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!

   

Home For Christmas

The good news just keeps coming. Today, Nancy and I went down to New Albany to join Daniel for the "Team Meeting". This included the Doctor, Nurse, Occupational Therapist, Physical Therapist, and Case Manager. They all talked about where he is right now, where he needs to be going, and when he gets to go home. He's made so much progress that he will be getting out tomorrow around noon and coming home. Yippee! He's stoked as are all of us. They expect another 3-4 weeks of OT/PT which he will do at the local hospital's center, but he's well on his way.

Today they had him on a recumbent stair climber. After the therapist set it up Daniel commented that it was set up with much less resistance than the last time. As it turns out, it was set up at a slightly higher resistance than the last time, which was just 3 days ago. So, since it was so easy to push, the therapist turned it up another couple notches. Even with the increased resistance, Daniel went twice as many repetitions as the last time. Obviously, his legs have grown stronger. That further fired us up.

We've been cleaning out Daniel's room, stripping the wallpaper, painting it, and getting it ready for him to return. Obviously, we have to make the room much more accessible and it certainly will be. 

Hope everyone has a merry Christmas. Daniel's successful surgery and ongoing recovery have certainly made this year merry for all of us.

Daniel's Friday Update

So much to update since I didn't do an update yesterday. Where to start?

Daniel was moved from Norton Audubon (which did a great job) to Southern Indiana Rehabilitation Hospital on Thursday afternoon. He'll be there until Christmas Eve when he'll be coming home. SIRH is located in New Albany just off Charleston Road, south of I-265. The road it's on is Blackiston Road and it's pretty easy to find. He's definitely taking visitors - his mornings are pretty well booked with therapy, but his afternoons and evenings are free. He loves getting visitors. You can also call him on his cell phone - 812-493-5633.

Dr. Nazar still didn't have results from the Pathologist, but he was very confident that the tumor was not malignant. He sent it off to a Pathologist at Johns Hopkins who is supposed to be The Expert. Per Dr. Nazar, he wrote the book that Dr. Nazar studied from when he was in school. That's good enough for me!

Today he had an intensive morning of therapy - Occupational Therapy from 815-900, Physical Therapy from 915-1045, and more Occupational Therapy from 1115-1200. They wore Daniel out, but it was really good. Some high points:

1. Daniel's been concerned about areas of muscle weakness or tingly feelings. The two therapists told Daniel these can all be fixed. With spinal injuries or surgeries the real problems are when there is NO sensation or movement. Since everything works, albeit less than optimally, it's only about improving function, not worrying about whether there ever will be function. 

2. They did extensive testing today, including sensitivity testing (no, not that kind). They touched him with a calibrated thread/wire/hair that appied a given amount of pressure. By using different wires, they could determine just how sensitive different areas were. He could always detect touches at some point, it was just that the more sensitive areas could detect super fine touches and the others less fine. Again, this tied in to the conclusions, above, that everything is connected and working, it just needs time and therapy to fully recover.

3. Daniel was up and down stairs, walked 150 feet to the therapy gym, and is generally getting around really well now. Based on the tests and what he was able to do today, evryone is convinced that he'll be able to meet the goal of being home for Christmas. Yippee!

The weather was finally nicer today. It's been dreary and cold for the entire time Daniel's been in the hospital. However, today the temps reached the mid-60's and the sun was shining. It was a wonderful day, even if it was windy as heck. So, after getting approval, we went rollabout! Daniel put on his coat and hat, I loaded Daniel in the wheelchair, and we took a couple laps around the sidewalk. So nice! The fresh air was great for both of our spirits.

Daniel has therapy every day, including Saturday and Sunday. He's doing great, improving every day, listening and learning from the therapists, and staying as optimistic as anyone ever could. Everyone at this facility loves him already, but that's pretty normal with Daniel. 

Nancy and Maggie are going down tomorrow, so I might not get an update done, but we'll see.

Wednesday - With Pictures

Daniel had another great day today, but he's still at the hospital. However, we did get figured out what will be happening. Tomorrow morning they will transport him to a transitional care facility (aka halfway house) in New Albany. It turns out to be located about 2 miles from IU Southeast where he goes to school. The insurance has approved him for 6 days, so he will be coming home Christmas Eve.

Daniel has more physical therapy this morning and they worked him really hard. In fact, he came back from that and slept for 2 hours. After lunch Nancy and I went out and found him some more comfortable clothes - a button shirt and some sweat pants and shorts. It was so nice for him to be able to do PT in the afternoon without the hassles of the gown hanging down below his knees. 

This afternoon, they took him downstairs to the gym and put him on a recumbent bike for 15 minutes. Since it didn't put any stress on his neck, he could really work his legs and even worked up a sweat. So cool. Then they did more occupational therapy, working on his fine motor skills, especially with his left hand, which has been a major problem for over a year.

This evening came the most freeing events. His RN, Mike, pulled the last of the IV's around 6, so he no longer had any tubes hanging into him, or bandages constraining him. Yesterday afternoon they had discontinued the Morphine, so now he was free to move. Nancy and I, at the recommendation of the PT, took Daniel out for a wheelabout. We covered most of the hospital, stopping by surgery, imaging, the cafeteria, and pretty much everywhere else. Then Daniel wanted to see the wonderful Christmas light display they had outside - it's really wonderful. Since he was dressed in normal clothes, why not! Definitely, getting out and about was great for his morale.

We were just about to leave when Mike came back, right at 7 (the end of his shift) and told Daniel he had just enough time to remove his dressings. The doc had put that on his orders, but they hadn't had time to get to it, so he ended up spending 15 minutes of his own time. Nice guy. That's when we got to see what is a 14 cm incision held together with about 36 staples. It appears to be cleanly closed and the scar should be pretty fine, certainly an additional thing Daniel was concerned with. Oh yes, there's also plenty of ink where the doc marked his back before cutting.

 

Tuesday

Today was much the same as yesterday, only different. The doc was in this morning and happy with the progress again. PT showed up and tortured him (not really). They got him down to the Joint Room and moved him across the parallel bars, up and down a few stairs, and lots of walking. He's progressing quickly but there's still a helluva long ways to go.

The case worker is trying to find the ideal next step for Daniel. Normally, they would assign him to a halfway house for a couple of weeks. However, since he's already up and walking that's not as certain. Further complicating things is that at our home, he's got a steep stairway to get to a shower, plus 3 steps to get into the house - without a handrail. In addition, there's not a whole lot of faith in the local hospital and health centers. The final complication is that a "normal" stay would be 2 or more weeks, which would put him there through Christmas.

Late this afternoon they started looking at a halfway house in New Albany, but with only being there a little over a week - release just before Christmas. That would give him long enough to build his strength and survival skills before having to survive at our home.

Monday Updates

Maggie and I were at the hospital until around 2:15, then Nancy went down there, getting there around 4:30. Here's what I know from our visit.

Physical Therapy (PT) got there around 9:30 and got Daniel up and out of the bed. On his own strength, he used the walker to get to the chair, where he sat for an hour. PT was happy with him being able to do that so quickly. The doc showed up around noon while I was taking care of registration problems for Daniel. The doc was in a hurry as he was in the middle of his 10 scheduled surgeries for the day, but he answered Daniel's questions. In sum, the doc was really happy with the movement that Daniel has already. Daniel asked about the lack of cold/hot sensation in his right leg, the tingling still in his hands, and the limited strength in his left leg. The doc told him those were non-issues. As good as he is already - these minor issues are pretty normal and will be resolved as a matter of course.

PT was back in the early afternoon to take Daniel walking. He was out of bed, out the room, and partway down the hall. The PT were happy with him going out of the room and were ecstatic when he was able to walk the extra distance down and back up the hall. They estimated his total distance at 75 feet and said it was a great first day.

The doc and the PT think that Daniel will leave the hospital on Wednesday. They want to transfer him to an intermediate facility. I can't remember what they called it, it was something like a transitional care facility, or interim focused physical therapy center, or whatever. We just called it a halfway house. The idea is that he won't require the services of the hospital but he will need intensive physical therapy for a couple of weeks. So, the case worker is trying to set things up for a halfway house in Madison near Kings Daughters hospital. That would put him there over Christmas, but I'm sure we'd be able to work things out.

Daniel continues to have many friends visiting - the door is wide open and anyone that wants to see him is welcome to. He's got us all laughing during our visits and the hospital staff all love him. It's all good and he's in excellent spirits.

Yes, we've got many negatives this holiday season, but they pale in comparison to the one incredible positive coming out of Daniel's surgery. As Daniel put it in the recovery room, incredibly drowsy and barely able to speak - he raised his arms over his head and yelled out "I'm not paralyzed". We're going to have an incredibly merry Christmas.

Late Night Update

No one from Physical Therapy ever showed up so Daniel was not up and walking today. He's up on a floor where all the Nurses know Dr. Nazar well. When we asked if he thought the Doc would be upset that PT hadn't made it, they rolled their eyes, smiled, and said that he was used to having his orders followed. 

So, Maggie and I will be down there tomorrow morning. The Doc has a full schedule of surgeries scheduled. The nurses said that he would either be in around 7 in the morning, or 7 in the evening, but that it would probably be in the morning since he only does phone rounds on Sundays. 

On a separate note - the Vikings need one more victory or one Bear loss to clinch the NFC North and a playoff berth. So, I bet no one ever expected to hear me say this - GO PACKERS!

Everything's Doing Fine

About 3:00, they moved Daniel from ICU to the 6th floor ortho/neuro ward. The neuro surgeon that did the surgery called in around noon to check on Daniel's progress, and was so happy with the progress that he decided not to stop in, scheduled Daniel to be moved, and asked that Physical Therapy get him out of bed and walking this afternoon.

Daniel remains very, very happy. He's had lots of friends stop by already - there were 6 plus the 3 of us in there at the same time earlier. He's eating everything they bring him, plus whatever else that we give him. His left hand is working like it hasn't in ages, though it still has tingling. His right leg appears to not be able to sense cold/hot, though it works just fine. His left leg still has motor skill issues but senses hot and cold fine. The doc is comfortable with that as it's still very early and things will keep improving the further from surgery we get. Guess that's part of what PT will do for him as well.

Don't know when he'll be going home, but they've got him on a reducing regimen of steroids for inflammation that will run through Tuesday night. I suspect that means he'll be going home Wednesday at the earliest, but I'm only guessing. Everything remains as positive as we could have hoped. They still have him on a morphine drip, plus a button that allows him to periodically increase the morphine level. He's feeling pretty well, eating well, and happy with friends and family.