From October 24th (PM) to the morning of October 30th, we were in Wilmington, Delaware because Emma had leg surgery to fix her "ostrich legs" from bending forward at the knee area. The medical term for how her legs bent is called Genu Recurvatum and is common with her genetic condition of Meier-Gorlin Syndrome. The surgery was a double Distal Femoral Osteotomy, completed by Dr. William Mackenzie and his son, Dr. Stuart Mackenzie. They cut part of her femur bone because the leg bones were next to each other on the ends instead of the femur being above the fibula and tibia. The trip took us a two day drive since Emma has way too much medical stuff, it's just not possible to fly with her. We stopped in a hotel at the halfway point in North Carolina on the way there and back. Each day we were in the car for about nine to ten hours.
On October 25th, on top of Michael already being on edge due to Emma's surgery the next day, he got a phone call at 6:30am advising that our small dog, Sasha, who was in a pet boarding facility for the week, had somehow been attacked by another dog and needed a lot of stitches. I was more worried about her than Emma since Sasha is already towards the end of her years- she turned 14 in August.
We spent six hours at Nemours/Alfred I. DuPont Children's Hospital because there were a lot of doctors she needed to see and make sure she was healthy for surgery the next day. In fact, we also had to drive up to Lakeland (just about an hour away from where we live now in Sarasota, FL) a couple days prior to our medical trip to see a cardiologist to make sure everything was good with her heart too, since there were notes in Emma's history/charts. They didn't have Emma scheduled to see a cardiologist in Delaware.
She did have the following appointments scheduled:
A Covid-19 Nasal Swab; Xray of the spine, knee and lower extremities; Orthopedics consult with Dr. Mackenzie's assistant, Colleen; Gait Analysis, which was a woman watching how Emma moved around while playing with toys; last minute chest Xray added to the schedule; Pulmonology; and meeting with a very nice pediatrician who works with medically complex kids. Emma did so well during all of the appointments, even the Covid swab and Xrays! But later she fell asleep in Michael's arms.
Pulmonology had wanted us to get the chest Xray and we found that her left lung did not look as open as it had when we went to the Nemours in Orlando in April. They said, since Emma didn't seem to have any issues or require frequent oxygen, it was possibly due to being in the car for two days on the drive up. She was hunched over a bit on the way and gagging every hour, but when Michael switched the booster carseat to face the back, she seemed much more comfortable and the gagging stopped. However, because of the current Xray, they wanted us to do percussions on her left side and back, while laying on her right side, which was a harder position with the hip spica cast, after treatments to help drain any secretions. The entailed taking a soft cup and gently hitting her back for three to five minutes. She didn't enjoy that very much and kept trying to grab it from Michael.
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| Xray from April ^^ |
That night we gave Emma a special bath with the CHG soap we were mailed. We had to turn her formula off at 10:30pm and give her Pedialyte from then until 4:30am. The morning of the surgery (Tuesday, October 26th) we woke up at 4am to do her treatments, and get to the hospital by 5:45am for our 6am check in at Surgical Services. Michael went back with her since he was so nervous and worried and anxious about the surgery- mainly about her not waking up from the anesthesia. But, while I am usually the stressed and worried one, when it comes to surgery and things that I have zero control over, I feel calm and faithful that God will take care of everything, like He did for her all those other times in the Orlando NICU and during her way more intense airway surgery in Michigan when she was only six months old! Plus we came all the way to Delaware because Dr. Mackenzie was recommended as the best doctor in the nation to do this surgery.
The surgery started at 8:42am. There was a very nice nurse liaison who gave everyone updates every hour. In Michigan, during Emma's surgery, Michael and I watched four movies of our choosing and were pretty alone in the room. I guess not many kids were in surgery that day? In Delaware, we were in a room with probably ten other couples, and had no control over the TV which played a fancy indoor kitchen grill advertisement for a long time. The time didn't seem to go by as slowly as I thought it would. I kept leaving the waiting area to go do different things, like check out the cafeteria area, bought a couple items from the hospital gift shop, went to the bathroom, and the cafeteria again when we wanted lunch.
The surgery was done by 2pm and when I came back from another bathroom break, both Dr. Mackenzies were talking to Michael about how the surgery went. We were told it was a "fabulous redaction". Emma now has plates in her leg to connect the bone, as well as temporary pins, which they will take out when we go back in December. We were told we might need to come back next October to get the plates taken out of her bones. I let Michael go back first again to see Emma in recovery since he was still so anxious and worried because there could be issues with her recovery, such as infections or blood clots. I wasn't worried about that either.
I was brought back to recovery before 3pm and by 3:45pm we were taken upstairs with Emma to a regular PACU room: post anesthesia care unit. They had given her a hip spica cast that came up above her waist, which they had told us about the day before, versus just getting two bent leg casts like they originally said she would get when we talked to Dr. William Mackenzie and Colleen in April. Emma was on medications such as Toradol, which is like Tylenol, and others as the anesthesia wore off. She was pretty crabby and just wanted us to hold her a lot, but we didn't at all the first day. We weren't sure how to hold her with this cast, plus she needed to rest as much as possible, and there were lots of extra cords and tubes that she was attached to. Her arms, hands, and feet were puffy from the IV fluids. Michael and I stayed until 7:50pm, and then slept for ten hours at our hotel! This time we decided against staying in the Ronald McDonald House due to Covid, and wanting to be around as few people as possible, especially on the days that Emma was not in the hospital, but still in Delaware.
I was pretty hyper when we left because Michael and I got to hold hands, and I was actually able to sit in the front seat with him and he could hold his hand on my leg like we used to. Since Emma came home from the NICU at 11 months old (May 2018), one of us always has to "play paramedic" and sit in the back next to Emma for when she needs her trach suctioned or anything else.
On Wednesday, October 27th, we were happy to wake up by our alarms and not from any calls from the hospital about something being wrong. We were told that Emma was being too grabby (trying to pull out her IV and leads) so they had to put a little medical mitten on her. Emma got a morning visit from a therapy dog named Soleil, which means "sunshine", but she didn't pay much attention. A woman from Child Life dropped off a craft bag for us and Michael and I decorated a plastic mason jar lantern. Later, another woman gave us a butterfly Halloween costume for her. We'll have to save it for a while though because it's for ages five to six, and while Emma is four years old, she is still mostly wearing 18 month clothes.
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| ^^ Dr. Stuart Mackenzie |
At 1:30pm we went down with her to the Cast Room for cast peddling. They sawed off part of the cast near the top stomach area (that made Emma cry) and cut the plastic, cotton, and other hard parts with heavy duty scissors so her G-tube mini button was much easier to access. They also put tape over the edges where they had cut it. At 2:35pm we were back up in her room and she was started on Kate Farms formula, which is what she gets at home. Two girls from Physical Therapy came and I was interested to see what they would be able to do with her, but they were just there to teach us about how to work with the hip spica cast and give us a loaner car seat for our drive home and back. With her bulky casts she can't fit into her car seat- or more accurately, with the pillows and rolls she needs to support the casts, the seat belt straps are not long enough to secure her in. She was assigned a monstrous car seat called The Wallenberg, which looks like the first car seat ever invented! I joked about there being spiders in all the shoulder strap pockets.
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| Cast waist area Before, with difficult access to connect the G-tube. ^^ |
Michael and I went for a walk around the parking lot in the afternoon because the weather was so nice and Fall hadn't reached Florida yet (although the past few days it has been around 63 degrees)! We also stopped into the cafeteria for some lunch food, but I was getting most of my food from the hospital room service menu. We were able to get an entree, two sides, a dessert and a drink for six bucks!
When we got back at 4:30pm (we were gone probably less than an hour), Emma took advantage of being alone in her room and pulled out her IV!! We walked in to see free baby hands, and one band-aid on her wrist. Lasiks were given around 5:15 to help reduce her puffiness and a pharmacist came up with a bag of various medicines for us to take home. Michael and I did her trach care ourselves that night and also brushed her teeth and swabbed her mouth, which she desperately needed, since all the meds she was on caused her to get a thick film on her teeth. Michael put the Wallenberg into our car that night. It is so big that the front passenger seat has to be pushed forward a lot, and I had to sit in the back seat by myself. Booo.
On Thursday, October 28th, Emma's oxygen was turned back to room air (21%, the amount we all breathe). It had been turned up the previous days to 30% due to her discomfort and crabbiness, which raised her heart rate up to between 148-160 bpm. Normally it is around 120 bpm when she is awake. Dr. Maguire, the really nice complex care pediatrician, came by again told us that the goal was to get Emma discharged by dinner time, but they first had to make sure that she could tolerate having her Breath Rate off on the vent, like she normally does at home during the day, that her hemoglobin levels are good, and that she can tolerate her formula again for three hours. This was because they had to put her back on the Enfalyte electrolyte drink overtime since her tummy was distended from too much formula and her heart rate was up.
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| Prayer shawl made by Emma's occupational therapist, Meredith, and her knitting group! |
I was disappointed to find out at 12:30 that a test hadn't actually been ordered to check her hemoglobin like Dr. Maguire thought it had! At 1:10pm we went with Emma back to the cast room. That morning Drs. William and Stuart Mackenzie both came in again and were appalled that not much of the cast had been adjusted. She was taken down in a big girl wheelchair (vs moving her whole bed downstairs like they did the first time) and they "wolfed" the butt part, which meant taking big pliers and bending it up so it wasn't right against her baby butt crack area and the back of the diaper would be easier to tuck in. The guy also put moleskin against the top back area. We were given extra tape and moleskin to take home.
At 3:30 we found out that the previously planned hemoglobin draw with a butterfly needle had been canceled! Hooray! When Emma was napping in her wheelchair, her heart rate was 100-110 for a long enough time that he said it was fine and the hemoglobin check was not needed. He had assumed that the high heart rate overnight was from her being uncomfortable from getting too much formula. He also said that she was fine to tolerate the formula for two hours instead of three, so I put on The Wizard of Oz for us to watch. That movie was almost two hours, so when it was over, we could get packed up! During this time Michael went to the Once Upon a Child resale store and bought a handful of dresses for Emma since that would be the easiest thing for her to wear.
Also during the movie, a woman named Angie came in and asked if I remembered her from the Little People of America convention that we went to over three years ago! I told her no. However, when she told me that she worked with geneticist Dr. Michael Bober, and that we had signed a consent form in July 2018 during a primordial dwarfism conference, I did remember that. There is such little information online about Emma's condition, Meier-Gorlin Syndrome, so Michael and I were happy to sign forms saying they could access her medical records for their research. Angie simply asked me to sign an updated form now that we were at a new hospital, which I did. She also suggested that we try to get an appointment with Dr. Bober when we come back up in December.
Emma fell asleep again while watching The Wizard of Oz, but the movie ended at 5:40pm along with her formula feed and we began packing up at 6 o'clock! We were able to take everything from her room, so I filled up a medical goodie bag of trach ties, all her diapers and bladder pads, sodium chloride bullets used to clear her suction catheter, soaps, and lost of other "free" supplies! We were out the door by 6:30.
Once we were back in the hotel, Emma seemed a lot happier and more relaxed- as anyone would. She didn't seem to get much sleep those two nights in the hospital and would only sleep really well when we were holding her. There were a couple times when a nurse would come in and say she needed to check Emma's diaper or take her blood pressure again for the tenth time that day, and we politely asked them to come back when she was awake. We alternated between giving her Tylenol and Ibuprofen through her G-tube every four to six hours as she needed it, and gave her a small dose of Valium if she was acting extra unhappy. On Friday morning she smiled for the first time since the day before surgery!! Her last dose of medicine was given on November 1st when we were back home in Sarasota. She never needed the oxycodone or any stool softeners that we were given.
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| More percussions. ^^ |
Emma is recovering well, as is our dog Sasha after her attack. Both act like nothing is wrong and are their usual happy, playful selves. Emma seems used to the hip spica cast and probably, sadly, thinks it is just one more thing she has to live with. She'll be so happy when it gets taken off and she can teach herself new ways to crawl around the house, and one day standing and running!!
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