Monday, April 21, 2014

Through Henry's Eyes - Update

We have had some fun and productive few weeks since I last wrote. First of all, Happy Easter from our family! We hope yours was a blessed one...ours sure was! We remembered our Savior's death on Good Friday by participating in a community worship service, coloring eggs and watching Jesus videos on Saturday, then celebrating our resurrection hope on Sunday in worship and then an Easter egg hunt. We also had a yummy Easter ham dinner together at home. 
The whole week as we prepared our hearts for the weekend, Henry asked so many questions about it. It was really special to see the events and Easter story through his eyes. He was truly touched at Jesus love to die for us and wanted to know many, many details about everything. One of my greatest joys was watching him joyfully wave a palm branch at church last Sunday and then a strip of white linen on Easter Sunday. He truly got into every aspect of the season and it was an extra special Easter for all of us.

Spring break was a special time for our family to play and make memories, without the distraction of work and school. It was also a week of many "firsts" for Henry as we vacationed at the beach- first beach, first kite, first ocean viewing, first lighthouse, and more. We had some beautiful sunny days at home to play so Henry enjoyed his new sandbox and toys given to him by friends. Then, the boys and I had fun at the Hands-on Children's Museum. Enjoy the photos!

For more medical news, we had a very full, informative visit to Shriner's and OHSU on Thursday in which Henry had: a MRI on the rest of his back, blood drawn, a spinal doctor visit, measurements taken for his post-surgery halo & vest, and pre-surgery consultation at Doernbecher Children's Hospital. All of that with the drive back made for a very long day, but I was so glad to learn all that I did. It takes a couple days for me to recuperate following these trips:). The information can be overwhelming for me so I can imagine it may be for you as well, but here is a summary:
  • According to the spinal doctor, Henry's body is very complex!
  • The spinal doctor, neurosurgeon, and facilities are some of the best Henry could have working on him; but that also means it's difficult getting all of them together at the same time!
  • The earliest c-spine fusion surgery for Henry would be June 2nd. The doctor actually has three other small patients with spinal instability, so if any others are deemed more critical, he could actually be pushed back to a later date. We hope to know for sure in the next few weeks. 
  • Intubation for a child, and anyone with dwarfism and/or fusions at the neck, can be very dangerous and difficult, but after questioning staff, I am assured that they have the experience and understanding necessary to make this as smooth as possible for Henry. The Doernbecher Children's Hospital at OHSU is ranked one of the best in the country and after seeing the facility for myself, I am so thankful Henry is receiving care there. 
  • One of my concerns was what bone they would use for the fusion and I found out that they will take bone from Henry's lower back, so he will have that incision as well. Using his own bone versus donated bone increases the success rate of the fusion.
  • I have been prepped with what will happen around Henry's surgery...if everything goes as planned, he will have about a 4-hr surgery during which we will be prepped to care for him upon returning home, and he'll be fitted with his halo and vest; he'll stay in ICU the first night as his nervous system, breathing, etc. are closely monitored; then he'll stay an additional 4-5 days to recover before cleared to go home. He will wear the halo and vest for 2-3 months as needed, then perhaps the neck collar for a time after to keep everything straight and protected. 
  • Ideally, then, Henry would not need to wear anything at the neck and be able to function as usual, except for more limited movement side to side and forward/down. 
  • On the other hand, the MRI revealed that Henry's central spinal cord is being compressed by his spinal vertebrae and will need surgery sooner than later as well. We will learn more and deal with that as it comes!
  • After seeing the eye doctor again and having a few eyelashes plucked, Henry will need minor surgery on his left eye to turn his lower eyelid out. Currently, the Asian shape of his eye is causing the eyelashes to scratch his retina. 
A later surgery date has its pros and cons for us means more spring to enjoy together before a huge life change and that Henry can almost finish preschool out. It also means less time for Randy or the boys to miss school should that need to occur, especially if the date is pushed out. However, it means more time for possible damage to occur while healing is postponed. It also means a very different summer for us! 

In all honesty, these kinds of things are so big and present too much unknown that I can only process and take one day at a time. It also makes me truly appreciate each day we have together to just do the normal things we enjoy. I have no idea how our family will be affected through it all, but I do know that God is in control, is faithful and sufficient for all our need, and that we will surely GROW in ways we cannot imagine. We will also see God do immeasurably more than all we could ask or imagine (Eph. 3:20) to bring glory to His name and good to our lives. These promises I bank on!

Thank you so much for continued prayer. As you can tell by reading, we need it, all of us! I will keep updates coming as I have them. The Lord bless you all!

**UPDATE: Henry is firmly scheduled for surgery on June 2nd! Please lift up all the many details ahead.

1 comment:

  1. We LOVE the neurosurgeons up at OHSU/Doernbecher. When we had our foster son we were on a first name basis with some of them. You have to love the directions up there though "Turn left and go to the purple chipmunk" They will take excellent care of him and will get him on the road to being stable and safe. Prayers from Aumsville.