Thursday, April 19, 2018

What a year it's been, so far.

Hi Friends, So sorry for the lack of updates. McKenzie's health has taken over lately, but we're happy to report she's on the mend and things are looking up for the first "real" time in her GI history.

Earlier last month, McKenzie's health continued failing as we began weekly visits to GI and the emergency department, again. After the inability to get anywhere, we made the decision to seek a second opinion - Thank God! (Don't get me wrong, we love A.P.H but something wasn't right - we needed someone to do something.. more!)

I took McKenzie to N.C.H 30 minutes from A.P.H and she was admitted - admitted with low blood sugar, high liver enzymes, severe protein calorie malnourishment (could have caused or already began the process of organ failure) blood in her feeding tube and severe dehydration. McKenzie had the longest week while doctors ran tests, exams and ultimately were able to help renourish, rehydrate and figure out the cause for the on-going symptoms and a plan moving forward.

McKenzie began feeling better, almost immediately! Since then, she has had many firsts. She has sat unassisted, drank from her sippy cup, wants to crawl, wants to play - she no longer seems to be in the haze she seemed stuck in for so long. While we are on the road to recovery, she still has a long road of GI obstacles to face as her pancreas, liver, stomach and intestines require work.

This last admission took its tole on us, as her parents, thus my reasoning for being so absent, but I hope to soon update more frequently as we settle back into a solid routine.

                                           By the way - McKenzie is getting glasses!!

Friday, February 9, 2018

31 Days

In the last six months, multiple people have advised us that keeping McKenzie in a bubble isn't "good for her", "won't help her build an immune system" or they have voiced how unfair, unfortunate or inconvenient her health restrictions are.
So, I invite you to learn the reasons for McKenzie's "bubble".
McKenzie has Trisomy 21 ( down syndrome) and CHD ( congenital heart disease).
  • Children with Down Syndrome have abnormalities in their immune systems, as well as low muscle tone. The abnormalities in the immune system increase the risk of developing autoimmune disorders, pneumonia, other respiratory infections and gastrointestinal infections.
  • Children with CHD have weaker immune systems than the average child. They can end up in the hospital for illnesses that others recover from on their own.

McKenzie didn't have the flu, or even a cold - McKenzie didn't get sick because she's in a bubble or restricted.

On December 6th, McKenzie went under anesthesia for a minor feeding tube operation. Anesthesia weakens the immune system and suppresses automatic functions such as movements of the digestive system. The weeks that followed this procedure, McKenzie caught a "bad germ", this caused her small intestine to stop functioning properly and the bacterial then began to grow. The result of this infection..

31 days.
  • 7 calls to on-call specialists
  • 6 doctor visits (1.5 hour drive each way)
  • 1 echo-cardiogram to clear her with the cardiologist
  • a month of zero weight gain
  • 1 e.r visit
  • 5 days in the hospital
  • 1 day of IV fluids
  • 8 medications - 3 antibiotics.
  • 4 blood draws
  • 2 radiology ultrasounds/exams.
  • 2 x-rays
  • 3 weeks of irritability and discomfort
  • 1 week of being completely lethargic.
  • Daily sanitation
  • Multiple loads of laundry
  • Endless nights of research
Ultimately, McKenzie's formula was changed to an amino acid-based, hypoallergenic formula that she could tolerate. She now has a second bag to feed with that allows "venting" air from her stomach during her feeds and multiple follow-up appointments.
McKenzie is our world and her bubble is to protect her. We base every decision we make on what we feel is best for her. When you become a parent, you'd do anything to keep your baby / child safe. When you become a parent of a baby / child with special needs, you face the ultimate fight. The fight for understanding and patience. The fight for services and knowledge. The fight for comfort and stability. You face the fight within yourself, to ensure you've left no stone unturned, to ensure you've done anything and everything in your power to give your baby a quick recovery and prevent them from becoming ill.

Thursday, January 4, 2018

Oh, Little one!

The alarm sounded at 6 AM, not my alarm but McKenzie's feeding machine. I almost couldn't believe it was morning, we were up most of the night with McKenzie (for the first time ever), she was so uncomfortable. It was 29 degrees with ice on my windshield while I attempted to warm up the car so we could head to see GI in Orlando (over 1,5 hours away). So, we bundled up and headed out.

GI confirmed McKenzie is indeed teething, how exciting! They also confirmed she is sick, how discouraging! McKenzie has an intestinal infection, a mouth infection and possible new food allergies. So, she has a bunch of medication and we did a stool study in hopes of finding out more. Its looking like she will be kept home and away from others as much as possible during cold and flu season - we want her to build an immune system, but not while her heart is still trying to heal. I know the summer should bring lots of fun, lots of development and hopefully no illnesses!

While I dislike seeing McKenzie sick, I am thankful she's home. It seems like it wasn't long ago when every time she got sick, she got admitted to Arnold Palmer. We never really know what to expect, we never really know when its "safe" to put away out emergency hospital bags. I think the hardest part of it all is knowing at any moment, things can change. This week she's home, but what about next? I am thankful her heart surgery is done as it's allowed less admissions - but the fear of her being admitted never really goes away as she's still a heart patient, still has an obstruction to her kidneys and still deals with dehydration. 

Becoming parents was life-changing in many ways, but becoming parents of a child with medical and special needs has changed who we are as individuals, how we think, how we live. I wouldn't change our lives with McKenzie for the world - but there are some days I wish she would catch a break for her own sake! Oh, little one - get well, you've got growing to do!

Wednesday, January 3, 2018

The New Year

As we entered 2018, we were quickly reminded of McKenzie's health. The last few days have been full of uncertainty as she has had several fits of discomfort and recently stopped tolerating her feeds.

Of course we'd like to imagine McKenzie is teething and these are normal symptoms of such; however, with a baby that has a history of medical concerns and a dire need to continue gaining weight we are returning to Orlando earlier than expected for GI to check her out.

At times, having a medically needy child can be hard. It's not hard because of their needs, or because of the attention it requires but because of those who surround us. Time and time again we find ourselves explaining why we keep her isolated during cold and flu season, why she's not just a baby fussing, why we can't just "give her a bottle", and why we do things the way we do. Sometimes, it's hard for others to truly understand her underlying medical concerns that often cause us to isolate her, often her fussing results in a diagnosis of some sort and her inability to just "take a bottle" as she's been tube fed almost her entire life. As McKenzie's parents, we are also teachers, doctors, therapists and so much more.

As the first week of 2018 is half way through, we are reminded to always be on our toes when it comes to McKenzie's medical conditions. McKenzie is just a baby, but she's a baby with a lot of medical needs that should always be ruled out before assuming she's just being "a baby". As we move forward, we remind ourselves that we know what's best, we know to trust the gut-feeling. We also remind ourselves that others love us, love McKenzie and only want to ease our uncertainty the best way they know how and we are thankful. We are blessed, but ultimately we will always know what we need to do to keep her well.

As of today, I know McKenzie needs medical intervention - this can be enough to find a cure to her new discomfort or a cure to our new concerns. We hope 2018 will bring growth, stability and comfort for McKenzie and others on similar journeys, we also hope 2018 will bring peace, comfort and love to those surrounding us.

                                               Happy New Year to you all!

Tuesday, December 26, 2017

Merry Christmas!

Christmas has always been my favorite holiday. I remember last Christmas when I imagined how amazing this year would be with our new baby. McKenzie's first Christmas was also the first Holiday she was well enough to visit with Family. We were blessed to have spent Christmas eve with great-grandparents, grandparents and uncles, Christmas morning was spent with us and McKenzie opening gifts from Santa and Christmas evening was spent with Grandparents, Uncles and their significant others. 

McKenzie got lots of new toys and clothes! She was in a great mood - even though her gums have been driving her crazy! While I always imagined what life with McKenzie would be, I never imagined so much love 

2017 has been a tough year, but we are so much stronger because of it. The beginning of 2018 will be busy with appointments, but we are hopeful they all go well and McKenzie can continue thriving, developing and being a baby!

What a year it's been, so far.