took his temperature it was 102. I listened to his lungs at that point and knew right away that he had a pneumonia. We got to the local ER an hour later and his WBC was 25.1 and his chest x-ray was the worst I had ever seen it. They took him by ambulance to DHMC where he was admitted into the PICU. That stay he grew Pseudomonas and beta-hemolytic group G strep. They put him on the vent and treated him with IV antibiotics. About 5 days into his stay he spiked a 104 fever - not really sure why because after it broke it never came back. He ended up staying 16 days. We got home the day before school started for my kids. I didn't even have all their school supplies that they needed. Less than a month later Ben was sick again. This time he grew out Haemophilus influenza and beta-hemolytic group G strep again. He was treated with IV antibiotics and placed on the vent until he was well enough to go home - 8 days later. Less than a week later we were back. Talk about overwhelming. Ben was sick with Pseudomonas, stenotrophomonas and MRSA. He needed the ventilator again and IV antibiotics. This time he reacted to the ceftazidime and so they had to resort to some odd-ball antibiotic to cover his MRSA and Strep. It was a very difficult stay because we had been in for the whole month. I missed most of the first couple of months of my kids school which was really hard for Kayla because she had started the middle school. During this stay we had Ben go through a couple of round of radiation to help control some of his secretions. Unfortuanately, we still haven't really seen an improvement.

Ben just after his bath...
So sick...:(
My cute boy...

Hutchins' Family Reunion 2006

In July of 2006, all of the Hutchins' gathered together for a monstrous family reunion - one that hadn't been done since summer of 2001. We planned this event for two years and when all was said and done I think it went off almost perfectly. We rented a HUGE house in Vermont - over 6,000 feet of living space for all 50 of us. My parents (Becky's), 8 of their children, spouses and 32 grandchildren were present. We spent 7 days in this house and because it was so big we never seemed to feel crowded or bored. It was great. There was plenty enough to do - swimming, pool, ping-pong, tennis, basketball, tv, indoor golf theater, games, biking, walking, etc. It was so nice to just be together and enjoy one anothers company. Some of our favorite memories were the morning announcements, family skit night, fruit spaghetti made by Aunt Kelly, Grampy's daily scavenger hunt, Mimi's gift bag and the pool tournament that Roger Jr. almost won - Uncle Steve reigns as champion. Here are some of the pictures from the week.
Ben hanging with his newest Cousin Gabe "The Babe" Hutchins.

All of the cousins - minus 2 who were being stubborn that day.
Hannah, Moriah and Ben pose for a picture.
Cousin PINATA!
Gabe and Ben - two cool dudes.
Morning announcements by the "Blues Brothers".
The indoor pool that we swam everyday in.
Steve and Stevie showing some SKILLS!
I LOVE family reunions.
Things got a little messy here and there - Ben, Jenny and Abbey enjoying the chocolate fountain that MiMi brought!!!

4th Birthday

Another year, another birthday. We spent most of the day Friday at the ER (April 1st) because there were no beds at Dartmouth. Because Ben was stable the plan was to give him IV fluids and antibiotics, send him home and then return the next day for another dose and see where the bed situation was at Dartmouth. I was okay with that and hopeful that just maybe Ben would make his party after all. It took another 4 hours or so to get the IV in (5 attempts) and then to run fluid and the antibiotics. Meanwhile Ben was deteriorating. The ER doc became really concerned and started making calls to other hospitals. Boston Children's was full, Maine Medical was also full. She tried Mass General and they had a PICU bed. The helicopter was sent and Ben and I were flown to Boston. It was a crazy situation. I was really scared to go to a place that didn't know him. The flight team was extra nice and allowed me to go in the helicopter with Ben so that I didn't have to find my way in the city. We arrived at 3am and settled into a crowded, dirty, curtain surrounded bed. The staff was exceptional - the PICU itself was more to be desired. After all the blood work, x-rays, etc. it was determined that Ben had pseudomonas pneumonia (again), strep and MRSA. Because of that diagnosis, he was moved into a confinement room that actually had walls. I was much happier to be in a more private area. Poor Ben got worse as the days went by. He was placed on a vent with the highest settings he's ever needed. There were a few scary moments when he would be suctioned and it would cause him to brady and stop breathing. They aren't sure why it was happening but thankfully it resolved as he started to get better. It seemed like his IV's blew every day and because he needed IV meds, they had to keep replacing them. At one point they tried to put in a longer lasting PIC line but couldn't get it in. At this point he was on 3 major IV antibiotics which called for daily blood level draws. By the 8th day the PICU at Dartmouth finally had a bed and so he was able to be transferred back. He finished 9 more days there before he was discharged home.

Aunt Jenny brought you a birthday pie, hat and balloon... Mass General PICU - we were CROWDED in this room...
Going back to our favorite hospital - DHMC - to the PICU...
Looking better already...

See all Ben's cards in the background? He is definitely LOVED!

**********

For Ben's 4th birthday, Steve and I wanted to do something really special. We tried to throw him a big party when he turned 1 but he ended up in the hospital instead, so we wanted to try again. Because of Ben's recent wish trip we decided that we did not want any presents. Instead we wanted to purchase a stone at "Give Kids The World" that would be placed in the village. It is a great cause and so we wanted to contribute in any way that we could. We invited over 100 of Ben's closest friends! The day before the big party guess who decides to get sick? You guessed it! Benjamin came down with a high fever, lot's of coughing and green secretions. I had to take him to the local ER to be evaluated. Meanwhile, the party continued on and there were over 100 people that showed. Too bad the guest of honor bagged out AGAIN! We raised almost $1,000 and gave it all to "Give Kids The World". Thank you to everyone who donated, helped out and attended the party! Couldn't have done it without you!!!

Ben's table
Lots of tables ready for people to come...
the guests arrive...
lots and lots of people...

Happy Birthday my cute boy!

Christmas 2005

Ben with Santa at the Police Christmas Party. I'm pretty sure Ben was a good boy all year long!:)

Ambulance Flight

Our Flight nurses and respiratory therapist. They were fantastic.

July 2004 we took a trip down to Florida to visit Ben's grandparents who were a mission. During that stay, Ben got really sick and ended up in the PICU of St. Joseph's Hospital in Tampa. We were there 11 days before leaving to go back to NH. Because Ben was still on the vent, he had to be flown back in an ambulance. That was an experience I'll never forget. I was able to travel with him. It was a really small jet. You couldn't even sit up straight. The flight was 3 hours long and over $12,000. Eventually we made it back to the PICU at DHMC where Ben finished out the course of his illness.

Being loaded onto the jet

Third Birthday

Ben is HAPPY to be THREE!

The Billin Family threw an awesome party for Ben
Brothers...Kaleb thrilled to celebrate his special day

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...

**********

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