Saturday, April 18, 2015

Getting released!

We are happy to be together today.  So happy that Dr. George says we can go home!  Hanna is going to be the next intern at the hospital.  Hayden got into his wheelchair with dad and the physical therapist.  

We love Morgana and Dr. George.  They have been our favorite for 6 years.

Friday, April 17, 2015

Post surgery and service

It is hard to summarize all that we've been through in the past two days and starting day three.

On Tuesday prior to coming to surgery, we had a fun day together with my boys and our little monkey while we enjoyed the children's museum.
This picture is somewhat symbolic as we climb to the top to overcome the challenging ropes of the surgery.

Earlier this week we were also visited by a very special foundation that grants wishes for chronically ill children. This is just a teaser of more things to come. It has been a wonderful experience to start and have something to look forward to as Hayden recovers.

We were also blessed by my in-laws, Ralph and Gwen, who drove from New Mexico to come and take care of Garrett and Hanna so that Scott could work and I could focus on Hayden in the hospital.

Many hospital trips for Hayden not only affects him but also his siblings. It is good to see that special attention is being made for them so that they may continue and have joyful experiences.

As a testament to blessings and prayers offered, Hayden did remarkably well the first day immediately following surgery. Thank you to so many that prayed for not only Hayden's well-being and for our family's, but so that the surgeon would be inspired and that his hands would be guided to be used at the best of his ability. The surgeon, Dr. George, said the surgery went as expected and that he did well. He even made a bandage for Curious George to match Hayden's back.

Hayden came out of anesthesia better than normal. He did not vomit or cry with delirium. He was alert and received many visitors. 

We are fortunate to have such a great family and church family that has taken care of us. Two of our friends that are nurses in the hospital came to visit him as he recovered from surgery. Many friends from school and church came to visit the first day as he was alert and happy to see familiar faces. I only got a few visitor pictures but they were all equally appreciated.
The volunteers that come through with toy carts and dogs are fantastic!
This day Hayden had a visitor from his school nurse as well as two friends from church bringing him stickers and to deliver rockets. He's gotten his share of balloons, chocolate and toys to make it tough to haul home.
Hayden's sweet church primary class made him a book of well wishes and supplied him with some toys and coloring books.

Late in the evening after anesthesia wore off, the pain settled in and it made for a long restless night. 

For those of you that might at some point in your life go through tethered cord surgery, here is my best advice/tip for managing pain. Often for those that are in wheelchairs, a protective responses is to bring your knees to your chest and curl up.  That is terrible thing to do when trying to heal by not stretching the incision.  We found that knee/leg immobilizers coupled with muscle relaxers help relax the legs to lay flat for the healing process. Secondly, when you have limited sensation in your feet, it is always good to ask to have the IV placed in the foot so that administering medicine throughout the night does not disrupt sleep and creates a little less anxiety for regular hospital trips.

By the second day the medicine managed the pain enough to where Hayden rested with the help of a fabulous machine from the hospital that projects onto the ceiling and has bubbles and mirrors and lots of sensory items for those that cannot move from their bed.

Today is day three. Hayden is increasing by 10° in the prone position with the ultimate goal of sitting in a 90° bend. The incision site looks good. There appears to be minimal cerebral spinal fluid drainage and trace amounts of blood. Neurosurgery believes that we may be discharged Sunday evening or Monday if he can achieve his physical therapy goal of being transferred into his wheelchair so that he could be cared for at home.  Currently he is in a lot of pain just rolling from side to side with assistance. We will not be rushing his recovery as slow and steady is the best course of action in regards to recovering from spine surgery and scar tissue. 

I want to acknowledge that while having a special needs child has a special and unique set of challenges, it has many rewards.  As a parent we can ESPECIALLY partake in profound spiritual enlightening experiences, we are provided experiences to grow depth of our own personal character, it provides joyful rewards by witnessing Christlike attributes and actions in others, and every day that we are blessed to have with our child, we are humbled and inspired by the grace of a spirit that is patient, meek, strong, brave and innocent.

We have been overwhelmed with feelings of gratitude by those that want to offer help and have offered many encouraging and caring words. I am not eloquent enough or organized enough to receive or orchestrate how to utilize this help. There is a fantastic article written by someone with a far greater skills than mine at summarizing how you can help.  I have attached it for your review. 

Thank you so much for all of those that have helped and spared this mama from stress eating terrible hospital food by providing good meals for our family and for me being in the hospital caring for Hayden.  Thank you for those of you with your good intentions and good humor.  Our burden has been lifted by some silly friends too who send me these inspiring belly laughs.

Attention mothers of differently-abled children:
Lastly, I have been feeling less than normal. It is difficult for me to find the words that I want to use and I have found my memory to be slipping. It was great to see this article published recently and provided me a little validation.  (Reuters Health) - Mothers of kids with disabilities might be more forgetful as they age than other mothers, according to a new study that suggests the stresses of parenting a disabled child wear on mothers’ minds over time....

Wednesday, April 15, 2015

Tethered Cord surgery #17

This is Hayden second tether cord surgery. 
Last night, Ralph and Gwen made the trip from New Mexico to help us take care of our other children while Hayden is in the hospital. I married well.  

We are so grateful for the support and prayers of our family friends and community.

Hayden's first tethered cord surgery was 18 months ago. He is six years old. We left our home at 5 AM for a 7 AM surgery.  His mood was joyful this morning.  He has quiet courage and a peacefulness about him.  His doctor, nurses and anesthesiologist know him well. He is in good care.

"Without the rain, there would be no rainbows." Gilbert Chesterton