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.