Day 8 update mace, Mitrofanoff & bladder augmentation

I first would like to thank everyone that prayed for him this past week. They are felt and sustain us.  Today is Monday. We have had a dramatic weekend. However, I am glad to report that Monday has started off excellent.  Hayden has removed one of his kidney drainage tubes that was stitched to his new bladder.  This was pretty painful to remove and I had to try and not faint. Even with that, about 30 minutes later, he was able to turn over on his side independently with the visit of Ariel.  To be able to use his abdominal muscles is a big deal after the extensive surgery he's been through.

Hanna has been keeping us company in this stay while Scott and Garrett are home.  One is trying to work while the other is trying to play.

Saturday was particularly hard.  Everything has been going along smoothly and better than expected when Saturday evening, Hayden had two seizures, frequent daily low-grade fever's, and an infection on one of his drainage sites.  This was completely unexpected because the morning he looked so good that we even removed his epidural and said goodbye to my mother who had been helping with the kids all week. We thought everything was going better than expected.

Our wonderful urologist made a special trip in to visit again due to the unexpected set back with his health.  He confirmed that it was an infection and ordered blood labs as well as bacterial labs to be drawn on the infection site that takes 48 hours to grow.  His blood cell count all looks normal.  They are applying to topical anti-bacterial creams to his remaining drains and tubes.

Sunday we were all together as a family and just spent it in prayer and rest. The best part was getting to have everyone together for the first time in a week all of us together at the Ronald McDonald house.

Post Op update Mace, Mitrophanoff & Bladder Augmentation

Hayden had magnificent care in the ICU. Scott and I were so confident in his care and the progress of the surgeries that we slept soundly at the Ronald McDonald house.

Hayden's recovery has been very painful. One night, we had the bright idea to give him Valium. That should be something that goes along with the pain management for kids on a regular surgical basis.  Valium is somewhat of an amnesia drug. It makes him relax and have a much better time and less anxious each time he has to visit the hospital. I would highly recommend Valium for all to be part of the treatment plan.  He slept better and was not as tense. 

It broke our heart when we heard Hayden's reaction when the G.I. (Gastroenterologist) on-call made rounds.  When he entered, the first thing Hayden said was please don't hurt me.😒

Our urology team is absolutely fantastic. They have coordinated great care for us. On the rounds, the last day in ICU was a girl from Texas A& M doing an apprenticeship for the urology department.  She also uses a wheelchair. That made our day.

On the third day following surgery, Hayden had progressed enough to graduate from ICU to a regular surgical floor.  On day four of no food, the doctors started feeding him through blood nutrients.  Due to no bowel sounds 3 days after surgery, eating is risky.  However at the 4th day without food, the doctor let him start with a chocolate McDonald milkshake as he refused ice chips and every other beverage.  He did well and will continue to take it slow.

Team Hayden arrived like a tornado.

The best part of the day was the visit from family.  Hayden was so excited to see the kids and Gaga.  We have started to see the progress and healing as he has finally started to talk and laugh.  Maybe we can all let down and let go a little.  The doctor said that he is doing far better than he anticipated.

Post Op Day 1, Mace, Mitrophanoff & Bladder Augmentation

Hayden had a rough night not being able to sleep or relax enough due to pain.  He doesn't communicate pain and so it is hard to tell.  He is staying in the PICU (pediatric intensive care unit).  Of all the floors and different units, we have never stayed here.  It is the highest level of care in Austin.  He has 2 nurses at all times.

He has done as well as could be expected for this intensive type of surgery.  Tomorrow could be worse as that is anticipated but if it goes well, then his recovery is going along better than expected.  He has 7 tubes and drains attached to him including an epidural to try and manage his pain.  He has a port or central line in his shoulder.  This is better than an IV as it will not collapse and food can be put into his bloodstream.  The other drains are doing their job of draining and there is less and less blood.

He has not eaten in several days and can not until his bowels start working again since he had the surgery.  That was pretty rough when he woke up after surgery and was starving.  We are trying to keep him pain-free but not give him narcotics as they slow down digestive motility and work against us.  His rest is very important at this time.

His incisions look good and are not showing signs of infection or blockage which is the biggest risk of complication. They give antibiotics and keep the room super cold because they don't want any bacteria to breed.  Thankfully, Hayden has lots of blankets and stuffed animals surrounding him to keep him warm.

He will be kept in the ICU until his pain is better managed and he can eat again.  At that time he will be moved to a recovery unit with less intensive care.  We are fine here but he can not have visitors.

On a positive bittersweet note,  one of our nurses came in today after training on Foley catheters.  He told us the hospital has implemented a new training and policy due to the error that occurred that nearly cost Hayden his life here last October. The silver lining is that we hope no other child will ever have that happen again.

This is our hospital and we love our team of expert Doctors for the love and care they have provided to our family.  

  

Scott and I slept well last night thanks to the prayers for comfort and trust we had knowing all was well with our family🙏🏩😍.

Surgery day

We have been busy planning fun and loosening Hayden up for the big day today.  Despite the looming countdown to surgery and 100-degree heat, we decided that Saturday we should have a swimming/treehouse celebration with a few of Hayden's school friends for possibly his last time this summer.  He was overjoyed and we are grateful that he has so many friends being raised by good families.

He has been taking special swim lessons with Pride Inclusive Sports http://prideincsports.org to help him gain confidence in the water and better body awareness.  It has been working because he just started doing cannonballs and having the breath support to hold it underwater.

We left our home last night to the good care of my mom playing with the kids for the week.  Hayden's teacher and therapist surprised us with hand made t-shirts for all of the kids to wear that say Team Hayden in orange and our friends surprised us with sweet notes all over our trees, door, and yard.  Hayden and the kids loved it and it was the last thing he talked about when he fell asleep last night.

Hayden arrived for surgery today at 5 and it is expected to last until 5.  Surgery didn't start until 8 as they placed a central line and an epidural for pain. We know he is in good hands with the two best pediatric urologists working together on this long procedure today.  

We have the privilege of staying at the Ronald McDonald House this time.  Scott and I will take turns with Hayden while the other rests.  We will get to sleep at night and be fed by many wonderful volunteers and organizations.  

He is a rockstar!  He was all smiles.

The flowers were beautiful at the entrance of our stay.  There were fresh flowers on all the tables when we got to the room.  This particular room happens to be my lucky number.  It also is the first room we have ever had with a kitchenette.  The room was decorated in Disney with plenty of pictures and toys.  Hayden was very excited to stay here.  They had a great gift bag for him when he arrived with a handmade baseball quilt.

Thank you for the love and support for this next part of his journey.  

Surgery #19, 20 & 21 Mace, Bladder Augmentation & Mitrofanoff

Hayden will have a 12-hour surgery here in Austin with his beloved and trusted urologist on Monday. The recovery is anticipated to be 6 to 8 weeks long. If there are complications it could be longer. If it is shorter, we will be pleased and have witnessed miracles before.  This surgery will remove part of his bowel, he will have his bladder rebuilt with part of the bowel, and he will also remove the appendix and use it for a very specific purpose.

After weighing the pros and cons for months and trying to get control of the constant infection that has been managed by being medically monitored regularly with infectious disease consultations and a heavy dose of antibiotics, the scale has finally tipped and we scheduled surgery.

The elective surgery is to primarily give Hayden independence for his long-term future goals and lessen his reliance on nursing and the difficulty of someone in a wheelchair taking their pants on and off all day.  We also have hope that it will stop the reoccurring infections due to his urological abnormalities and that he will no longer need daily antibiotics.  The last surgery that he had, number 18, was due to an abscess that had grown that was untreated by the antibiotics. The abscess has again started to grow back.  Pictures are not appropriate to show for this procedure. You're welcome to search it out on the Internet. None of it will be done laparoscopically. It will be a large incision on the front of his body.

I feel fortunate that Scott will be able to be with me at the hospital during the first week. We respectfully request that no one visit us at the hospital until he is in the clear from infection risk.  If you would like to help, we would love humor. Daily affirmations are good but laughter is the best medicine.

As a mother, you never get used to this and it never gets easier, but we do get better at grilling the medical staff with questions and requests. There will be more surgeries on the horizon. We constantly monitor the benefits versus the risks. When the scale tips we schedule surgery. In the meantime, we do our best to enjoy every moment.  He is the greatest teacher I have ever known.

Dynamic Movement Orthotic DMO

Peter Parker: [voiceover] Whatever life holds in store for me, I will never forget these words: "With great power comes great responsibility." This is my gift, my curse. Who am I? I'm Spider-man.

And to this I say, to the parent of a child with great responsibility, comes the search for great gear.

This was a two-year search process to get this custom-made orthotic.  Remember the old fashioned hard shell back braces?  

Hayden has what is known as neuromuscular scoliosis. He has a diagnosis called hypotonia. Because of this, his muscle tone is weak and he has a hard time holding his posture straight.  His scoliosis increases as he ages with low muscle tone and poor posture it becomes a vicious cycle of managing symptoms.  The hope is that this suit will help give him added strength for his posture and slow down the progress of his scoliosis and delay rod surgery.

I started this journey after reading a blog from a parent in London years ago. The child had a similar diagnosis and the suit seemed to work. Shortly thereafter, the brace came to the United States through Boston Brace.  My search for an orthopedic in Austin that would prescribe this brace was exhausting. None have ever done it and his current doctors didn't want to be the first.

Finally, I contacted the manufacturer and they recommended a doctor in San Antonio. After several long trips and appointments back-and-forth, we finally got to pick up the product yesterday.

The suit is entirely custom-made. Every inch of his body was measured. Each panel contains different strengths of elasticity to help support his posture.

His name is even on the tag.  I don't think the real Spiderman suit was designed or made as well as this one.  In case you don't see the theme, AFO's (ankle-foot orthotics) are also Spiderman as well as his nifty Spiderman shoes. He is so proud and we are so happy to possibly prolong his need for spinal rod surgery.

This is the latest and greatest.

He will mainly where this at bedtime while he is relaxed along with knee immobilizers but minus the mask.

Home from Baltimore 2 month feeding therapy rehab

I can't believe we have been home for 3 months!  The first month home was more difficult that I imagined.

I now see why many people relapse after intensive therapy.  You think why would or could that happen after all that you worked for and sacrificed?  The truth is, it is hard to return to normal life and have so many variables enter in after you have been living in a controlled successful environment working on nothing else.

The first day we were flying back on the airplane and had to do a feeding session in front of everyone at the airport with crying and defiance.  It was stressful on everyone but we did it and got through it.  Everyone was so so so happy to be home.  We had a huge appreciation for our car, our beds, the grocery store, our friends and everything about being home.  Each of us was changed and full of gratitude.

We all worked hard at continuing what we learned.  Transitioning is hard.  School eating and strict protocol was a difficult transition.  The teachers, staff and friends were all very supportive.  He relapsed terribly for the first two weeks.  I was there every day. The environment was overstimulating and he wanted to see if he could go back to his normal behavior.  It made it tough on us as parents because we had to be extra disciplined to not let things slip in the slightest or he would push to see just how far he could slide.

We held cooking play dates with a few friends.

We went to birthday parties and actually ate!

The mind blower was the trip to the dentist!  It was the first time he didn't throw up or have to be sedated for a cleaning exam.

Slowly things started working again and then he sprang forward trying new foods.  See the video.  I was so hopeful and even thought we were making great progress and could re-introduce him into the regular cafeteria with his friends.

Then, he relapsed again and started refusing food at school and home.

We have modified his rewards and have to adjust with him.  It is not over for a long while.  It is hard to see others that have gone through the program completely eliminate their need for their feeding tubes when we are in the midst of a tough relapse.  I know we can get though it and the excitement from the new things like eating out at restaurants without fear of vomiting is so very exciting.  We feel more confident to travel and live our lives without confining ourselves to "safe" environments.

So for those other families struggling out there with children with intense feeding issues, I say hang in there and celebrate every bite.  I am thankful for the g-tube and it's life saving services and happy that my boy now can enjoy some of the pleasures of social eating.

Bring on the birthday parties!