Jason’s Story

Site created on April 6, 2018

what can I tell you about Jason?? He was born with cystic fibrosis.. At an early age he had to deal with more suffering than most adults have to deal with.. he was in and out of the hospital his entire childhood and now all the way into his adulthood.. 

Life has not been easy for my little 5” man.. struggling his whole shildhood to be able to catch his next breathe I am sure was not easy.. not being able to do the things any other normal kid could do... having to go through a double lung transplant at the age of 13, only to become a diabetic a year or so later because of the meds he is on.. 

After his double lung transplant, things mellowed our a little for him for a while.. he got used to taking all his anti rejection meds along with all his other meds.. it’s all very delicate, bc too much or too little of one med is not good.. you have to find that sweet spot.. it took time and understanding of his small frame.. 

He graduated high school and went to college.. got his associates degree in  accounting.. has not really done anything with that degree.. his first job was at a small town grocery store when he got through with college.. then he moved up and started working at a Walmart.. 

When all the 9-11 stuff was going on, he had to go to the hospital for possible rejection.. it was very scary for him!! He works so hard to take care of himself!! 

He was unloading trucks on second shift when I walked in one day and from what he says, his life has never been the same since.. and that was in 2005.. he was 22 and I was 18.. now keep in mind that he is 5” and I and a tad taller.. coming in around 5”10ish.. everyone always said we were the cutest and most unlikely couple.. but you can’t help who you fall in LOVE with!! God knew we needed each other!! 

Fast forward a couple of years.. and we are married..
We wanted to have a baby.. and we knew going into our marriage that it was going to be difficult bc of his medical problems.. but God made a way!! 

June 11, 2011...a day that changed our lives for the better!! Our big girl came into the world.. at 9lbs 8oz.. she was not small.. she was ahead of the rest of the kids though.. getting all four front teeth at 3 months and walking at 9 months.. this girl of ours never ceases to amaze us!! 

When she was 3, jason got a really double fungal infection in his lungs.. it was a long year of home Ivs, hospital stays in another city, and medication that caused his liver to go out.. but this girl of ours, even at 3, she was there with her daddy at the hospital.. she held his hand if he needed it.. she let him hold her if that was what he needed.. AMAZING!! That’s all I can say.. God knew that we needed her and He gave her to us at just the right time!!

Now to last year.. the year we didn’t see coming!! 

2017.. a lot happened in This year.. started out ok.. then he was hospitalized the first time at the end of January.. they said it was an enflamed colon.. sent him home on antibiotics.. 4 days later he was back at the hospital with his first varices bleed.. we didn’t know that was what it was at the time.. gave him iv medicine to stop the bleed and sent him home.. 

He thought everything was back to normal and another job opportunity came around.. he loved what he was doing at the time. He is a pharmacy technician and he likes to help people.. but this other job sounded like something he might like also, so not knowing what was fixing to happen, he left Walmart on good terms and went to try this other job out.. was not even there a week and BOOM!! His second varices bleed.. 

This time they went in and handed him.. and this is when we started figuring out it was his liver.. started seeing a GI doctor and then after his 3 or 4 bleed we transferred to a Hepatologist that we LOVE!!!! 

After about 5 and a half months at the job he was trying he went back to Walmart bc it was just too hard on his body.. got back to Walmart and at Christmas 2017, he ended up back in the hospital for the 6 or 7 time I think of the year.. the difference in Thai bleed was that it was an ulcer bleed caused by the banding they do to keep the varices bleeds under control.. 

From what I understand, and don’t quote me on this, but not many people get ulcers from the banding and even fewer get bleeds from this.. and my sweet man is the rare exception.. of course!! On top of all the bleeds, his diabetes has been crazy lately.. 

About 2 weeks ago, he got up around 2 or 3 in the morning and scanned his libre (which is a blood sugar monitor that he wears to make sure his sugar doesn’t get too high or low..) and when he scanned it, it read 171.. he used the bathroom and went back to bed.. around 4:45, I woke up bc he was snoring so loudly.. budged him and told him to stop snoring.. he didn’t.. so I got up to potty and I felt him as I was getting up and he was drenched in sweat.. I scanned his libre and it said the same thing.. I said there is no way it’s that, so I actually checked it and his sugar was 41. I have him a shot of GLUCOSE  to see if I could get his sugar jolted up.. did NOT WORK.. So I yell for Layton to get up and get me a straw for the drink I’m trying to get down his throat.. he couldn’t think AT ALL!! He started having little fits, like he was trying to say something but couldn’t..  at this time I called 911.. and the EMTs got there quickly.. they stuck him 3 times trying to get an iv in him and every time they would get a vein, it blew.. HE IS NOT AN EASY STICK AT ALL!!!!! So almost two hours later I finally get him to realize what is going on and me the the nice EMT lady got 2 things of glucose gel in him and a can of dr. Pepper.. then it took almost another hour or so for him to get his mind back.. 

After we got him back, he went and got drained and then went and worked his shift at the pharmacy.. this man is incredible!! I don’t know if any other person that had just gone through what he went through and would still insist on going to work.. but he did!! He was exhausted but he made it!! 

 When he switched jobs in May and then came back to Walmart in October , he was without insurance through Walmart for maybe 6 months and when he came back they started him at scratch.. so we have to wait until January 2019 before they will allow him to be evaluated for a liver transplant.. going to be a long hard year but God’s hands are all over him.. I truly believe this!!

He is trying to live life as normally as possible for himself and for our daughter.. yes there are things that we have to decide on that most people that are 35 and 31 shouldn’t have to think about, but this is the wonderful thing I call our life!! And I wouldn’t want it any other way!! 

Newest Update

Journal entry by Brandy Jason Crawford

After being extibated Wednesday last week, he was doing a little better.. he finally got to eat a mechanically soft diet.. may not have been what he wanted to eat but he was being a champ and eating it all the same.. he wants to get his strength back!! 

Friday... was a long day.. he went for a stress test first thing in the am.. did ok with that.. after that he tried to stand for the first time in 3 weeks... his heart rate went through the roof.. pretty sure it got just as high with him trying to stand for the first time as it did when they did his stress test.. after that, we had to get a cat scan of his head bc he was really confused and eyes were kind of sluggish.. that came back ok.. he did not sleep Good Friday night.. was up and down all night.. pulled his feeding tube out twice and didn’t even realize what he had done.. we finally had to cuff him to the bed.. just to make sure he didn’t pull it out for a third time.. 

saturday... the light of day was ok.. head was a little clearer.. still very tired and restless.. our goal for Saturday was to try and sit up 4 times.. we got three down and he was done for the day.. the reason we needed him to be able to sit up especially right now was bc he was supposed to have a pulmonary function test done on Monday to see where his lungs are at.. and if they were ok and our pulmonologist felt as comfortable as he could feel with everything, then we could move to the transplant committee and see what they were going to say.. 

I actually left the hospital over night for the first time in 3 weeks to spend the night with our baby girl.. Jason’s twin stayed with him. He slept all night aside from when the nurses were doing something with him.. 

and that brings us to SUNDAY... it started out decent.. he was tired.. but we figured he would be after pushing himself Saturday.. I got back to the hospital around 7:30-7:45 and got him up around 8:30ish I think to eat his breakfast.. after that his brother left to go spend some time with his beautiful family.. and our baby girl came and saw him.. she got to hold her daddy’s hand and tell him she loved him and kiss him before It all went south.. 

he got his stomach tapped around 1 Sunday, which we wanted so that he could be more prepared for his PFT’s on Monday.. they didn’t pull all the fluid off.. they only pulled 4 liters just so they didn’t tank his blood pressure so they could keep pulling on dialysis... 

around 2 his blood pressure started to go down and his heart rate started elevating some.. they put him on some meds to help his blood pressure stay up and turned off the pull of dialysis.. that did NOT do the trick.. between 5-6 every doctor that works with Jason was in the room.. and he CODED.. 

his heart STOPPED!!! He was NOT BREATHING!!  They started compressions.. pushed an amp of eppy.. did 3 round did compressions before they got him back.. there had to have been at least 20 people in the room after he coded.. 

pulmonology- intibated him
hepatololgy and nurses- for compressions 
a surgeon- took the lead bc he was bleeding internally.. 

im sure there were more people in there, but all I could do is sit there and watch my husband. His body limp.. not breathing.. it had to be one of the loudest rooms in the hospital at that time but I couldn’t hear any of that.. I just saw him.. laying there.. and all I could think of was.. is this really happening?? People kept asking me if I wanted to leave and I kept saying no.. I’m not leaving him.. so I stood there watching these people that I have grown to trust pound on my husband’s chest to try and start his heart again.. and it may have only been a few mins but it seemed like a lifetime.. when his heart stopped, so did mine.. and it didn’t start again until they said they felt a low pulse.. 

after that, they have pumped him with at least 13-15 units of blood products in the last 6 hours.. they took him for a cat scan of his abdomen and then took him to interventional radiology to see if they could stop the bleeding.. 

what we find out is not something that gives me much comfort.. YES the bleeding has slowed.. YES they are watching him closely... NO we are NOT out of the woods.. his liver is GONE!! YES he needs a new liver.. but if we can’t get him healthy enough to get done getting tested for his evaluation.. then idk what we will do.. it’s not something I can or want to think about  right now.. 

prayer requests:

*bleeding to stop

*remove as much fluid from him as possible so his lungs don’t fill up again

*keep his blood pressure and heart rate good

*willpower for him to keep fighting

pray for our baby girl!! She doesn’t know what is going on, but just pray for her!! She needs her daddy, but at this point, I can’t make that promise to her and it’s breaking my heart!!! 
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