3/21 – Minor “surgery”; meeting with hospital team; on going home

Jamie had another surgery on Friday following her surgery on Tuesday. Friday’s “surgery” was comprised only of redressing her wounds – this could have been done bedside, but it hurts and if it’s possible, Jamie would prefer to be knocked out for all things painful. Dr. Smith simply changed the wrappings on Jamie’s legs, looked at the skin grafts to see if they’re “taking” well and also to see if the donor sites (respecting the grafts, the donor sites are the places that skin was taken from) still show signs of infection. They are… and they do. That the donor sites show some signs of infection isn’t that big of a deal. These locations can be treated directly, but, after taking a culture from Jamie’s skin, her doctors, including Dr. Lin (Infectious Disease), recommended that Jamie begin a few days’ worth of antibiotics. Jamie still has the IV line in her neck from Tuesday’s surgery – if I hadn’t mentioned it, she has the IV in her neck because it would have been impractical to put an IV in either of Jamie’s arms in the “Hand Switcheroo” surgery.

KC and I had a meeting on Friday with representatives from several of the departments that oversee Jamie’s care. Represented there were Nutrition (Allison), Social Work (Rosa), Risk Management (Teresa), Physical Therapy (Michael) and Occupational Therapy (Barbara). Teresa also spoke on behalf of a few doctors who couldn’t be in attendance. Mom couldn’t make the meeting, which I think is good because we covered a lot of topics that mom doesn’t usually talk about. The main topic of conversation was our imminent departure from St. Joseph’s. It’s not that we’ve overstayed our welcome at St. Joseph’s, which is a miracle of its own. Everyone there agreed, including KC and I, that Jamie needs to be back in Austin with her friends, pets and family as soon as possible. Something that kept being repeated by the medical team was that Jamie could go home today, if she lived in Houston. This continues to baffle me: How could Jamie go home if she has so many open wounds? She’s still very weak and we haven’t transitioned from her catheter to regular peeing so that’s one of the things we need to take care of before leaving. Teresa told us that people are discharged, where they need extended care, based on whether the patient can receive competent care from a home nurse (sure, why not) or a lay-person trained loosely in wound care and stuff (mom). So, as they’d been saying, Jamie could go home now if everything was ideal.

Unfortunately, everything is not ideal. I told the team that a lot of things need to happen before Jamie can leave the hospital to be cared for at home:

1) Her legs need to become less sensitive to the dressing changes – if mom or someone else is going to be changing the dressings at home, then we don’t want to do this unless Jamie can tolerate it better. This is not a major obstacle preventing us from going home.

2) Her butt wounds need to close, damnit – this is taking for-ever. Jamie’s wounds on her butt, which formed at or around the time that the wounds on her elbow (healed) and legs (mostly healed) appeared. The butt wounds aren’t healing with the same speed because Jamie is sitting on her butt all day. Pressure, lack of exposure and friction (my word) are preventing these from healing quickly. They are healing. Dr. Smith was even toying with the idea of stitching up some wounds after removing the abscesses, but decided against it after seeing Jamie’s beautiful butt. The wounds are closing on their own, finally… slowly.

3) Her medications need to be whittled down to something manageable – Jamie is currently on a pain killer regimen that would kill a horse. Morphine, Dilautid, Fentanyl, Vicodin. If Jamie left the hospital today, we’re facing a pill schedule that is (a) confusing, (b) potentially very expensive [how much are fentanyl patches anyway] and (c) perhaps unnecessarily duplicative. I suggested that we get Jamie weaned off of some of these meds so that we can just go to Walgreens and get one or two prescriptions as opposed to four or five.

4) Jaime is weak and needs to get stronger before rehab – Rehab centers require their patients to complete 3 non-consecutive hours of rehab each day. Jamie could probably do this now. Maybe. I mean, 1 hour, three times a day. Its possible. I just want Jamie to go straight to a rehab place, and not dwell in some quagmire for weeks at home or at a nursing home… yes, they recommended that Jamie go to a nursing home for a few of the intermediate weeks. It took them about 5 minutes to explain that there are nursing homes that are geared towards patients like Jamie… not just old people.

5) Jamie needs to be able to control bladder… um… control – this shouldn’t be too difficult, but we need a female urinal. I tried to describe this apparatus to the team (without giggling) but to no avail. They didn’t know what I was talking about and I started giggling when Barbara from OT started to describe what it looks like and how it works. Sorry. It’s funny. Apparently, Dr. Foot Doctor had ordered one for us several weeks back, but no one had followed up or given us a female urinal. Are they hard to come by or something? This shouldn’t be too hard, but takes a few days to master after 4 months with a catheter.

So, to recap – before we go home, I want some or all of these things to happen: (1) butt wounds healed/healing well; (2) leg wounds heal and Jamie can tolerate dressing changes easily; (3) get a handle on these pain meds; (4) build enough strength for close to 3 hours of rehab a day; and, (5) peeing under control. [Also, we NEED Jamie to not have any infections… that’s not a preference; she can’t leave if infected]

After our conference, people moved fast. We had a team of dudes in the room ready to take Jamie’s current bed out of her room… which would be fine if we had another bed ready for Jamie. I called Teresa about this and when she called me back, she straightened out the bed situation (… sort of – we still have the same bed because our usual bed “pulsates”, which, we think, Dr. Smith wanted in the new bed… so no problem.. right?) and told me that a female urinal would be purchased the next day (today) and given to Jamie today or tomorrow. Apparently they aren’t hard to come by. Good stuff.

Jamie’s attitude continues to improve. I think I’m going to spend more time with Jamie in the coming weeks/months. Jamie is one of my best friends, and mom is her mom. I’ll go and we’ll watch Lost (!!!!!) and we’ll watch Project Runway Season 2 (The one with Santino and Andre… btw, I like chicks) and it’ll be great.