We're HOME!!!!

Yes... we are HOME!!! WHOO HOO! Say it with me... "there's no place like home, there's no place like home!"

The last time I posted was Thursday afternoon, so let me get you up to speed. Thursday afternoon and evening were pretty uneventful. The most exciting thing was Jonathan pulling his cath out when I left the room to go get a soda from the vending machine! The nurse met me in the hall and informed me the Jon has yanked on the line so hard that he made his little thing bleed, so she was going to have to take it out the rest of the way. GREAT!!! So, for those of you that are keeping score... he pulled all of his heart monitor leads off, pulse/ox off, 2 IV's out, catheter out, a small patch of hair on his head is gone, and currently he is working on the incision!
So after the nurse and I cleaned up the mess he made with the removal of the catheter Jon-Jon and I settled in to sleep. Surprisingly we got a great night's sleep. Nurses woke us up every 2 hours taking his vitals, but we still managed to sleep well.
Friday morning we woke up at 6am. Jon ate a big breakfast. The Dr came by and gave us the all clear to get Jon up out of the bed.... he could lay in a wagon and go see the fish! As long as he was able to do this with minimal discomfort, and pass a few other tests, he would be allowed to go home on Sat! So I lined one of the wagons with blankets and a couple of pillows and the nurse and I carefully lifted him. She scooped him up by legs and I took care of his arms/head. I felt like I was going to break him when we moved him! He screams in pain whenever someone touches him, much less picks him up! But he was so determined to go see those fish! Once he was in the wagon he said it was very comfortable, so we were off to see the fish. I have to say that getting out of that room did him a world of good. He was smiling and wave to everyone. When we made it down to the lobby where the fish are everyone could hear Jonathan screaming with joy! He was singing and having a blast! Nobody would ever have guessed that this child had just had major surgery! :) I took him into the gift shop to make a couple of much needed purchases. I needed washing powders and Jon needed a new toy. Jon was busy singing his heart out (I believe he was singing "Sweet Home Alabama") and I had my back turned looking for the washing powders when I heard a man talking to Jon. The well dressed man was bent down speaking to Jon... I didn't think too much of it - Jon talks to everyone. Then the man said "Mom, are we doing a good job for Jon-Jon?" And I said "Yes, everything has been wonderful" Then he introduced himself as Chef something, something, at the hospital. Of course Jonathan was talking over the man, so I only caught half of what he was saying, but I was impressed that he took the time to talk to Jon, shake his hand, and be genuinely concerned about the care he was receiving.
So our next stop on our wagon adventure was the parent laundry mat. Jonathan watched me do laundry... that's not much different that a normal day at our house. :) Then we walked back to his room. The nurse came in and informed me that it was time to remove the bandage! Keep in mind that the incision had been completely covered, so I had never seen the actual incision. When she pulled it off and I got my first look at it... I went down! I didn't completely pass out but it made me sick and I had to lay down for a min. Then the nurse gave me a reality check - I was the only one to take care of this when we get home so she needed me on my feet! I was going to be the one to clean it and apply the ointment... NOW! "Yes nurse hatchet, right away nurse hatchet!" The first time was awful, but I'm getting better! And just for the record... Blood and gore does not bother me at all... I had wanted to be a Dr so those thing are fine with me - it's just when it's your child and you see him/her in pain... that is unbearable! And just for the record, nurse hatchet doesn't have children!.... I asked! ;) The incision is about 5 - 6 inches long. It goes from his shoulder blades down to his tail bone. They closed the incision with staples, so I am now thinking that is why he kept saying there is a needle in his back!!!!
We were just getting him settled back into his bed when my sister-in-law Sheila, my niece Jennifer (Jenn is only 6 years younger than me, so we're more like sisters) and her 2 kids, Boston and Brystal came in for a visit. Boston was so cute with Jonathan. He asked Jon what was wrong and Jon said "I got surgery on my back." Jonathan was in a lot of pain because this was the first day he had been allowed to move, so when he was crying Boston would get up in the chair next to the bed and comfort Jonathan by holding his hand. Too sweet!
About an hour later, my Brother Marvin and his wife Ashio came to visit. Ashio is from Taiwan. She knows that I love her chicken fried rice, so she had brought me a nice big plate of it! YUMMY! Jonathan was begging to take Boston down to the lobby to see "his" fish so Marvin, Ashio, me, and Boston took Jon for another wagon ride. Boston tried to give Jon the ride of his life but luckily I stopped it before Jon was splattered on the floor! LOL! They had a great time, but we had to get back to the room before nurse hatchet got after us!
Then my MIL came in with Jack and Alexis. Jonathan was so excited to see Jack and Alexis I thought he was going to jump out of his skin!!! At one point there were 4 kids in the hospital bed and I was a nervous wreck... afraid that someone was going to touch and/or hurt his back, but he loved every minute of it. He was dying to wrestle around with the other kids. Jack and Alexis just couldn't get enough of him... kissing on him, holding his hand, loving on him ~ if only they were like this towards each other all the time!!!! :) We went on another walk with Jack and Alexis. Jonathan had a great time showing Jack and Alexis his favorite things that he had discovered on our walks earlier that day.
When it was time for all visitors to leave Jack, Alexis, and Jon were all crying/whining! Jack and Alexis wanted to stay at the hospital, but I explained that the hospital doesn't allow that. And if everything went well we would be home tomorrow.
Once the room was quite and we started settling down for the night the pain hit Jon like a freight train! Thank goodness my best girlfriend, Liz came to sit with me and Jon because it was going to be a rough evening. I called the nurse to get the pain meds... thinking that would be enough, but NO! He was constipated, which added to the pain, so she gave him a suppository. That did NOT do any good. A couple of hours later we gave him another dose of pain meds, but still no relief! Liz was exhausted (she had a full day with her own kids) so she left. The nurse and I tried everything we could think of to help relief him. He was burning up, but not running a fever... strange. I ended up taking his gown off, which left him naked (he can not wear underwear due to the location of the incision). I just covered him with a thin sheet. The nurse brought in a fan to cool him off. We then gave him a dose of Motrin and some benadryl for the itching. He finally drifted off to sleep around 3am, but he continued to scream out in pain ALL night! We were back up at 6am this morning. The Dr came in and said he would discharge us after the physical therapist came by and after Jon got an enema (because Jon has not been able to poop). I thought those 2 things are no big deal, we'll be out of here before we know it. So I proceeded to pack while we waited for PT. When the therapist walked in she said "Ok, before you can leave us you need to do 2 things for me - you need to sit on the side of the bed unassisted and walk a little in your walker." I laughed because I thought she was joking!... Well, She wasn't!!! Good Grief, the poor kid went from not being able to move at all, to a wagon, to now sitting and walking? This is NOT at all what the Dr that preformed the surgery had said to me. I asked her to check the orders again because someone got their wires crossed! This child can not walk! He had part of his spine removed just a few days ago!!!! But she insisted that we proceed. She first showed me how to help him log roll to the side of the bed, sit and then stand. Bless his heart, I can not even begin to imagine how much pain he was in, but he did it. He sat there on the side of the bed then she had his stand up and get into his walker. I started crying because I could not believe how much taller he is now that he can stand straight up! We had to adjust the height of walker to fit his new straight legs - that is just amazing to me! Then he took a few steps while he was in the walker ~ he screamed in pain with each step, but he did it! I was crying like a baby. God is so good! So he passed all of the "tests" that the PT had, she gave us the all clear. Then the nurse came in with the dreaded enema! I will save everyone the gory details, but I will tell you that as of 11pm on Sat night... he still has NOT pooped! Lovely!

At Children's hospital you walk yourself out to the car... nobody helps. Which I thought was kinda strange given the fact that I was alone with my child and I had a ton of stuff to carry... so I had to make 2 trips down to the car with wagons full of stuff, then on my 3rd trip down I had my little man in the wagon. I rolled baby blankets into a U shape and placed it in the car seat to help cushion/protect his spine. Then I put him in the car seat ever so gently. We made the long drive home just fine. He watched a movie and only complained when we hit bumps in the road. Jackson and Alexis were waiting here at the house with my mother- in-law, my mom and Josh. Later, my sister and her husband came over and then Josh's Dad and Step mom came over too.

Jonathan and I were exhausted so we both took an afternoon nap. All is well as long as we keep his pain under control!

Thanks again to everyone for all the prayers, cards, calls, visits, friendship, love, and little gifts. It means so much to Jonathan and to me! We love each and everyone one of you.