Mama Meltdown

I've posted some of this on Facebook and/or twitter so if you've already heard it, please forgive me.  I kind of had a melt down today.

Several things happened to build up to my meltdown. Like the straw that broke the camel's back. Several straws were loaded on his back before the last straw.  Some of my "straws" were big.  Some of the straws were tiny.  But they added up until I finally spoke up. I'll list my straws below.

But first, please know that we have received wonderful nursing care here. The medical staff is fantastic. In my opinion administration could use some help, but they deserve some kudos for hopping into action when our concerns were voiced. As you'll read after my ten "straws," most of the important things were resolved this afternoon.

  1. Not in the BMTU. We followed doctor's orders to arrive directly at the Bone Marrow Transplant Unit (BMTU) Friday morning. Upon arrival we learned that Lorelei's room would not actually be in the BMTU.  They told us there is construction going on in that unit for the next several weeks so she's in a room "close" to the unit.  I was worried about the quality of the air since I know that burn units and BMT units handle air very differently than the rest of the hospital.  But I didn't really have a choice, did I?  We couldn't delay her transplant.  And the doctor didn't seem to be concerned about her room.  At least the nurses would be BMTU nurses.
  2. Water and Ice. They told Lorelei not to drink the tap water--only bottled water.  So, I asked about the ice they had brought her.  Where was it from?  Turns out it was "normal" ice from a regular unit and not the filtered ice from the BMTU.  So, she's not using ice.
  3. Plumbing leak. Then we noticed the water supply in her bathroom was leaking water all over the floor.  The nurse discovered it Friday but it wasn't fixed till today. 
  4. Space to walk. The physical therapist (whom we love) came to encourage Lorelei to walk and showed her the long hall available for walking. When we reminded the therapist that Lorelei is a BMT patient she said, "Oh, then you can't walk in that hall!"  Instead, Lorelei has an area near the west nurses station where she is supposed to circle--not near as many "normal" patient rooms. I'm glad we brought it up or we'd have been walking in a pretty dangerous area. 
  5. Crowded halls. The little circular area of hall where Lorelei is allowed to walk was cluttered with what appeared to be unused construction equipment and items that shouldn't be stored in hallways.  She had to dodge and navigate her IV pole through the items to make the loop. It just made me mad.
  6. Incorrect Soap. The nurse also mentioned that the soap in Lorelei's room was not the kind it should be.  Apparently they use a better quality of antimicrobial soap in the BMTU.  She requested it be changed on Friday.  It got changed today after my meltdown.
  7. Broken AC. Today (the fourth day of chemo) the air stopped flowing in Lorelei's room.  The room got very hot and the air was not moving at all. I asked about it and the maintenance man told me they had to turn the unit off because they had to replace a part.  It was out from about 8am to some time after 2:00. 
  8. Parking is a profit center. I left for a little while this afternoon since Brad had come to sit with Lorelei.  When I went to my car I had to pay $5 to get out of the parking lot. 
  9. Soft drinks cost $1.50.  There is no complimentary beverage offering for family.  Plus, there is ONE unisex bathroom available for family of the BMT patients.
  10. Admissions forgot us. This afternoon someone from admissions called the room asking for one of Lorelei's family to come down to sign a "Consent to Treat."  Are you kidding?  She's been treated for four full days already.  (We later learned that someone from admissions should have visited us on Friday and it just got overlooked.)

So, I posted my frustrated status on Facebook. People encouraged me to call hospital administration. I did. Then things started happening. Gloves and gowns hung on the door and worn by all who enter the room.  Fall risk band placed on her wrist. Construction debris removed from hall. Soap replaced. Water fixed. AC "fixed" or at least flowing. Admissions person visits the room and apologizes for being late and gives us a parking pass. Case worker comes by to introduce herself. PR person visits. And when we mentioned our concern about the air, the staff promised to look up the CDC's recommendations.

I looked them up myself. This is an excerpt from the CDC's report entitled "Hospital Infection Control in Hematopoietic Stem Cell Transplant Recipients"

"Backup emergency power and redundant systems should be provided to maintain room pressurization and a constant number of air exchanges in HSCT units when the central ventilation system is shut off for maintenance and repair (13) [BIII]. In addition, protocols should be developed to protect HSCT units from bursts of mold spores when air-handling systems are restarted after routine maintenance [BIII]."

As I read it, it seems evident that shutting off the air to her room would not have been advisable.  Perhaps if she'd been in the BMTU they would have handled the repair differently?

Anyway, what's done is done.  She's had four days of chemo. Tomorrow is a "day of rest" and the transplant will be Wednesday Oct. 24.  She can't be moved now.  So we are just following all precautions to keep her safe from sources of infection and praying for supernatural protection since she has no immune system of her own.

If you take anything away from our experience, please be vocal as you advocate for your family who are patients. We didn't speak up early enough.

Thank you for your encouraging notes to Lorelei.  Her spirits are good even though she is weak and tired.  She's such a trooper. I'm amazed by her every day.


3 comments (Add your own)

1. Lisa wrote:
My thoughts and prayers are with you Lorelei...I know what you are going through. My husband had a bone marrow transplant at 34. When re-injected with the marrow a nurse had him suck on lemon-drops, I think that will help you tomorrow because you get a tickling feeling in your throat from the marrow going in. It's not too bad - don't be scared. My prayers are with you tomorrow and through your fight. My husband had stage 3 cancer and has been in remission for 4 years now. This works.

Stay positive - your strength and faith is inspirational and is what will help you beat this.

God bless you,

- Lisa, Oklahoma City Thunder

Tue, October 23, 2012 @ 10:33 AM

2. Brenda Bennett wrote:
Lisa,

This is Connor & Brette Deimund's mom. I just wanted to tell you that my prayers are with you.
I don't know what you are going through, but I lost Brette in May, so I feel a similar pain.

I pray that you will be strong for Lorelei and that others will be strong for you.

I hope you all rest well tonight and everything goes perfectly tomorrow.

Blessings & Love
Brenda

Tue, October 23, 2012 @ 9:51 PM

3. Lori wrote:
Love you all and will be praying!

Tue, October 23, 2012 @ 11:51 PM

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Psalm 91:14-16

New International Version (NIV)

14 “Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.
16 With long life I will satisfy him and show him my salvation."