Home, Finally Home!

Daniel was released from the hospital today, but he's not exactly released without controls. First, the neurosurgeon released him with two conditions: first, an ongoing decodron (steroid) prescription; and second, no physical therapy or occupational therapy for the next week. The neurosurgeon will remove the staples and stitches next Tuesday and, hopefully, release Daniel for normal PT and OT. In the meantime, he doesn't want any stress on the incision site. Since we ended up with a staph infection the last time, this is probably a wise control, but Daniel is chafing at the bit to get going.

In addition, the infectious diseases doctor (Dr. Zia) has prescribed 4-6 weeks of antibiotics for Daniel. We've got an appointment for 11:30 tomorrow for his nurse to show us how to administer the IV's. He has a PICC in his arm which we tap into, but 3 times per day we have to flush the line with saline solution, add the bag of antibiotic solution, then flush the line again. The nurse will show us how to do it tomorrow. 

Daniel is jumping into his classes, reading what he can online and burying himself in his books. It's pretty cool - while he was still in the hospital he had two of his profs visit him and lots of his fellow students. As always, Daniel has made lots of friends, and everybody loves him. 

It's good to have everybody home again, especially Daniel. Carl called last week and he's going to be moving back in for a short term. It's always good, and it's wonderful to have him back.

Simple Staff

The infections doc (Dr. Zia) was just here and he had some good news. It turns out that Daniel has "regular" staph as opposed to methicillin resistant staph (MRS). The doc took Daniel off the one antibiotic. The vancomycin, which was the "big bag" that took nearly two hours to dispense twice a day was only needed if it was MRS. No, he's got him on a small bag that dispenses in a half hour, three times per day. That will continue for 3-4 weeks.

Dr. Zia spends lots of time explaining things. Daniel asked about going with pills instead of the IV at home. The doc explained that, with most orally taken antibiotics, the absorption rate is only 10-50%. With the IV it's 100%. So, with the IV you can be sure it's actually going to wipe out the staph and it won't comeback.

He's upbeat and the pain level is down quite a bit since yesterday. He's no longer using the morphine button which is a good indicator of pain level.

Recovering

Daniel is awake and recovering. Everything looks good and he went back to his room a little after 4:00. He's sitting up eating dinner right now. Of course, in the time before dinner got here, we hit the chocolate!

There's some discomfort from the new incision, but it's nothing like it was before. He's already tried moving and it didn't cause a problem and didn't hurt too much. He's been talking to some friends on the phone and seems to be recovering his spirits. They've got a "wound drain collection box" attached to where they made the incision, but it's not collecting all that much. I guess they decided that with all the irrigating they did they'd put that in to collect the resultant drainage.

Surgery Complete

The doc came out and told me that the surgery is complete and everything went fine. Basically, it was a routine surgery with nothing unexpected.

Unlike 4 weeks ago when we were the only people in the waiting room, there are several surgeries going on today. I asked the recovery room nurse if I could join Daniel but she told me "not yet". There's one other patient in there that's quite sick and a couple others with issues. Oh well, that's not really a big deal as he's still basically out of it.

The doc said they'd keep him here a couple days just to make sure things worked out okay. That opens the possibility he could be out of here on Monday (instead of Tuesday). It also makes it really unlikely that he'll be here longer than Tuesday.

I just saw the recovery room nurse wave another person waiting. As he left the room they wheeled a patient toward the pre-op rooms, so it appears that the routine is a little different than last time. It sort of looks like they use the recovery room for immediate recovery then transfer them to the pre-op rooms where the family can join them. The last time, since Daniel was the only person in surgery, they didn't bother moving him and we joined him the recovery room and then ICU. He won't be going to ICU this time, just his regular room.

Surgery Again

They determined that the infection is a staph infection, so the docs have been moderately concerned. He's been on his cocktail of 2 different antibiotics, plus they started giving him a steroid yesterday. Today, they are doing surgery to clean out the infection. This started around 1:30 and is expected to be about 1 hour. It's completely minor compared to the last one - no bone removal and no spinal cord invasion. They are opening him up, flushing out any infection pockets, then closing him back up.

The docs have told him that he'll be in here until next Tuesday. That means that he will have been in the hospital 19 days in the one month since 13 December and his first surgery. Hopefully this will be the end of it and he'll be able to start recovering quickly. The week before this was a tough one, as they had taken him off the steroids which had been giving his body an extra boost, plus the staff infection was attacking him and sapping strength. We're hoping that getting rid of all the infection will return some strength that's been missing.

I'll update when surgery is done and let you know how things went.

Staph Infection

The neurosurgeon brought in an infectious diseases specialist for Daniel's drainage. They determined yesterday that it's a staph infection, though they don't know yet what kind of staph infection it is. They expect that will occur tomorrow.

In the meantime, they have Daniel on two different antibiotics - Vancomycin and Ceftazidime. The first one is a two hour IV given twice a day. The second one is a 30 minute IV given 3 times per day. Per the second doc, he'll need to receive these IV's for 2, 4, or 6 weeks.

They were initially concerned that the staph infection could have made it into the bones, but they've ruled that out now. That would have required 6 weeks of IV's. Instead, it appears to only be into deep soft tissue which means about 4 weeks. Once he's released from the hospital they'll assign home health nurses for a few days to administer the IV's at our home, at least until they are confident that the family can do them. Don't worry, they've got a permanent "Pick" in his arm that you just plug the meds into, rather than start a new IV every time. Still, that's a helluva lot of antibiotics that he'll be receiving.

He was able to do PT this afternoon. Z wore him out really well, which is a good thing. It does appear that he's recovering some of his strength, though it's frustrating having one more thing put him back. We're just happy that they've got this under control, the surgery and pathology are all positive, and with time Daniel should be able to recover completely.

Back in the Hospital

Daniel had his follow-up with the neurosurgeon yesterday and there was some good news and some concern. Let me get to the concern first.

Since Daniel had his staples removed and came home, there's been some drainage in the center of his incision. This has progressively gotten worse, though it was clear, only slightly pink, without odor, and we figured it would stop. By yesterday it hadn't stopped, so the doctor was concerned. He admitted Daniel so they could do an MRI, which didn't occur until 12:30 this morning. The results show no drainage from the spinal cord and the tests of the fluid show no infection. Still, the doc is going to have an infection specialist look at him, have his dressings changed every six hours, and keep him in the hospital for 3 or 4 days. The good part is they'll get this taken care of. The bad news is that Daniel is going to be going stark raving mad in the hospital again.

The good news, actually great news, is the pathology report. The report (read it yourself, below) says the tumor is non-malignant and fairly rare. Once again, we would have rather been something common, ordinary, run of the mill, routinely treated. Oh well. Instead, it was a ganglioglioma. I did some web search and found at least one site that gave some decent information. Things that echoed what the neurosurgeon told us include:

"Most gangliogliomas are non aggressive, and most patients present with long-standing progressive symptoms." Daniel's symptoms certainly came on slowly.

"Gross total removal is the best chance for a cure." That's what we did.

"Most gangliogliomas are observed in patients younger than 30 years." Interesting.

"Recurrence is rare following gross total resection of the tumor. Radiation treatment is not indicated following gross total resection. Complete tumor resection is generally curative. Metastatic spread is extremely rare. Only a few reported cases describe benign gangliogliomas progressing to malignant gliomas." Ahhhhh, can breathe easier. Yes, Daniel will continue to struggle with therapy as he recovers, but it looks like it should not recur.

As to Therapy, that's a mixed message. Daniel's working it really hard, but in the past week he's regressed. This caused some real frustration and fear over the weekend. We then realized that they've been cutting back his steroids and ended them on Thursday. The therapist and doctor confirmed that Daniel hasn't regressed, it's just that his body is on its own now instead of being crutched by the steroids. With the serious side effects of the steroids, the doc does not want him back using them.

That should bring everyone back up to date. It sounds like Daniel will be in the hospital (Norton Audubon, again) until Friday and he always loves getting visitors - especially those that bring chocolate!