Made of Gray

Post-op Day One

Raising the Rare ChildHolly D. Gray5 Comments

Our day has been very busy and full of intensity. Time flies when you're watching a precious life. 

Caleigh continues to need two blood pressure medications and she's reliant on them completely. She is needing what they call fluid resuscitation. Meaning they are needing to replace her fluids to keep her heart rate down and blood pressure stable. She'll stay on the regular vent for at least a few days until her third spacing decreases. This is where your fluids go into your tissues instead of out of your body through urine. It has happened with each and every one of her ten bowel surgeries. 

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Her epidural is turned off but still in place. It may have been part of the dropping blood pressures this morning. They are hoping to be able to use it in a few days when she is more stable. She's on morphine and versed for pain as well as a muscle relaxer for procedures when needed. She has had a high fever all day that broke once and is creeping back up. She's on two different antibiotics due to the risk of infection. 

Caleigh's blood pressures are up and dramatically down then back again. She's sensitive to movement, repositioning, tube movement and any medication adjustments. They are watching this closely. It provides very intense and quiet movements for everyone when the cycle starts. 

She now has 2 PICC lines. One for each arm with a total of 3 lumens or access points. It took 2 hours to get the newest one placed. This provides the access they need for all the meds and interventions. They will be starting TPN this afternoon and nothing by g-button at this time. This afternoon they started a bag of plasma as well. 

The next 72 hours will likely be rough for Caleigh. She is already showing fluid around the outside of her lungs. This was discovered by a chest x-ray during the PICC placement. The third spacing will continue over the next few days until hopefully her body starts to rid itself of the excess fluids through urine. So far she is producing urine well. Her abdomen is distended and visibly tight but still soft. This is something they are checking often and measuring. 

This will be our update for today unless something else pops up. For the moment Caleigh is resting comfortably due to the massive sedation from this morning. 

Eric and I are obviously exhausted and worn out. We're running on adrenaline, cafeteria food and Starbucks. So far it's working. We've had little sleep, but are taking turns resting when we can. Eric will return to the Hospitality Homes apartment tonight to get some good sleep. We are able to park our car at the hospital for free and at the apartment for free. It worked out after all. I was able to get a 30 minute chair massage through the family center and I slept the whole time. It was wonderful. The CAIR team social worker is taking care of us and getting meal cards for the hospital as she can. Meaning we aren't paying $30 for 2 salads and 2 bags of chips. Eric and I are older and wiser this time around. We know to rest now while she is being taken good care of because once Caleigh is up on the floor, hurting and upset there will be no rest.  

I can't even comprehend the amount of love and peace Eric and I are feeling. We try to read all of your comments, prayers, post sharing and countless encouragements. Although we eventually read everything, there just isn't time or energy to respond yet. We'll get there. All of it lifts our spirits. 

Thank you for your prayers. 

Thank you for your support. 

Thank you for your positive thoughts and encouragement. 

Thank you for lifting our daughter up and loving our family. 

We really feel blessed to have you in our lives. 


Details for mailing a letter or card to Caleigh... We think this will be a great motivator and such a wonderful source of positivity for Caleigh's recovery. If you have any questions about this don't hesitate to send me a message. Depending on when you send mail, Caleigh will either be in the MSICU or on 10 South. You can read more about sending mail to a patient on Boston Children's website.

CALEIGH A. GRAY
7 SOUTH / 10 SOUTH
BOSTON CHILDREN'S HOSPITAL
300 LONGWOOD AVENUE
BOSTON, MA 02115


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