Naomi’s (Saturday) morning started out stressful.  I arrived at 7:50am.  She was awake and laying in bed with a pretty severe headache.  From just a few questions to her I’d put together that her blood pressure was high at 7am vitals, her nurse for day shift had not been in the room yet and her headache was pretty bad.  I waited patiently for a nurse but after a few minutes of seeing Naomi grow increasingly more uncomfortable, I buzzed the front desk to report she had a headache.  The nurse who answered said she would tell our nurse.  A few minutes later the BMT Dr/Fellow came in to find out what was going on, tracked down Naomi’s nurse and we proceeded to get her the care she needed.  Over about 45 minutes and a few blood pressure checks, Naomi’s blood pressure would continue to escalate from 130s/80s to as high as 175/104 and she would eventually have her head buried on my lap wailing in pain saying her pain was an 8 or 9 out of 10.  High blood pressure is not really unusual for the transplant process.  The steroids cause fluid retention.  The chemo requires increased fluids to be pumped into her body.  Those extra fluids accumulated in her body and caused the headache.  They gave her blood pressure medicine and changed her schedule to prevent this tomorrow.  They also prescribed some diuretics to help counter the fluid retention caused by the steroids.

Right after all the blood pressure activity, a Roman Catholic Chaplain, Eric, stopped by to visit and provide communion for us.  He also brought Naomi a very soft and cuddly bear.  She used it as a pillow and rubbed her face on it.  He also gave us some ideas for places to visit once we escape the big house and can return to the RMH and be on outpatient visits.  We look forward to that very much!

The rest of her day was fairly uneventful symptom-wise.  Mornings are by-far the worst for her.  We got all the drama over first thing and then her and I both napped for a while.  We read quite a bit of Echo while she got her chemo.  We completed the first part and started the second.  Will we finish by Thursday?

She was nauseous and asked for ice cream to help ease it and indeed got whatever she asked for.  I had to coax her out of her room today.  But then once she was out she had a lot of fun.  We began by hunting for dinosaurs.  There is a game sheet that we can get from the Child Life Specialist that is a dinosaur hunt.  We found 11 today.  I think there are 15 but we need the sheet and can’t get it until Monday.  It was an impromptu decision to find them when I needed a reason to drag her out of the room.  I did literally need to drag her out today, putting her shoes on her feet and starting to pull her machine slowly and waiting for her to follow me.

She sat on the rocking chair in the BMT family room for just a minute and I mentioned the exercise bike and her face lit up.  Then she started to peddle on the exercise bike.

Her nurse told her that she could remove her mask and then she REALLY started peddling.

Her care partner came by with the vitals machine so that she didn’t need to return to the room.  Her nurse was also with us at that time and we were talking about gymnastics.  I showed them some videos of her last meet in November 2016 and they were impressed.  So her care partner told her that her heart rate and blood pressure were awesome while she rode the bike and we proceeded to play with the vitals machine and bike watching her heart rate go up and down, but despite the early morning blood pressure problems, her blood pressure stayed perfect while riding bike!

Her meals today consisted of oatmeal with peaches and a fruit cup, the above mentioned requested ice cream for lunch, and 2 FULL plates of spaghetti with meat sauce and shrimp.  She actually ordered just 1 plate of the spaghetti dinner but liked it so much that she had her nurse order a second plate while Micayah and I were at dinner.

She was so sweet today talking about her Daddy.  While waiting for dinner to be delivered, she said, “I want Dad’s pasta.  I never knew how good Dad’s food was until I had to come here.  Dad’s food has so much taste and flavor.  This stuff here is just food.  But his pasta, and his chili and burritos.  Oh, I want a Sunday dinner from Dad.  Can he send it here?  That would be lovely.”  She then proceeded to eat the spaghetti dinner while looking at a photo of Mom and Dad.

We said good-bye to this pump today.  For the past few days, this pump has made us want to scream more often than not.  It is over sensitive and beeps about everything and nothing.  Yet, it doesn’t hold a charge at all.  We sat in the room waiting for it to say something other than “VERY LOW BATTERY <30 MINUTES TO SHUT DOWN.”  The nurse was kind enough to order us a whole new pump and it was a good thing too since you can see that it quickly started losing the little battery power it had as soon as we left the room tonight.

One night while Naomi was still at the RMH with us, a few ladies and their daughters were working on a puzzle in the dining room.  After dinner, Naomi started putting some pieces into this extremely difficult puzzle.  It was 1000 pieces and they were also irregularly shaped and various sizes.  It was such that they’d been working on it for a few days and couldn’t even finish the border!  Seeing that Naomi was a puzzle master, they said, “your daughter is ours.  We need her on our puzzle team.” And a friendship was born.  We would eventually spend countless hours with them staring at pieces.  Some hours we would be lucky if we collectively found one puzzle piece to fit into the picture.  It became pretty clear that we were not finishing the puzzle before Naomi was admitted.  The first few days Naomi was admitted, we actually talked about giving up the puzzle because we had days where we found like a piece per person.  I had ignored the puzzle on Tuesday, Wednesday and most of Thursday because it was maddening.  On Friday night, after a long day at the hospital, Micayah and I had a very good night on the puzzle.  We worked with Sherie for a while.  After Sherie went to bed, I took her seat and the new perspective allowed us to connect the bottom with the top.  On Saturday evening after dinner, the whole crew was there working on it so Micayah and I hung out and helped.  We finished it!  It so happens that this group of families will be staying at RMH until May/June as well.  So we will be starting a new puzzle tonight.

After finishing the puzzle, Micayah and I were headed to Naomi later than other nights.  The security desk told me that Micayah was not allowed to go back with me.  The RMH rule is that minors cannot be on the premises without me so he is supposed to be WITH me all the time.  But the hospital rule is that minors cannot enter between the hours of 8pm and 7am.  So, that created a dilemma.  We ended up being detained at security while I explained a few times why he was with me (can’t stay at RMH alone and I need to help Naomi prepare for bed even if it is after 8pm) and why I don’t have another parent with me (5 other children at home and Micayah came along because he is her donor).  I was extremely frustrated when the security guard said “is she having her transplant TONIGHT?  Why does he need to be with you NOW?”  It was very maddening.  Eventually, he was added to her list of people who can come and go 24/7 but I must always be with him and he is not allowed to sleep here.  That was never the intention.

I will be discussing the situation with our social worker Monday.  I need to make sure Caitríona can also be put on that list as she will be staying with me later this month.  We made plane reservations for Aaron, Sinéad and Cait to visit later in March.  When Aaron leaves, Caitríona will stay with me and Naomi.

When I finally got to Naomi’s room, she had herself ready for bed.  It was quite impressive.  When Micayah I arrived back at RMH we had technical difficulties.  The internet kept disconnecting me.  So this post is being made Sunday but I will post date it for archiving purposes.