Sunday, September 29, 2013

Day 5 tethered cord surgery

We are going home tomorrow! I'll let the pictures speak a thousand words. We started off with a tour of the hospital.

Mobile blogging has everything out of order. So you'll have to match the caption with the picture yourself.

Hayden got to look out a little window that was just his height. From the fourth floor he could see puzzle pieces down below. We had to investigate.

He had to visit his baby picture in the cafeteria. Not for self-promotion but for Hayden promotion.

He likes the number four all over the floor because he's four years old.

On our adventure he picked some flowers for his sweet day nurse Annie.

He had a visit from the entire family today. Hanna and Garrett had fun playing at the Ronald McDonald House.

He had a sweet visit from a therapy dog Jenny today & got lots of kisses.

He played Pablo Picasso with his toys from his nurse Heather and delivered them to her at work.

Hayden's work here is done. Now he can return home and rest from his labors.

Saturday, September 28, 2013

Day 4 tethered cord surgery

Hayden continues to improve. The physical therapist along with daddy got Hayden into his wheelchair today. He sat at a 90° angle and roamed the halls. I was at home for a quick stop doing laundry and visiting the kids when I heard and couldn't believe it๐Ÿ˜.

He was in a great mood for physical therapy and with occupational therapy as well. After all that commotion he was pretty worn out and sore.

Just after therapy, he got a visit from his best friend Josiah. Even though his pain meds had and worn off, Josiah knew how to cheer him. It must've been Josiah's fast wheeling maneuvers and Cars' tattoo action that put a smile on this boys face.

Today with neurosurgery and the urologist there was even talk about being released tomorrow.

When Hanna visited she said, "when I grow up I want to be a doctor so I can help kids feel better."

Winding down after a family Face Time session from home, I told Hayden it was time for bed. And Hayden's words, "that's rude."

Hope you all have a restful night.

Friday, September 27, 2013

Tethered Cord Day 3

Day three is much better than day two. Hayden had his shunt flow study. The MRI and x-ray proved the shunt is working properly. He continues to complain about headache & continues to be in quite a bit of pain. However his mood is much better today.

He continues to have low-grade fevers. Labs are sent for analyzation. Neurosurgery moved Hayden to a new room and new floor from the immediate care floor to the neuro floor. Mooven' on up from the 2nd floor to the 4th floor. We were greeted by all too many familiar doctors and technicians that we have worked with this past year along the halls of transporting. All of his balloons could've carried him up to his new room.

Seeing Haden happy really lifts our spirits. Along with fun visits from our good friend Lei Strueling. She's the only one who knows how to make you laugh in the hospital. He also had his first visit from his family. He was very happy to see them.

Thank you again to everyone who helped lift our spirits through your sacrifice of time and caring energy. Praying he gets some healing rest tonight. His little body is worn out.

Thursday, September 26, 2013

Day 2 tethered cord surgery

Hayden is my hero. Today was a tough day for Hayden. He felt a lot of pain. He had a fever for most of the day & complained about a head ache. Neurosurgery thought he should have a shunt flow series done as well as a MRI. Results to follow.

He has been receiving excellent care. With a visit from past Dell hospital employees & friends Lei, his physical therapist Doug, and his home health nurse Heather (that also works at the hospital). His presents and balloons continue to increase. Adding to the collection is the Thomas the train and Elmo balloon. He was most happy about all the tattoos he got today.

His hospital nurse has a busy schedule. She's in charge of managing his tube feedings and venting, his bowel management, pain management, catheterization, and wound care. I try and mainly focus on hugs & kisses & entertainment while I try and let the hospital work on the rest.

Wednesday, September 25, 2013

Tethered Cord Spine Surgery #11

Hayden has successfully made it through tethered cord surgery! It is with grateful hearts that we now make the journey into recovery. We can sincerely say that we felt the power and peace from prayer brought into our lives during surgery. For each prayer that was offered, we shed one less tear.

He is a sweet peaceful boy. Going into surgery, he knew what was going to take place and was brave. The incision site is about 4 inches long. The neurosurgeon said everything went as he expected. We arrived at 6am & he was assigned to room 220 at 2pm.

He is already acting like himself again. He woke from anesthesia wanting juice and popsicles. He will recover laying flat for the first two days.

His pain is well-managed and we hope to keep him infection free. Because of this we request no visitors until his wound heals.

Hayden will have interesting stories along his life's journey. We are honored to love him & witness his sacrifice and extraordinary price he pays with struggles for great blessings.

We are blessed to have Kristin taking care of and Hanna & Garrett while we take care of Hayden.

Tuesday, September 10, 2013

Annual spina bifida clinic

When I checked into the clinic one of the nurses said, "wow your a mom starts off her day with roller-skates on."

Today I can report back on my gratitude of all the many people that have helped lift us along during this difficult journey. I am grateful for the ministering angels/friends & family that show up and fly in to help, that brought us food when we didn't think we needed it, that showed up at the door early in the morning to help take Hanna to the bus stop, that placed thoughtful calls & unseen family prayers and the many medical professionals that all express care and genuine concern for his health, I know I couldn't do it alone.

I will say clinic surprised me today. It was a one-of-a-kind day. Hayden received a new diagnosis Hydronephrosis of the kidneys. This means that we now get to catheterize Hayden every four hours to alleviate the pressure in his kidneys and bladder. One more thing to add to our new normal.

While Hayden's main diagnosis is Spina Bifida, that is a general term that encompasses many diagnoses of the brain, of the spine, of the legs, of the hips, bladder and bowel, and much of his coordination and muscle tone.

Let me begin by recapping the day. The day started off early having everyone ready and leaving the house at 6:30 AM. This morning Hayden met with a registered dietitian/nutritionist, a urologist, neurosurgery, physical therapist, occupational therapist, orthopedic surgery, social worker, orthotics & University of Texas genomics. It was a thorough and exhausting day.

New prescriptions from urology, gastroenterology and neurosurgery with many follow-ups and several blood tests to follow. The real surprise came at the end of the day. Neurosurgery said the fast acquisition brain scan and MRI was not conclusive as it was unreadable with a few missing images of the lower neck portion of the shunt.

Orthopedic surgery said the x-ray of the spine and hips was inconclusive as the image and angle of the hips was not sufficient to make a determination. They also are waiting until he has tethered cord surgery to compare any imaging.

The physical therapist, occupational therapist, as well as the registered dietitian all are waiting to see the results of the tethered cord surgery and the interplay with Hayden's small and gross motor abilities.

The gastroenterologist thought that we should make a follow-up appointment with Hayden's general surgeon that placed the G-tube to have nitrous oxide freeze the granular tissue that has
developed around his button.

When the urologist came in he was very surprised to learn of Haydens UTIs. He was pleased to learn of his upcoming tethered cord surgery to relieve these symptoms. But ultimately was very surprised when he saw all of the water on Haydens kidneys. He had an ultrasound done in June and everything looks perfectly normal. We will follow up with the urologist three weeks after the tethered cord surgery. The real results will not be shown for 4 to 5 months as the spine can go into shock following this surgery.

So what does all this mean? We'll continue to pray and take each day at a time and do the best we can.