Reflections

I actually had to look on my computer just now to see what day it was.  I can’t believe it is already Friday!   Sunday, Hannah was playing with her toys, cuddling, and just being Hannah.   Today, well, you know…

I was able to get a room at the Ronald McDonald house upstairs from the PICU last night.  It was the first time in 4 nights that I had spent the night in a real bed.  This place is wonderful.  I have been taking advantage of their “nap rooms” for the past two days, between 1 pm and 5 pm, I can come and take a nap and a shower.  However  the first night in the ICU, I was not able to get a room because they were full.  There are only 5 rooms for the whole PICU area (the real Ronald McDonald House is about a mile away, this is just an inhospital one), and I felt like I won the lottery last night.   I crashed around 11:30 pm and did not wake up until 7:30 am.  I feel so much more refreshed.

She is stable still this morning.  It was such a relief walking into the PICU this morning and just seeing her comfortable.   The night nurse had given her a bath and washed her hair and then put her hair in pigtails.  She looks so adorable!   The nurse said that she did great all night with no issues.  They are suctioning a lot of ‘junk’ out of her lungs, which is great.  She still is running a fever, but it is still within the 99.8 to 101.8 range, which has been her norm during the last few days.

The doctors did their rounds just a bit ago, and the plan is to just let her rest.  They are going to try and wean down her oxygen from 40% to 20% during the day to see how she tolerates it.  She is also on full feeds right now, at 40 mL an hour, which is fantastic.  The nurse tells me this morning “Well, we do notice she is a bit gassy today.”  I laughed and said “Oh, that’s normal.  So she MUST be getting better.”  She also had her first poop in 5 days, so we know she is okay in that department!

The nurse nicely asked me to leave this morning.  As soon as I walked in and started talking, Hannah became very agitated.   I was with her, and she looked straight into my eyes.  Instead of seeing this little catatonic stare for the past 3 days, I saw life in her eyes.  She saw me.  She knew who I was.  She wanted her Mommy.   So I plan to just be very low-key around her today just to give her more rest.

On a separate note, yes, we are still planning to move in 2 weeks.  But obviously there have been a chance in plans.  Hannah is going to be here for a while.  It could be up to a month or so.   The plan now is for Daddy to drive with Ethan, Abby, and the dogs to Vegas, as planned on 6/4.  They will stay with my inlaws and start their life in Vegas.  Thanks to my father-in-law, we have a house all secured for us, and he is working on getting all the utilities and everything going.  Once Daddy gets to Vegas, he will fly back to be with us for a few days.   I will stay here with Hannah as long as she is here.  Hopefully, they will move her upstairs within a week.

This is the best plan for Abby and Ethan.  They get to finish out their school with their friends, as we have prepared them for.  Then they will be completely distracted by being in Vegas with their grandparents, cousins, aunts, and uncles.  My family lives just 5 hours from Vegas, so they can come out and visit with them as well.  Let Abby and Ethan start their summer and have fun.

It is weird to think that I will never see my house again though.  Daddy has already packed up Hannah’s play area and will be packing up her room today.

But this is for the best.  Because of Hannah’s “delicate” state due to the Gaucher’s, the docs here are not going to discharge her until she is really ready to be discharged so that the odds of her having a setback after discharge are less.  They will not discharge her early and let her recover more at home.  When she leaves here, so I have been told, she will be strong enough to leave.

I have mixed emotions about leaving the medical team she has here even more so now.  She is in the best place she needs to be.   But I also know that I have learned quite a bit medically from this experience, and if it were to happen again, I know exactly how to help guide the docs in Las Vegas in terms of what worked this time.  It is not like Vegas is a rural hospital area or anything, but it is not TCH.

Last night, Ethan and Abby came for dinner and a visit.  My gosh, did I miss them!  I know they missed me, but I think I missed them more.  They spent about 3 hours here, and we were able to hang out in the family area of the RM house.  Abby and I spent some time chatting in the “quiet room” because she has been missing me really bad.  Yesterday at school, she was crying and told the teacher she wanted to talk to me.  Her teacher could not get hold of me, so she called the house, and Abigail was able to talk to Daddy.  It helped.    Daddy is going to bring them by again tonight for dinner and to hang out.

Off to take a shower in my RM house room.  I have to check out in an hour.  I hope, hope, hope that I get a room again tonight, but I am not holding my breath.  Just getting this one last night was a huge break and gave me the rest I needed to keep being there for my little girl.