Phoenix Journey to WHOLENESS!

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Phoenix was a completely healthy child. No previous medical conditions, no physical problems, just completely healthy, vibrant, athletic, and thriving in every area of life. In fact, these family pictures were taken on Saturday, January 7th, 2017, the day before she went to the Hospital. {Phoenix-dark green shirt}

Short Version:
Phoenix went from the pictures you see above to utterly unrecognizable in 24 hours. After being put in the PICU, intubated, central and art lines placed along with countless other lines, tubes, machines, we were also told she was extremely critical and they were unsure if she would survive. Our entire Universe as we knew it collapsed.

The Diagnosis:
The official diagnosis came a few days after being in the PICU. It was Stevens Johnson Syndrome/Toxic Epidermal Necrolysis [which I will refer to as SJS/TENS]. SJS is a rare, serious disorder of your skin and mucous membranes. It's usually a reaction to a medication or an infection. (After extensive bloodwork, testing, and meeting with Immunology, we will most likely never know the exact source that triggered the SJS/TENS in Phoenix. She was not taking any antibiotics and her symptoms began prior to even Motrin. It was most likely infectious based.) The mucous membrane involvement was extreme in Phoenix' case. (Throat, Eyes, Ears, Nose, Mouth) She was so swollen. She looked as if she had been beaten. The swelling turned into painful blisters which then "sloughed" off (her beautiful brown skin literally slid off). She eventually lost 65% of her skin and on day #9 had to have her gorgeous hair completely shaved off. As the sloughing happens, the patient is then "open" with no protective barrier. Phoenix' eyes were also very affected and would eventually become our greatest mountain to overcome. *More about this later!*
>This picture was taken January 12th, 2017 at 9:46pm. Day 4.

>This picture was taken January 15th, 2017 at 9:43am. Day 6

>This picture was taken January 21st, 2017 at 5:27pm. Day 13

Hospital Stays:
1. 1/8/17-1/10/17- She started at Huntsville Hospital Women's and Children's Hospital ER, admitted to a regular room, then taken to the Pediatric Intensive Care [PICU].
2. 1/10/17-1/17/17- As soon as the diagnosis came she was transferred via Helicopter to Children's of Alabama in Birmingham. It is best for SJS/TENS patients to be at a Hospital with a Burn Unit.
3. 1/17/17-2/8/17- She remained critical and her SJS continued to progress. Children's felt she needed to be at a facility that specialized in these areas in order for her to receive the best care. She and I (Mom) were flown via "Critical Care Transport Jet" from Birmingham, Alabama to Shriner's Hospital for Children in Cincinnati, Ohio. She was here 22 days. The care that she received for her skin here was miraculous. They do the impossible!! They do not specialize in Ophthalmic issues. They did have a team that would come over from another Hospital, but they did not have any Cornea Specialists that would come see patients there. When we came to Shriner's her skin was WAY worse than her eyes. On Day #31 (2/8) her eyes were WAY worse than her skin. So we made the decision to go back to where our AMAZING Dr. Jack Parker (Cornea Specialist) was!!
4. 2/8/17-2/17/17- We were transferred via "Critical Care Transport Jet" back to Children's of Alabama in Birmingham. At this point her skin was only about 5% open! (verses 65% open!) Dr. Jack came to see her the day she got back and examined her the following morning under anesthesia. She remained at Children's until she was ready and released to go home. That just so happened to be on day 40.
*The number 40 in the Bible is symbolic of the end of a season of great testing and trials. We KNOW that her being released to go home on day 40 was like God was winking at us, reminding us of His promise He made to us in the scariest, most critical hours of January 9th, 2017. We believed (& it has proven to be true) that that was the end of one season and the beginning of a new and beautiful one!!*

VICTORY DAY!!! Day 40: Returning HOME! February 17, 2017.

Surgeries: [not including intubation, Central, PIC and Art lines]
Amniotic Membrane Grafts- 7
Partial Amniotic Grafts- 6
ProKera Ring- 6 *as of 8-31-17
Freeze Dried Amniotic (FD-AM) Graft- 4
Xenograft- 1 large time, over 150 staples
Days Intubated- 18
"Put to Sleep" for dressing changes- daily for 8 days, then every 3 days for approx 2 1/2 weeks, then as needed- (approx 5-7 more times)
Exam Under Anesthesia (EUA)- 28
Vaginoscopy- 1
Tarsorrhaphy L Eye- 2 times* (once to redo the original)
Mucous Membrane Graft (MMG) R Eyelid- 1
Limbal Stem Cell Transplant-(1) 9-6-17
Corneal Transplant (Right Eye)- 10-25-17
Emergency Corneal Transplant [#2] (Right Eye)- 6-4-18
Lateral Tarsorrhaphy R Eye- 2-26-18
*Re-done during DALK #2- 6-4-18
Total Surgeries/Procedures AFTER Hospital release: 36
[[different dates, multiple procedures were done at the same time/date on some ocassions.]]

*Surgeries are not up to date here currently- (as of 5/2019) Check out the update named “2018 year at a glance” for a better idea, but we passed 40in January 2019!!*

<<2018 Update>>
Phoenix has had a total of over 30 different trips to the Operating Rom to date. There are many procedures she has had done, but there are still various levels of care that are involved for each. So, sometimes as you follow her story, it may seem like a repeat surgery or repeat mountain we are facing, but this is just how the journey maps itself out!

SJS/TENS is kind of like a tornado. It comes through, does it's damage, then you are left to pick up all the pieces and fix what had been damaged or broken. As I have come across different survivors and their stories, we have all learned that it seems to affect everyone differently. In Phoenix's case the main areas affected were her skin, mucous membrane areas in her ears, nose, throat, and eyes. The area that has the most lasting damage is her eyes.

SKIN:: She did lose 65% of her skin so as the new skin grew back, it was pink! Phoenix becoming our brown girl again has been our goal!! Her skin pigment process has come SO FAR and we are just praying and believing that over time it will only get better and more even!!
ENT AREAS:: She has an EXCELLENT ENT Doctor on her team and he has walked with us through every stage of the healing process. He is happier each and every time she comes to see him with her progress. She has many tricks and things that have to be done to aid in the process, but overall, this area is very much headed in the right direction!
PULMONARY:: Because the mucous membranes were affected so severely, she has had some go down a little further into the Bronchial lobes. She has an excellent Pulmonologist on her team as well and he is also comfortable with her "baseline" with all things considered!! (Mainly the fact that she has to be put under general anesthesia so often!! That in itself can irritate so many thing in this "department!")
IMMUNOSUPPRESSION THERAPY:: As you will read below, because of her Limbal Stem Cell transplant, she has to be treated almost the same as if it were an organ transplant. The Doctor that oversees this is 100% what I would call the Quarterback of all these areas listed above! He is the one to call if she has fever, needs a new or different medicine, has a CT Scan or X-ray! He has done WAY more than what one would think it required of him. He is EXCEPTIONAL! Her I.S. is going really well. She only has to have monthly labs drawn now (it used to be WEEKLY!!) and her numbers have remained within the levels of safety! That is a HUGE blessing and answer to prayer!!

Current Treatment Plan
RIGHT EYE::

Phoenix currently has had a Mucous Membrane Graft Reconstruction done her right eye. This covered the eyelid scar tissue with a piece of tissue from the inside of her mouth. This was done to create the most ideal environment possible for the stem cells that would be coming. After this healed, we did the Limbal Stem Cell Transplant. She received donor stem cells from her Mother's eye and they were placed on her right eye. The hope was that this would regenerate her own stem cell growth, therefore causing skin to grow over her cornea.

[[The Limbal Stem Cell transplant was successfully done 9-6-17!! Please check the "Updates" section for details!!]]

Since her Limbal Stem Cell Transplant was such a big success, she was ready for a Corneal Transplant even sooner than we realized! It took place on 10.25.17. This was a HUGE "game changer" in her vison! Nothing short of MIRACULOUS!!! **SEE UPDATES**

https://www.youtube.com/watch?v=z9viccv8NgM

https://www.youtube.com/watch?v=co_i109UiBU&t=5s

She is also having to undergo Immunospression Therapy during this time and will potentially have to take some of these medications for up to one year, possibly even longer. She will have routine blood draws, checking levels and monitoring organ functions due the adverse side effects the incorrect doses could potentially have.

Since the Corneal Transplant, we have had GREAT successes and victories and we have experienced setbacks as well. The UPDATES section/tab has a lot of that info there.

JUNE 2018:: Phoenix somehow developed an infection in her right cornea. This affected the precious skin that we had worked SO HARD to get to grow back!! After days of trying to treat it with the strongest drops there are (on the hour, EVERY hour, around the clock, 5 minutes apart), Dr Holland decided he needed to see her. So we packed our bags and left Alabama on a Sunday at 7pm and drove to Cincinnati! She was in the OR that next day! After he looked at her under anesthesia, he felt it would be best to do an emergency Corneal Transplant. The [2nd] transplant was a HUGE success!! The unbearable pain was immediately gone, and her vision has been better this time around than before!! Only DAYS after this 2nd transplant, she scored the BEST TO DATE on her eye exam!!!! Hellooooo #GODREPORT!!! It was an incredibly awful experience for Phe, and all of us. What she endured was TRAGIC!! But we are SO THANKFUL that her Doctors acted so swiftly and made room to "fix" her ASAP!!! They are INCREDIBLE!!!! We are so grateful that God was watching her, covering her, the whole way!

2019 {BRIEF} Update:: She began to have major decrease in the quality of her vision and after many EUAs it was discovered that she had developed a cataract due to long term steroid eye drop use. She had the surgery to repair this on 2.25.19. This surgery has been a GAME CHANGER!!! She has done EXTRAORDINARY since then!! You HAVE TO go see some of the latest MIRACULOUS & EXCITING eye exam reports, and how she is LIVING!!!

LEFT EYE::
In May of 2017, her left eye was sewn closed for it's protection as they work on the right eye. Unfortunately they say that the left eye will require much more work than the right. Unless our MIRACLE manifests, I am not sure what the road will be...and the places we will go for the left eye. So agree with us that the left eye will MANIFEST THE MIRACLE!!! We are praying for, BELIEVING for, and EXPECTING 20/20 vision for Phoenix! NOTHING missing! NOTHING broken! COMPLETELY MADE WHOLE!!!!!

Expenses:

2019:: In an effort to not sound like a broken record, 2019 needs are exactly the same as what you will read below for 2018. Prescriptions, Doctor Co-Pays, Surgery Co-Pays, TRAVEL, TRAVEL, TRAVE, GAS, GAS, GAS!!! Special vitamins, toothpaste, mouthwash, I mean there is a LOT! But the description below provides more details! The expenses do not change with her health status either. She still has the same amount of co-pays, check ups, monthly meds & vitamins, etc., whether she is doing incredible, or experiencing difficulties. The only variation would be the frequency of visits.

2018:: We are still working to pay off a few balances from 2017's Hospital stays and surgeries. Once January 1, 2018 hit, our Out Of Pocket (OOP) reached was set back to $0. This leaves us with a guaranteed $6,000.00 to pay out of pocket before things like Doctor co-pays, X-rays, CT Scans, Surgeries, Prescriptions, etc.. are covered at 100%. This means that every Doctor appointment has a $50 co-pay [these are weekly, & sometimes more than one a week]. Every time I use the letters "EUA" that means "Exam Under Anesthesia" and that falls under out-patient surgery and we have a MUCH larger co-pay for that. She was having these once a month, then we hit a BUMP in the road!! So over the course of 11 days, she had 4 EUA's!! It's situations like these that create the most financial strain because they are unexpected. Since our May/June 2018 "bump" in the road, she had to have an emergency corneal transplant at CEI- Cincinnati Eye Institute- with her Specialist there, therefore she will now require bi-weekly EUA's and they will most likely all be at CEI. That means LOTS and LOTS of travel expenses!! GAS, hotel, food, co-pays, prescriptions, sometimes childcare for our younger 2 [they are 3 & 4 now!]. Each week in between the Cincinnati trips, we have to see the Birmingham Optho....which also means MORE GAS! Some eye drops that she has to have are compounded and therefore insurance does not cover them. They also have a VERY short shelf-life. These drops (when she has the need to be on them) can be $90-$180 a month!! JUST for those! She has reoccurring monthly prescriptions for her Immunosuppression Therapy Meds, a special "long acting bronchial inhaler," and a minimum of 2 types of eye drops. Co-pays for these are a guaranteed $160/mo (but can be higher depending if she has any additional things she has to take) She also takes quite an extensive vitamin regimen to make sure she is healing as healthy as possible! We use the highest quality, all natural vitamins, so these are pricy as well. *There are 9 different vitamins she takes I think* She also uses OTC (over the counter) artificial tears eye drops (Systane brand mostly) and she uses these ALL DAY LONG!!! So we buy the large box at a time and those are $26! (yes...even at Wal-Mart lol!) She needs certain lotions, body washes, skin products, special sunglasses that require replacement every few months... There have been times when she did need to have a chest x-ray for her Pulmonologist, or a CT, but that has only been a couple of times. [PTL! Because those also have higher co-pays!] The list is seeming endless but I think you get the gist of it all!

2017:: Fortunately, we reached our maximum OOP [out of pocket] for the 2017 year on Phoenix's insurance plan. So as far as insurance bills go, we are still just paying on the original ones that brought her to her max OOP. We are finally under $1,000 for her original 40 day Hospital stay!! We have had many specialty eye serums, amniotic eye drops, tissue typing for the Limbal SCT ($1600), special vitamins that are necessary daily that cannot even be filed to insurance. The OTC eye drops are also very pricey since she needs them so often, sometimes every 20 minutes. Special dietary needs, clothing, special sunglasses for light sensitivity, special hats, specific sunscreens, etc... the list goes on. TRAVEL!! a HUGE expense! We have to regularly travel to Cincinnati, Ohio from North Alabama. Sometimes it is bi-weekly. We also have had a few 4-5 day long stays in a hotel. We have to travel to Birmingham and back weekly which is a little over an hour away. We have gas expenses, food, we stay at hotels, childcare/preschool/living expenses for her 2 younger siblings- ages 2 and 3. Her older sister attends college in Florida and we try to fly her home as often as we can but that expense is also great. We have recently accumulated quite a large sum total for my (Nicole, her Mom) portion of the Stem Cell Transplant. I assumed the donor wouldn't be billed or charged! (Guess I should've asked!!) I donated stem cells from my eye and had the outpatient surgery co-pay of $200.00, my portion of the anesthesia fees in the amount of $408.98, and the actual surgical fees above what the insurance covered in the amount of $760.00. This is a huge and very unexpected new debt! The expenses are endless BUT GOD and His people have been SO GENEROUS and provision has been there time after time. We do have concerns for that day the calendar turns to 2018 and all our OOP expenses reset. We will have a guaranteed $6,000.00 to pay OOP as soon as the new year begins. Our hope and prayer was to have all of 2017's bills/balances PAID IN FULL prior to the start of 2018! On top of the Insurance fees we will have to pay for every visit, every surgery, every EUA, every prescription, we will still have the gas, hotel, travel, food, etc expenses simultaneously. We are going back and forth to Cincinnati almost bi-weekly right now and on the weeks we do not go to Cincinnati, we have to travel to Birmingham for Optho visits. We have a long road ahead for the left eye and I cannot imagine what the cost will be. We came to this "GOAL" by using our budget and cost estimator from what we have walked through in 2017 already and all the expenses we still face daily along with current remaining balances. We are so thankful to each and every one of you that invest in her wholeness. Every penny spent is prayed over and much care and thought is put into each decison. We value and honor your sacrifice and pray that every gift given is returned back 100 fold in your own lives!

Phoenix Currently:
*there are SO MANY new updates on her!! You must go check out the UPDATES tab!! Scroll through them all if you have the time!!*
Phoenix THRIVES!!! She had done homebound schooling and caught up with all her work and completed 3rd grade!. She was able to start 4th grade on the first day of school!! *See "Updates" section for news article and post about her first day on 8-9-17!* She actually finished 4th grade with ALL A's ALL YEAR even with everything she went through and all the days she was stuck at home, traveling, etc! It's AMAZING what she has done with the help of an INCREDIBLE team of Teachers, Vison Specialists, Special Service Staff, Principal... I mean they are HEAVEN SENT!!!! She drums, she has taught herself how to play the guitar, she paints, she jokes, she entertains, she has never-ending questions about LIFE and doesn't miss a beat!! I urge you to go scroll through her Facebook page to learn more about our BRAVE GIRL, WARRIOR PRINCESS!!! She is resilient! I am humbled and in awe of her. I am HONORED to have a front row seat on her journey to wholeness!!
www.facebook.com/prayforphe

>This picture was taken Sunday, July 9th, 2017. Phoenix preached for the first time with her G.Daddy (Senior Pastor) at Calvary Assembly in Decatur, Al. This day was ANOTHER #VICTORYDAY!! (Full video of her message on her FB page!!) #PhoenixStrong #prayforPhoenix

....It's not over! We truly believe her BEST days are still ahead!! THANK YOU for taking the time to read about her story. More than anything we ask that you join us as we circle her in prayer...UNTIL, however long that may be, she is completely WHOLE!

FIRST DAY OF FOURTH GRADE!!! 8-9-2017
{{Full story under "Updates" section!!}}

10-18-17 After she finished her 3rd Pentamidine Treatment (part of her Immunosuppression Therapy!)

Phoenix wins STUDENT OF THE MONTH!! 12/17
Phoenix won Student of the Month for the category of COMMITTMENT in December 2017!! What an HONOR!! Here are some pictures from the special day! The video of the AMAZING speech her teacher wrote, read by her Principal, is on her FB page! It's a MUST SEE! [FB Page link is www.facebook.com/prayforphe ]