Pete released and home!

There hasn't been much added to this blog since Pete has been an outpatient because of lack of good internet access and place to use a computer. It's also been a busy time.

We originally were led to believe that when he was released as an inpatient we would make daily visits to the hospital to the outpatient side of the BMT floor for blood tests and IV's as needed for a minimum of four weeks.

As we've since learned from experience, this is not the case. In addition, Pete has responded so well that we advanced in the process.

We began visiting the hospital daily on Sunday, July 30 and continued to do so through the week. By the weekend he already was given a day off much to our surprise. We were able to skip a day, which took a lot of stress out of hurrying around to get up and ready at a certain time to have breakfast and catch a shuttle to the hospital.

In general, each day that his blood was checked it was only potassium and magnesium that were borderline or just slightly low. The nurses wouldn't discuss supplements and insisted on giving him whatever the previous day's blood work showed he needed. His potassium was up to par in no time at all since orange juice is his favorite beverage. We also added Gatorade and bananas to be sure. The magnesium was a little tougher and he continued to be at 1.7 when they wanted 1.8.

The second week into outpatient care we started getting two days at a time off. This was unheard of as most patients we talked to didn't get to this stage for a month and we were only into our second week.

On our days off we would make a point to drive somewhere. When possible, we would drive to interesting places (surplus stores, gun shops, thrift stores, pawn shops, fairs) where we could walk around. I bought Pete a cane for added stability and he had to wear his mask, but we covered a lot of ground between the mileage driven and the walking we did. It was much more interesting to walk and do something than to walk for the sake of walking.

As much as it seemed that we had lots of free time on our hands, we really didn't. It's hard to explain. The community kitchen closes between 9:00 and 11:00 AM so we had to plan around that for breakfast. We didn't hurry and Pete had orange juice and a big bowl of cereal and milk most mornings. I tried to interest him in some fruit for a mid-day snack and then we'd eat a light dinner of whatever he could get down about 8:00 in the evening. We had to juggle to exchange our sheets and towels in the laundry room with housekeeping every two days and I had to do laundry in the laundry room every few days. Then of course if we went out we had to take a shuttle to the hospital even if we weren't visiting the hospital and take another shuttle to the parking garage to retrieve the car. To do shopping I had to do all that, shop for groceries alone, return to the HHH to unload them, and do it all in reverse to return the car. Everything was a huge ordeal.

The nurses told us that even though we had two days off at a time, we were not allowed to go home. They stated that Pete was "too fragile". When I questioned this and saw other patients going home for quick visits I would never get any explanation of what parameters they were looking for or when we could go home.

On Monday the 14th, we went to the clinic and I passed the doc in the hall and asked if he could please answer some questions for us. He said we had an appointment to see him anyhow. That was news to us. We had a very nice visit with him and he asked if we were ready to go home. I didn't even have to ask. I responded that we would like a couple of days at home as I had some things that really needed to be tended to there. He shocked us completely by stating that he meant "go home". Wow! We were in just as much shock as the initial diagnosis I think. We were only on day 31 since transplant!

Doc said that he was doing well and asked to be refreshed on who our doc in Roanoke was. When I started to tell him he immediately said our docs first name and waved his hand and said that he can take care of things from here on out.

I never even got to ask about visits home and the nurses not letting us. I did ask him about the borderline magnesium and he simply said to give him a supplement twice a day. Gee, that's what I asked the nurses about and they acted like I was from another planet!

We also discussed the strict rules in the book we were given and my interpretation of baby's immune systems. He said I was absolutely right and that we should introduce things slowly. He said that they have to be very strict both in the guidebook and with the nurses so people take this seriously. He relayed a story about the only death they ever had there and it was from sheer stupidity.

I asked about the external port and the removal and the doc asked if the end of the week would be convenient to have it removed. We agreed to do it on Friday and he said it would be arranged. We would return to Richmond on Friday morning, have labs drawn, and then have the plumbing removed and be home that evening.

Our visit with the doc was very informal. It was as if he was saying "Have a nice life." He said that hopefully we'll have several good years of happiness. If a need arises (as it will) down the road, just come back and have it done again.

So, we returned to Roanoke after a long ordeal of packing the room full of supplies in the car and taking a leisurely drive home on a back road.

We have the first appointment with our local oncologist on August 28th to bring him up to speed on everything and set up bi-weekly appointments for lab work or any recommendations he has. I will mention having Pete start on a bone strengthening drug. The only real bone pain he is experiencing other than his normal back pain is in his hips and we already know those to be deteriorated.

It was easier to get exercise in Richmond because we had to leave our room to go to the dining room, television room, go get the car, walk to the clinic or do anything. We make a point to walk somewhere every other evening at home.

It's so nice to be in our own bed and be able to walk into the kitchen for something as simple as a drink. It's the little things that really count after an experience like this.

Pete is eating and drinking well and being better behaved that I gave him credit for being able to do. Even though things are not exactly the way we had hoped they would be when we returned, he has done well at not getting upset or taking matters into his own hands.

My days are long even though I'm not following the strict guidelines in the book for cleaning as they describe, I'm still careful to clean the kitchen constantly and ensure that all dishes are always done. I change the sheets and towels much more regularly and sanitize my hands constantly. I find myself uncomfortable around other places where things aren't as clean and tend to look at everywhere I go with a magnifying glass. I’m back at work full-time and spending evenings doing cooking, dishes, laundry, walking with Pete, and trying to generally clean house.

By October 22, we should be out of the woods and able to return to normal. I can't wait to go out to dinner together again. We are planning a weekend getaway that weekend.

Improvement to Release

7/26/06 Wednesday (+12)
White count 2.4!

Pete's white count is high enough to be released, but he can't be released until diarrhea is under control. One nurse mentioned that the diarrhea will continue for weeks after he is released and suggested I buy Depends adult diapers.

At 10:40 Nurse R announced the Pete is now under contact restriction. A special box was hung on the outside of his door with a sign. It was determined that the diarrhea was not just a side effect of the chemo, but actually a common infection known as c-dif. Masks, gloves, and gowns must be worn when entering room and disposed of upon exiting so as to not pass this on to other patients. I suspect that most of the other patients have already had this as I have seen these boxes on almost every door earlier in the week. He was started on an additional anti-biotic especially for this and should see relief within 24 hours or so. He will take the anti-biotic for 10 days and will still be released in the next day or two.

I made a rush trip home to Roanoke to get some additional supplies and get prescriptions filled at our local Williamson Road Pharmacy rather than paying higher prices in Richmond. Pete has been approved for medication from the pharmaceutical companies, but the drugs will not arrive for another week or two so we must purchase a 30-day supply of everything. He will continue to take several drugs until the 100-day post-transplant period is over.

7/27/06 Thursday (+13)
I called from home and talked to Peter and he sounded good. He said the bathroom situation was much better. I called later in the day and talked to Nurse R who told me Peter was improved and that once he could show that he could eat solid food and that he's exercising he will be released.

7/28/06 Friday (+14)
I hurried back to Richmond and prepared to move to the transplant floor at the HHH and a new room before unloading all the new supplies from the car. I was told that we would not be moving after all and that we kept whatever room we had. I asked for a recliner to be provided so he could sit back with his legs elevated and nap if needed. I was told that the furniture in each room could not be changed.

Peter was doing remarkably better and seemed to be a different patient than 24 hours earlier! He was eating, showered by himself without help, and walked two laps on the floor. Things looked hopeful for release tomorrow.

7/29/06 Saturday (+15)
Peter is feeling much better and eating fine. The doc asked if he would be ready to go home. Peter had told me the day before he would do anything to get out of those four walls, and now was almost hesitant. I told the doc he was ready. He questioned me and I told him that I wouldn't tell him that if I didn't truly think he was. He said he realized that since I had just questioned him the week before about releasing him to me too early. He said he wanted to see him walk to be sure so Pete made two laps on the floor and the doc was truly impressed.

We packed up the room and rolled up the eggcrate mattress for use at HHH. I made two trips to the car with everything. Pete wanted to rest for a couple of hours to see if had anymore bathroom action. The hospital staff seemed anxious for him to vacate as there is a huge amount of work to do when a patient leaves the BMT floor. Everything in the room is thrown away. Phone, stethoscope, leftover supplies. We finally left about 2:00 and Pete asked me to drive around the city. I did so and then we returned to the room so he could take a nap and I could unload the mountains of supplies from the car.

7/30/06 Sunday (+16)
We had to catch the 9:00 shuttle as there are only 3 shuttles on weekends and we are told the noon one doesn't really count as they rarely show up as scheduled. Peter had a bowl of cereal with no Lactaid that was suggested and enjoyed a glass of orange juice. He had no side effects or problems. He said it tasted great.

We took the shuttle to the outpatient side of the BMT floor. His vital signs were taken and labs drawn. The nurse explained to us that the standard procedure for outpatient visits were to guess what might be low in his labs and give that to him while waiting for the labs to be completed. She said that on weekends, the labs are returned more quickly but during the week they can take as long as 3 hours.