Mom's turn in Hospital! June 2013

Shortly after Lydia's surgery, my symptoms returned and worsened. I had very little energy, my weight went down to 106lbs, I was weak, nauseous, can hardly walk,  can't stand up straight, my vision is blurred, my blood  pressure read 69/40 and my sodium level was at a critical level of 112 (suppose to be between 135-145). I shouldn't have survived. When the blood test was read (over a week after it was taken(there's another story there)) the GI doctor who was my only doctor at the time, told us that I needed to be admitted straight to hospital. I was intravenously fed with saline solution for 6 days while receiving tests from kidney doctors followed by an endocrinologist. On day 6, we had the diagnosis- Addison's disease and Hashimoto thyroiditis- both autoimmune diseases. And on day 6, I was a new woman! Hobbling in to hospital and dancing and laughing out of hospital. And after a year of my health deteriorating slowly, what a relief to have a diagnosis and treatment plan. Again, I thank Jesus that we decided not to lengthen Lydia's leg in March/April as it would have come upon me in the 4 month period in Florida and the story may have ended quite differently.

Foot Fusion- and Unexpected Hip Surgery- APRIL 2013

From a changed date, last minute cancelled flights and the costs of a damaged mercedes benz we lost quite a bit, financially. So to keep further costs as low as possible I was to go to Florida with Lydia and Tim was to stay in CA. This in itself was a nerve racking decision because unbeknownst to us, I was undiagnosed and suffering from Addison's disease and Hashimoto thyroiditis. My symptoms had left me with very little energy and strength and I was nauseous most of the time. But, I thank God that, for a few weeks my symptoms were lifted and I was able to go to Florida.
Foot Fusion- This is not a surgery Dr Paley chooses lightly. He will only do this if there is no range of motion lost in the process. Lydia had no range of motion in this joint because of her anatomy and the deformity her condition created. Pre-op done, papers signed, prayers sent, Lydia goes into surgery the next next morning. She always blows me away with her calmness before they wheel her into the operating room and I find it very contagious. I was so calm, in fact, that I went back to Quantum House to do my daily task of vacuuming the hall (shocking when I look back), then I went back to my room and prayed a few confident prayers.  A couple of hours later I headed back to the hospital. Now I happened to be reading "Kneeling We Triumph" which I will come back to later. Dr Paley came out into the waiting room and told me that the foot fusion was a success but when they removed a suture in the hip/leg joint area the leg came out of joint and they were going to have to do a hip osteotomy. They required me to sign new papers giving permission to perform the surgery. A side note to this is that Lydia had often complained about her leg feeling like it was popping out of it's socket. I have been so used to her complaints that I have been guilty of switching them off- I guess that's the wrong thing to do. So there I am in the hospital waiting room feeling very much more anxious that Lydia may experience the same nerve damage issues as she did before when she had the other hip osteotomy. I sent texts to my christian sisters to pray for her and just about held it together because of my faith. Then the big blow came. Another doctor, I think it was Servando, came out to see me. They couldn't get her leg to go back in position because of her tight muscles and so they needed to do a Femoral Shortening and needed me to sign papers to allow them to do this. I was devastated. Taking away bone length from a bone Lydia had previously and painstakingly lengthened earlier was such a blow. My heart was broken for her and my calmness gone. I signed the new papers.
It just so happened that I had read in my book on prayer, only a few minutes before Servando came out, about honesty in prayer, God knows our heart after all. So this read, I got real real honest. My prayer changed from- please give us the strength to deal with this extra surgery etc to- Lord, this is too much, I don't want this for my daughter, you are pushing me too far.
Waiting…waiting hours later, Dr Paley came out. He was very happy with the Hip osteotomy and had a lot of confidence in the new joint and …..they didn't need to do a femoral reduction!!!!! Tears of sadness turned to tears of gratitude and joy and strengthened faith! And oh, what a blessing indeed that we did the U-turn in the first place and stopped ourselves from doing the lengthening at this time! And what a blessing too that the suture held her leg in place up until she was on the operating table when there was so much pressure on it with the tight muscle.
Tim managed to fly out when we realized just how much more Lydia had to deal with and all the extra lifting. It was very necessary especially with the journey home! Thanks Tim!

Here we go again...

Well it's decided then. As much as we don't want to lengthen now, we don't want to put her through TWO surgeries. It breaks my heart to think how long she'll be out of action and that she'll miss an entire summer, but it has to be done sometime, and it's better to get it all over with now.  This will be the last lengthening of her tibia ever. So we're going ahead. Surgery is booked, airline tickets are bought, time to start packing and make the best of it!!!

Changed minds. March 2013

About this time last year, Lydia was due to have a foot fusion and second lengthening combined. However, big doubts about the outcome began to invade our peace of mind. We had a surgery date, booked flights, cases packed  and everything planned. Only 1 day before our flight, and after a few days of prayer (me) and talking it out, we decided to cancel the trip and opt for the amputation and prosthetic. Now, because of the stress of a changed plan and a irreversible plan at that, the four of us- Tim, Eliza, Lydia and me, took off up the coast in an RV to recover.
Why did we choose to amputate? Well, we were disheartened by all the pain issues Lydia was having so often. I would walk the short distance to school with the girls and Lydia would stop half way and refuse to go on because of pain. The school nurse would call me frequently with reports of Lydia's knee/hip/foot pain… It was not the life we had in mind for our little girl and we thought she'd have a better quality of life with a prosthetic.
Watching the girls play on the beach on the back of this decision was heart breaking. I couldn't stop staring at Lydia paddling in the water with her bare feet and just stared at her from a distance with tears streaming and a heavy heavy heart. To ease my nerves I began watching informational videos about how prosthetics are fitted… that made my heart heavier still and I was filled with regret. How strange it is, when you so confidently make a decision, feeling so at peace with the new road ahead and then, WHAM, full regrets fill your very being.
On the way to our beach break we backed into a Mercedes with the RV. And on the journey home, the Janis Joplin song about Mercedes played on the radio. Which I would never have included in this post only it triggered my imagination and resulted in my little song about this very crazy time in our lives.
I am very thankful Dr Paley found out about what we were planning to do which resulted in him calling us. Such a busy, well known and highly respected doctor may have just written us off- but he didn't and when we were home we had a conference call with him. He was patient, understanding and reassuring and after hearing what we had to say, suggested that a foot/ankle fusion without the lengthening until later so that we could be confident and reassured that Lydia would be pain free, would be the best option. Our U-turn, U-turned!! We came full circle and ,oh, what an emotional ride it was.

Two years later....

Two years without a new post!  I may have to go back and enter a few retro-actively...

Things have been great for Lydia over the past two years. No surgeries, and she's done really well, until about 6 months ago when she started experiencing pain in her foot and sometimes in her hip too.  Some days it's OK, other days she comes home from school early due to the pain, hopping on one foot, using a cane, and sometimes even a wheelchair. So as I speak we are in Florida to see what Dr. Paley thinks we need to do to alleviate the pain.

After looking at her and a fresh set of x-rays, Dr. Paley wants to re-position her foot to point in a more normal position. Currently it points downwards a bit, and can't bend more than 90 degrees in relation to her leg. This means she can't walk with her weight squarely on her foot, all her weight is going on the pad and none on the heel.  This entails cutting the tibia at it's lowest point and angling it up a bit.

He said we can do this in conjunction with her second and final tibia lengthening, or separately.  Doing it together would mean one surgery not two, but we're not at all prepared for a 7-month lengthening so we will have to think it through carefully.  He's also concerned about her hip, and has ordered a catscan to further evaluate it.

I am torn between relief knowing another surgery is not imminent, and trepidation about the one that is surely coming before too long. It's so hard -- harder than I thought it was going to be, but I won't dwell on this as that is a slippery slope that I have been down before and this is not the place for it.