I was awake at 4:30am.  I started a load of laundry because Cait wanted a certain pair of pants clean.  At 6am, Naomi’s labs finally came through to my app.  Her total white blood cell count more than doubled.  Her ANC was now up over 300, just about doubling again since yesterday.  So, the plan to release her today went into action.

Upon waking, Cait decided that the now clean, dry and folded pants were no longer acceptable and she was to wear her blue dress to celebrate Naomi’s release.  Unfortunately, the blue dress had to hang to dry and was not ready to be worn.  That set off a fit of epic proportions that made us 40 minutes late to the hospital and caused me to miss rounds.  The fit included multiple sets of clothes strewn around the room as she couldn’t find anything acceptable to wear on the day of her sister’s release from the hospital.  I was a horrible mother for not shrinking and causing the dress the pill….  Naomi texted Cait that she was beautiful no matter what clothes she had on and to hurry so that she could help Naomi pack.  That did the trick because Cait then chose her cat leggins (for Naomi) and a comfy shirt (for herself).

When we arrived at the hospital, the Dr. said that she would receive a red blood transfusion, hopefully her last, and her G-CSF and daily antifungal before release.  The nurse case manager arranged a delivery of home infusions and scheduled a home nurse to visit and review the procedures with me.  Her discharge was proceeding for sure!

 

The day seemed to last forever, so there was a lot of anxious goofing around.  All of the girls were giddy and almost constantly goofing around…. Naomi had a moment early in the day where she refused to eat because she wanted to leave NOW…. and she was angry that discharge was going to take so long…. and she thought she should be released immediately.  The anxiety was obviously getting to her.  In moments like these, I have to be realistic with her and tell her that I understand how she is feeling but she should snap out of it.  She did just that, finished eating, colored her puzzle (yes, a puzzle to color), and played with her sisters.

I packed up the rest of her things and took them over to the RMH so that we could enjoy our walk when she was finally released.  She requested some last photos of her room…

When she was finally disconnected from the pole and IV, she was so happy!

The last thing before she was allowed to leave was that Naomi needed to have the caps on her line changed which required everyone in the room to wear a mask.  Usually, I would take the little ones out while this was happening but since I am being prepared to take over a lot of Naomi’s care including flushing her lines and adding heparin, I was unable to take the little girls out.  Sinéad looked pretty cute in her mask!

We were on our way out of the hospital around 4pm.  It seemed surreal.  There was no elaborate tunnel like her first transplant.  There were a lot of instructions for what to look out for and who to contact should we have any issues.

Naomi is being released on Day +20 – this is a full week earlier than her release from her transplant in 2014.  Her physician said her cell count is rather low.  He likes to see about 100 cells on the slide and we are only counting 45.  This all equates to a rather weak immune system.  So, we will be taking a lot of precautions.  She will have multiple clinic appointments a week, but Tuesday will be our first day OFF in over a month!  She has no appointments (except a visit from the home nurse to train me on her injections to be given through her line) so we can stay at RMH all day.

She thought the cool air felt so good.  She said that after being inside for a month, the air felt nice on her skin.  She had been admitted on 2/27/17 and discharged on 3/27/17.  Also worth mentioning is 3/27/14 was the date we left California to go back to Nevada after her first transplant.

The skywalk between the RMH and the hospital is uphill going to the hospital and downhill going to the RMH.  Caitríona and Naomi both ran most of the way from the hospital.

We stopped at the front desk for deliveries and mail.  Then we went to our room.  She changed out of the dress she had saved for the past month – she never wore it before and saved it for release day.  We opened some boxes from friends at home.  She loves this headcovering.

There was also this fantastic banner from our church friends in las Vegas.  It gave me chills to read all the wishes and greetings to Naomi from all her friends.  I hung it on the wall in the living room.

We went to the lobby of the RMH for some downtime before dinner.

Sinéad very much enjoyed some time in the playroom.  I had kept her out of there until Naomi was released because I knew that once she got in there, she wouldn’t want to leave.  It is like a dream playroom with toys of all types to keep her playing for hours.  There are chairs in there for me to sit and knit which is exactly what I think we will do on Tuesday.

From the playroom, I can see into the living room where Cait and Naomi like to play on the piano.  Sinéad goes in and out of the two rooms freely.  The common rooms are so spacious allowing a lot of room for the children to be children.  It is truly wonderful.

Upon returning to the room, we made Naomi’s bed with the bedding provided by the RMH.  There was a pillowcase, sheets set and quilt all bundled together and tied with a string.  When we opened the quilt, to our sheer amazement, we saw St. Bridget crosses!  St. Bridget is my Patron Saint.  When I went through RCIA, I accepted her as my Patron Saint and credit her with the success of my midwifery career and me heeding the call to pursue midwifery while still in the trenches of raising kids and homeschooling.  St. Bridget is a saint of Ireland, and also a protector of mothers, nurses, children, infants, midwives, homemakers – all the things in life that are near and dear to my heart.  I was blown away.  This was another small way that we have been reminded of the protection and presence of God  through this time.  Throughout our home, we have St. Bridget crosses that are made by Aaron.  They are hung over multiple  doorways of our home.  The idea is that as a person walks under a St. Bridget cross, he or she is receiving the protection of their health.  How appropriate that Naomi is sleeping under a quilt of St. Bridget crosses while here at the RMH?  Amazing.  God is in the details.

With no 4am labs, and no 6am results, we all look forward to sleeping tomorrow morning.  Meds start at 9am and I already have the week’s meds all sorted in the pill holder.  Tonight, I prepared the meds, cleaned up some of Naomi’s things from the hospital, unpacked some boxes, organized the walk-in closet and folded all the laundry.  It isn’t home, but it will certainly do.  Tonight felt more normal than a night has felt in months.  I am so thankful she is back under the same roof as me and has an ANC again and is improving.