Monday, August 12, 2013

One Week post G-tube surgery

Uncensored, open and honest.  I have begun to type this post many times.  I am concerned about the tone that it will cary and portray into the future.  I would like it to read as unyielding optimism.  For now, I have decided to be in this moment and explain the uncensored, complicated version of where we are.

It has been one week since we came home from the hospital.  Hayden has had a few good days in a row.  I feel that while making that claim, I am walking on egg shells.  We have had many starts and restarts to a frustrating recovery. We continue to pray and hang onto hope and draw nearer to our Faith.  The heart-aching part is trying to find peace knowing that there is no "cure" to Spina Bifida.  This is a journey that is teaching us all along the way each and every day.  We believe God has a plan for Hayden's life and a divine purpose.

As educated as I have tried to be on complex medical matters, I can never learn enough.  The tests and surgeries have produced little answers, but Hayden's charm and determination is beginning to resurface which feels like the beginnings of recovery.  For those of my family and friends who are not religious, I have tried to address everything in an analytical manner and researched, read, called and spoke with every professional and publication within my reach.  For my friends and family of faith, it is my faith that leads me in the direction that I should go James 2:14-26.  It is during the quite times that I feel inspiration on where to go next.

Coming Home:
Getting released from the hospital was a complete struggle.  It took us a full day to go home.  We began bright and early cleaning the Ronald McDonald house where we stayed only to spend the rest of the day waiting for the all clear to go.  After Scott had made it to the airport to pick up my sister Julia, Garrett had developed a fever of 102.  I had to leave the hospital to take him to the pediatrician.  He was  diagnosed with a respiratory virus and I had to keep him clear of Hayden when we got home late in the evening.

The first three days that we got home are a bit of a blur with little sleep due to a sick baby and recovering toddler. Here is what the button looks like without invading Hayden's privacy.

Thanks to good friends, the help of a nurse (Dana), and the assistance of two sisters (Melyssa & Julia), we managed through the week and even went on a date.  Similar to the poems Footprints in the Sand, when I was suffering from anguish, sorrow, and defeat there were many footprints in the sand carrying our family and making our burden lighter.
This is what we got to come home to after an exhausting stay at the hospital.  Thanks to the Davies family!

Having 8 people in our apartment might be a housing or fire code violation of some sort, but we did it.  Hayden has made it one week at home and even made it out of the apartment two times.  His energy is slowly returning and he is looking more like himself.  This was his first outing going to the opening weekend movie premier of "Planes".

The tough news:
Last Wednesday we had a follow up with the neurosurgeon to go over the test results.  The results of the tests (MRI, Somatosensory Evoked Response & Brainstem Auditory) produced no notable findings.  This is good and bad.  The MRI did not show any more fluid in his syrinx and did not show blockage in his Chairi brain malformation.  That just means that the fluid in the brain and the spine is not pinched.

As we spoke with the surgeon, he said his gut led him to believe that the spinal cord that he had operated on Hayden at birth (myelomeningocele )was tethered and was creating nerve damage that was creating the many unexplained and escalating symptoms that Hayden has been having such as, eating, swallowing, increased scoliosis, decreased mobility, writhing, slowed growth, and loss of balance to name a few.  I had unfortunately been anticipating this for some time.  I may have been in shock as I was emotionless at this news.  Not even one week post G-tube surgery and now we are being told Hayden will have to undergo spinal surgery as soon as possible.

Hayden also has scoliosis.  It is unclear at this time if he will have to have rods put in his back to straighten his scoliosis or if by untethering his spinal cord from the scar tissue if it will straighten out on its own.  I have not felt worry about this yet as we work hard at getting him healthy from this surgery first.  tethered cord research with scoliosis

We have been strengthened by positive thoughts, messages, visits, good deeds, meals and all the prayers that keep us going each day.

Sunday, August 4, 2013

Day 3 post G-tube surgery

Day three Hayden's been doing so much better. The day started off with a great visit from his good friend Costa. Costa is the sweetest little boy that brought a special playful spirit to the hospital. and his awesome mom Reyna drove all the way in 45 minutes to her work on her day off.

A magician visited and volunteered his skills for the kids. Although they don't look amused, it was Hayden's first time sitting up and getting out of bed.

The day ended with the most fabulous surprise with a visit from his wonderful physical therapist Gil.

The best thing about the day was that he didn't vomit, he's regaining some strength, laughing and wanting to play.

Saturday, August 3, 2013

Day 2 post G-tube surgery

Thank you, thank you, thank you, for the special prayers and fasting. So far surgery looks successful. Hayden has been tired and taking his pain medicine and watching Thomas the Train DVDs. He has been cheered up by the many videos and pictures that he's been receiving from so many caring friends.

Thank you also to our friends Robyn and Michelle for taking Hanna overnight while Hayden went into surgery and made it such a fun slumber party play date for her.

Today Hayden was able to eat from mouth and from his G-tube. The first thing he ate was two bowls of chocolate ice cream and barbecue potato chips.

We are also thrilled that we've had the opportunity to stay at the Ronald McDonald house for this hospital visit making it so much better for our family.

The family that served breakfast at the Ronald McDonald house today started off the day with a wonderful prayer in memory of their nephew they had lost to cancer.

Hanna and Garrett both feel big that they get their own bed at the Ronald McDonald House.

The surgeon said that I had positively diagnosed Hayden with Aerophasia. The G-tube allows for air to vent from his stomach so it looks like he might enjoy eating once again!

Thursday, August 1, 2013

Day prior to Medical Marathon with G-tube surgery.

History:  Wow, it has been a long 2 months since Hayden was hospitalized for terrible vomiting.  Surgery will be bright and early tomorrow arriving at 7 am for surgery at 8:30 (CST).

I can honestly say not much has changed for his health positively except that we can now give him meds through the tube and push fluids even when he doesn't want to drink.  We have also added yet another doctor to our scheduling.  After nothing else was working, we sought out specific nutrition advising from a PHD, MS, RD, LD Lea Gebhardt for nutrition counseling for Hayden specifically.  This was unlike anything else we have ever heard.  It gave us hope and was pretty exciting for our new journey feeding through the g-tube with the Vitamix.

We have tried to tell Hayden honestly what will be happening to him and to educate Hanna as well.  One of the DME (durable medical equipment...for those of you less familiar with this lingo) providers gave us a stuffed dog last time at the hospital with a mini feeding g-tube to show what it will look like.

Surgery Notes:  We are hopeful that the g-tube surgery will stop all his vomiting.  He has been home all week away from any germs to try and keep him healthy enough for surgery.  Monday was a low point for Hayden after two heavy vomit filled days where I had to restrain him and place a new tube twice.  I really think we should both have been allowed sedation from this mess.  I hope he doesn't have PTSD as a result of this feeding tube.  He is excited to get the tube out of his nose.

Hayden will undergo 6 hours of surgery + tests as mentioned in the previous post.  His recovery from sedation is supposed to be 2 hrs.  The other good news is, that Hayden's BFF from his PPCD school, Costa's mom, will be his night nurse for the weekend.  Here is to hoping this medical marathon goes well.

On a positive note, Hayden is the running inspiration for a new friend, Becky Boustselis.  We just learned of this group  They link mental and emotion encouragement for both runner and honorary runner bringing awareness of the differently abled.  It is so fun, like having a great pen pal.

Hayden also had his annual Medicaid evaluation and the nurse said he scored the highest of anyone in the system right now(as Hayden vomited blood as the evaluator walked through the door).  Not exactly the best news you want to hear but good news as we will be getting more nursing hours.  We love our nurse Dana!  The best news however would be that he no longer qualifies for Medicaid as his health has improved dramatically.

Friends & Family:  We feel loved & blessed to have friends to schedule care for Hayden's big sister, Hanna, while we drive back and forth to the hospital.  It is really something humbling to trust our friends for caring for our daughter and for them to love us enough to let us impose.  We will have family coming from Montana to help with the recovery when Hayden is discharged from the hospital hopefully Monday morning.

Many of you ask, what you can do to help?  Help us laugh.  Send Hayden a video on my iphone or e-mail for my ipad.  He loves to play & watch videos.

Don't be afraid to reach out.  You won't bother us at Dell Children's Hospital.  If we are busy, we just won't answer:).

Here is a fun viral news story of a little girl in the hospital that had too many pizzas!childrens-hospital-overwhelmed-with-pizza-after-cancer-patients-window-sign/

Thank you again for all the positive energy, messages, meals and phone calls!
Hayden & his family