Sunday, July 29, 2012
For two years our life has been a constant what if…. when… how?
Should we do this? Should we not? Do you have your cell phone? What was Katy’s weight today? I hope they don’t admit her this time. We’re admitted, should we stay or should we go?
As hard as it has been, it has been equally wonderful. We have lived life, as one might live knowing we were on borrowed time. Living with that mindset does change how you see things and do things and I think it has been one of the best parts of this journey. We live for today. We do all we can to fill our days with happy memories. Because the truth is no one knows what tomorrow will bring for any of us. I am confident that Katy is going to come through transplant and be better than ever…but if she doesn’t I know that we have given her an amazing life. She has been loved and she knows how loved she is. She has changed every person that has ever met her and even the ones that just know her through our blog. She has done amazing things and has brought awareness. Here is a glimpse of what we have done is the two years we have had… the two years that we were able to squeak in with diligent care so she had the best chance at quality of life.
Friday, July 27, 2012
Unfortunately Katy’s cath and MRI on last Tuesday (7.17.12) we learned that Katy’s heart is getting sicker and is much sicker than she lets on. For the first time Katy had a rough time during her anesthesia and it was a bit scary in the cath lab with her sugar dipping dangerously low. The cath also showed that Katy’s heart function is worse if not much worse then it was last year. This was expected, but disheartening nonetheless. That said it made our choice to admit much easier.
It took Katy a few days to recover from her little stint in the cath lab and we needed a picc line placed before we could start the Milrione which meant her being put back under.
A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, small,flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body � the extremities. And typically the upper arm is the area of choice. (http://picclinenursing.com/picc_why.html)
Thankfully, Katy has bounced back to her smiling self, and is loving being the Rock Star of 8 East. She is responding well to the Milrione (we know this because of her BNP in her blood work) Given that Katy is never symptomatic it is nice to see the numbers via blood work. We have increased her overnight feed and she is tolerating the increased volume. The team expects (hopes) to see a weight increase within a month, as much as a pound. Given that Katy hasn’t gained an ounce in 2 years a pound would be jaw dropping.
We are all adjusting to hospital life and making the best of a really tough unimaginable situation. Mike and I are at our best we we are advocating for our girl and we make a great team. They say times like this make or break you and thankfully it has made our marriage stronger. We both looking forward to the future and still have lots of hopes and dreams that we will make it through this and it will one day be a distant memory.
Patrick has been amazing! He is passed from grandparent to grandparent…hospital to home and is so easy going and just the sweetest, most kind hearted little man.
So for now we wait. Waiting is hard, the unknown is scary, and the fact that life goes on and laundry still needs to be done is daunting. But, we’ll do it because what choice do we have?
As always thank you for your prayers and kind words, you donations and gifts. We could not do this without our village that expands around the world. You get us through our days. We love you and are so thankful for each and every one of you.
Disclaimer: This was written at 11:30 pm I hope it makes sense.
Sunday, July 15, 2012
I went to bed at 1 AM and it is now 5:15 AM, I guess I should be thankful for what little sleep I was able to get all snuggled up with my sweet, strong, amazing little girl. I could stand a lot to learn from that little girl who is wise beyond her years.
Yesterday was a rough day for both Mike and I . We were both busy getting things done, trying to keep busy. We could hardly look at one another, for the fear that once we did we would loose it. Mike is always so strong, optimistic and it is no secret that he is the glue the keeps me together. He has the ability to make me believe that we are going to get through this and be better for it. But, even he has days when I can see it in his eyes… I see the pain, sadness and fear in his eyes and it breaks me. Because, I am not strong enough to comfort him. The bond that those two share is indescribable, from the moment she took her first breath he has been caring for and loving her every second of every day. He is the most hands on dedicated daddy I know.
Although Patrick knows Katy is going to have a sleep over,and he doesn’t understand what that really means. He does know that it means he won’t have his best friend to play with… he knows that it means he will be passed around our family members and either missing his mommy or his daddy and most of all his Katy girl. (He may be her younger brother…but he always has her back. ) when he does get to be home playing with his own toys and sleeping in his own bed.
I do think that a week from now… we will be settled into our new routine… we will have worked out the scheduling kinks. We will be navigating our way through our new way of life. I know we just need to get through this week. I also so how hard that is going to be.
Any prayers and good thoughts you can send our way our much appreciated. I may not always reply, but trust me I am always comforted by your words.
Saturday, July 14, 2012
a friend told me I had to keep it together until Sunday and then I was allowed to loose it. So that is what I am doing, and in the process we are living it up. We have been so busy that my head is spinning at 1AM when while I write this. Murphy Custom Creations has had some steady work, and I have been selling off some unwanted craft supplies to help supplement our income, Mike has been working for my dad a bit and we are just at full throttle… trying to get as much done as possible. And keep a family of 4 running and doing all the normal tasks that need to be done…(like finding and cleaning that god awful smell that is coming from my refrigerator. So with the help of my amazing husband,
some amazing friends (you know friends that send you for an hour long deep tissue massage because they think you could really use it… that hour was HEAVEN ON EARTH. Thanks D.) and family that is willing to watch your kids so you can organize your house, and then offers you a housekeeper to do the deep clean) WOW! Cousins who travel from all over the country to cuddle my babes and have some quality family time together.
I have so many Thank you cards to write and I promise if I owe you a thank you and I am sure I do… I am really going to work hard to get them in the mail. Please know that we appreciate every kind thought and prayer you have sent our way…every gift and piece of happy mail that has arrived on our door step. We could not do this without you and I know that it is what is going to get us through this long and hard and scary leg of this next part of the journey. I am trying to keep telling myself that getting through this is going to be so hard… but I know the reward will be my sweet girl with a healthy heart growing and thriving and living a whole new life. Soon enough we will be back to picnics in the park…
and water balloon wars in the driveway
Monday, July 02, 2012
No… not our coffee cups ( well I am filling that too) I am referring to our cups of love & joy. The cups that get you through the hard times…make life more bearable.
This weekend was spent up in the beautiful White Mountains visiting with Aunties and Uncles, cousins and friends and we made lots of great memories… memories that I know are going to get us through these next few months.
We felt loved, and cared for. We laughed, we cried… we enjoyed one another. I love Mike’s NH family… they really love and care about us and we always leave their feeling recharged and renewed. I am so thankful that they are such a huge part of our life. I love to see Katy & Patrick get so excited to see their cousins, and be snuggled by their aunties.
Katy & Patrick had a chance to perform at The Shannon Door
Ate The Best Pizza in the World…
I’ll be back tomorrow with some more… and our trip to Storyland!
We have been trying to do a lot of fun things that are on Katy's "Bucket" List (within reason) and it was brought to my attention that some people are bothered by the term bucket list... I can understand why...for me it was more like a fun things to do before admission and really before our whole world changes. This will be the last time we do these things with the heart that now beats in Katy's chest the heart that grew in my belly.
Seriously I have given this more thought than I should have... I am going to stick with Bucket List... we have been calling it the Bucket List all along...and it just makes sense to us... we know what it means for us and we will educate our friends and family who cringe when we say it! This is the bucket list for this heart... we fully intend to do all these things and more with her new precious heart once she gets it!