Feb 17, 2016

One Tough Girl

It took less than 48 hours to perform major surgery and recover well enough to return home, but what a stressful 48 hours it's been, and we're not totally in the clear yet.

We awoke at 4 AM on Tuesday morning to get ready for our trip to Levine Children's Hospital. Dr Brighton was scheduled to perform surgery at 7 AM and we had to get there early to get the girl prepared. Each person involved in the procedure, from CNA monitoring vitals to surgeon, would ask us what Sera was having done. I suppose it was the hospital's way of confirming that there would be no surprises at the end of the day.

According to the nurse at the front desk whose responsibility was to keep us informed of progress, surgery officially began at 7:45. By 10 AM the Syme's procedure of removing the foot at the ankle joint was completed, and an hour later the two leg bones had been fused by adding a pin. At about noon on Tuesday we were brought to the post-op, recovery room to be reunited with our youngest daughter.

We thought sitting in the waiting room waiting to hear how the surgery went was going to be the stressful part. As it turns out, that was nothing; seeing Seraphina as she was coming off the anesthesia proved to be the real stress-point of the day. As she regained consciousness, she immediately began complaining about the cast and/or the leg. At times she would scream bloody murder. Then she would try to flex her ab muscles to sit up despite the design of the cast keeping her from achieving her goal. Then she would cry about not wanting the cast. And on and on. At one point the nurse suggested another pain med at which point I was ready to scream at her to just do her job and figure it out -- how was I supposed to know which drug would be the magic one to relieve Sera of her discomfort? All I knew was that is was pure torture to watch her seething in agony while I was helpless to do anything about it.

After about 45 minutes of agony, the nurse administered a child's dose of valium which returned Sera to a drowsy state and silenced the fits. The nurse said they discouraged meds that put the child to sleep because of the risk of stopped breathing, and dosing her this way required them to keep an oxygen mask at her cheek in case of emergency. Fortunately, Sera did not have any issues. Now that she was sedated, they opted to move her to a permanent room. Once settled in, we were able to meet the nurses that would be checking in on her for the next 24 hours.

Let me pause here to day that we have many friends who are in the nursing field and we are very humbled by what they have to do each day. I admit that it is very easy to be 100% in favor of their career choice when I am home sitting behind the computer, but it was difficult to maintain that opinion whenever Sera's medication began to wear off and the nurses were not on site immediately to attend to her. I apologize for being selfish when it came to keeping Sera comfortable at the cost of other patients on the floor getting adequate attention as well. Thank you to all nurses for dealing with those emotions from every family every day!

I returned home to check in on our other 3 children and then returned with them so that Sera could see them in person. This made her quite happy and although the meds had her sleeping for a portion of the time we were there, she enjoyed chatting with them when she was awake. Unfortunately she was awake when it was time for us to go, and it took a long time to get us out the door so that the other children could get home, eat a late dinner and get to bed.

This is where I have to again remind the reader that my wife is a saint. Though not an early morning person, she was the first to wake up Tuesday morning, she was the primary caregiver all day in the hospital and she was the one spending the night with Sera where it would be virtually impossible to sleep with all the nurses coming by throughout the night to attend to Sera's needs. Meanwhile, after letting the kids serve themselves from an awesome meal that a VP at my company graciously supplied, I had them help clean up and get ready for bed. After watching a show with my oldest son, I was in bed at 10 PM and slept soundly until 7 AM the next morning. I had a nice breakfast and got a little work done before returning to the hospital, all while Angela was there the whole time on very little sleep and still making herself available to every need of Seraphina. The next time you think WE are doing something terrific to adopt a child with a special need, you'll need to amend that to a SHE to be more accurate.

As for Sera, by the time I arrived around noon on Wednesday, she was doing terrific. When the physical therapist came by with a walker, Sera hopped out of bed and quickly adapted to moving around the room with the assistance of the device. We opted to skip the wheelchair rental and instead use a borrowed stroller to serve the same function. We also passed on a special device to allow her to lie down in the car while traveling, instead using the existing captain's chairs in the minivan in a reclined position.

By 3:30 PM on Wednesday, we were packed up and heading home. It took just over 24 hours between having a foot amputated and walking to the car under her own power. You go girl!

It's great to be home. We can begin working towards a more standard schedule and give some much-needed attention to the other kids who did a fantastic job of taking care of themselves whenever both Angela and I were at the hospital. But we're not totally in the clear yet. Sera is still taking medication to handle the pain. You can tell when the drugs are wearing off as she immediately begins complaining about the cast being too tight and the leg hurting. Per doctor's orders, she is on two different medications for pain which are staggered around the clock. There is usually a good amount of stress during the half hour before and after the doses are given. This will also be the first night without nurses to help and I expect Angela will get the lion's share of the caregiving. I will help as I can, but she has the patience I lack when things don't go the way I would hope. Did I mention she's a living saint?

So what's left? Seraphina will remain in the spica cast for 6-8 weeks while the leg heals. We have an appointment with Dr Brighton at the end of March to check on the results and see if the brace is ready to come off. Shortly after brace removal, we will make plans for a week-long trip to FL where we will meet the prosthetist in person for the first time and get Seraphina's new leg complete with mechanical knee. The trip will last 7-10 days. After that, she'll begin learning to ride a bike -- after all, that was the promise that began this whole ordeal.

I would be remiss if I didn't thank ALL the friends, family, co-workers and even strangers who have offered prayers and best wishes during the past few days. As mentioned above, the VP of my company unexpectedly provided a meal for us (I highly recommend the garlic bread at DaVinci's in Davis Lake as long as you LOVE garlic or are scared of vampires -- both are applicable for me). My sister-in-law was adamant about sending a care package arriving tomorrow. My brother knew a nurse on our floor and the nurse during post-op recovery was neighbor's with a workout buddy. Practically everyone has offered to help in any way they can. All of your thoughts and actions are most appreciated. We have been humbled by all the support you have offered. People are amazing in times of crisis.

Feb 15, 2016

Say Goodbye to the Foot

I don't know that anyone is actively following this blog now that we have been home from China for almost two months but a new entry was warranted as we move forward on surgery for Seraphina. For the past couple weeks, she has not been wearing the temporary device she received in China, complaining that it hurt too much to wear it. We are not surprised as it looked painful even when we were overseas.

If anyone thought we might wait for a while before taking action with her congenitally deformed left leg, they'd be wrong. One month after arriving home from China (1/18/16), we had an appointment with a pediatric orthopedic at Levine Children's Hospital. The doctor took x-rays of Sera's foot and then reviewed them with us and recommended a Syme's amputation -- removal of the foot at the ankle joint and then wrapping the "heel skin" around the bottom portion for added durability. Additionally he would straighten the petite femur in-line with the tibia and fuse the two bones together to remove any play in the residual limb.

Based on our own research and talk with parents who have adopted children with similar special needs, we agreed with the diagnosis and began preparations for a surgery date. In the meantime, we reached out again to Prosthetic & Orthotic Associates (POA) in Orlando to get information on what to do post surgery. We spoke with more parents that had used POA and heard of another option for surgery -- the Boyd method -- and asked our doctor about the alternative. He was very helpful, calling us back in the evening to talk at length about the two procedures and why we might choose one over the other. In the end, based on Sera's unique skeletal system, we opted to stick with the original plan.

We also met with a local prosthetist at the request of the surgeon. He felt it would be worth considering the option of having a local source for future needs, and implied that during the first couple of months post-surgery, we would be dealing with him for PT anyway. As it turns out, his contact participates in the same fitness group that I am in. We met with him on January 28 and he took the time to show us the technology and provide a timeline of what to expect as Sera grows. He and Sera hit it off immediately and I think she thought she might be getting her new leg that same day, especially when the prosthetist mentioned customizing the socket with anything Sera liked (e.g. a design on her t-shirt, a picture from the internet) and the option of paintable toe nails!

While we were comfortable with him, we still felt the need to work initially with POA in Orlando. They have been holding out hands ever since we first received a referral for Sera. I am pretty certain we would not have adopted Sera had Stephanie not called me back on Labor Day 2015 and spoken with me for over an hour about her condition. I'm too loyal not to reward that assistance, especially given the glowing references from so many of the families that have used them.

With all that information behind us, surgery is set for TOMORROW -- Tuesday the 16th -- at 7AM. We are told she will be in surgery for about 4 hours and will remain at the hospital for 3-5 days for observation. Once released, we are being told to expect 8-9 weeks for recovery to the point that we can remove the body cast and head for Florida to finally meet the POA staff in person.

Angela plans to stay with Sera most of the time that she is in the hospital while I shuttle back and forth to watch the other 3 kids at home. So many people have offered to help and we are thankful for that as well as all the spiritual support in the form of prayers. Aside from the anxiety of not knowing what to expect over the next several weeks, I think we are as ready as we can be for the adventure.

I may not be able to provide daily updates over the next several days and week, but I'll try to hit the highlights so everyone can remain in the loop. Take care!