Saturday, December 11, 2010


We actually got home yesterday in the late afternoon but with the ambulance ride, getting him settled, setting up equipment, getting equipment delivered, oxygen desaturations, 4 people to use a commode, a diarrhea accident and a 2:30 a.m. pain episode...I just didn't have a moment to update.


Let me start with Friday morning. Sam and I both finally got some pretty good sleep until 5:30 a.m. when pulmonary decided to have a consult with me. They said the dreaded words...maybe he should stay one more day! They were still concerned about his sluggishness, breathing shallow and requirement of oxygen. Sam and I were thinking "BYE BYE".

After a few rounds of negotiations we all agreed to send Sam home with oxygen and a pulse ox which would help us monitor his oxygen. The ambulance was set to pick us up at 3:00 p.m.

Physical Therapy came in to show me how to put Sam comfortably in a wheel chair and to
measure for the one we would need at home. It went well until he got bumped getting out of the chair and had a pain episode. I took a few pictures of Sam in his wheelchair. First I asked him to smile, yep that looks natural!

Sam can only be in a wheelchair at a 30% angle and he doesn't want to sit in it very long.

I also took a video of my very sluggish, really kinda out of it big boy.

Our first night home was kinda a nightmare. Sam was still sort of out of it, we had a wheelchair, commode and oxygen delivered. I was setting up equipment, visiting with family and trying to adjust to my new reality for the next 6 to 8 weeks. Sam just didn't want to keep his oxygen on and he had a few pain episodes. We tried to put him on the commode which took 4 people and was back breaking work for zero results. He ended up having an accident due to diarrhea around
11:30. After Jeff, Ben and I got him cleaned up and situated we all went to bed. Sam continued to pull off his oxygen setting off his pulse ox meter and then around 2:30 a.m he had a major pain episode which left him awake and feisty. At about 4:00 a.m. I finally had to wake up Jeff and tell him to take over...I was exhausted and feeling very done with the evening.

But what a difference a day can make. Sam woke up today happy, alert and worked hard on expanding his lungs and keeping his oxygen levels up. I was able to remove his oxygen for most of the day to allow him some movement and I got to see that beautiful smile again. He is now adjusting well and after a visit from the nurse we have figured out some more of the challenges.

I want to thank everyone for their prayers, John Henry for his cards, Deborah for her brownies and card, everyone who sent emails or left comments on this blog, everyone who has begun to send Sam letters for his geography lesson and especially the nurses and doctors at Children's Hospital who took such great care of Sam while he was there. This was a difficult situation that was made so much easier by the many helpful people we came in to contact with from the doctors to the nurses to the residents to the office people. Sam and I felt blessed in so many ways!

Here is Sam in his new set up. He loves the Christmas tree and pellet burner and Buddy is so
happy to have Sam home again.

Yep, his smile and personality is back. It's good to be home.

Good night everyone, looking forward to watching the snow fall tomorrow with my little warrior!


  1. So glad you are HOME!!! Here's praying and hoping for an uneventful night full of rest for EVERYONE!!

  2. I am SOOOOO glad that you guys are home, safe and sound. I know that Sam will recover a lot easier while being home n in his comfort zone. I see buddy is there protecting Sammy! I hope to come visit soon! We are getting slammed with snow now. Glad to see his real smile. Love you guys.

  3. I'm glad you are back home. I pray all goes well and Sam recovers nicely.