Monday, March 24, 2014

Urology Surgery #12

This has been a tough post to compose so I will break it out into parts.  Overall we have felt happiness and joy for the progress Hayden has made since his many surgeries in 2013.  

I do write this post to ask for prayers again to be answered that this Friday 3/28.  He will have a urological procedure to possibly eliminate the reoccurring infection that he has been stricken with for the past 6 weeks of many doctor appointments, emergency images and follow ups.  Fortunately he does not express any pain from the infection while he has been treated.  However, he has become resistant to the antibiotics and this procedure is the least invasive before drastic measures need to be taken.

It should be a quick procedure, but he will still need to go under sedation.  It is not expected that he would need to stay overnight in the hospital.  We should be able to go home the same day. 

While we have felt a calm assurance that this is the best course of action, I sought out a second opinion from the UCSF Chief of Pediatric Urology so that when Hayden is older he may not think we made hasty decisions.  This doctor from UCSF oversaw us with our participation in the MOM's trial and was prompt and gracious in his response of concurring with the decision and offering us a third and fourth reference for opinions.

For our Spring Break we got to go to the hospital and visit with a few friends that totally get us & we get them and love them:).
A family get together for Austin Spina Bifida families.  So grateful to all of those wonderful people that worked hard to organize and pull us together.
Hayden also had a Spina Bifida Clinic 6 month evaluation over Spring Break.  As a mother it is very difficult to summarize over 8 hours of medical meetings and appointments and then to retell the summation to the other doctors and nurses and agencies, family & friends that care for Hayden.

So I brought one of Hayden's wonderful nurses, Dana, along on the day of SB Clinic to be my second set of ears and medical mouthpiece.  We were very pleased to show all of the progress to Hayden's Team (OT, PT, Speech, Orthotist, Orthopedist, Nuerosurgery, Gastro Intestinal, Genomist, Nutritionist, Urology, Physical Medicine & Radiology) and all the doctors, nurses and clinicians that visit with us over the course of a whirlwind, marathon medical day.  After reviewing many images they were overall impressed with his incredible improvement to his health, his strength, his endurance, his weight gain and to his cognitive abilities since they last saw him while he was critically ill prior to his tethered cord surgery.

Nutritionally, the G-tube that he is primarily fed through, has been a great blessing.  We fought many years to forgo taking such a drastic feeding measure.  Since the multiple surgeries of last year, has thrived nutritionally, positively effecting his entire system with a whole food blended diet.  He does eat orally but mainly for pleasure and not nutrition.  As his oral food aversion lessons from not vomiting daily, he has been willing to participate in tasting new textures.  

I learned a lot that day at clinic for a new doctor on Hayden's team.  He is a doctor of physical medicine.  He was impressive in his overall assessment of Hayden taking into account all of the specialists and devising a proactive and not reactive plan for his future (psychological evaluations, summer intensives of PT/OT coupled with botox & new clam shell AFOs).  He was a breath of fresh air!  He believed that Hayden was unique enough even to Spina Bifida that he took a sincere interest in him and how he is similar to kids with forms of cerebral palsy and muscular dystrophy.

I learned that due to Hayden's increased strength, he also has some draw backs.  Hayden's increase in weight and height caused him to quickly outgrew his new orthotics by 2 & 1/2 inches in width and height.  Also, his hip is migrating out of socket that is causing him to experiencing occasional pain in that leg.  I also learned that he does not have opposing muscle groups to balance things out and that is further complicated with his diagnosis of Hypotonia. He also has contractors in his hips and knees due to ligaments shortening with decreased range of motion.  All of these things add to the list of procedures and therapies we try and implement throughout the day and night to help correct things that need a little more help.

The good news is, all of his team of doctors and clinicians & therapists all are aware of his upcoming stem cell treatment in Mexico and are interested in seeing and helping to measure the results.

The deposit has been made and we have booked June 26th for the procedure at NOVA Cells Institute.  We had been working on getting the medical records released for over 4 months and now they have them!  Thank you for all of the kind and generous donations that were made to his birthday fund to help him get the deposits for the procedure done.
We still have a long way to go but believe our sacrifice and investment will be worth it. According to the poster in the office of our apartments, St. Jude Children's hospital is currently performing stem cell treatments on children with leukemia to the tune of over $100,000 for your own stem cells and over $200,000 for donor stem cells.  I need to attach the poster break down image. This makes our investment of $16,000 seem like a bargain.
I just love this picture of a very happy moment.

Hayden has been alert, happy & overall in good health.  He has scored well enough in his school ARD (Admission, Review & Dismissal) of an IEP (Individual Evaluation Plan) that it was determined that he is academically on target with his piers and will not need intervention through attending summer school!
He will still need aid and assistance but he can achieve his academic goals.  His nurse took this picture on his birthday at school.
Any surgery is a set back, but he is an amazing little boy who quietly conquers his trials, slowly works to regain his strength and endures all things.
We made our own Spring Break and celebrate a week later at the San Antonio Zoo.
Thank you again for caring, offering advice and support when we need it and for the quiet prayers on his behalf.