Finishing up round BMT

I can hardly believe it’s almost been a whole month since I updated Jacob’s story.  When I started, I hoped to write every day and then decided weekly updates would be more realistic.  Time sure flies…even when you’re not having fun.

I’ll try to fill in the spaces and catch up from close to where I left off.  So much has happened. Ups and downs…

On September 20, I went home for the night and woke up with a scratchy sore throat.  6 months of not sleeping, over doing it and stress, worry and fear had finally caught up with me. I decided I better stay away from Jacob.  It was torture for me to not be able to go back and be with him in the morning.  Josh missed work and stayed with him for the next couple of days, but had to go back to work after a few and it got complicated.  I drove John up to the hospital in the mornings so he could spend the day with Jacob while Josh worked and then I picked him back up in the evenings.  Driving to the hospital, knowing Jacob was up there and I couldn’t go in to see him was so hard for me.  After several days, Jacob started texting me every night and every morning to ask if I was better yet and when I could come back.  He begged me to come and promised that he would wear a mask the whole time and if I also wore a mask, he would be fine.  I just couldn’t do that because even if that worked for us, we have to remember all the other kids in ICS and I just couldn’t put them at risk.  It was really hard for us, all the way around.
            The good thing about being sick for those 2 weeks was that I wasn’t really too sick to not be able to do anything.  Although I couldn’t be with Jacob, I was able to keep myself busy and work on so much that had to be done.  As I realized how much needed to be done before Jacob could come home, I wondered if this was actually the Lord’s way of helping me get these things accomplished.  I’m sure He knew the only way He could tear me away from Jacob was to allow me to be just sick enough that I wouldn’t be allowed up there. Each day I prayed that I could get better fast and that Jacob would be Ok without me, but I thanked my Heavenly Father for the strength that I felt and all that I was able to do at home to get ready for him.

           My sweet friend Renae came all the way from Elko Nevada to help me get the house ready.  She brought her Bissell carpet cleaner and we did the carpets in Jacob’s room and the higher traffic areas in the house. We washed all the walls and the ceilings, the kids scrubbed the baseboards and we disinfected every surface in the house.  We took down the blinds and washed each slat, scrubbed the windowsills and vacuumed out dust in every corner with the shop-vac.  Under the fridge, on top of it, under the stove and microwave behind couches, bookshelves and under beds, we cleaned.  My vacuum cleaner broke the first day she got there.  Renae headed straight to the Oreck store to fix it only to find out it was “over the hill” and not reparable.  Well, my sweet sweet friend decided we had to have a good vacuum cleaner so after negotiating with the store, she got a great price on an almost new refurbished 2010 Oreck vacuum and bought it for me!  The new one came with Hepa-filtered bags and worked so well that it was actually fun to vacuum all the while knowing that I wasn’t spewing dust into the air.  I called the landlord to have the dryer vent cleaned out and set up an appointment to have the furnace serviced and all the air ducts in the house cleaned out.  I then installed filters on each vent. 

A wonderful somebody that I’ve never met, but knows us through my friend Linda donated some money to us this week.  The timing of that gift was so perfectly reserved for the needs we had at this time.  We found a great price on a super Air Purifying system for Jacob’s room and one for the upstairs.  Air Purifiers were recommended by the Bone Marrow team, but not “required”.  It brought me so much comfort to know we would be able to have that for Jacob and we put it to work right away, cleaning the air in his room.  It smells like the air after a rain shower in his room. :o)

After about 10 days, our house was pretty much converted to hospital standards and ready for Jacob to come home.  I was beginning to feel better, but still not comfortable enough to stay at the hospital with him.  I just went up to see him for a little while during the day, wearing a mask the whole time.  The days dragged on waiting for him to be well enough to leave the hospital.  The Dr’s set a goal of getting him home by Friday, September 30. Friday morning came and the Docs said he wasn’t ready.  His liver counts had been rising and he was still needing oxygen.  They would have to keep him through the weekend and continue watching him until the liver started working better.

Jacob was well enough to be able to go outside and part of his daily routine was going for a walk to be outside at least twice a day.  He needed to walk as much as possible and to breathe fresh air to strengthen his lungs, get his gut moving and improve his liver function.  The first time I came back to the hospital to see him, I had him meet me down in the garden area in front of the hospital.  It's a little but very beautiful garden with a pond full of fish and fountains and lots of plants, benches & birds.  This was the first time I had seen Jacob outside his hospital room in 6 weeks.  Seeing him there in the sunshine, breathing fresh air was a precious memory for me. I don't think he realizes how special this was to me and what it meant to see him that day doing so much better. 

 We really had to coax Jericho to get close enough to Jacob to get this picture of him.  With all the talk about me not getting close to him so I wouldn't get him sick, Jericho had decided that nobody should be close to Jacob so we wouldn't make him sicker.   He's really uncomfortable here with Jacob touching him and he's trying to pull away! ...too funny.  He loves his brother so much. And, it's amazing what he understands about all of this.

 Joshua enjoyed seeing Jacob too.  He hadn't seen him in a very, very long time.

I didn’t like being in ICS near any other kids or moms and it was good for him to get out anyway, so I started packing picnic dinners for him each evening.  This was an exciting idea to me and I looked forward to our little picnic every day.  I brought a beautiful quilt made for him by a friend of Noelle’s.  I made potato soup one night, chicken burritos another, PB&J sandwiches, dinner rolls and rice pudding, jello, crackers & cheese, power bars...anything I thought might interest him.  I always had a selection of various drinks for him too and when we finished our picnic each night, we took the extra goodies up to his patient refrigerator in the nutrition room…just in case he got the munchies late at night (yeah right…haha)  I brought the other boys up with me a few times and on Sunday, the whole family came including Noelle & Ryan, Nick & Vanessa with their baby Allie and even Jed came to picnic with us.  We brought the Frisbee and a football for the boys and they had fun racing around and playing on the grass.  It was so nice and felt a little like our Sundays used to be before cancer.  

Jacob did pretty good eating at our picnics although he had very little appetite and was very nauseous all the time.  By Monday, we had finally figured out that if he had a dose of Ativan before coming down, it helped him make it a little longer before the stomach cramps and nausea started.

By Tuesday, October 4^th, the Docs finally decided to let him go home.  Although his liver wasn’t completely better and he was still needing oxygen, not eating & drinking quite enough and very nauseous all the time, they felt he would recover better at home and released him.

Up next: …Home at last!