6.7 DUKE

Today has just sucked

We were spoiled rotten apparently locally at Levine (crappy doctors excellent facility) and the drastic change to this hospital hit me hard that I spent most of the afternoon in tears wondering how I was going to make it. Scott has to sleep on the floor on a mat (not an airbed a MAT), I have a small chair that apparently folds out. The room is 1/4 the size of our room from last week. His crib is at least a decade old it rattles and shakes makes a noise at the slightest touch, and makes a loud racket when you put the rails up so there is NO hope of laying him down asleep tonight and putting the rails up. The a/c isn't adjustable so Scott is hot and VERY cranky. It took over 30 minutes for our escort to show up to take us to our room even though when we arrived the room was ready. We asked for a child life specialist when we got here and haven't seen one yet. 9pm and Sean hadn't gotten any of his nighttime meds including his reflux med. THEY decided that he will now be on unflavored Elecare NO vanilla (we were flavoring 5 oz water 2 scoops unflavored 1 scoop vanilla to make 3 bottles of 2 oz total 6 oz) nope they are only giving unflavored so we may have more refusal just due to taste, when I asked they said what he refuses they will just put down the tube:( We brought his formula up but they said no parent provided formula. The lady that came to draw his blood obviously works with ADULTS she huffed and puffed when he wouldn't lay still and let her squeeze his foot for three little vials LADY HE IS NINE MONTHS OLD HE ISN"T GOING TO LAY STILL. Guess what something went wrong (probably clotted) and they have to redraw argh. She didn't even try to look or talk to my child either seriously she works with kids? Then Sean finally went to sleep at 5:40 he was exhausted and the nurses came in and said they HAD to put in his NG tube wake him up. Why now? because they have to give report at 7pm and they want it done before report time. So they woke his butt up and put it in. They only had size 8 and 5 on the floor neither fit Sean so they had to go to the other ped floor to get a 6 or a 7 did they get spares NO they only got one we later found out. Sean now weighs 15lbs 6 oz so he has lost even MORE weight. They have this really off the wall feeding schedule in mind for him I am just floored. Right now he takes 2 oz every 2-4 sometimes 5 hrs for a total of 15-18 oz a day, within FORTY EIGHT hours they want him taking 5.5 oz at a time every 4 hours for a total of 33 oz a day if he doesn't take it in the bottle just shoot it down the tube. If he vomits then we call the doc. First try he took 50ml of the 70ml offered so 20 went down the tube over 20min. That is such a huge jump I just don't understand. So seriously frustrated. Oh and at the other hospital we got breakfast in the room and two meal tickets (which was fine because it was usually only me and my husband) but this hospital provides NO meals and NO tickets so I have NO idea how I am supposed to eat when my DH heads home probably tomorrow. Sean SCREAMS when we leave the room someone can't just keep an ear out you have to physically be in the room and even then many days I'm not even able to eat lunch until dinner time. They aren't sure they will be able to get anyone to watch him while I eat so this should be the diet from hell.

ok pity party over.

Kat made the day 100x better by bringing us our "steak dinner" from subway it was just what we needed and we enjoyed spending a little time with her and she occupied Sean while Scott and I ate. While we were explaining the feeding schedule on the board to her Sean pulled his feeding tube out (it was only in for two hours) it was a split second and it was out! and nurse me freaked, yep its my child lol no nursing skilz here all momma when around Sean.

Thanks Katherine!

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