Back in Surgery

The last couple days have been crazy! Sorry for the lack of updates yesterday, but I was able to bust out of the hospital for the day to go to the new house and start the decorating process as everything is starting to come together. I left here around 9:30am and I got back at 10:30pm while Dan came down to hang out with lil man for some much needed Male bonding. When I got back I was exhausted and just wanted to crash. It was a long, stressful but productive day. I was totally overwhelmed when I entered the house, WOW. I had tears in my eyes thinking Danny came very close to not seeing HIS home. The reality of all that has happened to my lil man in the last couple months hit me like a brick. Then reality hit of how much stuff I had to do in such little time....I went into GO mode! Don't forget to stop by the house during the VHBA Parade of Homes to check out our home, by Mike VanHoof Custom Family Homes.
Danny is finally in surgery.....only 5.5 hours late, but "Git-R- Done". Right around 1 this afternoon of course lil man got VERY irritated and spiked a fever. DANNY!!!! So I gave him a cool wipe down, the nurse gave him some additional pain meds, and we hoped for the best. By the time the OR was ready for him his temp did come down alil but he was still high (rectally) so we pulled the rectal probe and he was good to go, shhhhhh. Last night and this morning he started to wretch again on only 5-10cc of meds in his tummy so they ran a PH level of his tummy contents and IF the prevacid was working his level should have been about 6, Danny's was 2 so that isn't good at all. Which I can now chalk up another reason for his discomfort, sigh. I can only hope after GI does their thing we get some much needed answers gut wise for Danny. First off tonight Urology is going to pull the stent and blast the stone on the right side. Finally taking care of the kidney issues so we don't have to worry about that. Then GI will come in and they are planning on doing on Endoscopy (scope going from mouth down into tummy) and a Colonoscopy (scope going from butt through intestines) with doing some biopsies in hopes to find answers to Danny's wretching n diarrhea issues. I believe tomorrow they are planning on taking him down to IR and having them put in a G-J feeding tube before we start to attempt the feeding again. Surgery should take about 2.5-3 hours so I should see him back in the room in about an hour. Danny was just miserable today so I was glad they were able to still get him into OR tonight as I'm not sure what we were going to do with him over night he was so uncomfortable. I will post once he gets back to the room and settled in!

Last night was pretty decent for Danny, woohoo. He slept till 4:30am and then after a dose of benadryl he fell asleep till 6:30am. From what I gather the PCA/narcotic can make some of the kiddo's feeling itchy so the nurses thought not only for the itchy feeling but maybe he'll sleep longer with the benadryl. Which he did, Yay! Danny has been in a pretty good mood most of the day today too. I even got smirk out of him earlier...it's so nice to see him not in constant pain or sleeping all the time. He is sitting up and watching tv as I type. The nurse and I gave him a bath this morning and changed his linens so he is all clean, SNIFFFFFFF :)
The Urologist came in earlier and unfortunately the scheduler didn't put Danny on the surgery schedule as he had requested yet. So he thought it would be a couple of weeks out yet, WHAT!?! I guess my eyes must have popped out of me head at that moment. I told him we pretty much are just sitting here in "holding" waiting for this surgery....and I'm not going to wait here 2 more week to get it done. I want to go home and be with my family it's been long enough being apart ...I miss them SO MUCH. So if that truly is the case 2weeks out then I think we'll go home, keep his pain under control there, and then come back for the surgery. I NEED to get out of here, before I totally lose my mind. LOL They were going to get back to me today or tomorrow with the date for the stone surgery. UGH
Today Danny did a trial being on a Passy Mur (speaking valve). Can you say ROCK STAR!! He had no troubles with it at all, WooHoo. So we are going to continue working up the time fram using the Passy Mur in hopes he can be on it longer when awake so he can learn to use his voice again. SMILE :)....I'm one HAPPY Momma.
Tomorrow I have another meeting with a nurse that is interested in being more full time and possibly taking over the care coordination for my lil man. I talked with her on the phone today and I have high hopes with her. We'll see how tomorrow's meeting goes.
Avrianna is back up north in Tomahawk getting spoiled rotten by Papa n Claudia. She always has a blast up there and this time they signed her up for VBS at the local church this week so she should enjoy hanging out with more kids. Dan is trying to maintain the old house, new house, and the laundry solo. I'm surprised he hasn't lost his mind as of yet too....I'm sure we are both VERY CLOSE. I so can't wait to get Danny back on track, move in the new house, and getting the nursing in play so we can start to do things as a family again. It's very rough on all of us and we ALL need some much needed fun time TOGETHER!
Figured I would show off our Laundry....The Clothes Hamper ~ IS NOW OPEN!!
We are located on Green Bay Rd in Neenah in the Express building right in front of Pick n Save across the street from the old BIG Lots, and next door to HardeesWe have a variety of machines that can meet ALL of you needs!

It's handicap accessible. There is parking in both the front and rear of the building.

COME CHECK US OUT!!!!

***update Danny surgery is scheduled for Wednesday afternoon. Yahoo!!! **** I can only hope that the recovery is just a couple days and we are out of here by the weekend. Now wouldn't that be sweet!