15 Days

Back in August, M-11 caught c-diff which is a horrible bacterial infection in the intestines. She caught it at the hospital while she was getting her Remicade treatment. It took two rounds of the heaviest antibiotics to wipe it out. It left her 10 lbs. lighter, feeling awful and in need of a blood transfusion. (Although she ended up needing three while in the hospital.) It also threw her IBD into a major flare. After much consideration, we decided to check her in to Children's Hospital for a bowel rest and IV nutrition. While there, her GI decided it was time for another colonoscopy and endoscopy, as well. The hospital experience is never a good one. She is what is called a "hard stick" so starting an IV has been more difficult lately. It took two tries and it hurts.  After a couple of days, IV's go bad, and the IV nutrition called TPN must go through a special IV called a PICC line which is a bigger procedure that involves some light sedation.  Preparing for the scopes involved an NG tube to deliver the Miralax for the "clean out." I think that won the prize for worst experience this go around. Unfortunately there were other things in the running for that prize.

Some good things were: our room for the first week, the nurses, (for the most part...) and hospital dogs!  We also watched a lot of I Love Lucy and who doesn't love that? Most of all, the prayers, fasting, kind concern, and acts of service that were rendered on behalf of my entire family. So grateful for the love and support!

Like I mentioned, we had a great room the first week.  It was in the "new" building and the room was large and had a very nice bathroom that I was welcomed to use and shower in. The couch bed was almost comfortable and large enough to have ample seating for visitors so they didn't have to stand around.  Unfortunately, we had to switch rooms and were sent packing to the Motel 6 after our comfortable stay at the Marriott. The "bed" I was given was a chair that pulled out to an ironing board.  Hardly big enough for 60 lb Miss M! I literally piled extra pillows on the board and slept on top of those. Uncomfortable hardly describes it. Thankfully they have another style of recliner, that I have had in the past so knew to ask for, and they found one and traded me. Not comfortable by any stretch of the imagination, but better than "the board"!

The old, cramped room really lowered our morale and we ended up needing a sign for the door.  Coming home was a long, slow process. After five days of no food or drink, (and believe me, just because you are receiving IV nutrition, doesn't mean you are not feeling starved and not having hunger pains and cravings!) they started her on clear fluids, then the white diet- noodles, potatoes, turkey. It doesn't sound too bad, except that the hospital food is absolutely disgusting and provides no motivation to eat. It was so bad, I sent out a help request to friends to bring her good, home cooked food.  Unfortunately, for an unknown reason, she took a turn for the worse the day before we could have come home and started bleeding heavily. Back on NPO (latin abbreviation for nothing by mouth) and she was feeling really sick. There was never any answer to why she took that turn.  I questioned if it was something from the scope, but we just don't know. Because the doctors were so worried about that turn, they went super, super slow on reintroducing her food which would show she could go home. Too darn slow. It was extremely frustrating and disheartening to think she could go home in a day, only to be told every day for multiple days, "maybe tomorrow." It took Daddy meeting with the team and laying out an action plan. It was to the point where staying in the hospital was not benefiting her, only doing more emotional harm than good. It's so important to advocate.  I really can't imagine not being there every minute. It's a frightening thought, really.
It's so good to be home!