Excellent Care at Tampa General Hospital

March 8, 2012 in Filed Under: Cystic Fibrosis, Jesse 1 Comment

It feels so good to be home. It’s amazing how much you miss by disappearing for an entire week! Trying to get back into our normal routine is proving a little difficult after sitting around doing “nothing” for an entire week. We decided it best to cancel our Thursday plans and let ourselves fully recover. It was a bummer since it was a FACES meeting night, but I doubt that I would have been able to stay awake the whole time. We can always go next month.

I just wanted to share that despite all of our complaining about some of the Tampa General Hospital staff, we do highly value their care overall. I still believe that there is really no excuse for doctors who ask Jesse how long he has had CF (forever!), or other such silly mistakes. It seems like if there is something that they don’t know, they maybe shouldn’t keep talking in front of their patient. It just makes us hesitate to trust anything they say after that.

We did have one nurse who was very new and kept apologizing for needing to ask another nurse for help. We told her she was doing a great job and that we did not mind helping her learn. We realize that much of the staff may not have all that much experience with a CF patient and therefore don’t expect them to understand all the specifics, but when we have to point out that they are hooking up an IV incorrectly… I don’t understand that. This is why I feel like I really can’t ever leave Jesse while he is on morphine and can’t pay attention, because someone has to make sure the doctors’ orders are followed through properly. My job is to memorize what the doctor says and make sure that’s what actually happens.

We did have staff that were great! But those people were outnumbered by the not-so-great ones. It’s really not against Tampa General, I’m sure every hospital is the same way. You also have to understand that when you’ve been waiting around in the ER for over twelve hours, anything and everything that is slightly annoying becomes unbearable. So it’s definitely true that little things that might not have to be the end of the world seem like they are in that moment. We may be guilty of blowing an incident out of proportion, but we aren’t making these stories up… we just aren’t that creative!

One nurse made a big bloody mess while accessing Jesse’s vein for a blood draw. We were concerned that she was getting covered in his blood without wearing any gloves… bad. (I wonder what infectious disease girl would think of that!) One respiratory tech came to do Jesse’s breathing treatments DURING the contrast CT scan. Seriously? He’s a little busy right now, I had to fight with him to make him go away. He said he’d try again later, but he never came back… goof. We already mentioned the nurse who hid the clogged NG tube in a towel instead of fixing it… flop. The last nurse of the stay suggested something might be wrong with Jesse because he seems out of breath after a coughing fit. Really? Thanks for that info… weird. And of course there is infectious disease girl who was so concerned for my safety, exposing myself to Jesse’s germs. She was totally not understanding our situation and made me gown up and stay three feet away from Jesse. Too bad I had already been “at risk” for five days already… fail.

Anyways, we were very impressed with the confidence and attentiveness of the surgery team who was watching over Jesse. The resident came back, like he said he would, about every three hours all night when Jesse was having the worst pain. The surgery team could not believe that Jesse could be fine enough to go home just one day after being so close to needing surgery. They said that just doesn’t happen. However, if Jesse did need surgery for a blockage in the future, I’m sure this team would do a great job.

So, Jesse is still quite sore and still having some cramps in his stomach/intestines. He’s been eating less than normal and mostly soft foods as his stomach gets used to working again. Hopefully, we’ll avoid going back to the ER for a good long while. If/when we do need and ER again we’ll still choose to go back to Tampa General Hospital all over again… the positives always do outweigh the negatives.

Normal Jesse Returns

March 7, 2012 in Filed Under: Cystic Fibrosis, Jesse 2 Comments

It’s hard to believe that today is only the fifth day in the hospital, it feels like it’s been at least two weeks. I don’t know how our CF friends survive their long hospital stays. We’ve pretty much lost all sense of time. It’s a good thing the room has has one of those white boards telling us the date and day, I have to check it several times each day.

Yesterday I left the hospital early in the morning to make sure I was home in time to sign for the Pulmozyme delivery. I’m so glad that I happened to check our bank account and notice the copay charge, indicating that it had been shipped. I would have kicked myself so hard if we would have missed that delivery after having to fight for it for months.

After lunch I returned to the hospital to find a completely different Jesse. The GI doctors had been in to check on Jesse and he managed to convince them that he was well enough to have the NG tube pulled. And one of the CF doctors had been in to see him and cleared him to go back on fluids. By dinner time his diet was switched to real food. He didn’t eat too much of the food because his throat is still very raw and his stomach is unstretched.

Jesse eating

We’ve been told that he should get to go home today, but don’t expect it to happen too quickly since he still hasn’t been able to eat too much. He is eager to get out of here, but doesn’t have the energy to be in a rush about it. I expect we’ll see one of the CF doctors soon and maybe get a better idea of today’s schedule.

In the mean time, I need to be home again this morning for an appointment with our licensing agent! She finally got back with us and is coming over today to drop off our starter kit and get final signatures on our home study. I told her Jesse would be unavailable today, but she said that it was fine if it was just me. I’m sad that Jesse has to miss a step of our process, but today was the only day she was available this week and Jesse didn’t want to have to put it off another week. She said that we could scan and email items that will require his signature.

Sleep Deprived

March 6, 2012 in Filed Under: Cystic Fibrosis 2 Comments

You know that time when you’ve lost enough sleep that everything starts to be hilarious. I think I’m starting to reach that point. I guess it’s much better to be laughing at everything than angry at everything.

Friday night I didn’t sleep much because I was expecting Jesse to wake me up at any moment to take him to the ER. Saturday night we were in the ER so I got almost no sleep. Sunday night I slept fairly well on the couch in the bigger room we were moved to. By that point I don’t think it would have mattered where I was, I was so tired.

Funny sleeping

Since they had been saying they were going to be moving us to a different room soon, I was afraid to get too comfortable. Then I woke up a couple of times in the night thinking that they would come to move his bed and not see me sleeping on the other side of the room. I actually got up two or three times to see if he was still there.

Examples of funny things:

One nurse couldn’t figure out how to suction the tube. She just kept fiddling with it forever, not doing anything. Jesse tried helping her out and told her what to do, but she wasn’t interested in paying attention. So she finally just took the whole tube and wrapped it in a towel and left it that way, still clogged. For whatever reason this way so funny. I was trying to laugh quietly so she wouldn’t hear me laughing at her, but it was pretty difficult.

The other thing that made me laugh hysterically was when Jesse had a freak out about his cords and tubes being unorganized. They had been the same way for hours, but all of a sudden it really bothered him. I got up to help him out, but the great urgency to reorganize was just too funny.

So, that’s about all for entertainment around here.

Also, Jesse is now cured! We aren’t sure that we will get to leave today since he hasn’t even been cleared for any food or drinks yet. He’s been on only ice chips since yesterday. And it sounds like they want to do another xray, just to be sure that everything is good now. But I see no reason why we wouldn’t be going home tomorrow. Thanks again for praying for us over the last few days!