Friday, September 23, 2016

An excerpt from a paper I'm writing......

Ok, Oh my... so it has been a few years since I posted anything here.  I'm not sure if anyone still "follows" it.  Life and all its craziness has gotten in the way.   No excuse.   Anyway, I felt compelled to post this here tonight.  I'm not sure why.  Its nothing revolutionary....  I know a lot of my fellow SMA Dads have felt this same way, probably even written these same words, but I felt like I needed to post them here tonight. 


I'm thinking and praying for one of my fellow dads, Travis who is in the hospital right now fighting for his beautiful daughter, Stella's life.  Be strong Travis, she is strong, she will be ok.  We are all praying with you. The Father will watch over her and bring her back to health.


So, this is only an excerpt, maybe one day I'll share the whole story.... and I'll apologize up front for any spelling errors, structure and grammatical errors, and my blatant misuse of the Oxford Comma.


Enjoy!
-r
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In the final year of my Troop Command I had a child, and I came to realize adversity like I never imagined I would.  Shortly after my daughter’s birth, my wife, Kate and I learned that she had a terminal genetic disease called Spinal Muscular Atrophy, Type 1, and that she would never sit up, crawl, walk, or run on her own.  When the doctors told us this, and told us she would not live past her 2nd birthday, my wife and I became LASER focused on proving them wrong. We did.  We developed a new hedgehog concept and became the absolute best in the World at providing our daughter an amazing life.  We recruited “the right team” of nurses, doctors, therapists, and other “expert” families to get Mary successfully past the two-year milestone.  It did not come without hardship, for 9 years I have woken every two hours at night to turn and suction her throat to keep her lungs clear of fluid.  I have given her CPR on the pavement of a busy outdoor mall when she stopped breathing.  I’ve carried her up mountains.  We have spent months in the hospital fighting to clear her lungs after an illness.  However, we have proven them all wrong. We HAVE given Mary an amazing life.  Mary is an independent, sassy, smart, and amazing 4th grader who wows everyone with her intelligence, whit, strength, charm, and kindness.  She has rock climbed, flown in helicopters, zip-lined, played soccer, and LIVED, all because her parents NEVER GAVE UP.
Mary taught me that you can accomplish ANYTHING if you put your mind to it.  Mary helps me set amazing goals.  “Dad, I want to shoot a bow and arrow….by myself”, “Dad, I want to be able to swing in my backyard….by myself”, “Dad, I want to open my windows..., turn on my lights…, play with my Barbies….by myself”.  My answer is always the same…. “OK Mary I will figure it out”.   “Dad, one more request, I want to walk….by myself”.  That is why........


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to be continued......

Thursday, April 10, 2014

Spring Break Trip to Lakeshore!

Since before we moved to Alabama last summer, Mary has been telling us she wants to play wheel-chair soccer....  Well, we've been here for about 8 months and Mary finally got her wish!  Mary had the opportunity to learn some power chair soccer skills and techniques with a coach at the Paralympic training center at the Lakeshore Foundation in Birmingham.
We went to a spring break camp there, and some of the pictures are below:














Sunday, May 6, 2012

Mary's Homecoming! (Cinco de Mayo)

I just had to post this video of Mary's coming home from the hospital, apologize in advance for the length (4 minutes)...  Last time we came home, Jackson was SO excited, he jumped up & down for about 10 minutes, he didn't bounce quite as much this time, but it is still a pretty cute reaction!!


Thursday, April 19, 2012

Mom of the Year!!

I have the most amazing wife ever! At about 10:00 last night, I called her from my training in Alabama, she had just finished Mary's nighttime treatment and put her down to bed. As soon as she picked up the phone, she said "I have to go, Jackson just started throwing up!" He continued to vomit every 30-45 minutes throughout the night. So needless to say, she spent the night changing sheets, changing PJ's and cleaning up puke, and didn't get any sleep.  I'm sure at 6:30 a.m., when Jackson finally fell asleep, she was temped to just let Mary sleep in, so that she could get some sleep herself.  But it was time to get Mary up for school, and Mary couldn't miss, because she absolutely wanted to see the puppet show with the rest of her class!

So, at around 8:45 I got this picture of Mary enjoying the puppet show with her class! Amazing!
But, the fun didn't stop there!  Of course when Mary got home from school, instead of  lunch and naps, Mary and Jackson wanted to make their own "puppet theaters"!

So of course, Kate went to work making these awesome puppet theaters for Mary and Jackson!
Jackson's Finger Puppet Theater!
Here Mary is putting on a puppet show for Jackson (and Sam)!
Mary the puppeteer!


Here's a picture of my wonderful, beautiful wife, Kate!  She takes amazing care of our children (which is no small task) and manages everything at home... flawlessly playing the roll of mom, doctor, nurse, chef, maid, supply clerk, office manager, washing machine repairman, and the list goes on & on!  She never thinks of herself, and rarely gets a break.  This is why I'm declaring Kate the Mom of the Year!!

Monday, February 13, 2012

RSV Again = 3 More Weeks In PICU

Mary has been in the UMDNJ Hospital for the past 2 weeks with another bout of RSV and a few other viruses (Enterovirus, Rhinovirus, and a few others), she is also battling Clostridium difficile or "C-diff".

She was intubated on January 31st, and extubated on February 8th, and then re-intubated on the 10th.
Needless to say, Mary has had a pretty rough few weeks.

Today, the news crew descended upon the hospital when Whitney Houston donated money back in the height of her stardom, and Kate was asked to do an interview with them to talk about the amazing care we receive in the PICU here.

Here is the video:


Please continue to pray for Mary's speedy recovery.

Thursday, December 8, 2011

Everyday Miracles

Have you ever witnessed a miracle happen right before your eyes?

This past week, Mary has been in University Hospital, in Newark, NJ, battling RSV.  Things took a down turn last Thursday when Mary's lungs filled up with fluid, but Kate and I, not knowing she had RSV thought we could manage it from home, as we often do when Mary has a cold.  By 10:00pm on Friday, after near constant treatments for over 24 hours, Kate and I decided we could no longer manage it from home and it was time to go to the hospital.  Soon after getting here, and receiving the positive RSV test results, Mary's mucous started to increase even more and get very sticky and THICK!  Thank goodness for the amazing RT's here at UMDNJ, who are so skilled at deep suctioning and using the cough machine.  Mary kind of started to improve, or at least stabilize, so it seemed.  Then, by Tuesday evening, Mary lungs were SO full of THICK, STICKY mucous, we just couldn't maintain her O2 sats above 90, even while on 5 liters of supplemental O2.  I was certain we would have to intubate to get her over the illness.  Then, 7:00 am shift change rolled around, and in walks Heron, a 6'2", barrel chested, Respiratory Therapist from China.  A bit of relief came over me, as Heron has helped Mary several times in the past.  Heron, who happens to be an orthopedic surgeon in his home country, walked in the room, took one look at the sats (90% on 5 liters O2) and said with his Chinese accent, "Ryan, take her mask off and bag her, I do my best suction now, clear out lung..." So, I took the mask off....alarms started to sound...bipap-beep, beep, beep, Pulse Ox-Ding! Ding! Ding!, and Heron began to suction..... her numbers continued to drop...O2 80%, HR 118, and her lips went from pink to grey to pale-white as the numbers continued down, O2 70%, HR 90, finally, I insisted that I cough Mary, because I didn't want to see her heart rate drop any lower.  So I coughed Mary with the catheter still in her nose, and thick mucous came bubbling out of her mouth as her eyes came back to life and color started to come back to her face.  During this whole process, instead of being worried, I had a eerie since of comfort and the utmost faith in Heron and what he was doing.  Soon, as I saw the thick yellow and GREEN mucous start to slowly flow from Mary's lungs into the suction catheter, I felt as if I was watching a MIRACLE take place, right before my eyes.  The mucous flowed and flowed, slowly and steadily filling the entire suction tubing as Mary's numbers steadily rose up into the high 90's.  I absolutely knew that had Heron not cleared her lungs at that moment, we would have to intubate.  Heron returned every 2 hours that day to do the same procedure, each time clearing the mucous that had accumulated in her lungs.  And after each treatment, Mary would be completely wiped out; exhausted, but we all (including Mary) knew, this is what it would take to get us through the next few days and avoid "the tube" as Mary would put it.  That evening and the following day was more of the same, and again we were thankful to have Heron on duty.

Finally, last night Mary (and mom and dad) got a good night's rest and slept 5 hours straight without having to do a treatment. 

To the SMA families in the northeast who are hesitant to come to UMDNJ (Yes, the hospital where Dr. Bach practices) because it is in Newark, or you've heard horror stories (we did), or whatever.  I urge you to keep an open mind.  We've found the care here to be amazing.  In our opinion, nobody knows how to treat SMA (especially Type 1) patients better than this hospital.  Sure, it is in a bad part of town, and there aren't "comfy beds" or flat screen TVs on the wall, but the CARE here is FIRST RATE, and isn't that what you come to a hospital for anyway?? 

Lastly, please say a prayer for all of the sick SMA kiddos out there.  There are way too many not feeling well right now.  Also, say a prayer for the SMA Queen herself, MJ and she prepares for surgery tomorrow.

Saturday, December 3, 2011

Mary Back in the Hospital

Hello! Wanted to get a quick update to everyone who reads Mary's Blog regularly.... unfortunately, Mary is back in the hospital again, after a visit in October with Influenza B (yes, we all had flu shots over 5 weeks before that).  This time, she has RSV(Respiratory syncytial virus)!!!
Mary had been battling what we thought was a little cold since last Tuesday, and we were managing it well from home, then on Thursday, she appeared to be over it, wanting to spend the entire afternoon off her biPap, no fever, normal O2 sats and HR.  Then, Thursday night, we awoke to alarms going off, Mary was de-satting, and was filled up with "junk" again in her lungs.  We continued to battle from home, but we quickly realized that this had to potential to exceed our "at home" threshold.  After talking with several of Mary's doctors throughout the day on Friday we made the decision to keep Mary at home for at least another night.  Well, shortly after we finished a thorough treatment, we put Mary in bed for the night.  I decided to stay in Mary's room and study, so that I could watch her numbers and suction her as needed.  No more than 15 minutes after going to bed, she started to desat into the low 90's and essentially nothing we did would bring her numbers up, so we decided to take her to the local ER.  Shortly* thereafter we were on the helicopter, once again, enroute to Newark.

Needless to say, Mary had a very rough night, she was exhausted, dehydrated, and generally feeling bad, she remained on supplemental O2 throughout the night.  At a few points we were fearful of yet another intubation.  But thankfully we were able to clear her lungs and avoid that (knock on wood). 
Mary had a much better day today, but as many know with RSV and SMA, we are not out of the woods yet.

Please continue to pray for Mary, and for Kate and I, and Mary's wonderful doctors, nurses, and therapists, to have the strength and direction to fight this illness.

Also, a special thanks goes to our nanny, Shelby for getting all of Mary's equipment packed up while we were at the ER and helping out with Jackson until my mom, Julie could fly in tonight to help out.

Saturday, November 12, 2011

Hiking Black Rock Forrest Waterfall

We took advantage of the beautiful fall weather and hiked to a pretty neat waterfall near our house.  The kids had a blast! Here are some pictures of the adventure:
 Kate and Jackson at the Trailhead.
 Mary and Jackson ready to hike!
 Taking a break!
 Mary taking pictures of us!
 The first glimpse of the waterfall!!


 Mary and Daddy!
 Jackson joins in!!
 The whole family!





 That water looks cold!!

 Mommy carrying Mary.


 Mommy holding Mary, they had a great time!!

Tuesday, October 25, 2011

A better day.....

Mary is feeling much better today, we were able to wean her down to room air (21% O2) yesterday and she stayed on it through the night.  The plan is to extubate (pull the breathing tube out) tomorrow (Wednesday).  Mary is in good spirits and was happy to have a few visitors today, her nanny, Shelby and one of her nurses, Lisa.  She was also able to Skype with her brother, Jackson last night, and with her aunt, Angie (in Ukraine) and he uncle, Bill, (in Texas) today.  She doesn't care to Skype right now, because she can't talk with the tube in her mouth, but she was happy to see the familiar faces.

Please pray that the extubation goes well and we can get home before Halloween!

Sunday, October 23, 2011

FLU + SMA = NOT a good combination

Hello all!  So Mary and Jackson had been sailing along this fall, both growing like weeds, and going (back) to pre-school.  Kate and I were feeling very fortunate because both of the kids have been very healthy until this week.  Mary and Jackson even had a minor cold or two that we were able to manage well from home for Mary (this is a good thing).  So we were very surprised on Wednesday when Mary started having more secretions, because nobody in the house had been sick and we've really been limiting our exposure to sick people.  We had even decided to pull Mary out of school and begin home-school at beginning of last week, because so many kids in her class had been sick.

So by Wednesday night/Thursday morning, Mary woke us up, crying, needing suction and desaurating. At first, we didn't think it was too big of a deal, given her past 2 colds were pretty light.  We immediately stated increasing her BiPap pressures, and treatments to keep her lungs clear.  On Thursday, we decided to take Mary to the local Army hospital to get a chest x-ray and see what was going on in there.  On the way to get the x-ray, Mary desaturated in the van, we raced to the hospital and were able to get the x-ray, but then headed immediately to the ER.  They were great, aleady knew we were on our way.  We were able to stabilize Mary, but we releaized that we might be dealing with more than just a light cold.  The ER staff decided to transport Mary via helicopter to UMDNJ in Newark.  She was probably stable enough to transport via ground Ambulance, but given it was approaching rush hour out of NYC on a Thursday, it would have turned an 1 hour ambulance ride into several hours.

When we got to the hospital, we found out Mary has Influenza A.  We continued to do aggressive airway clearance, but we just weren't getting that much out of her lungs.  However, we could tell that there was still mucus in her airway, because we could hear it, and her O2 SATS weren't that great, even after treatment.  Mary's mucus (from the flu) is very think and sticky and we've had a very hard time getting it completely out of her lungs and upper respiratory tract.  This sticky mucus caused her to desaturate last night, even while bleeding 100% O2 into her ventillator, we tried to clear her all night long, but finally this morning we had to make the decision to intubate her, to give her body, lungs, and nostrils a break from hours of continuous coughing and suctioning.

The intubation went fine, but she has still be having some trouble with low O2 saturations, so she had been on 60-80% O2 all day. But she is resting comfortably now, and thankfully there is no pneumonia in her lungs.

Please keep up the prayers for Mary!

Tuesday, September 13, 2011

Mary Returns to School!!!

So Mary started back to pre-school for the 3rd year in a row!! Yes, she is absolutely ready for Kindergarten, but since she isn't 5, she gets another year of pre-K. I think Mary could probably teach the class!! This picture is actually of Jackson's first day of preschool, but it was so cute, I couldn't resist posting it!!
A picture of Mary with her class out of the Nature Observation Deck!
Mary and her friend Aoife!
Mary doing some fishing for letters during OT out on the playground...
Mary is the new JennSwing with Aoife pushing her!
Mary riding on the school bus at the new playground, she loves it!
Driving the bus!!

One very happy girl!!!!

Sunday, August 28, 2011

Mary Turns 4 and 1/2!!!

Mary turned a big four and a half on the 28th!!!  Mary said she wanted a dragonfly cake and she wanted to help make it, so here are some pictures of her and Jackson helping decorate the cake.
Notice the flashlight in the picture as we were preparing for "Hurricane Irene" which really just turned out to be a tropical storm.
The finished product:
Big SMILES!!!
Jackson wants to help blow out the candle...
I love this picture of Mary getting ready to take a bite of cake!!
Finally a picture of the whole family!!