Sunday, March 30, 2014

Simple Tonsillectomy….

Katy made a heart transplant look like a cake walk, however a simple Tonsillectomy caused my girl to need a crash cart.  I know I should always be prepared for Katy to react in true Katy fashion.  But, I have to say I did not expect what unfolded in the PACU on Friday afternoon.

Katy was scheduled for a tonsillectomy due to her enlarged tonsils that resulted from her viral infection back in February that caused her to go septic. Transplant patients are at risk for EBV =The Epstein Barr Virus better known as Mono.  This is one of the most common viruses that most of the population has.  However due to Katy’s compromised immune system due to her anti reaction medications she is unable to fight this virus and left untreated can lead to PTLD which is also known as Transplant Cancer and usually is fatal. 

Of all the complications that one can have post transplant (and Katy has had most of them) you never want to hear PTLD Lymphoma.  We heard those words and I nearly died… I could NOT believe that we were facing that diagnosis… and we weren’t YET.  But the EBV virus lives in her tonsils and they needed to be removed ASAP and would be sent for biopsy.

I hope that clarifies that this was not just a routine elective surgery… this was completely necessary and needed to be done ASAP. 

The morning of the surgery the surgeon decided that it made sense to add an adenoidectomy… due to Katy’s snoring etc.

The surgery took less than 45 mins and we were back with Katy who was feisty and demanding apple juice. She was given Tylenol and morphine for pain.  The morphine made her sleepy and her sats were dipping so she was put on blow by to keep her sats up.  After about an hour Katy became bright red and extremely sweaty…no fever.  Sats were now dipping while on blow by. Our nurses demeanor changed and I knew something was up.

The attending from anesthesia was called and could not get Katy to respond…he immediately called a Code Blue Respiratory  arrest on our baby girl and everything became a blur as they were bagging my girl and yelling out meds Nitric Oxide and I am not sure what else… all in an effort to wake Katy up.  I am sorry to say… but I lost my shit and was rocking in a corner of the PACU praying…begging and pleading with God not to take my baby. I really thought that Katy was gone… I didn’t and I don’t know how this tiny little 35lb baby can keep bouncing back… how she can keep fighting. But she did and I heard her scream from across the room.  Once again our prayers were answered. 

WHAT happened and WHY? Well it seems that it was most likely the perfect storm.   The combination of the dose of Morphine with the residual meds used in Anesthesia during surgery and Katy’s uvula was HUGE from swelling which was blocking her airway.  Katy was retaining Co2 her blood gasses showed her Co2 was 160 and it should be in the 40’s.

Katy was given meds to help with the swelling in her throat and was put on Bipap… and we prayed that would work and she would not need to be intubated.

We were then admitted to the CICU and Katy woke up again and wanted the mask off… we took it off her sats were holding well on blowby…until she fell asleep and then she had a few episodes when she would dip into the low 70’s… her airway was blocked again and she was not moving air. She was put back on Bipap until early Sat morning 5AM when she was wide awake and held her own all day even while napping after being given a dose of oxycodone. She woke up and was eating (chicken Fingers… cheese its) and drinking.  We said we were ready to leave and the team agreed.

Friday Code Blue… Saturday home! That is how Katy rolls.


Wednesday, March 12, 2014

Lots of Catch Up

I have been spending most of my free time crafting.  My goal is to be up to date when the new baby comes.  Since I have yet to scrapbook Patrick’s first year… it’s safe to say I have a lot to do. 


Party of Five


An unexpected blessing is due to arrive just in time for Halloween.  I never would have imagined that I would be pregnant again.  We are all very excited, and anxious to see what this precious babe will be.  Our little tie breaker.

Right now I am 9 weeks pregnant and although it’s a bit early to share… I have had an ultrasound and by baby #3 your body makes it difficult to hide a pregnancy. 

Other than being ridiculously tired… I don’t remember being this tired with either Kate or Patrick and my fair share of all day sickness I am feeling good.

Wednesday, February 26, 2014

Through Thick and Thin

Mike and I do almost everything together.  We are that obnoxious couple that really enjoy being together.  How else would this whole work from home schedule work.  We really struggle when we are apart.  Is it healthy? eh, I don’t know but it works for us.  I still like to go out with the girls… and Mike who is a bit more of a homebody likes to veg out or have the guys over for a game of poker.

We are most successful when we are working together.  No matter what we are doing… cleaning the house. You know that deep clean CRAP we have a huge party tomorrow and it looks like we are 1 month away from the Hoarders crew showing up on our door step.  We are great advocates for Katy… hello Milrinone at home for 6 months.  Mike keeps me from making Patrick a complete mamas boy and I ensure that we avoid bloody noses in an effort to man him up.

You know what else Mike and I like to do together… eat! Mike is a great cook and I love to stock the house with yummy snacks and our favorite ice creams. And we share that unconditional love for one another so when the pounds start creeping on neither one says anything to the other… until one of us, usually me says HOLY CRAP I am not buying another size up pants WE NEED TO start Weight Watchers again… and use that gym membership that is pulled from our account each month.

So that we do… and we have a healthy competition… until I get pissed that he is loosing way more, way quicker than me and I sit down with a pint of Ben & Jerry’s and Mike brings the spoons. The circle goes on and on and the weight we lost comes back and brings 5lbs with it.

Finally I get so disgusted with myself I tell Mike I think we should go and listen to what they have to say at the Weight Loss Surgical Information Night… that I am ready.  I need to do this.  I can’t live in this skin any longer. 

Mike comes with me as a supportive husband and cheerleader… thinks the program sounds great and is considering it himself.

Finally the time is right… Katy had a heart transplant and I felt I could take the time needed for me to have this surgery.  I had the Gastric Sleeve on May 2nd 2013. This is the first time I have publically shared.  I have told most everyone in real life and I will tell anyone that point blank asked. 

The reason I chose not to share this piece of my otherwise open book life is simple.  Every one has an opinion or an experience and I really didn’t want to hear it.  Trust me I heard enough of it in “real” life.  This was not a decision I made or we made lightly… this is not the easy way out and anyone who thinks that, is foolish.  This is a tool. A tool that I felt as a 32 year old mom with two young children and high blood pressure and knees that felt like those of a 62 year old was a tool I needed. This was not done in vein ( I have carried to babies… there will be no bikinis in my future… again I am 32 years old… your welcome! My opinion is I don’t care how good you look if you are over 30 time to retire your bikini. But, I digress….

The thing is everyone knows someone who knows someone that had weight loss surgery (no, they don’t know which one they had) but it was horrible she was sick all the time and then she gained it all back plus 50 lbs.  Well, I am sorry that happened… but if you don’t use this as a tool and you eat a 1/2 of a cheesecake and god knows what else at Christmas yeah I can imagine you aren’t going to be very successful. To me this kind of talk is like telling someone recently diagnosed with cancer to not bother with chemo because it didn’t work for their cousin twice removed.  I mean that totally sucks that chemo wasn’t successful for your loved one but it is very effective for so many others.  The bottom line is I don’t remember asking for your opinion so your mother was right… if you don’t have anything nice to say…SHUT IT!

So obviously… my surgery was a success I am still here running my mouth.  I have lost a total of 78 lbs. I have gone from a size 18 to a size 8.  I feel so much better… I am off of my blood pressure medicine… my knees no longer ache… I have energy.  I am comfortable in my own body.

Mike had 8 months to see my transformation and my struggles its not all roses and size 8 jeans! He decided it was still for him.  He wanted to go through with it… for him he sees it as a life and death answer and with the many medical issues he was facing his decision to do this probably added another 15 years to his life! Mike had the Gastric Sleeve yesterday and is doing fantastic… I see where Katy gets her ROCK STAR patient status from.  Today when we went to visit… I told him I was so proud of him and I am glad he is doing so well and he said he had to do it and looked down at Katy and said I have little ones I need to be around for. 

I am excited for Mike’s recovery and for us to start exercising together and finding our new way on this new journey to a healthy & happy life.

Sorry for being so cryptic and for anyone who was worried about Mike.  All is well.

Tuesday, February 25, 2014

1st Annual Biopsy

With our 1 year celebration came the BIG 1 year biopsy.  Katy has had many caths, MRIs and biopsies of her heart post transplant, actually more than we had originally planned on due unfortunately due to her first year being a bit bumpy.

Since having grade 3 rejection over the summer she has yet to have a completely zero rejection biopsy.  There was always a little something lingering forcing the scientist to grade it at a level 1 rejection.  Forcing the team to keep those antirejection meds just a bit higher than they want them to be always putting Katy as risk for infection and causing her to have to fight more than her fear share of illnesses due to her increased decreased immune system. I hope that made sense. We really needed Katy to show zero rejection so we can work on lowering her level of antirejection meds which will increase her immune system and help her body better fight these common illnesses that keep taking her down. 

As a note for any heart transplant families who are reading or have read Katy’s journey… it is important to note.  That Katy is Katy and nothing about her case or her recovery has been by the book.  It is highly unlikely that you or your child would or will endure what Katy has in her 1st year post transplant.  For a patient to get CMV, Grade 3 rejection, a blood infection, and the numerous other things that have gone wrong is highly unlikely. That said and given all that Kay has endured and all the readmissions and close calls. Transplant was still the best treatment for Kate and we are thankful each and every day (even the days when we are fighting a mysterious illness) for the gift of life that our donor family gave Katy and our family.  The team talks to us and worries about us because things haven’t been as smooth as they had hoped and haven’t been as planned.  Mike and I don’t even realize what they are talking about… we expected bumps in the road and this is 100% better than the alternative.  I do my best to keep it real here on this blog and that means you get the good with the bad.  I just never want to scare or have anyone second guess their choice based on our experience.  Everyone’s experience is different.  Some harder some easier all different.

OK back to that annual biopsy.  Going into this yesterday 2/24/13 I felt we had a lot riding on it.  I needed a BIG FAT ZERO! I needed to know that the hardest part was behind us… that we would be finally start weaning some of these meds that we should have already weaned… I needed to know that the bout with Grade 3 rejection didn’t damage her coronaries. 

I am happy to say… we got that BIG FAT ZERO!! Katy’s coronaries are perfect! Her pressures are perfect and we are starting to wean some meds! For the first time in her life… Katy is off of Lasix!!

She was a Rock Star... post cath.  They had to go in through her groin vs. her neck which means she has to lay completely flat for 6 hours. 6 HOURS she did it without too much complaining. I tell you that girl she never stops amazing me.

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Wednesday, February 12, 2014

Happy Heart Anniversary Katy Girl

One year ago today…our sweet baby girl received the most precious gift, a new healthy heart. I am often overcome with emotion when I think of that day.  I still can’t believe that we were so lucky to be blessed with a new lease on life for Katy ( and our entire family)

My heart still aches each and every time I think of our brave,benevolent donor family.  I can only imagine the heartache they are facing on the anniversary of their precious child’s death.  I can only hope that they can find comfort in knowing that their child lives on in Katy.  Mike and I will never be able to properly express our gratitude to them although we will certainty try.

One year ago… I was writing a blog post and I honestly believed that Katy wouldn’t be here in six months if she didn’t receive a heart.  I was preparing for the worst… I had given up hope and was preparing for what our life would be like without the most amazing, funny beautiful girl I have ever known.  Oddly enough Mike never let his mind go there he always believed she would get the perfect heart.  Odd that we were living the same life and fully expecting different outcomes yet neither knew what the other was planning for.

I would be lying if I said everything has been roses and Katy got her heart and life went back to normal.  Because this first year has been hard.  Waiting was definitely harder… but post transplant life has been a hard adjustment on many levels.  The first being this whole idea that we are going to go back to normal. What is normal?  What are we going back to?  As parents, as a family this is the only normal we have known. We aren’t going back to normal… we have to find a new normal.

A new normal while we struggle with a lot of the other parts of life that made up our old normal.  Still lots of meds way more than pre transplant, doctors appointments, much more frequent than pre transplant, heart caths monthly, much more often than pre transplant. Medically in Katy’s case life after transplant was actually more intense than pre transplant. All the while trying to find this new normal.  School and schedules, extra curricular activities… throw in Katy’s bout with CMV and Grade 3 rejection…and our new normal is feeling a lot like our old normal.  Except it’s harder to vent and it’s harder to ask for help because we got the greatest gift in the world and we should be all set.  But we weren’t and some days like last week when Katy was unexpectedly admitted for 5 days with a horrible infection we needed our village. We are always going to need our village.  Katy’s heart transplant was not a cure it was and is a band aid.  Every time Katy gets sick she is SICK and at risk of dying. A simple cold a a bout with strep can kill my child.

That is our reality, that is our normal. But, that does not make us or Katy who she is or define how we live our lives. We will not live in fear… we will be cautious but Katy will go to school. Katy will play soccer. Katy will dance as long as Katy wants to dance. 

Katy’s new heart has given us hope… hope that Katy will get to do the many things. Things I honestly never thought she would live long enough to experience.  I can now allow myself to picture her in a prom dress… and think of her packing up and going to college.  These are things I could never allow myself to think of that… it hurt to much. It represented everything that I believed would never be. I can now daydream about those things.  One of the questions we asked in the early days post transplant days was can she be a mom now?! We were told to focus on Kindergarten…but FYI a heart transplant recipient 

To see Katy out on the soccer field 13 weeks post transplant… words can not describe the happiness my own heart felt.  Seeing her running around with her friends and climbing the hill to go sledding.  These are all things she would not be able to do without her precious heart. 

Although the fight goes on…and the post transplant life isn’t exactly as dreamy as I had hoped.  We definitely traded one illness for another.  The difference being one was fatal and now we are dealing with a chronic illness.  We fully expect the second year post transplant to get easier. Can’t wait to see what is in store for Katy and her Rock Star heart in 2014.  Thank you to everyone who has been there for the highs and lows.  We love you and can’t imagine our lives without you.