Day 28: Surgery Date, New Friends, Hard Work

Well today John has an official surgery date: October 5th. It's still called a tentative date but that is only because it requires that John reach that date without getting sick. So the plan is that John will go NPO, nothing by mouth, at midnight on the 4th, be admitted for surgery on the morning of the 5th, having surgery, go to the PICU, pediatric ICU for 24 hours for observation, mostly because he is just so darn little, then be in the hospital for a week on just TPN and lipids to give his bowel some healing time, have an uppper GI with small bowel follow through test to see how much small intestine is there and make sure that there are no leaks, then they will begin to feed him, at first just formula through his G-tube and work him up to full feeds. He will probably need to remain in the hospital for a couple weeks working on this before he is ready to go outpatient again and then we will be back in the Lied center hanging out until he can come completely off TPN and lipids and have his central line removed. Anything, even just a minor cold will delay, change, etc., but we know it's all in God's hands and so just say our prayers and keep going through our days.

Also at clinic today we found out that John has gained 200grams, that's about 7 ounces, doesn't sound like much but believe me I can see every ounce of it. He's actually starting to look somewhat chubby to me, but that's because when he came he here wasn't much more than just skin, bones, smile and attitude.

The last couple days have been a whirlwind of sorts and we are looking forward to tomorrow with no appointments and time to just hmmmmmmm, well probably time just to run the hospital hallways because that is what John likes to do the best lately, although we are going to get some book reading, block building and such done. It will be a great time to get another project out of the box that Julie and her kids sent to us, John loved the ants and I know that he will love the next one too.

Monday was full of appointments and new friends. We started out the morning in PT where John is walking even better in the parallel bars, forwards and sideways and then in OT he was sorting colors and stacking blocks more readily and even managed to get a decent arm workout when he was put on a peanut ball to work a puzzle. I don't know who invented a peanut ball but I think we will be looking for one of these, it's the best arm workout I've seen the kid get yet. Ummm, think of big exercise ball, kinda squeezed in the middle to make it look like a peanut.

On the way out from PT/OT I noticed that the lower pane of glass was broken in the door, ugh, the same door that John rammed on the way in. So since then we have been practicing being nicer to doors and such, he should have had his little monster shirt on that day!

We finished those appointments in just enough time to get to John's hemotology appointment. That doctor thinks that John probably has more of a platelet issue than a clotting factor issue. He sent us for lots of labs and will be monitoring the results and will be on-hand for John's surgery to make sure that he is both prepared for it, and if a bleeding issue arises during surgery that he is there to help.

In the treatment center John had a great time making the bed go up and down and smiling at all the nurses and patients that went by. This is a treatment center that is used by lots of cancer patients, where they come to get their chemo-therapy and John loves to smile, wave and flirt with all the patients coming and going and brings smiles to everyone. Mark and I have dubbed him the Spreader-of-Joy, and he lives up to it every day.

Monday evening was quite a treat for us, and a chance to meet new friends. Charity and her four children came to pick us up and take us to her house for dinner and some time just to visit and be in a real house. We couldn't have asked for a better present, it was so nice to get out of Omaha, to be in a house with rooms and chairs and books and toys and life, and to meet Charity and her delightful family. The kids showed John their stuffed animals, talked to him, even looked up the sign for Buffalo and taught it to him, and then after supper they stacked blocks for him to knock down, he was in heaven. It was so nice to talk, laugh and visit with Charity and her husband and kids, and we are looking forward to getting to visit with them again.

Today our only appointment was clinic this morning and then to go and get a lab pulled again, so another trip through the treatment center, John has a teeny tiny bit of redness around his central line and they are very proactive about making sure that it is not infected. After that he was ready to run, and run he did, I think we've been through the hospital half a dozen times and then he finally decided it was time for a nap.

On the way back to the room we met another family with a beautiful little 2yo girl that is here for a check-up and then will be coming back in a couple weeks for feeding therapy. Her mom and grandma were telling me about her, she started with only 11cm of small bowel, that's less that half of what John had left, and her doctors told her mom that they would just give her morphine so that she could die peacefully. Finally a young doc told mom that he had seen the STEP procedure in medical school and it couldn't hurt to try it. He did it and 6 weeks later the little girl was brought here. They lived here for 19months and had 2 more STEP procedures done by the same surgeon that is going to be doing John's and the little girl is now growing, developing and doing beautifully on g-tube feeds with no TPN. It's amazing to meet these kids, it's wonderful to see them succeed, and it's great to see their families that love and care for them and continue to hope and go and do.

When he woke up from his nap and was ready to go down to supper Tiger had to go with us again. It was so cute, Tiger was obviously the poison-taster tonight as he had to taste every bite of John's cereal and then the poor thing John fed him salt for a good while. I was thankful that John wasn't feeding himself salt, but poor Tiger. Finally John took tigers little hands and told me that he was all-done and away we went.

We tried to go to the social gathering here in the Lied center tonight but nothing doing, that is located way too close to the doors that John knows he can open and run outside and so we waved as went went past. Tiger was along for the ride again, and John had a great time running through the hospital until it was time to come back to his room, then he was slow, drug his feet, and made that 'i'm-really-going-to-cry-in-a-minute' face, please child, I told him he could either walk or be pulled back and after being pulled a good 10 feet he decided that all-in-all he would rather walk.

Silly boy is in bed, he had to have some ice, after working on his PT homework for a while, John is getting close to being able to sit himself up from a laying down position, and then was ready for a few books and off to bed. We'll see what tomorrow brings.

Thanks again for all you're prayers, friendship and support, we are excited about John's surgery coming up and worried at the same time but mostly thankful to know that so many people care about and love this little guy!