Transport, J-tube update, Neat Gracie story

Here's an update on Denise's clogged j-tube:
They'll transport her to Huntington to have another j-tube reinserted tomorrow (Tuesday) at 10:30am. In the mean time, the doctor at the SNF is putting Denise on IV fluids. I assume that this means that there will not be any feeding going on. We're trying to see if the nurses can also keep trying to get some water through that clog. I remember that with the g-tube, they used to pour Coca-Cola down the tube... the acid in that soft drink would eat through the residue in the tube. Hmm... maybe I'll ask about that for the j-tube. Dumb thought, but what the heck. Also, when the feedings do restart through the tube again, we're going to push for continuous 24-hour feedings so that everything stays moving and lessens the likelihood of a clog.

This just in: The case manager is anticipating a two-bed room at this facility to open up tomorrow (Denise is sharing a room with two others, bathroom with five others). But there's also a possibility of a private room opening up at that Foothill facility that she was supposed to go to last week. The fewer people sharing the room & bathroom, the fewer the chances are for infection (very important). But we'd have to start all over again with getting people familiar with Denise's case, double & triple-checking paperwork, etc. Also, the Foothill facility is farther away. The place she's at now is between home & work, and only five minutes from where we live. To me, the lower probability of infection trumps the headache of paperwork, peoplework, and commuting. Thinking outside the box (and looking at the bottom line from the point of view of the HMO's bean counters), maybe it's possible to keep Denise at home with RN-level help to deal with the PICC blood draws, j-tube flushing, etc. Again, dumb idea, but who knows? We need wisdom, wisdom, wisdom!

Something impressive neat happened with Gracie over the weekend, and I can't believe that I forgot to type about it earlier this morning. This happened the first time I tried to take Gracie to visit Denise. Everyone in the lobby and down Denise's hallway was in a wheelchair. Many were slumped over in their chairs, some had tongues swollen out of their mouths, a woman was sitting in a chair seemingly convulsing and spacing out (for lack of understanding about what condition she has, that's the best description I can think of). Gracie was scared of the appearances of many of the people there. It didn't help that many residents, upon seeing Gracie, rolled over to her for a visit, some of them reaching out to her, a few unable to smile, some unable to speak intelligibly. Gracie was startled, clung to me, started sobbing, and so I took outside, where she started full-on crying. We went home.
Once there, I pulled out a children's book that one of Denise's friends gave us. It's called "Someone Special, Just Like Me" and it deals with physical disabilites. We talked about how the people that we saw are sick, like mommy. They're mostly older and sick in different ways, but they're still people that God loves, and we should be loving toward them, too. They can be happy, sad, and just like mommy, they probably are excited to see little kids like Gracie. They were trying to be friendly. Some of them are so sick that they can't smile or speak, even though they would really like to.
We went back again with Jacob later. The lobby was fairly empty and my mom was there, so things went well. Jacob, by the way, seems to be fine during the visits. He's probably thinking, "Big deal... I too am rolling around, can't talk, drool, and need diapers." Moving right along... Another day when I brought Gracie, one of her little friends and her mom were visiting Denise. Gracie & the other little girl were peas in a pod, and all went well... they sort of distracted each other from the residents. The last time I brought Gracie, the lobby was full, and Gracie was all smiles with everyone. She actually seemed to dig all the attention. There's a waiting room with an aquarium in it, and Gracie got a kick out of finding a large fish that lurks at the bottom. One of the residents that Gracie was scared of during the first visit rolled in and tried talking to Gracie. I was able to tell Gracie what the woman was trying to say to her. I told the lady that Gracie was enthralled with the big fish at the bottom of the tank, and I asked Gracie if she wanted to point out the fish to the lady. Gracie walked across the room to the lady and took her hand, pulling with all her might to get the lady rolling over to the aquarium, smiling and excitedly telling her to hurry up before the fish hides somewhere where they can't see it anymore. Ever since, she knows no strangers there.

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