Transplant day 96 and snow days

A shot of the snow Monday morning after it snowed all day Sunday. Before this, there wasn't any snow on the ground.

A shot of the snow Monday morning after it snowed all day Sunday. Before this, there wasn’t any snow on the ground.

My phone rang at 5:30 this morning. It was a recording from Omaha Public Schools announcing a snow day. This is the second snow day of the week. Church was also cancelled Sunday. It is snowing. A little over a foot has fallen.

I am trying to decide if this is premature. The parking lot of the Ronald McDonald House has snowbanks 10 feet high where the plows piled snow. And on Monday, I barely got my little two-wheel-drive car to go up the hill on a road with minimal plowing. I’m not sure that this is more or worse snow than we get in Utah. But the roads are less safe for it. They are narrow. VERY narrow. With no shoulders or turn lanes and cars parked down both sides. Also, everything is very hilly. So, while I grew up on the edge of a valley and our hills might trap us at home while the rest of the valley could manage to get around. Here, you might encounter 3 very steep streets within a few blocks of each other.

I don’t blame them for keeping the school buses home.

It didn’t affect us much with Patrick inpatient. We just watched the snow out the window. Snow days have fewer volunteers and more staff that got stuck trying to come in and fewer child life activities. But we are cozy and warm and protected from the weather. We have lots of toys and TV and crafts and books.

The less snowy days have provided ample help. We had 3 volunteers come by yesterday, giving me hours to get away and grocery shop and clean and rest. The day before, child life and music therapy and physical therapy filled in because there weren’t volunteers and I got to go back to the house and do laundry and pack clothes for a few more days. With nurses taking care of the medications and diapers and formula if I happened to sleep through those needs at night, I’ve actually had a chance to mostly catch up on my sleep in the past 2 weeks.

And that’s very good news. Because this morning, Patrick’s nurse practitioner came in and said that adding extra fluid to Patrick’s feeds had caught up his hydration and she was going to recommend discharge. It took a bit longer for rounds to come around, and I still wasn’t getting my hopes up too much. The added volume that giving more fluids required had made Patrick’s belly gurgle and dump during the night again and I had just changed 3 diapers back to back so I was pretty sure they weren’t going to let us go.

They came around for rounds and asked about Patrick’s prograf levels and they were borderline high and I was almost entirely positive, especially since it was a snow day, that they’d want to keep him one more day.

But, they said that since Thursday mornings are lab days, that homecare could provide the same care they were providing and so we could go. I settled in for a long wait, as discharge has taken till dinner the last few times. But an hour later, Patrick’s nurse arrived with some patient belongings bags and a cart for me to pack up our things and by 1:00, I was signing discharge papers.

Moving us back in always takes work. For some reason, discharge and the monthly diaper delivery always come together and that takes a good hour to make room for in this tiny room as I clean out and haul out old boxes.

But, we got everything settled in. We found time to work on a valentine’s craft, even. Patrick was obviously exhausted and overstimulated and couldn’t focus on much of anything.. but we made it through the evening ok. The dinner group let him start eating early when they saw us come down for a snack. Patrick was tired enough that he preferred playing in the room today. And so things are unpacked and put away and the formula is mixed up and medications reconstituted and line cared for and teeth brushed and pajamas on and by 9:30 tonight, Patrick was snoring in his bed.

I really should get to sleep. I know I’ll need to change at least two diapers and Patrick’s formula bag still needs refilled every 5 hours or so.

It is good to be out. And as discouraging as this hospital stay was, it seems we actually made some ground. We found the cause for the random bleeding I sometimes saw and treated the ulcers. And we found that Patrick can eat enough food to have reduced his overall tube feed rate by 10%. That isn’t much, but eating 10% of his calories is a big deal considering how little he ate before and how few foods he is used to eating.

The doctors have assured me over and over again that he shouldn’t still be contagious. They even went so far as to clear him to attend child life activities at the hospital, which is definitely a statement that they don’t see him as a risk. His gut, however, still isn’t back to where it was before the virus. That is going to take time and patience and lots and lots of diapering supplies.

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