The Great CMH Escape...

For a while there, I didn't think they were going to let us out of the joint and keep our baby for ourselves....but they did! But they forgot to send home one of those nurses who kept watch on him 24/7. And fed him. And changed diapers. And gave meds.

When they first even mentioned the word 'discharge' I sent John a text about it and made him swear to keep it on the down low. I didn't want to jinx it. I had this horrible vision in my mind that we would jump through all the discharge hoops and get all excited and then they would find something else to do to the wee one....and you know what? THEY DID! They day we were all set to leave, they decided last minute to do another blood transfusion. Kind of like one for the road. The very nice and polite doctor smartly kept his distance from me when he told us they wanted Bruce to stay one. more. night. for observation. The man was small enough I could have taken him in one tackle...and he knew it. But, everything worked out just fine and the extra day was nice to have to get everything in order. I was a little overwhelmed, but in a good way. One week ago last Thursday, when the nurse FINALLY walked us to our car and made sure Bruce was strapped in tightly in his seat, we closed the doors and I hollered to John, "PUNCH IT, Margaret!!" Of course, he did not punch it and drove us home in a non-racecar/blue hair/road-rage driver manner while I sat in the backseat with my eyes forward in case a random nurse or doctor came running from the elevators looking to stop us. Bruce slept.

The first few days out of the joint we stayed in Liberty at my mom's house just in case we needed to be close. Within 10 minutes of being there, the doctors called. Twice. Luckily, just for some minor medication changes..whew! It was going to take a search team to track me and my baby down...I can pack a diaper bag well enough to hide out in the woods for as long as it takes to throw off the hounds. The first few days it was fun being at home with the kids to help out...wish I could have packed one of them in my diaper bag to bring to the ranch!

We've had a couple doctor appointments since and with exception of a few minor issues, Bruce has checked out just fine. The cardiologist was impressed with his tone and function given his heart condition and we return in one month. Our next infusion is Monday and we look forward to being outpatients then! Within 24 hours of being back in Hatfield, I purchased a giant dry erase calendar for the wall and it's filled up pretty quickly with upcoming appointments...which is just fine by me! As long at the end of the day he's in his crib in our home, I'll drive daily to Timbukto for doc visits! Which is pretty much the same distance from Hatfield to KC :) The wee one has a great team of doctors watching out for him and we're very lucky to have them on our side.

It's fantastic to be home and getting the house back in order...being gone 6 weeks, you knew there had to be a few issues but the ac is blowing cold air again, the Dish guy comes back next week to finish fixing the satellite and a new refrigerator has been ordered and will be delivered the end of the week...compared to what we've been through lately, un-thawed meat in the freezer dripping down into the wires of the fridge was nothing!

Most importantly, Bruce is doing as great as he can be. Fortunately, he loves really stinky formula and has been eating like a champ...which is beyond great! I can't complain about the middle of the night feedings because I love it when he eats like a horse and he's starting to get those cute little wrist fat rolls! Sadly though, his hairline is starting to fill in. I am really going to miss the old man receding hairdo he has...

John is getting caught up at the ranch and VERY happy to have us back in the neighborhood to cut down on his trips up and down 1-35. Out of the whole deal though, he's a much better city driver and I feel comfortable riding with him downtown KC. For the first time ever. All I need to work on now is getting him to quit talking to the other drivers in their cars...they cannot hear you.

It took John four and a half coolers to get all of my milk out of the fridge...he was a trooper hauling those through the hospital to the car because you know people weren't thinking he had beer in there. Or maybe they were. Glad no one stopped him to look inside!! ( I know, I know...again too much information...)

We'll miss our friends and staff at CMH but it's not like we'll never see them again! We will. Often. Before we were discharged, Bruce sent his buddy next door, Lucas - who has been in much longer than us, a giant cow balloon and one that said, "Milk it for all it's worth." If anyone knows how to milk hospitals, it would be Bruce and Lucas! They were the heart breakers of E-Pod.

We have a long road ahead of us and a lot to figure out on how to adjust to this really different lifestyle, but John and I have great support and through the whole ordeal, we didn't kill each other. Er, he didn't kill me...So we still have each other! John is amazing and I'm very blessed to have him! And, of course, a very handsome little man who is changing and growing daily!

No doubt life will be interesting in the coming months and years and I'll keep you all posted!!! Thanks again for thoughts and prayers and hope life is well with all of you!!

John, Sarah & Bruce