Wednesday, April 11, 2012

Good Days!

We are sitting in the hotel, enjoying some sunshine and people watching. The place we originally booked got complicated and flaky, so on Monday when we were surprisingly released, it was a bit of a scramble. But the accessible room we found was more than perfect and only cost a little bit more. It is substantially nicer. It is really a challenge to find accessible rooms in the city for a week, on short notice. I was quite frazzled by the complexity of the Hilton reservation department. We had a reservation, but no single guarantee of a room. OUCH. What? seriously. They could no longer guarantee our room? Frustrated I got on the computer, began calling and found a wonderful Marriott in the heart of the business district in San Francisco. They were more than happy to accommodate us. Thanks Courtyard by Marriott! You have been treating us beautifully. They care, and are happy to appease even our silly requests. Pillows, towels, fridge, chairs, microwave, you name it- they are happy to help. Even the cleaning lady was so impressed at Joel's improvement today~! That my friends is service!

Since we have been busy and I was exhausted, I will catch you up on the last few days.

Monday morning, Joel still had not walked much, nor had he seen PT. The day shift nurse was understandably intimidated by Joel's size and we had to wait for PT for walking. Which meant, potty on a commode. Yep, Joel isn't a fan of these. Can't say that I am either. Better than a bedpan I guess?-- Multiple staff members felt that Joel would require inpatient rehab. We were a bit frazzled by this prospect as we hadn't planned, and I probably wouldn't be able to stay. Besides Joel isn't even thirty, the mere idea and concept was depressing. So PT got to make the final call. She got Joel up. He walked the halls with swagger, and she announced we were far to good for inpatient rehab~ Booya. I was happy and so was he! So we ran at the first mention of discharge. Literally. I ran. We are so happy with the care we received, It was quite remarkable. UCSF really is a different place than Riverbend, but still a friendly caring environment. It was fun to have a variety of people caring for us. New faces, beautiful stories, unique experiences and caring hearts.

We took at taxi to the hotel, and were offered many hands of help along the journey to our room. From removing our luggage from the taxi and taking it to the room. To instantly bringing pillows and quickly delivering dinner. Our room did not have a kitchen like our other room we attempted to arrange, but a fridge and microwave were delivered free of charge. The room is accessible, has a king size bed, a shower that has a seat, safety rails and my surprise included an in room soaking tub. Yep- not for Joel but after sleeping in the hospital it was awesome for me. The cost was only a little bit more a night,  but we are thankful for the comfort this place offered. Plus they guaranteed me a room. (Thanks Hilton! Marriott!!)

We slept beautifully that first night. It was a bit rough as I was exhausted, as was Joel. I was thankful the hospital pharmacy really was quite helpful in the medication schedule paper work they sent us home with.

Tuesday was Joel's birthday. We had a wonderful morning together, walked the halls of the hotel, washed laundry and spent time getting settled into our home away from home. Dear friends brought Joel and I a special birthday dinner, and cupcakes! Thanks Viles Family! Not only was it wonderful to see  friendly faces, I ate more bbq goodness then I think I had eaten in days.

We are so thankful for the love and messages for his birthday! We are thankful that due to such a successful surgery, guided by the hand of God, we are going to have many more birthdays!

Wednesday- Today. We had a relaxing morning, complete with Joel moving  more fingers and regaining more muscle strength. We had a small load of groceries delivered to the hotel, so our mini fridge is stocked with our own foods. You can really do a lot with a microwave...

Here is our room/shower and the trolley from our window this morning~!

We walked downtown. Joel did amazing. I am so proud of him! We needed to run a few errands, and Joel was eager to come along.

Our neuro-oncologist also called us, we have awesome news. The tumor remains a grade 2 oligodendroglioma. This is the same low grade cancer that we were already diagnosed with in January. Our doctors are very positive with us. They feel  like the amount of tumor removed is nothing shy of remarkable. Dr McDermott is continuing to be pleased with the results and has communicated them with numerous Drs. We are really looking forward to our next appointment.

We are doing well here, San Francisco is really a beautiful city. Our view is fun, and more entertaining than television. Princess is doing well at home, but we are starting to really miss her! We have been using Facetime, which is great, but I think it only makes us miss each other more. This is the longest we have ever been apart, and the farthest.  We can't wait to be home.

Coming up there will be a papas pizza fundraiser to benefit us. We have been supported so generously by friends and family, but bills continue to pour in. More information to follow. We may turn it into a birthday party for Joel!

Continue to pray for more strength and energy for Joel. Pray against seizures, as we have avoided them thus far- but we are decreasing steroids already. Pray for his stomach. This is seriously has become a problem. All of the medications and antibiotics have been hard on his system. Pray for our little Princess, she is doing well but this is a challenge for her. Pray for continued clarity and wisdom as we continue in this journey.

We are so thankful for all the love, prayers and support.

If you have a second Joel would love a birthday card- Our address is still on the side!


Anonymous said... grateful for the good report! will continue in ayer...

Sherrie said...

Marriott is the best...I have used them for several years. So happy to hear things are stable and improving. I'm glad you are still close to medical care while in this transition period. Thanks for the great update.