Thursday, June 9, 2011

Knowing when to say, "When!"

Making complicated medical decisions on behalf of your children is never easy. Those decisions WILL alter your child's life (hopefully for the better) and consequently, yours as well. Making the decision to travel to Philadelphia to receive a higher standard of medical care for several of our children was NOT a difficult decision. When we made that choice over 3 years ago, we knew what it would entail, but we readily accepted the challenge because we also understood the difference it would make in the lives of our children receiving treatment and our family as a whole.

On January 27th, Alayna had her right leg amputated through the knee in Philadelphia. . . just three weeks after bringing Alexis home from Bulgaria. Alayna had been looking forward to this surgery since we picked her up from the orphanage in July. She was ready for a prosthesis and the chance to finally put two feet on the ground-the chance to walk and run! We never could have guessed at that time that we would spend the next 4+ months traveling back and forth to Philadelphia trying to heal a chronic wound caused by the improper healing of her surgical incision.

After 8 trips to Philadelphia, the healing of Alayna's wound had stopped progressing. It seemed we had reached a plateau and nothing we tried seemed to help. In addition, her pain was beginning to increase and it got to a point where I think she could feel every raw nerve ending across the surface of her wound (8cm long, 4cm wide). She was miserable.

Alayna was not the only one suffering from this prolonged healing process. After four months of traveling back and forth to Philadelphia, never truly being able to establish a firm routine, all of the kids were paying the price and it was evident in their behavior. The chaos was particularly hard on Alexis, who had very little time to adjust before being thrown into the whirlwind of traveling back and forth between home and Philadelphia.

As I sat in the waiting room at the pediatric dental office one day, watching my children struggle to control their emotions, listening to Alayna moan in agony because of her pain and reminding Alexis for the fifth time in ten minutes that it was not appropriate to sit on random strangers laps, I knew it was time to change directions. I wasn't being fair to my children and it was wreaking havoc on everyone. I made the decision right then and there that we would continue to seek treatment for Alayna's wound closer to home where we could be more aggressive with treatment and where we could establish a solid routine that would only be disrupted for hours at a time rather than days.

As soon as we left the dentists office I called our pediatrician and made an appointment for Alayna to be seen 15 minutes later. After examining the wound, our doctor placed a call to the general surgeons office at our local children's hospital (a doctor who just happened to specialize in burns and chronic wounds). Two hours later we met with the general surgeon to establish a new game plan and, less than 24 hours later, Alayna was in surgery for a skin graft.

Unfortunately, the first graft didn't take :-( Alayna's wound is located on the back of her right thigh and is under constant friction from sitting, laying down and even pulling her pants on and off, none of which promote healing. This is what caused her surgical incision to open in the first place.

Two weeks after her first graft (last Friday), she went back to the operating room to undergo a second skin graft. Although the first graft did not take, the wound HAD decreased quite a bit in size and the doctor felt much more confident that this graft would take. To increase the chances, a cast was also applied to her right leg to protect the graft site. We should know this afternoon whether or not this graft will take. . . . .

While changing directions in our treatment plan has certainly not been stress-free (far from it actually), it HAS allowed all of us an opportunity to spend more time focusing on establishing a routine that will help our family thrive as a whole and has also allowed us to focus more on the individual needs of our children (giving us the chance to move from "survival mode" to finally finding a "new normal").

When you have multiple children with significant special needs, it is SO easy to get caught up in the whirlwind of doctor's appointments, therapies, treatments and surgeries. It is easy to forget that, while those things are important and often vital, it is just as important to allow your children the opportunity to just be children. Sometimes you just have to know when to say, "when!" and I am so grateful for my Heavenly Father's guidance when it comes to making these life-changing decisions. He ALWAYS knows best!

We are still far from the finish line, but we can finally see the light at the end of this tunnel and, once we reach it, we will be taking a nice, LOOONG break!


Jo's Corner said...

I will Pray for Alayna. I had my left leg amputated (below the knee) in Oct. 2008. I also had MAJOR issues with healing. I had to have a revision twice and spent almost 5 months inpatient for IV antibiotics/wound care. It is really difficult and I know how much pain Alayna is experiencing. One thing that worked for me was Lidocaine patches. Obviously she has an open wound, but perhaps it could be put on an area near her wound on her healthy skin. It has to be prescribed by a physician and may not be an option for her, but you could ask. It basically is a patch that has lidocaine in it and it numbs the area. Also, have they tried a Wound Vac and/or Hyperbaric Chamber to help with the healing process? Both are common in a Wound Care facility. I do know that with the new skin graft that the options are limited as you wait to see if it heals properly. Poor Baby! I've had several skin grafts after a car accident and they hurt! Especially the donor site.
Tell Alayna that there is someone in MN. saying special prayers for her. I'm glad you decided to start working with someone closer to home. The travel can make life crazy! Especially for you, with all of your kids! Blessings to All of you! ~ Love ~ Jo

Carla said...

I am praying for y'all...espcially for Miss Alayna to be healed!
I certainly understand how you are feeling! I am currently sitting in a hotel room with 5 little kids while Kaylea is receiving intensive inpaitient care at the children's hospital for the next 45days!
I love when you update!!

Jill said...

Poor Alayna! I hope this skin graft will take. We miss you guys SO much! It looks like we'll be back in OH in 2 years and I'm already ready to schedule a playdate with you!!! (((HUGS)))

Christine said...

Great post Valerie. I made this same decision early on with Dennis and Alex. We could have went to a more specialized hospital but it would have meant tons of traveling. We make do with the children's hospitals around here-- and now that we have moved they seem to be pretty great!

Big hugs to your precious little girl.

Cammie Heflin said...

Wow! Praying for Alayna's healing and the needs for all of your precious children!

Cynthia Curtis said...

I was very glad ot the news that the graft has finally taken and that plans for a prosthetic an go forward -- I'm sure that it was a relief to make the decision to have some medical work done closer to home - - -Grandma DD