Wednesday, December 4, 2019

Wednesday, December 4, 2019

Tonight's picture was taken in December of 2002. Mattie's first Christmas. Peter's brother and sister in law were living in Washington, DC at that time. So we went over to their house for a family gathering. Mattie was very familiar with this jumpy seat, as we had one in his room. But this one was right in the middle of their living room. Mattie loved it because he could stand on his own feet and check out what we were all doing. That was the one thing I noticed right away about Mattie.... he wanted to be independent and to move around using his own two feet. 


Quote of the day: The very worst events in life have that effect on a family: we always remember, more sharply than anything else, the last happy moments before everything fell apart. ~ Fredrik Backman

This is the photo Peter sent to me of his mom today. I think the picture speaks volumes as she is in the ICU and is unable to move. She is being immobilized. I did not understand the full extent to why, but after Peter spoke to the neurosurgeon today we all have a much clearer understanding of the problem. Barbara fractured several parts of her thoracic spine (T4-8) from her fall down the stairs. The thoracic spine is the longest region of the spine, and by some measures it is also the most complex. Connecting with the cervical spine above and the lumbar spine below, the thoracic spine runs from the base of the neck down to the abdomen. It is the only spinal region attached to the rib cage.

Fortunately, thanks to the insertion of a pacemaker on Monday, Barbara's heart is now stable. Stable enough for surgery. It was clear from talking to the surgeon that she really doesn't have any other option than to have a thoracic posterior instrumented spinal fusion. A mouthful no??? Well it is that or remain in her current position for six months in hopes that the spine heals and repairs itself. Not a viable option. 

(Picture is of a child's x-ray showing spinal fusion correction for scoliosis) 

The spinal fusion is the process of joining bones with bone grafts, adding bone graft or bone graft substitute to an area of the spine to set up a biological response that causes the bone to grow between the two vertebral elements and thereby stop the motion at that segment. Instrumentation includes implants such as rods, plates, screws, interbody devices, cages, and hooks. 


It is important to stabilize Barbara's spine because a portion of it is out of alignment and is very close to the spinal chord. Which is why she has to remain in ONE position and can't move. Movement could potentially damage her spinal chord and lead to paralysis. Needless to say, we all want this surgery as soon as possible, but apparently the OR schedule is quite full this week and her surgeon isn't sure they can get her on this week's calendar. 

Peter and I may not be well versed in Barbara's particular issue, but we certainly know our way around a medical system and know how to get things done. Which is exactly what is needed during such a medical crisis. Health care providers are bright and they quickly assess whose who in the family and their involvement. Needless to say, Peter and Barbara's nurse have become pals. 

Meanwhile today I went to MedStar Georgetown Hospital for my follow up appointment from kidney stone surgery in March. Every time I visit the hospital, I walk through the Children's Art Gallery. This Gallery opened while Mattie was in treatment. Mattie loved that space and added several pieces to it. With each visit, I always love going by and seeing Mattie's art. However, during my last visit, all of Mattie's art was taken down. It wasn't there and I truly was saddened by this. As Mattie lives on through his art and for me his connections with his medical caregivers. 

But look what I found today! Mattie's Lego story is back up and in a prominent location! Next to Mattie's story is the collage I created for the Gallery. Somehow these two pieces are always paired and displayed together! 

See what I mean! Not that Mattie's art brings Mattie back, but I have to say it means his life and his journey is not forgotten at Georgetown. 

Mattie's story! This story was once accompanied by a Lego display. Mattie designed "the perfect children's hospital space/room" all in Legos. 

This photo was taken in March of 2009. The grand opening of the art gallery. You see Mattie's story and his Lego creation next to it. In fact the story and the Lego creation go together.