Jake's Hand Surgery 11/30/07

Well today was the big day and it started off with us getting Jake his clear liquid that he was allowed at 5am before his surgery. We arrived at 6:30 to the pediatric waiting room for his 8:30 surgery. Jake was being great considering he hadn't eaten a real meal since 12. Time kept passing and soon it was 9 and Jake was getting a little hungry and testy. Finally we were called up to the OR and found out there had been a delay. We met with the Dr. and discussed Jake's surgery and at 10 I took Jake into the OR. I held him while they put the mask over him and it was tough to watch him struggle and start to cry but :30 sec later he was sleeping and I left him in the good hands of all of the Dr.'s. The waiting game began and it was an extrememly long day as not only were we concerned about Jake but you see and hear others all who are there because their children are sick and having surgery. It's a tough place to be. Earlier they had indicated the surgery would take 4.5 hours but by 3 it was appearing to take longer. Around 4 I believe they finished but we didn't meet with Dr. Upton till after 5. Then we were able to discuss Jake and the surgery. He came through with flying colors and actually the surgery got more accomplished than originally thought. If you look at your hand, here is what they were able to do. Jake now has his thumb the #2 finger and the pinky all separate with just the 3 and 4 fingers connected. They did extensive work on all of his hand webbing for greater function and increasing the span between thumb and first finger so he can grip larger items. The next surgery will have less to do as the majority was done now. Dr. Upton really had a lot of good things to say about the work they were able to do which included the finger separation, skin grafts, web work and yielded over 500 stitches. That's a lot for a little guy.

We tried picking camoflage for Jake's cast color but they must have run out as when we saw him he had royal blue. He has giant casts from just below his shoulder covering his whole hand. This is to prevent slippage as it is hard to keep the cast in place due to various widths of childrens hands, arms and shoulders.

There were some minor delays in getting his room due to a few emergencies but finally we were able to see him and bring him to his room. Jake's face is very swollen and he is moaning slightly and we were told that any discomfort would be caused from the skin taken from his lower abdomen used in the skin grafts. I just left there at 10pm as Sam wants to spend the night and I will relieve her early in the am as we are taking shifts. Jake was very tired and didn't feel like eating much yet but he is doing great.

We are thrilled about all the Dr. had to say about his hands and the surgery and now it will be tough as we watch our little boy in discomfort as he tries to heal.

We will update you soon but its been a long day so look for more on his condition tomorrow.
Love,
L & S

Boston Day Two Pre-Op

Today was Jake's pre-op day preparing for his big surgery tomorrow. We met Stacey for lunch and then off to the Children's hospital. Jake met with a few different people taking his various vitals and then informing us of the anesthesia plans. While in the lobby, the Wizard of Oz was playing for all of the kids in the waiting area which was nice as Toto is the same breed as our dog Reggie at home. One interesting observation..on a wall in the hallway they have drawings from children right before their surgeries. Underneath were explanations of what various things meant and the hospital uses these to assess the children's feelings before they have surgery. Interesting items what it means to have longer arms or no arms or using color red or a home which represents safety or a balloon which represents an escape. I found this to be really interesting as I read all of the assessments and what that revealed about the child's feelings.
After the surgery we walked around on Newbury St. which has a lot of different stores and the trees are lit up for the holidays. We finished off the long day with dinner and now we are back home. Tomorrow we have to report at 7am for his 8:30 surgery. They say it should take about 6 hours and then Jake will be in an ICU room as a precaution. The surgery will separate his thumb completely and then the rest of his hand will be split in two two finger configurations leaving his hand with two larger fingers and a thumb. The second surgery will release those twos into four fingers and a thumb. We are a nervous understandably and are in for a long night as Jake can't eat after 12 and can only have some clear liquids afterwards. This will be tough for our boy who will normally want to eat on that schedule around 5 so we'll be dealing with a cranky boy from 5-8:30. Think good thoughts as tomorrow will be a very long and scary day for us but this is a first step for Jake in helping him gain use of his hands.

Boston Day One

Well we arrived in one piece and lil Jake was a dream on the plane even giving mom and dad some much needed snooze time. I had some fears of being that parent who can't quiet their screaming kid and having the plane hate us but Jake came through big time. Its tough being without our Luke but it would have been too hard to have both here and be at the hospital. Special thanks to my mom and Kathleen for helping Rosa with Luke's care in our absence. We are staying at Sam's cousin's house in Brookline not far from the hospital. After a dinner on the town with Jake we drove around taking in some of the sights like The Charles river, Boston Common, Beacon Hill and Newbury St. We passed by the actual Cheers bar and I think Jake let out a snore of approval while he was sleeping. Tomorrow we have his pre-op appt at the hospital with the Dr. and my sister Stacey arrives to give us the much needed love and support. My dad comes later tomorrow evening. Good to be surrounded by family in a strange city with so much on our minds.
Will update soon.
Love,
Lance and Sam

Off to Boston

We leave for Boston tomorrow, Wed 11.28. Jake is 6 months today. We are nervous for everything ahead and feel a little uncertain but I am sure that is to be expected. We are also very sad to leave Luke at home but at least he is in the very capable hands of Rosa, my mom, and Kathleen. Jake hasn't been sleeping at all this week and we've been up every hour so we are a little worn down going into the surgery, something seems to be bothering him and the only place he likes sleeping is his car seat. We have a pre-op appt in Boston on Thursday so I am sure we will find out more of what's to come. The surgery is scheduled for 8:30am on Friday.
We will update the blog when we can. Let's all put the power of positive thinking to work so think good thoughts for Jake.

-L&S

Jake Hand Surgery Update

Great News to report finally. After many tense hours of worrying and frustration and even rescheduling we have a surgery on the books. Jake will have his first hand surgery on November 30th in Boston. We are thrilled that this can happen as his development with his hands won't be delayed as it would... had he had to wait till after his head surgery. We are looking at moving the previously scheduled head surgery on Jan 23 back to Feb. 1 and the order of his first year surgeries will be hands in Nov, head in Feb, hands prob in april-may.

We will post more once the surgery process is underway so you can keep up to date with his developments.

Love,
Sam and Lance