Thursday, August 11, 2016

Post-Op Update

Waiting is Hard (about 3 hours into surgery)

While everything that happened yesterday was extremely complicated and over my head, I'm going to do my best to try to explain the details of it. Ask me questions if this is clear as mud...

The surgery itself consisted of the nerve graft and bone shaping on the inside corner of Josie's eye. 
Small incision below her eye for bone shaping

The nerve was harvested by using a scope and going in through a small incision made behind her right ankle bone. The harvested nerve ran the length of her lower leg and extended to the outside of her foot (this nerve is a sensory nerve, so Josie will loose some feeling on the outside of her foot but will not loose any motor function). Once harvested, the nerve was connected or "plugged in" to her facial nerve on the right side of her face or her "good side". To do this Dr. O made an incision that ran parallel to Josie's right ear.  After connecting the grafted nerve, Dr. O tunneled it across Josie's "good side" and over her upper lip using the incision by her ear as well as two small incisions made inside her mouth and a final one made next to her left ear.
So to put this more simply, imagine the grafted nerve as an extension cord that has been plugged into a working outlet (the outlet being her facial nerve on her good side) and then extended over to the area it is needed (the left side of her face). Over the span of the next 4-12 months the grafted nerve will gradually gain power and ultimately come back to life. When her nerve starts to come back to life she will experience a zinging sensation on her left cheek when the right cheek is touched. Once that zinging sensation starts the second step in the reanimation process will need to happen within 1-2 mos. 
Her leg is wrapped to help with swelling

The bone shaping was the simple part of yesterday's surgery. Because of the tumor, Josie has excess bone growth on her cheek bone. Her doctors shaved the bone down on the inner corner below her eye through a small incision. 

There were several other issues that her doctors had hoped to address during yesterday's surgery but because of the length of time spent under anesthesia and the many incisions that she had already they decided against further complicating her recovery. This may result in another small surgery yet this year, we'll know more after we follow-up with her doctors next week.

While the crazy guy was trying to climb Trump tower with suction cups last night, Josie was waking up in recovery. After 7 hours of sedation she did have more tummy issues than normal (for her) that lasted into the the early hours of the morning. This led to her being slow to eat, drink, walk and feel better today but ultimately she did and was released from the hospital shortly after 6 this evening. Her swelling is minimal and she has bruising that is just starting to show but overall I've been surprised with the ease of her recovery so far. We head back to the hospital to have a drain removed in the morning and then we end our stay next week with a follow-up appointment with her doctors. We are going to have to start facing next steps sooner than our comfort level allows, but for now we're enjoying the calm and relief of having another big surgery behind us.
Blogging and Sleeping

Wednesday, August 10, 2016


Today. Today I sit in this all too familiar waiting room of Lenox Hill hospital. I'm sitting here trying to process emotions, thoughts, and fully encompass all of the ups, downs and in-between that have brought us to this monumental moment in our lives; today. I'm flooded with memories of the early days of surgeries and carrying my sweet 4-year old in for her first big surgery with Dr. Waner. I'm remembering the battles fought with insurance companies; the disappointments; the tears; the excitement of seeing Josie's tumor slowly fading away, surgery by surgery. Today is the precious day that makes all the tears and pain over the past 9 years worth it. Today Josie's doctors have made the impossible possible; they say she is "disease free". Today her doctors have begun the process of bringing back her smile. Today is not easy, but my heart is so grateful and full. Today is a good day.

Surgery began around 9:30 this morning (eastern time) and is expected to go all day. We've heard at the very least to expect surgery to last 5 hours, but I heard another doctor say to expect 6 p.m. tonight. While the doctors have a laundry list to accomplish today we find comfort in knowing that Josie is in the best hands humanly possible; one of God's many gifts in our lives. I will do my best to post an update after surgery, in the meantime we have the best distractions with us today.

Wednesday, April 20, 2016

A lot to Smile About

We had a great visit to New York this past weekend. It was a dual purpose trip for me as I was working a good portion of it with my sister, Holly at NY's bridal week. Holly has been modeling at markets for a wholesale bridal and prom company called Allure Bridals since she was 19. When Brooks and Josie were almost a year old Holly talked me into going on my first market trip and the rest is history. We look forward to these trips as much for the sister bonding as getting to see our second family with Allure.
Dave and Josie arrived in the city on Saturday and spent much of the weekend enjoying the sights before our appointments at the start of the week. Josie was able to stop by the bridal market and see what mom does when she says she's "working a market". I was tickled to get to show her off and for her to see her Aunt Holly in all the pretty dresses. It was definitely a memorable trip.

Dr. O & Dr. Waner
We spent a good portion of Tuesday morning in the offices of Dr. O & Dr. Waner. It always feels a little like coming home for me when we walk into their offices. Several of their staff have remained the same since we first met in November of 2011, even after they switched hospitals. I always have the strong urge to greet all of them with a big hug, but force myself to keep my arms at my sides.

Both doctors agreed that Josie's tumor showed little to no growth and that her asymmetries were due "simply" to differences in bone growth. Now I know shaving & shaping bone sounds awful and complicated, but it is a small victory to us that her tumor has stayed at bay for the past 2 years. Any bone work that Josie has had done in the past has healed relatively quick and given her little to no discomfort. We were enthusiastically given the green light to begin the reanimation process starting this summer (shaping the bone beneath her eye will also happen during this surgery).

Dr. O spent a good amount of time walking us through slides and video of the reanimation procedures as well as before and after photos and videos of patients. Their results were so exciting and reassuring to us, as were Dr. Waner's words..."there is a nearly 100% success rate". The following video is of a boy who had the reanimation procedures. While he has a different reason for facial paralysis, his results make my heart happy. The video also gives a good idea of what will happen clinically during Josie's procedures.

The Super Dr. Super

Dr. O and Dr. Waner were insistent that we meet a Maxillofacial surgeon that they have worked very closely with. I have to admit I had my reservations about meeting Dr. Super. I worried about opinions not matching up with our University of Iowa doctor and being forced to decide which was right. I worry way too much. 

While the meeting very nearly didn't happen due to a last minute emergency surgery & our overlapping appointments, the super Dr. Super made it happen for us. From our first hand-shake and exchange of greetings we were drawn in to Dr. Super. The picture used from his website does not do him justice, he was so kind-hearted and had this Santa-type smile. 

We went into our appointment with him knowing that he was out of network for us and that we'd have to cover the cost of the office visit. During our visit with him he said he wanted to take a baseline CT scan while we were there as well as photos. Knowing how much scans would be out of pocket I asked if we could wait to have the scans done at home with someone in network. Without hesitation he said "how about charge." I know other doctors have done this, but for the most part this doesn't happen for us. We both thanked him profusely & his response was "see, we New Yorkers aren't all bad." He took his time, looked at her scans with us & agreed with our U of Iowa doctor in that her jaw bone is symmetrical and that he saw no problems or urgent needs other than preventative orthodontia. He is going to work with our Iowa pediatric dentist to set up a treatment plan. 

I looked at Dave after leaving his office and said all of that was well worth the $250 office fee. What peace of mind; that is just completely priceless to me. The only down side to the whole visit with Dr. Super was that we really, really liked him and want to continue under his care. He has treated other patients with Josie's diagnosis & he has a phenomenal track record (if you look him up). We're hopeful that our insurance works with us.

Speaking of looking him up, after our visit I was reading more about Dr. Super and found that he isn't just any old Maxillofacial surgeon. He is THE Chief of Oral & Maxillofacial Surgery at Lenox Hill as well as the Director for the Center of Dentofacial Deformities and Corrective Jaw Surgery. 

My take away lesson from this trip: it takes a village of specialists when it comes to treating complicated cases. I need to stop fearing what we'll find out next & just be thankful that God keeps opening all the right doors for us.   

Thursday, February 11, 2016

I am sorely overdue for sharing updates regarding Josie, but the truth is, since my last post (almost a year ago) there really hasn't been much to share. There has been a lot of boring footwork since then but I will spare you the details of all of that. The quick update is this...we did end up seeing a Maxillofacial surgeon in Iowa City last spring (at Dr. Waner's request) and his opinion was that Josie did not need to have Orthognathic surgery (reconstruction of the jaw) at this time. His recommendation was to monitor her on a yearly basis and if need be, have the surgery when she's 16. While we were very relieved to hear this, Josie's doctors in NY had warned us to expect this answer from most surgeons.

Fast forward 11 months and today you find us planning an April trip to New York. Josie's doctors would like to see her for a consultation before beginning the facial reanimation process, we are also going to be meeting with one of their recommended Maxillofacial surgeons while we are there. At this point details are pretty vague beyond that. We are very anxious to get our face time with her team of doctors and to have our numerous questions answered.

This whole process is very consuming and triggers a lot of emotions and anxiety (for our whole family). We have hesitated to talk about this trip, even with our extended family just to spare Josie's nerves. She has a lot of anxiety about surgeries and hates for us to talk about it in front of her. We're hoping this can be our quiet way to share updates without causing her added anxiety. Thank you to all of you who continue to ask about Josie and lend your support! It's hard to believe that this whole process began just 4 short years ago.

Monday, March 2, 2015

Next Steps . . . Ortho-what???

It's been nearly 3 months since I last posted. In that time Josie has quickly bounced back to her happy self, we survived celebrated the flu holiday season, and the scars of surgery #6 have already begun to fade. Watching Josie heal is truly a beautiful thing.

Next Steps . . . Ortho-what???
We were sent home from New York with the good (and scary) news that Josie gets to have her next surgery at home. We were given instructions to find a good maxillofacial surgeon that can perform an orthognathic surgery (Josie's upper and lower jaw-bone is over-grown due to her tumor so this surgery will correct that). I think it is so stressful shopping for a great surgeon and I shared my concerns with Dr. O before we left NY. She assured me that they would give the final blessing in our selection and that has given us a little more confidence in this whole doctor shopping process.

We decided to start our search by talking with our pediatric dentist and from his suggestions we now have two doctors that we will be meeting with in the coming weeks. Our first appointment will be at the University of Iowa next week and then the following week we will meet with a doctor in Des Moines. Once we have selected a surgeon, Josie will most likely have surgery this summer.

Josie will have to undergo another MRI at some point this summer, they will be looking for any sign of re-growth in the tumor. If there isn't any significant growth, and once the orthognathic surgery is behind us, Josie could technically begin the reanimation procedures at anytime. I find myself constantly trying to look ahead and guess what will be best for Josie (that's the planner in me) and all the while I know what experience has taught us . . . we just need to cross one bridge at a time. Always easier said than done. So that is where we are right now and that is where I'll leave you.
Just noticed poor Millie in the background . . . she had the flu :(

Tuesday, November 25, 2014

Coming Home...

Our bags are packed, our room is clean & now we just hurry up and wait until it's time to go home. Our flight isn't until 7 so I'll post a few of our adventures from the past couple days...

Our friend from home was in the city for his job, so we arranged to meet up Sunday. His friendly, familiar face was just what we (I) needed and I know I talked so much that he really didn't get too many words in edge-wise. He absolutely spoiled us by taking us to see the Rockettes at Radio City Music Hall. His visit was hands down the high-light of this trip.

Josie had an appointment with the clinic yesterday. We ended up leaving with the drain in & were to come back this morning to possibly have it removed. In our spare time Josie chose to go back to FAO Swartz, this time our moods were much lighter. We discovered life-size characters made of Legos that we'd missed last week (Josie is posing next to the big man himself above). It was such a beautiful day out yesterday (68 degrees), so we walked extra slow back from the toy store.

We went to the clinic early this morning and again left with the drain still in. They said her forehead looks "perfect", her incision looks great, her drain amounts are going down, but Dr. Waner said he'd like to be cautious & leave it in for a few more days. We are a-okay with his decision. We found a soft head band yesterday that protects her incision & drain tube, it is much cooler than the winter hat she has been choosing to wear.
We are currently killing time in the RMH playroom. The artist is busy with her latest creation. Just 30 more minutes and our cab arrives to take us to the ready to be one step closer to home!!!

Sunday, November 23, 2014

This & That

Before we left for NY last week a dear friend of ours messaged that he would be in NY for business during our stay & we have arranged to hang out today. While we are anxiously awaiting his arrival I thought I could pass some time by posting a few pictures for updates. 
Josie's incision is very hard to show with pictures, but essentially it starts at the temple just into her hairline & zig-zags along the hairline all the way across to the opposite temple. I haven't counted, but there are lots of little staples in there. She tells me that it really itches, but otherwise has no pain. She was only on Tylenol & Motrin for the first couple days. 

It's pretty obvious where they put the drain in, we are hopeful this can come out before we fly home Tuesday night. You may notice two tiny sutures in the middle of her forehead, this is where they released fluid before they inserted the drain. I wish I had a before picture showing the swelling, but I guess you'll just have to take my word that the drain helped tremendously. 
After Josie's bandages were removed & the drain inserted, we were told no hair washing until the drain is out. For the first couple of days Josie resorted to wearing a knit hat I had brought for myself. It has worked perfectly & I'm so glad I brought it. Yesterday I was able to lightly comb through her hair & put a couple loose braids in. Since then she's ditched the hat :-) 
Yesterday we had a wonderfully boring day of laundry & movie marathons. We ended our day with the RMH annual PJ Party Night. Volunteers from The Company Store served a great meal and Josie & I were given some pretty sweet holiday PJ's (pictured above). We participated in some fun activities & games, it was a great way to end our day. 

Tomorrow we head back to the clinic to meet one last time with her doctors. They'll check her incision, possibly remove her drain, and we'll talk more about next steps. It's supposed to be a balmy 68 degrees, so if there's no rain, you'll most likely find us in the park!