heading home

Last night we were finally released at 5:30, but neither Mike or I felt we could safely drive. So we stayed in our nice hotel room, and slept with out 1 nurse or doctor interrupting us. Right now this computer is one of my last things to pack up and then we will go down for the free breakfast and break free of Rochester (for a few months).

can we go home yet?

The urologist- Dr Husman came in to visit with us at 6:45 this morning. Mike was on overnight with Ian, and I got to sleep in a hotel with Clay, as long as I did the laundry. So now both our babies have clean blankies again.

Anyways, he said there was a little bit of kidney damage that showed up on the MRI. And reiterated the need to cath him 4 times per day. So last night Ian actually had his first cathing in the hospital. It took 5 of us to do it. (yep 3 days after checking in, they finally realized that they should be cathing him. That has happened to us before).

We will be back to the Mayo in 2-3 months and will see most of the Drs we saw on this trip. Dr. Nash (spinal bifida), Dr Freese (GI) Dr Husman and who knows how many more. I don't think we will be seeing Dr Raffle again. His work is done.

We were told we could go home when he runs clear, but his progress to that state is not quick, but it is mostly steady. But now we are also waiting on the urine analysis.

wedensday evening

Ian is sitting on the potty. If he poops in the potty 10 times while he is here, he will earn a toy. He already has 4 of the times down.

I found another hotel for tonight. The bill is 4 times higher, but it is much more comfortable, and tonight that sounds good.

The urologists were not thrilled with the MRI of his (ok, I can spell the technical name of it today) anyways, the tubes from his kidney to his bladder, the looked a little stretched- although they can not be sure as the MRI was done with full bowels.

And I finally figured out that nurses are there to do the things Mommies and Daddies are too tired to deal with after 3 days in the hospital.

Wensday's update

well, it says a lot that a little bedroom with a leak in the ceiling is a lot better night's sleep then the parent's couch in the hospital room. there is hope that we will be out of here today, one of the interns said it might happen. Ian is now making nice large messes.- and he wanted his care bear.

The poor pumpkin was almost comatose yesterday. He didn't want to respond to people, and mostly slept all day- so when we went "downtown" he rode in a wheel chair, and was throwing up every several minutes. He actually started looking interested in life in the physical therapist's room. Then he actually got out of the wheel chair and started climbing around. This aliveness continued when we came back to the hospital and he was allowed 20 minutes in the play room before being hooked up again.

This morning he is enjoying some cheesy kid shows on TV. - Maybe I will go do some research on bedbegs.

producing

Ian is producing messes, so far no major leaks on floors or chairs or things. The nurses have in the bathtub, and Clay is having a fit because he can't take a bath with his brother. I am about ready to go to my small little hotel, only $30/night with a shared bathroom- but at least it should have a bed, and that is what I really care about.

We got a pass to go to our appoints "down town" today. Dr Raffle showed us his old and new MRI and pointed out that the fluid sack is all but completely disappeared. So that feels successful. Then we went to physical therapy for Spinal Bifida, and I have several stretches to do for his lower extremities each day. Adding that to the cathing, enema giving and Galen, and I might just stay busy.

Empathy for Aunt Katy

Although Ian has fallen asleep very quickly on his hospital bed, I truly can feel for Aunt Katy. This parent's couch is about as soft as a a jaded pile of bricks. Every twist and turn last night made me think "now there is another chiropractic adjustment I will need to have."

The doctors we met with yesterday explained that most kids with spinal biffida have been catheter ed and bowel cleansed from birth, the children do not know any different. Ian, however, had 4 years where his went undiagnosed (because it was low and internal). So now we not only have the job of teaching him (and us) how to take care of his potty needs, but also have to undo the enlargements of the colon and bladder that has occurred during this time.

Because they wanted the MRI today, they stopped the go lightly at 3:30 this morning- however they were kind of hoping his bowels would be clear before the MRI so the MRI would provide a better picture of what was happening. For some reason, nobody thought to look at the history of his previous bowel cleansing and say "hey, it took us 3 days to get his bowels cleared last time, why do we think they will move easily for us now?"

Back to St. Mary's

well if there ever was a place to call home around here, st mary's seem like it is it.

Ian's bowels are obstructed again, and has to be cleaned out before we can start him on a continuous maintenance program. Why they didnt start one after his visit in march- I am not sure. But they are going to stop the stuff in time for him to get the MRI done tomorrow, and then they will continue cleaning him out. And they are still hoping to get him to his appointments tomorrow.

In case you are wondering we are in room 3-148. phone #507-287-4641