Sunday, April 10, 2011

Rain, rain go away

Not sure if anyone remembers this, but there was a Peanuts episode where Charlie Brown was constantly followed by a rain cloud (I'm not referring to Pigpen, but a time when Charlie Brown had the blues due to a series of unfortunate incidents).  That pretty much sums up the past couple of days for me and Lou, with beatiful moments of breakthrough sunshine that made it all worth it.

Before I go through the laundry list of our own unfortunate events, I should preface this by sharing with you something that Lou and I used to say all the time before Ty was diagnosed.  We used to try and laugh off all of the uncanny bad luck we had when it came to the smaller things in life (like spilling red wine all over the new white couch, fender benders, the boiler breaking on the coldest day of the year and the refrigerator breaking on the hottest...), but we always agreed that we were otherwise so incredibly lucky when it came to the more important things in life (our loving family and friends, our amazing parents, I had a good job at PwC, Lou enjoyed his career as a chiropractor, and of course... Ty and Gavin).  In fact, there was a silly "25 things about me" that circulated ages ago when I was new to facebook, and one of the 25 things I wrote was that I feel so lucky in life, my greatest fear is that some day the bottom will fall out.

Well, fall out it did.  Regardless, the amazing news and the most important part of this story is that we have been discharged from the hospital early.  I was given a choice, knowing that I will have to return on Monday for radiation and that there are a lot of meds to manage on my own, but I decided it was worth it for Ty to go home this weekend.  His infection is under control for now, and with only one more week of RT to go (and three days that they recently tacked on!!!) the doctors felt that it would be okay as long as we promised to rush back if there were any signs whatsoever of a relapse. 

Of course, we needed to be sure Ty could hold down his feeds without vomiting too frequently before we could leave.  After he had gone 12 hours without vomiting, I told the docs I was ready to get started on discharge.  It took me forever to pack up, and it took the nurses even longer to get everything ready, but by the evening we were ready to go.  Right when the nurse came in to unhook everything, Ty started throwing up.  No big deal, I said, he's been fine all day.  10 minutes later, he throws up again.  I've seen this before, par for the course, let's keep the ball rolling because by now Ty knows we are leaving and there's no way I'm telling him he can't.  He hadn't complained of head pain in a couple of days, he was getting stronger by the minute, I wanted to bust him out no matter what.  We got out of the hospital without a hitch, but unfortunately the vomiting became an increasing issue.  I've been alternating three different antinausea meds every hour or so ever since and it's been very stressful. 

Ty slept okay during our car ride home, until we ran out of gas in the middle of nowhere.  Yep.  We did.  You're wondering how we let that happen?  Well, our fancy car said we had 30 miles until an empty tank, and we were so worried that we would waste too much time and risk Ty waking up/getting sick in the car, so we decided to go to a place we know just a few miles further rather than pulling off on some country streets and potentially going miles out of our way before finding a gas station.  We called Geico for service, it took 10 minutes before they got all of our information and located us before they told us that it just so happened we were "in between" service areas and they couldn't service us.  We called the State Troopers, they showed up in about 20 minutes (by now Ty is awake and freaking out) but they don't have gas, they can call a tow truck but it will take at least 45 minutes.  We called our friend, who met us with a huge gas can in the same amount of time and we are so grateful (thanks, Charlie). 

We needed to be home to meet our "at home" nurse by 7PM.  We didn't get home until 9, and she didn't arrive until 9:30.  Now we are 3.5 hours late on his antibiotics that were due at 6.  I open the fridge to get him set up only to find that the meds that were delivered were in individual doses although I was specifically told we would be getting a backpack pump that only needs to be changed every 24 hours.  What this error means is that instead of once a day, I would be administering IV meds at 9am, 11am, 3pm, 5pm, 9pm, 11pm, 3am, 5am...(not to mention the countless oral meds in between - see picture below for an idea of those). Part of my decision to go home was to allow for some much needed rest.  I was beyond upset and had to suffer through a completely sleepless night until the pharmacy could deliver a backpack around 3PM the next day. 

Once we got home, Ty also suffered some significant episodes of severe headpain.  I can't tell you what that does to me.  I wanted to scoop him up and run him back to the hospital but Lou was great at calming me down.  Why, when he was doing so well in the hospital?  I kept looking to God and saying "please, allow his brief time at home to be without such pain."  It took a while, but he answered :)  Ty has been doing better with both the vomiting and the headpain over time.  In fact, we enjoyed a very happy evening together tonight, it was such a blessing.  However, I am saving some of his amazing homecoming gifts (HELLO MARY KING AND THE REST OF GEORGIA - THANK YOU XOXOXOXOXO) until he can truly appreciate them :)  But, wow, am I excited to see his loot.  He so deserves to be spoiled like this - I expect smiles from ear to ear. 

So, my point is that I feel like this little rain cloud has been following me again, but I am dealing with it the best I can.  As you all know, I will happily trip and fall when walking down the aisle on Ty's wedding day and I will still enjoy every single second of that day.  Just let me see that day!!  Let me feel lucky when it comes to all the important things again. 

Side note:  I am in the market for a new bag for Ty's meds and other misc. items that don't fit in the diaper bag.  Suggestions?  Another diaper bag might work but they never seem have enough small compartments for all of these bottles that need to remain upright.  I am embarrased to say that I made this with cardboard the other day to keep his medicines in order when the last bag ripped.  It's working great, but it is NOT exactly attractive to carry around ;)

I look forward to updating you on an amazing day tomorrow.  I do think Ty is on the up and up and I look forward to hearing what his doctors think.  Hugs and kisses to all of you out there.  Thank you so much for loving my special boy and for keeping him in your hearts and prayers. 

17 comments:

  1. Yes,trials and tribulations stay strong keep up the good work. I ran out of gas one winter night with nothing in sight and no one to help.
    My tip to you is from now on treat the half way mark as the empty mark. Fill up when the car gas gauge says half. Love You All Paulie Mal

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  2. Prayers, prayers, prayers.... You're an incredible person and Mama.

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  3. I explained your issue with the diaper bag to my dear friend, Nancy Horvath. She would like to make a bag that suits your specific needs as a gift to you. Please contact her at:
    fashionsforyourneck@msn.com
    I continue to pray for you and your family!!

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  4. I am so sorry about all that has happened since last week! Oh my! Please take the best care and realize that I am praying and praying here in Dublin Ohio! I even keep others posted on Ty. I am hoping and praying for a complete healing for him and genuine rest and peace for you! Hoping for a great week for you all... I heard a song this morning that reminded me of you all! The chorus says: I've seen dreams that move the mountains, hope that doesn't ever end, even when the sky is falling... I've see miracles just happen, silent prayers get answered, broken hearts become brand new, that's what faith can do! Lynn Salyer

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  5. Cindy,

    That is terrible about the meds!!! I would have been so angry, that was the LAST thing he needed!I hope they did end up getting the backpack to you, that was way to much individual meds to deal with.

    Running out of gas? That is always something that I have been scared of. I am glad that you had a friend close by!

    I hope when he gets a chance to open everything that he will like it all :O)

    Have a great day and lets finish this week and three days out strong !

    Love yall!
    Mary E. King and the rest of the King family.
    GA

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  6. I am so glad Ty got to come home and I hope y'all both get some much needed rest over the next few days.

    I really pray things are looking up for him!

    Jan
    Georgia

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  7. Cindy,

    Your and Lou's and of course, Ty's strength is just awesome and awe-inspiring.

    We continue to pray for you all, everyday.

    Julie & family

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  8. someday you will be able to laugh about running out of gas :) So glad you were able to bring Ty home for a few days!

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  9. Once again I am praying for Ty. Mom, continue to be strong. I will lift him up every day. The scriptures states,"and this to shall pass".

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  10. I hope you're having a better day and that your family really enjoyed having everyone home last weekend. Radiation is almost over, Yay! I can remember when you still had all those weeks left. Stick in there, it won't be much longer until the summer is here and Ty is playing at the beach.

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  11. Don't you just LOVE days like that? It seems like when it rains, it pours! Luckily you can laugh at them later but jeez, come on!
    We wish you all the best.
    I know there will come a day when you will be telling Ty what a handful he was when he was younger! Whew! What a special kid he is. I tell my 4 yr olds about him all the time.
    Take care of yourself and thank you for sharing.

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  12. I wish I could buy you a nice, big, expensive, sturdy, Louis Vuitton bag with lots of compartments. I bet they could design one for parents in your situation ... ;) what a crazy day you had but glad you came home !!!!!!! You were spotted on a walk ! I was so happy to hear that :)

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  13. I saw that Mirella is planning to provide you with a custom made bag but just in case you needed something immediately I thought I would suggest Wal-mart. I saw a bag in the crafts section that might be a suitable size. I remember that it was medium sized and have several different sized compartments. Praying for Ty daily in Georgia!

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  14. Another immediate bag solution would be a twin diaper bag. I just gave mine away the other day, but skip hop makes a nice big diaper bag.
    Love and Hugs, Cindy. When I'm over my cold, I'm coming for coffee.

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  15. I have been following Ty's journey for months. I don't recall how I came across his story, but I know my life is changed because of it. I pray for you & your sweet boy, & I often post updates of him on facebook- to encourage others to lift him up in prayer.

    I want to share a song with you...
    http://www.youtube.com/watch?v=Gjt80iTmg5g

    It's actually something I have been singing today, & you popped into my head. You are such a warrior Mom & I believe everyone needs an anthem. :-)

    xo

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  16. check out the "diaper dude" bag http://www.amazon.com/gp/product/B000G257ZU/ref=as_li_ss_tl?ie=UTF8&tag=1575-20&linkCode=as2&camp=1789&creative=390957&creativeASIN=B000G257ZU it has a lot of individual compartments.

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  17. Hi Cindy,
    I am sending you a bag to try out, has 10 outer pockets and 6 inside. i hope it helps, if not for Ty's meds, maybe for something else.
    I hope it can be once less thing for you to stress about, you have way too many other things on your plate right now. We are always thinking of you all and sending our prayers your way.
    Kristin Ihrig

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