Feb 28 we got discharged …
March 1 Trying to rejoin my life. Not always as easy as that sounds.
March 2 Dan, Jacob, Sam and Luke leave for the weekend. (Father and son thing.) It’s also my birthday. So the baby, girls and I stayed home. It was freezing (for Florida) so we mostly just hung out. We got rental movies and stayed in our pjs.
March 4 Meeting with our new GI. It’s an hour drive one way but I have to say, I’m thrilled so far! Labs were drawn.
March 5 The labs were back and the GI called to see why they weren’t in yet. No way! A doctor who is actually going to LOOK at the labs! :) She made subtle changes to basically every part of the TPN. Slightly increasing his nutrition. That night, he was choking on his own post nasal drip again. It was affecting airway and he had to have oxygen.
March 6 We went to the ENT. Sure enough, his adenoids are ragged and “generous” meaning he will have to have them removed sooner than later. Her first available surgery date is March 25. I doubted that will be soon enough to prevent another hospital stay. Especially since he was choking on his secretions on the way in to see the doctor.
March 7 Today is the day we’ve had his central line for 13 months, still infection free! (Amazing!) He was fine all day. But he was having a rough time sleeping. Again, choking every few minutes and desatting. He was going down to low 80s and even 3 liters of oxygen barely got him back to normal levels. It was a long night. Then at 4am, when I was repositioning him, he was burning up hot! 102.9 That’s an automatic admit to the hospital!
March 8 His temp was still high so we had to get everything ready and come in. IV antibiotic was started immediately and he started showing signs of improvement with 2 dosages. Plus, his horrible diaper rash is back and it’s clearing with the antibiotic too. (Means it’s likely staph.) We tried oral antibiotics (went in his jtube) but he didn’t absorb them at all so it basically did nothing for him. IV antibiotics are the only things that help. I’m just thrilled this hasn’t entered into his bloodstream! For as long as it has been hanging around, I’m quite frankly surprised.
March 9 His temp is gone, cough is getting better. He didn’t desat at all last night. So now I sit here in his hospital room on his “usual” floor. We have our system downpat.
So I thought I’d share a few things I do to survive the hospital. Every week I get a disposable cooler with his TPN. I take one of these to the hospital full of foods. Mostly fruits and vegetables. (think Salad bar. To get a small bowl at the cafeteria, it’s several dollars and it’s also a 5 plus minute hike over there. This way I don’t have to leave the room.)
I have a device that heats hot water. It has an automatic shut off so it’s even safe. From this, I can make hot tea, sweet tea and soups. I’ve even boiled noodles before!
I bring a few items like potatoes (they have a microwave). And then things that I crave. For some reason, when I’m tired and stressed, I crave CRAVE olives. Black ones, green ones, etc. I crave pickles and chips. So I throw a few of those in my bag.
For comfort, I bring very loose fitting comfy clothes. They’re carefully selected for several key elements … fit, no wrinkles, dark for no stains, and goes with black pants or jeans, can’t be too low, too hot or too cool. Etc. These things matter when you sleep in your clothes round the clock. I don’t want to have to think about these things. So I have a hospital suitcase packed with just such clothes all the time.
I also have warm, fuzzy socks. In my real life I only wear sandals so this is important. And I have a black oversized sweater. This is important because the rooms will be freezing then burning up. The sweater is easy to put on and take off.
I bring my own twin sized comforter. Why? Their blankets here are scratchy and thin and too short. You can either have your shoulders covered or feet but not both simultaneously.
Plus the essentials like soap that doesn’t smell like the hospital is NECESSARY! :)
Then there’s all the things for Manny. I bring DVDs, toys, ipad, slippers, his dreamlights dog, etc.
So as you can tell, we are able to set up quite nicely in our room. As often as we’ve done this, we have become quite the experts of surviving in this tiny room.