Tuesday, August 16, 2016

5 weeks postoperative Mace and Mitrofanoff

One month out & all of his stitches were removed today! X-ray and contrast looked very good on his new bladder. Everything is going along textbook with great love and care from our urology team.  Hayden has been very anxious and excited about getting everything removed. We gave him a dose of Valium to help ease his nerves.

He had both drainage tubes removed. The suprapubic has been left as a back up in place. One more week and everything is gone. Both sites appear to have healed well. He will get stoppers to keep the incisions open so they don't close and scar shut.  This will further keep us on pins and needles.

He wore himself out on the doctor's exam table after all of the adrenaline ran through his body while they were removing all the stitches and tubes.  The super trooper gets anything he wants and his number one request is always milkshakes. He's my super warrior!

Tuesday, August 9, 2016

Post Op 4 weeks

I wanted to update for those parents and individuals that are thinking about getting this procedure done as well as for all of those who have prayed on Hayden and our family's behalf. We are now in the fourth week since Hayden's extensive surgery. We planned and educated ourselves the best we could. The pain that this warrior has endured is amazing. It feels like we've held our breath each and every day and relied on Gods grace to get us through. 

There have been some scary days for the infection did not look good and Hayden cried in pain asking for it to be taken away.  Those are the days where we wondered if we made the right decision and I agonized for putting him through surgery.  We continue to be hopeful that this will improve his quality of life as each and every other surgery has thus far removing more barriers.
One step closer to not only watching the game of life but being an active participant with independence and less reliance on assistance.

We have been very restful (as a family can with 3 kids) and kept him home since being released from the hospital on day 10. Due to his many drainage tubes, he cannot go in the car seat so we do not leave the house with him.  He has been outside only a couple of times to visit his treehouse and see his brother finish his soccer season.  

It is the first time in seven years that we haven't had a home therapist in our home or a nurse on a daily basis. It is astonishing to realize how important and how much I have missed our family's privacy.

In 2015 we spent over a quarter of the year in the hospital. We treasure being able to be together and not having appointments or being watched over.

Hayden continues to have four drainage tubes stitched to his abdomen. We have become somewhat of wound care specialists. Some of the greatest advice comes from other parents that are on cherished, informative medical Facebook groups.  Doctors and physicians can tell you how to treat surgical incisions but they can't tell you how to care for the long-term well-being of the individual as they recover.

Left to ourselves, we were told to line the bed with disposable pads. Great tip!  You never know what can happen during the sleep. Although, he has four tubes stitched to his little body, he has only ripped out one of his stitches which we consider a success. Every morning I spend over an hour replacing tape and gauz and treating his incisions with antibiotics and ointments.

Hayden has a bunk bed in his room. His little brother, Garrett, likes to wake up first thing in the morning, get on the top bunk and jump off onto the bottom bunk. We have been frightened every morning of what we might find if he ever landed on Hayden.

We have had to learn how to be medical experts with no degree and only hands-on training in this field. I've learned how to refine my technique as a woundcare expert.  I've learned how to do surgical procedures in our bathroom with the cabinet full of medical supplies. I've also learned to never leave the doctors office without asking for a free sample goodie bag of supplies to test out. 

Next week we will return for his follow-up appointment. If all goes well, he will have all of the remaining tubes removed. We will then try to go on with our normal schedule of barely managing chaos.

One of the days while we were in the hospital, I managed to get out with my mother and other two children to see the Secret Life of Pets movie. It was a great comedic relief during a high stress time. I absolutely fell in love with Pops.  I just learned that McDonald's has been giving them away in the happy meals. In our house we collect every toy that has mobility devices. If anyone happens to have a spare that they won't use and would like to donate to Hayden we sure would love it.

The human spirit is amazing. We have been watching the Rio Olympics and enjoy learning the stories behind the competitors. We also look forward to watching the Paralympics. Their stories are the most inspiring.  Take a minute and watch this clip it will definitely move you.