HOME FROM THE HOSPITAL/THANK YOU LORD!!!

My silly boy trying to make the best of it!

Well our stay at the hospital SUCKED!!! Not that I was expecting it to be great, he we go I am going to rant away!

Monday surgery day was a good day only because the surgery was fast and there were no problems, outside of us not starting until 2:30pm instead of 1:30, no biggy they had a kids play area so we hung out there.

After recovery we go to our room, where we had a roommate no problem, until around 7ish when I over heard the mom talking on her phone and telling how her son had MERSA, I freaked, here we are just after surgery with an open wound subjected to a potentially fatal STAPH infection. I immediately after phoning my husband went out to the nurses station where I than began to demand a new room, and how could you room us with a child who has an contiguous infection, yes it is only through contact but HELLO! we have the same nurse. Well they explained to me that there were no rooms available at this time and that the nurse uses all the proper precautions. What ever! I then told them to put us in the hall way of course this was not possible. This child should be in a private room, which apparently they are short on and is saved for TB and children with head trauma for the quietness they require. SO! long story longer, James did not get transferred until 1:30pm the next day, and I never let the nurses open his dressing following surgery, they wanted to but I held my ground and refused until we got in a new room. I mean come on you are already at risk just walking through the door of a hospital for disease and infections, but to willing subject a child to it knowing it is there is wrong and they have not heard the last words from me. Lots of other things went on in that room, but I will leave it at the worst, I think I slept an hour at most.

Tuesday we hooked James up to his first feed although he had thrown up twice prior it was just green bile post anesthesia, but then later he did throw up formula. So off to get an X-ray to check tube placement. Everything was in place so back to the room and onto a new formula. But the old orders read 20mls/hr then to increase by 10 every 4 hours until a max of 50mls, that was before the X-ray. Then the orders changed to 20mls/continuous, after the x-ray in fear James could not tolerate such an increase this early. Well the night nurse read the old orders so at 2:30am or so I can't remember, James threw up not alot but our goal to get discharged was to tolerate feeds. Well that's when the nurse discovered she had read the old orders. GREAT!!!! So after that was settled James did well. He was still not a loud anything by mouth(NPO) so we thought.

Wednesday was a fun day with all the Halloween stuff going on at the hospital, later that night they were serving pizza and showing a movie, so we joined the festivities! Thinking James was still not allowed any food or drink we started sneaking it to him he was starving since he had not been feed in almost three day, and then was slowly fed through the tube, then we get back to the room and I admitted to the nurse that we had fed James at the party, she then said OH! he can eat now!!!! another GREAT. Though no food trays were ever delivered so.....

Thursday I went to the cafeteria with James in tow and ordered breakfast he ate like James, and later that afternoon I called the cafeteria to order him a lunch tray, they showed in there system that James was tube fed only, HELL O! So I stormed out and was not very nice. Well we got James' lunch , which he ate a quarter of mac n cheese and 2 bites of fish sticks/Hence the need for tube, that is our usual eating amount except for our good days it can be a tad more, any how , the nurse came in and checked to see how much he ate, and exclaimed WOW he did good, no you fool I ate the rest of the Mac,(did not want the fish sticks though) then she says to me your not to do that we have to track his intake, What am I a mind reader!!!!!

We could have gone home Wednesday by the GI's stand point but were encouraged by the surgeon to stay for 1 more night to get another round of antibiotics and a full 24 hour feed with no problems, we stayed HMMMMM!! DUMB D DUMB DUMB!

We came home mid afternoon Thursday, But that Thursday morning when I asked about our discharge and was told it was on hold! Great here we go again, so I explained to the nurse that my husband was coming at 1:30pm and we were leaving with or with out discharge papers. So by 11am discharge had been completed, but I could not leave until 1:30pm, this went over like a lead balloon with the nurse and began a battle of the FITS. I no longer could receive nursing help, James was still hooked to a feed which I did, not hard but well you know, I could no longer get pain meds or ANYTHING, nice children's hospital HUH! Way different than the NICU experience and that is why when we had decided to go ahead witht the feeding tube, I had little reservations regarding the hospital, felt great with the team of doctors and well over all was at ease to a degree. Not the case BOO HOO BIG TIME!!

So home now and everything is going great! James is tolerating his feeds well, He is still very very sore and we have a hard time caring for his button and placing the feed tube to him it is a two person job right now but I know that will get better. Main thing is he is doing great and outside of our hospital nightmare, no regrets. James is eating food by mouth well also, so much more than I thought he would have before the surgery I anticipated not much eating but not the case so far so good! I leave you with some pics from our stay.

We bought this wagon for James yesterday they had one at the hospital which he really enjoyed!!

RIBIT, A volenteer dressed for halloween!

and some more......

James dressed as the cutest cowboy I have ever seen. They handed out costumes donated from a local store. THE END!!!