Bella's hips are severely dislocated (one side more than the other) due to years spent in a laying room. Additionally, her bones are very, very soft as a result of chronic malnutrition and non-weight bearing. Her surgeon was able to see firsthand just how awful her bone density was when she broke her hip and had surgery back in January. Due to Bella's history and overall health, the plan was to do hip surgery on one side today, spend a week in the pediatric intensive care unit, do hip surgery on the other side next Wednesday, and spend a second week in the hospital. They were worried about excessive blood loss and a more complicated recovery if they tried to do both hips at the same time.
However, a few hours into the procedure we got a phone call from the OR informing us that they finished one hip. Because Bella was doing so well they decided to go ahead and operate on the other hip too! Obviously this was wonderful news for all of us, as it meant no return trip to the OR next week so it cut Bella's hospital stay in half. After almost nine hours in the operating room, she emerged medically very stable. She did have to receive a blood transfusion but handled the very long procedure fantastically.
Now, about the "game time" decisions I mentioned earlier...
We were not able to know ahead of time which type of procedure they would do on the left hip. It is the more severely damaged one. There were two possibilities on the table. Option one would involve preserving the femoral head and putting things back into place, so to speak. Option two would involve cutting out the femoral head completely. The decision would be made after they made the cut and visually inspected the femoral head. If there was enough cartilage there they would choose option one; if not they would choose option two.
Sadly, the cartilage was not only badly damaged, but non-existent in some areas. The surgeon knew how much I hoped she could save the femoral head. She knew I had struggled a great deal with the idea of cutting it out completely. So she took photos of the femoral head so I could see for myself just how bad it was. That was so nice of her and I was very thankful she did it. It allowed me to feel at peace about the situation, to know that there really was no other alternative for Bella. This is what had to be done. A friend told me that it was a blessing from God that the decision about the femur was so clear, and that He decided that one for us. I agree. We are glad it played out the way it did, with such clarity. Now we do not have to look back in ten years and question anything. It truly is a blessing.
So option two it was for the left side. The femoral head was removed from her body and things were pieced together. And option one it was for the right side. Hardware was placed in both hips to hold it all in place. What does this mean for Bella? I am probably asked "Will she be able to walk?" more than any other question. I thought it best to just put it out there. She will not be able to walk. The possibility of her ever walking was very slim to begin with but now it has been removed completely. We hope that with physical therapy and time, she will be able to stand in order to help transfer herself to the toilet, wash her hands, etc. This would greatly improve her level of independence as she gets older.
So tonight, she is medically very stable and recovering well. Emotionally, she is traumatized by the ordeal. Having food and drink withheld is a very, very big issue - and understandably so, given her history of institutionalization and malnutrition. She becomes really anxious when she is NPO (nothing by mouth) at the hospital. The staff does not want her to have anything to eat or drink until tomorrow morning and honestly this has probably been the hardest part of the whole day for Bella. Tonight she was crying, saying "Mama. Mama. Mama." over and over, and BEGGING me for water.
So as I sit here now I am both happy and sad. Happy that the surgery is over, she came through with flying colors in usual Bella-style, and we can indeed move forward now. But also sad for the sense of finality that it brings with regard to walking. Now it is time to accept the reality that this surgery brings and give Bella every opportunity to maximize her quality of life. She is happy, full of spunk, the embodiment of joy. Life in a wheelchair is a thousand times better than no life in a laying room. So often we as humans tend to get bogged down in the details that we have no control over. But what good does it do us? It is very easy for me to lament the life that Bella had for 8 years, to think "what if". But I cannot right all the wrongs committed against her. I can only come along side her now and show her a new way. For the last six months we have made a concerted effort to keep the big picture in focus and not muck it up with senseless worry. And that is exactly what I plan to keep doing...tomorrow, and the next day, and the next day.
Just before surgery...still smiling.
As the mom of a medically interesting child, I'm glad the surgery went well. I also believe that kids like Bella can beat the odds.
ReplyDeleteI am so happy that Bella is well. Ya know, there was a time here that a wheelchair narrowed a life. But, thankfully that has changed. People who use wheelchairs climb mountains for heaven's sake! There are wheelchairs that can take her into the ocean, across rocky terrian, onto a basketball court ... Her joy in life will be her claim.
ReplyDeleteIs she in casts or a brace? I'll keep you in my prayers as her recovery progresses.
oh i am so relieved it was so clear cut. that really is a blessing and she will shine walking or not! I am thrilled she doesn't have to face another surgery next week and so happy you are this side...praying hard for her until she can eat and drink and you mama....that must be hard on your heart! love her smile! her smile has my heart! her smile has always been there hasn't it, even when she was in hell! xxxxx
ReplyDeletesweet heart, best wishes for a speedy recovery and then back home....x
ReplyDeleteHi Lisa ~ So, so much going on in your family life. Some difficult, all drawing you closer to each other. I understand the sadness of Bella not being able to walk. A Mama has hopes, hopes for the things that will give that child the freedom to do all they desire. I am a bit sad, too. I would love to see Bella running around with her siblings and friends. But, my sadness is overshadowed by JOY! Joy that Bella WILL be able to do so much more than she ever has! Once she is strong enough to start using her wheelchair, her life will really change. All of your lives will change!
ReplyDeleteI became a wheelchair user myself, and that was after 40+ years of having 2 legs and normal mobility. It has now become a part of me. It is a body part. It is amazing to watch what a wheelchair user CAN do!
I would imagine that she will need to have her upper body strengthen a lot, but then she will be able to get around better than she ever has.
Okay..I'm rambling. Know that I think about you and your family quite often and pray for you as He brings you to my mind and heart. I'm excited for your soon to be new arrival! That tiny soul will bring a whole new vibe to your family! Take care of You, sweet friend! And, give the kiddos a hug for me!
Lisa, Thank you for sharing the medical details. I was very touched by the fact that the surgeon provided pictures of the femoral head. It shows her sensitivity for Bella as well. God is good. Bella's smile is SO, SO beautiful. She is certainly thriving in your family. PTL!
ReplyDeleteShe sounds so brave and beautiful! What a lucky runner I am to have such an amazing inspiration!
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