Discovering Our New Normal:

No Time for Messing About

Shortly after returning from our Parisian excursion, we had to bolt into holiday mode. With only one day left 'til the end of October, Halloween was on our heels and we had to scramble quickly for some get-up. Normally I hand-make our kids' costumes every year, but with my sewing machine being located in some obscure cardboard box, off to the market we went to rummage through the clearance costumes bound for rubbish in a matter of days.

We happened upon three terrific finds: a witch, a ghost, and some gorilla-man accessories. We were set...but now what?!?!?! We knew that Halloween wasn't a widely celebrated holiday throughout the UK, but had also heard talk of trick-or-treating and lit up pumpkins signaling candymongers. We decided to reach out to a new friend and ask for some guidance and were speedily adopted into their trick-or-treating escapades. Apparently, houses sporting a lit up jack-o-lantern out front are those welcoming zombies, witches, and other scary sorts whilst promising sugary treats.

The UK definitely enjoys the scarier and bloodier version of All Hallows' Eve. It was my first October 31st in over three years where I wasn't keeping tally of how many Elsa costumes I stumbled upon. Needless to say, next year I will be ready to bring on the gore!

As you can see, AJ last minute, decided to sport his spider costume from Halloweens past instead. Oh well!

Time for School

Our acceptance letters for school placement finally arrived for both of the older children. The only problem was they were accepted into two DIFFERENT schools located over a mile apart and starting times differing by a mere 10 minutes. As optimistic as I am, I didn't think Paisley was up for a 10 minute mile walk every day. You see, there is no bussing system if you live within 2 miles of the school. There is no parking and no drop-off lane. Walking is your only option.

We were feeling slightly defeated. We had been patiently waiting for over a month for school slots and were already two weeks into the second term of the school year; our kids were undoubtably behind! We decided to call the council and see if there was any way to get the kids into the same school. Their answer was less than helpful. They encouraged us to accept the school slots first and then file for an appeal and get results in 6-8 weeks. The already convoluted application process had me reeling, now we had to go through another windy course of action to get my kids in the same school!

We decided to call the schools directly, starting with the one furthest away with the earlier start time, to see if they would allow early drop-off in order to get my son to his school in a timely manner. Not only was the answer "no", but after realizing whom they were addressing, they quickly offered up a new solution entirely. They had just attained a school slot in AJ's year group and would gladly accept him into their facility. Then I dropped the bomb...AJ has autism. They were unaware of his educational needs and would need to rescind their offer until an interview could be completed with us and AJ to confirm his educational requirements could be successfully provided within their school. 

We met with the special education needs coordinator (SEN-CO), dean of admissions, and the headmistress. They agreed to enroll AJ under their current availabilities for support staff. It wasn't until after visiting their classroom that I started to have an anxiety attack! The teacher, in all her delightfulness, is fresh off the boat/straight out of Poland and speaks with a heavy Polish accent and very broken sentence structure. You can probably imagine where I am going with this! Looking at the current curriculum on the writing boards and glancing over the homework his fellow students were completing almost ran me off the edge. They were writing stories, full paragraph stories, IN CURSIVE! They were working on multiplication tables and reading chapter books. My head was spinning and my stomach collapsing. 

I sang out in protest that this was above and beyond my son's capability. The last thing I wanted to see was my son sinking into an abyss and overwhelmed by his peers and demands. I insisted they drop him a grade level that would closer resemble that of 1st grade in America. The faculty assured us that AJ would be better off among kids in his age group, however, they would cater his educational needs individually. In other words, he would be administered year 1 curriculum in a year 2 environment. Their culture believes his social well-being comes first. They would rather exhaust man-power and operate a one-man classroom within their classroom than not allow AJ access to students his own age. 

I was hesitant, at a minimum, in my acceptance but found myself with no other choice. They relished the thought of AJ joining their team and assured us he would be looked after. Six weeks into the "new year" and I can gleefully exclaim that AJ is thriving. No, he is not reading chapter books or writing in cursive...yet, but I can see a steady and fast uphill gain in every aspect of his life. He is reading better and faster than I ever thought he could, he is whizzing right through his spelling tests, and math and science seem to be his strengths. AJ's teacher dotes on him and frequently tells me how impressed she is by his retention skills. She says, "I literally have to show him something ONE TIME, and he has got it! He is a smart young man, VERY BRIGHT!" 

Let me just be real for a split second: If you are mom of a child with special needs, you can't help but "crystal ball" their entire life. You CAN'T help it! You envision all worst-case scenarios in your mind and pray fervently that none of them will come true. One of my greatest fears going through this life would be for AJ to not be able to complete high-school. The drop-out rate for children on the spectrum is quite high! It's a real, tangible fear that I face every year during assessments...that one day someone will tell me my son has peaked. Every meeting and every assessment I hold my breath until I hear the words of encouragement and praise that AJ is succeeding and moving on to the next level. He is my "Little Engine that Could" in every sense of the word.

Paisley, on the other hand, loves everything there is about school from the school lunches to the play-based infrastructure. She loves her uniform and recounts daily on our 1.5 mile hike home about her happenings on the playground, what child was in time-out, and who won the title of her best friend for the day! She is growing up so fast and reports her favorite time of day is afternoon recess where she meets up with AJ on the "big playground" to play! She tells me, "Don't worry, mom. I make sure AJ has someone to play with everyday." There aren't words available to me to express my bountiful gift that is my daughter. Suffice it to say that yes, God gave me AJ, but He ALSO gave me Paisley. They are a package deal. Paisley is my eyes and my hands when I can't be there. She is his "Guardian Angel" in every sense of the word. 

 Although we were extremely late, a "first day of school" picture had to be snapped:

So Much to be Thankful For

No surprise, England doesn't celebrate the American Thanksgiving, LOL! Having access to a nearby Air Force base does have its perks. All our recognizable fixings including Libby's canned pumpkin, Crisco, and Swanson's chicken broth would be easily attainable in order to put on the much anticipated Thanksgiving feast. However, this year, we were hard-pressed to pin a date to celebrate. Neither the kids nor Aaron would be released from school on the annual Thursday for the long-established four-day weekend. Instead, it was just me hanging out at home with baby Channing cleaning and carrying on as usual. How depressing!

Thankfully, the Warden of Aaron's college recognized the opportunity to defeat despair and decided to host a traditional American Thanksgiving dine-in at the university. Aaron was pulled into a very "important" planning meeting to discuss the menu. It was the first time the chef had heard the words: green bean casserole! Aaron requested the presence of marshmallows atop the whipped sweet potatoes, brown gravy, as well as homestyle serving. The Warden, taking thorough notes, guaranteed us a spot at the table for our whole family including room enough for a high-chair. He even included sparkling cider for his non-alcohol partaking students. Our calendaring dilemma was solved. Thanksgiving this year would be celebrated among other American Ex-pats at New College, Oxford!

The NHS Up Close and Personal

If you are friends with us on Facebook, you will have undoubtably heard about our tragic accident with Channing. I was vacuuming the front room in order to put up the Christmas tree. My new British vacuum is constructed much differently than my hoover back home. I have to unhook the feed into the main collection trap and attach an additional hose to use the accessories. The additional hose is short and has very little give to it, in other words, if you pull it too much past 3 feet away from its base, it will tip the entire unit over. In contrast, when my American vacuum is upright, the motorized head turns off and directs all power to the hose. Unbeknownst to me, that is not the case in my British hoover. Apparently, the rotation head continues to spin as long as the vacuum has power.

I had tipped the vacuum over several times during my cleaning only to reposition it again and again while covering the entire front room. On my last corner of the living space, I optimistically reached too far causing the hoover to once again tumble on its side. Determined to just finish the job, I made the split-decision to ignore it. Channing had other plans!

My little shadow sat not but inches away from the leaning turbine and decided to investigate. She stuck her hand straight into the rotating head and it was instantly sucked up inside. What felt like a split second, would unsurprisingly be my worst nightmare. Channing let out a cry I have never heard before in her short life. I looked back and saw her situation and sprang to release her hand from the trap. Thankfully, her hand was easily removed but the condition of her limb would make anyone's stomach churn. (DO NOT READ ON if easily upset, sensitive information and pictures.)

Her hand looked like someone had poured melted, white candle wax and left it there to harden. There was a mushy, bright-white pile of substance atop her hand and the pungent smell of burnt flesh penetrated my nostrils. There was an obvious lack of skin elsewhere as the rotator had literally rubbed her skin away. I reached out to touch her white ooze and had to retreat my own hand as her skin was hot to the touch. I rushed her to the bathroom sink and immediately immersed her in cold tap water until her skin returned to room temperature. 

With Channing still in complete agony and only escalating in screaming, I decided to FaceTime my husband. He looked at her hand through the phone and suggested that I go to a pharmacy and ask the chemist for advice. Chemists here have a lot more pull than in the US. You can go to them and get certain prescriptions and medical advice. I had only been driving for 2 weeks up to this point so going to a chemist at the local grocery store definitely sounded easier, but my gut told me this was more serious than burn cream and a bandage. 

Up to this point, we hadn't really familiarized ourselves with the National Healthcare System (NHS). I wasn't sure what would be available to us and where to go. I knew there was an emergency facility in Oxford proper, but I wasn't sure if this qualified as an emergency. I didn't know if they had urgent care clinics and our GP (general practitioner) was part-time and by appointment only. Feeling inescapably nervous, I suddenly remembered our briefing given to us the first day we arrived and recalled a number to a hotline similar to 9-1-1 that you could call for medical advice. I looked it up and voilà! I was in! They took me through a series of questions to assess the extent of the burn and  prescribed a treatment. 

Not only did they confirm the need for Channing to be seen, but they gave me an address and name of the clinic I would be assigned to as well as a complimentary phone call to the facility alerting my pending arrival. In a desperate moment, I can certainly say the NHS provided me with exceptional availability for treatment. 

I arrived at the A&E (Accident & Emergency) with Channing in tow and was promptly seen by four providers. They talked and discussed back and forth the extent of her burn and were encouraged by her irritation with them handling her hand. They decided to clean it thoroughly and give it 24 hours to sooth and calm down before making the decision to refer her elsewhere. 

Her hand two hours after the burn occurred.

We did our follow-up visit at the A&E the following morning and the new staff was less than impressed with her care. They uploaded photos of her burn immediately to the pediatric burn unit in Aylesbury, Buckinghamshire. The attending paramedic said that Channing had most likely received a full thickness burn and would need an operation as soon as possible. She also insisted she file a report against her own staff members for unsuitable care. She declared Channing needed to be seen in a burn unit 24 hours ago. She admitted the stall wouldn't be detrimental to the outcome but requested to use Channing's case as a training opportunity, so I obliged. The medic was certain we would hear back from the specialized team by the following morning and would most likely be scheduling an appointment the following afternoon for Channing. 

24 hours after the burn. You can see her flesh is starting to turn
black as it is dying. Her hand was also starting to ooze fluid.

I no sooner got home and through the door when I got a call. The burn unit took one look at Channing's photos and wanted her there ASAP. Aaron was competing in the Christ Church Regatta and would be unavailable the rest of the day. It's in moments like these that you discover just how much strength is inside you. Strength is your choice when it's the only choice. I loaded all three kids up into the car and set out to drive them to a new destination with only 2 weeks of driving under my belt. Many prayers were uttered that night while I traveled cross-country in the dark with only my GPS to guide me. We arrived safe and sound and had a thorough assessment by two plastic surgeons. The prescribed treatment would be a full-thickness transplant to be taken either from the back of her head behind her ear, below her collar bone, or her upper forearm in the next 72-96 hours. My heart was sickened! More scars, more wounds, and more ugliness for a sweet little girl who barely just met her one year birthday. Nevertheless, surgery was inevitable and therefore on the books for the following week. 

Channing's burn was sanitized and heavily wrapped with gauze and bandage. Our biggest concern at this point was infection. Channing had nerve damage beyond her dermal skin layer and wasn't feeling much of anything in direct contact with the severe burn. Her bordering skin, however, was highly sensitive to the simple exposure of air! For her comfort sake, she had to keep the bandage intact until the surgeon herself opened it up on the day of the operation. 

Time to be real again: I had been feeling just sick to my stomach this whole time but wasn't allowing myself to feel much of anything else. I placed myself in robot mode until I was securely home with a plan in place. It wasn't until after I put all kids to bed that I reached my breaking point. Guilt is a powerful emotion and man was I soaking in it! I felt completely responsible for all that had happened and furthermore for not listening to the still, small voice that whispered in my ear to tilt the vacuum back upright when it happened. But like most people trying to complete a tedious task, I told that voice to 'sod off' and kept working. I was plagued by several "what if" questions that racked my brain and only brought about more tears. I started to question my worthiness to have the Holy Ghost as my companion if all I was going to do was tell it to shut up! The ensuing hour would prove to be a downward spiral of emotions and self-torturing thoughts. 

I got a call from my Bishop asking about sweet Channing. He advised me to read my patriarchal blessing. He felt within the contents of my blessing there would be some insight to help comfort me during this trial. Only after reading its text was I able to discover that sometimes LIFE happens; ACCIDENTS happen. We can't always protect ourselves or our loved ones from them, and that perhaps my moment with the Holy Ghost came after the fact. The Holy Ghost was the one that advised me to call the hotline that set all these other things in motion. Feeling worthy once again of my Savior's love, I decided to put the misplaced guilt aside and just show appreciation for my blessings: a pending surgery in a moment's notice by highly trained surgeons, no medical bills, and hopes for a normal functioning hand. Again, the NHS would seemingly be a Godsend. 

Day of Surgery

The next few days would include many prayers, fasting, and priesthood blessings asking for a miracle. I must have asked God for the best-case scenario 50 times a day! It wasn't until our scheduled surgery that we would start to see the answers to our prayers. The hospital called to reschedule our surgery first due to lack of beds. With free healthcare, comes lack of appointments and openings unfortunately. We would be bumped simply because there wasn't room for us in the hospital for aftercare, whether the surgeon or operating rooms were free or not. 

Next we were bumped because the senior surgeon saw Channing's picture and decided she would need to perform the procedure rather than the junior surgeon. 😀 Happy to agree, we would take the delay and see her another day. 

Third time's a charm! Channing and I headed out for Aylesbury for her skin graft transplant. We were placed in a recovery room where we would wait for our surgical slot. This is the part where the NHS gets a little tricky. Our room was shared with 6 other people and their families with as little as a small privacy slide between our sides. Our next door neighbor was coughing up what could have only been his lungs and on frequent breathing treatments to keep his "virus" at bay whilst our other neighbor was puking her guts out. This would definitely prove to be the less than glamorous side of having the NHS as our healthcare "insurance".

My faith would demonstrate once again that when you place your hope and trust in Him, He will deliver you. When the surgeon unwrapped Channing's burn and began to debride the skin with a laser-like water power jet, she saw Channing's flesh had started to recover underneath. She decided to only do a partial thickness graft which allowed her to take the graft from a less noticeable area, her bum cheek. 

This operation would prove to be the absolute best-case scenario! If Channing hadn't needed the transplant, she would have inevitably had a wicked scar about the size of a half dollar on her hand. A full-thickness graft would have meant that Channing would have had a secondary scar in a more noticeable area of her body. The partial-thickness graft was the only way to have her secondary incision less noticeable and have a less obvious scar on her hand. We would get both!

Not Out of the Woods Yet

Skin transplants are one of those procedures that have a very high efficacy rate. We were given a 90% chance of acceptance for her skin graft. She would be bandaged up for a week and would need to return to unveil whether the graft was successful or not. If not, then a second surgery would be needed immediately.

When we returned for our post-op follow-up, the reveal would prove to be a victory. Channing's graft took, leaving only a small section that didn't close up. My anticipation was heightened at this point as well because I hadn't been able to lay eyes on her new hand yet. I had only been doing wound care for her bottom. Her hand looked remarkable and the skin looked great, a little dry, but ultimately intact. 

They decided to down-size her wrap significantly this time leaving her fingers free for a wiggle. We were scheduled to return again in three days to verify that her body had recovered the remaining opening on its own, ensuring she was no longer at risk for infection. Those few additional days would allow her the necessary recovery time to do just that!

 

The surgeon was extremely pleased with Channing's rapid healing. At this time, there seems to be no restriction in her movements. The skin moves as needed for Channing to get full range of motion and she is back to her busy self. Every once in a while I catch her just poking at it. I am not sure why but would only venture to guess it's because it either has no feeling at all, or because it is recognizably different from the other skin. I keep it heavily moisturized throughout the day which helps keep the skin supple, but also tames any itching brought on by healing and retraction as the skin starts to shrink. 

As long as her skin continues to stretch as her hand grows and doesn't prohibit her movements, Channing should be ok the rest of her life. However, the possibility for a secondary surgery is always on the horizon should she encounter any restriction in movement which is always a risk with a partial skin graft in a heavily mobile area, which the hands are. 😟

Aftercare 

Burns like this take approximately 18 months to heal up. That is half the time we will be spending in England! During this time she needs heavy moisture and massage on her new skin to keep it stretching to prevent shrinkage as much as possible and to promote blood flow and scar reduction. We will be working with a scar specialist at her earliest convenience, which within the NHS will prove to be months. She will also measure her hand for a specially made compression glove to also support and protect her new layer of skin as it heals. However, garments of this nature can't be made under the NHS system because they are too expensive. We are sending her measurements off to America where the technology is available to make her support brace and then will receive it here. 

Her surgeon requested a follow-up with us after Christmas and told us we would receive official word via post of our scheduled appointment. I just received the letter and will be visiting our surgeon in late March.

My Personal Assessment

As an American that has lived on private insurance her whole life, the NHS has been an interesting experience. I can honestly see why free healthcare is so appealing to so many. Channing's surgery cost me all of £15 in parking. However, not having the option of having a private space unviolated by the repetitive sounds of human excrement would have been worth an additional charge. 

I have found that in an emergency situation, the NHS is undeniably on your side and will act fast to ensure your needs are met, no questions asked. As soon as your life is no longer hanging in the balance though, you best get in queue; it's going to be a while so get cozy on the wait list. All in all, I can say that no way is perfect, but I can certainly say that I will never take private insurance for granted and the privilege of competitive markets in healthcare.

What's Next?

Exploring Oxford and Christmas abroad...What a treat!