It's been a week of a few more surprises, not the least of which is that I'm writing this post from home, at my own computer.Surprise 1: I thought I knew what tired was. I was wrong.
Surprise 2: I thought we had a complicated medication schedule before. I was wrong.
Surprise 3: I thought I knew just how resilient and generally amazing Lemon is. I was wrong.
On Tuesday of last week, we had a PICC placed. After the rodeo-type scenario that was the IV placement, we decided to put the PICC in under general anesthesia, rather than just sedation. Since Lemon was going to be down in interventional radiology anyhow, we took chest and abdominal X-rays, too. It cracked me up that the radiologist, who was younger than I, referred to it as a "chest film" even though I'm quite sure he's never touched a physical piece of film during his time as a physician. In any event, the PICC placement went very smoothly and the X-rays looked normal, so that was a win overall. On Wednesday, the doctors evaluated Lemon and his home team, and decided that we could be discharged to finish up the IV's at home. Hooray! We were discharged Thursday afternoon. By the end of the day Thursday, we'd received a giant bag of supplies from the home health pharmacy, and a visit from a nurse to teach us how to use them.
Overall I am delighted to be home. It is vastly better for the kids--they can live their normal lives with a minimum of disruption. For Papa Bear and me, this existence really stretches the definition of normal, but I'm more than willing to stretch if it keeps my kids feeling like regular kids. Here's what happens in our house these days (in order to keep this to a manageable length, I'll just focus on what happens between 5:30-6:30 a.m., and you can just use your imagination to fill in the 3 additional meals, 2 additional IV treatments at 8 hour increments, and 2 additional vest/nebulizer treatments that happen at other times of day, plus the usual shenanigans of caring for a 5-month-old infant and keeping a household running).
5:30. Get up. Wash hands and put on gloves. Connect tubing to new syringe of antibiotic, load syringe and tubing into pump. Prime two saline syringes and one heparin syringe. Lay out other assorted IV supplies on tray. Assemble two neb cups and masks. Load with hypertonic saline and Pulmozyme.
5:45. Go into Lemon's room. Get therapy cart out of closet, plug in power strip and compressor for vest. Slip vest onto Lemon by opening one shoulder so as not to interfere with the tubes coming out of his right arm. Sterilize connector on the PICC with an alcohol prep pad. Flush line with one of the saline syringes. Connect tube from antibiotic syringe to the connector. Connect hoses to vest. Administer two puffs of albuterol. Start vest. Connect neb cup with hypertonic saline to compressor and start compressor. Check to make sure antibiotic is really running.
6:10. Switch to Pulmozyme neb cup. Express enthusiasm for the remarkable rendition of "Wheels on the Bus" that we are watching on YouTube.
6:20. Power down vest and disconnect hoses. Put on fresh gloves. Disconnect tubing from the PICC. Connect saline syringe to the PICC and administer the first flush, disconnect and then connect heparin syringe for the second flush. Remove vest. Gather up disposable debris and put in trash. Remove gloves. Take off vest. Stow cart and various supplies in places where a two year old will not destroy them.6:30. Breakfast. Prepare Scandishake. Mix applesauce, probiotics, and enzymes. Convince Lemon to ingest the aforementioned. Load syringes with ranitidine and Zyrtec. Convince Lemon to ingest the aforementioned. Locate multivitamin and vitamin D solutions. Convince Lemon to ingest the aforementioned. Locate coffee cup. Discover that coffee is cold. Put in microwave for 33 seconds. Ahhh. Ready for the day to begin.
The good news is that Lemon does seem to be more or less back to baseline. We have a follow-up appointment at the clinic on Wednesday, and my guess is that they will take the PICC out. Then, we'll watch and wait. Hopefully all this has been worth it, and whatever has been causing all Lemon's troubles will be gone, and we can return to our version of normal. Although I wouldn't recommend this lifestyle as an overall fitness plan, it has had one noticeable side effect--two kids later, I could fit into my wedding dress today (if I still owned it, that is).
