25 Months ago today I became a Mommy. Ever since I've been making choices.... how long to breastfeed, when to start feeding food, what type of childcare we wanted, when to have another baby.... the list goes on. Some of these choices were easy, even fun to make. Others were given greater consideration prior to actually having my answer. It's part of my role as a parent. I've been given my children's future as the greatest responsibility. Of course I knew I'd be making choices on their behalf. But nothing could really prepare me for the choice I'll soon be forced to make - how to treat Elsie's PFFD.
Lately I've been obsessing about what decision we will make. Limb lengthening, rotationplasty, amputation...something else? I don't know the risks and benefits of each to truly make an informed decision, but within the last week I can't think of anything else. I am thinking about it 24/7.
It all started from last week's chat when Dr. Herzenberg said Elsie's leg looks to be on the severe side of PFFD. He mentioned a total of 7 surgeries. Initially I was relieved he thought he could do surgeries. That's what I've been hoping to hear. BUT then my wheels have been going since then. If Elsie had surgery to reconstruct her hip at 2 and then 6 surgeries for limb lengthening..... what would her childhood be like? I'm guessing that the 6 surgeries is comprised of 3 to put on a fixator and 3 to take it off. If that's the case, I've seen in multiple sources that a fixator is on for 8 months for each lengthening. If Elsie has 3 lengthening surgeries, that's a total of 24 months in a fixator. 24 months of cleaning the needles everyday, 24 months of possible complications leading to chronic pain. If this was the path we chose, would Elsie get a fun, carefree childhood? Also, I'm starting to wonder what the increased risk is that's associated with greater discrepency. Will there be a chance that we could go through these surgeries and her leg be shorter still? If lengthened to meet the right leg eventually, how strong and functional will her left leg be? We are making a list of all of the concerns we have so that come June we can ask Dr. Paley.
Aside from the Physical concerns that Elsie may face, I'm wodnering how in the world we'd make it happen? We live and work in Michigan. To have so many surgeries and recovery in MD or FL we'd have to take off a significant amount of work. Not to mention the finances associated with living in a hotel or short-term apartment each time. The worst part to think about? If I'm in FL or MD for 4 months at a time, where would Mila be? I can't stand the thought of dragging her away from home, but even more so I can't stand the thought of her not being with me. But then I think of the fact that part of those 4 months are bound to intersect with the school year...how could she stay with me. My only logical answer to this is to MOVE. Seems far fetched I know, but it's the only way I feel like we could stay together as a family, keep the girls in school as well as Matt and I being able to keep our jobs.
So, needless to say, the Limb Lengthening is exhausting to think of. Are the benefits worth the physical toll it could take on Elsie?
On the flip side, I recently connected with a family whose little girl had her leg amputated at 9 months due to PFFD. Her mother graciously has been open with me on their experiences and with photos. Her daughter learned to walk with her prosthetic leg, her daughter had a single surgery and may never have another surgery again, her prosthetic is all that she knows (and as Mom says "she loves it!"). This beautiful little girl is seemingly able to enjoy her childhood just like others her age. The prosthetic is functional and isn't noticable visually unless you're looking for it/know it's there. This mom told me that they've never looked back. So in April we see Dr. Nowicki again. I want to find out more about our non limb lengthening options and the associated risks.
Hopefully come June after seeing Dr. Nowicki and Dr. Paley, we'll have a good idea of our options and the risks/benefits of each. Matt is trying to wait to think about it until we have all the knowledge... I wish I could.
I pray alot about Elsie. I want to make the right decision, I want a miracle in her leg, I want to know what God's plan for her is. Right now my heart and head are pulling me towards amputation. Seeing the little girl with the prosthetic calmed me. I saw what I want to see in my daughter.... a little girl loving life. A little girl in her home, with her family....every day. But I can't help but wonder, am I REALLY leaning this way because I think it'll have the greatest results or because it'll be the easiest option? It is obviously easier to not travel and go through all the surgeries. But deep in my heart I'm feeling this is (with my current knowledge) the best. If it comes down to it and we have an amputation.... will 18-year old Elsie understand the decision? Will she wish we would have tried something else? What would she have done differently? These same questions would apply even in the event of Limb Lengthening. Would Elsie be regretful of all the time she spent in the hospital? The time away from home? The pain associated with the needles? Was it worth the years and years of physical sacrifice in the end? And that's the worst part - no path is the easy one. There isn't a right and a wrong. And it's a decision I don't want to make - but at the same time, I trust no one else to make it for Elsie. She's my precious little girl and no one cares for her like I do.... and no one would put the time and consideration into choosing like I will.
My name is Dana and my daughter who is 2 1/2 years old has the same issue as Elsie on her right femur bone. We are going Monday the 5th to DuPont Hospital in Delaware for her to get put to sleep and her leg be injected with dye to make sure her hip is good. Then we are going to start her procedure of amputation in Mid October 2012. I understand your concerns we have been dealing with the same concerns as you. We basically had the same 3 options as you. THIS IS MY OPINION ABOUT MY DAUGHTER, i don't want you to think i am telling you what to choose. I spoke with my dr's in September to choose the options and they gave us those 3 as well. After thinking about it once the talk was over, my husband and myself did not want to do the leg lengthening because it would be too much on her, and she wouldn't have much of a childhood. She would have multiple surgeries, be in half body cast for 6 months, 2 times, and have rods in her legs which we have to turn to stretch her bones. Which they have a very high chance of getting infected, which means back to the hospital to get that fixed. Then there was basically turn her leg backwards. I do not think its a good idea for my daughter because when she gets older and because more aware of her body i feel that will hurt her emotionally. i have talked to my prosthesis dr as well and he said 4 people he works with that had that done are not mentally happy about it. So all in all, we chose amputate her foot. I feel its the best result for HER and she will be active and happy. Also, what gets me through this very hard time is to consider what other kids are going through. That seems to give me hope that she is in a good place and will be OK. God doesnt give you want you cant handle and God gives the strong such special kids like ours! I hope this helps you and I will be praying for your daughter and family! I am in the SAME place as you! God Bless you!
ReplyDeleteI'm so happy I found your blog! It's like you are writing what I'm feeling. My name is Sienna and I gave birth to a wonderful baby girl at the end of January. She too has PFFD in for left leg. From the pictures of your sweet Elsie it looks like their length differences are similar. I started a blog just recently if you want to check it out.
ReplyDeletewww.larksstory.blogspot.com
Thanks for your honesty. It is so comforting to know there are other parent's out there feeling and asking the same questions we are!