Updates from Home

26 Oct

Jody has been home from the hospital for five days now and we are settling into a new routine.  I have three weeks off work and while I’m thankful for that, it doesn’t seem like nearly enough.  I remember the transplant coordinator at the hospital telling me to be sure I was rested and ready for discharge because it would be “all you (me) at home” taking care of Jody.  I am surprised at how much time post-transplant caregiving takes (that and being Mommy).  Twice a day Jody has a number of self-monitoring tasks he needs to do and record, such as weight, vital signs, lung function testing, etc.  DSC_0346AHe has an extensive medication regimen that begins at 8am and concludes at 10pm (see photo on right of all his oral medications).  He also has a number of intravenous (IV) and inhaled medications.  It is so weird to me that his entire medication list is new (as in, he no longer needs most of the CF meds he’s been on for as long as I’ve known him). It feels like everything I’ve learned in the past 10 years about Cystic Fibrosis is thrown out the window and now I’m learning an entire new beast called ‘lung transplant.’

At discharge we sat down with a pharmacist and Jody’s transplant coordinator to review his meds and fill his first pill box.  We were given an eight page chart full of medications to guide us with what to take and when to take it.  This first week I gave Jody a ‘free pass’ and I took responsibility for giving him all of his meds at the appropriate time.  Next week we will do it together and the third week he will do it by himself while I watch.

I learned a few things this past week, one being that the pill box provided by the hospital was not working (at least for me).  There were not enough slots in a day to accommodate the numerous times he needs to take meds.  For instance, all morning meds were lumped into one slot even though they are taken at different times throughout the morning.  After an unsuccessful Google search for a six-slot per day (or more) pill organizer, I decided to get creative and make my own.  I bought two seven-day pill boxes with four slots for each day.  I flipped the boxes on their side to make the seven-days become seven-slots (per day).  DSC_0376Now I can label the specific time Jody needs to take his meds and I even have an extra section for PRN (as needed) drugs or Jody’s digestive enzymes.  I realize that pill boxes are not exciting reading material so please know the only reason I share this with you is because there are a number of pre and post transplant readers of my blog who might find this method helpful for them as well.

In addition to medications, Jody also needs to check his blood sugar four times a day and often requires insulin coverage (he will most likely develop full-blown diabetes as a side effect of some of the medication he is taking for his lungs).  One thing that is odd about this is that because of his Cystic Fibrosis, which still affects his GI system, he doesn’t need to limit his sugar/carbohydrate intake.  As a result, he can eat things most diabetics would need to avoid, although it does cause his blood glucose levels to rise significantly.  It’s hard for me to understand this balance or lack thereof.

On the day of discharge Jody had swallowing study #5 done.  If you remember, the week before he was given permission to eat again, but wasn’t allowed to drink thin liquids.  At this test they did clear him to drink regular liquids but he must tuck his chin down to his chest to swallow.  He is still experiencing laryngeal penetration where the liquids go down into the larynx and are stopped by the vocal cords from entering into the lungs.  He was given a special cup to use for liquids because it only allows him to take in 10 mL of fluid per sip.  I lovingly refer to this cup as his ‘adult sippy cup’ because that’s just how it looks.  This cup prevents him from taking in large volumes which would most likely make their way past the vocal cords at some point.  After everything we’ve been through another aspiration episode is the last thing we need.  Jody also can’t eat foods that are mixed with liquids such as cereal or soup, like vegetable.  Additionally, to prevent aspiration he needs to sleep at a 30 degree or more angle. Propping pillows and not being able to change positions at night has been difficult and uncomfortable for Jody. He is waking up with back pain as a result. We’ve heard mixed talk about the follow-up plan regarding his swallowing issues.  He might need speech therapy to give him exercises to strengthen his swallowing muscles or they might just wait and repeat another swallowing test (yes, #6!) after he’s been eating on his own (which could in itself fix the problem).  For right now Jody is really glad to be able to drink again, even if it is just 10cc’s at a time.

At this time Jody is not allowed to be left alone.  Because he is immunosuppressed, and we are in cold and flu season, we continue to be careful about germs and exposing him to outside people.  It’s hard to know when and how to let up on this.  As far as I am concerned, for the first time in five weeks I am mask-free!  This is both liberating and terrifying at the same time.  I often wonder if I will ever kiss him without fear of killing him by spreading some bug I may not know I have.  I realize everything is quite fresh right now and that I will probably relax about it in due time, but for now the fear of germs and bugs is still very real.

I wish I could say we’ve been living it up here at home and having the time of our lives, but it simply wouldn’t be true.  While the routine is going fine, Jody has not been feeling well.  He has spent much of the week sleeping and is having a lot of intermittent yet intense abdominal pain.  Eating makes the cramping and bloated feeling worse, not eating is causing him to lose weight that he shouldn’t be losing.  It’s hard to encourage him to eat, knowing the pain it will cause him, yet its hard to see the skin hanging off his body knowing it will only get worse if he doesn’t eat.  It wouldn’t surprise me if they start using his feeding tube again for extra nutrition but Jody is strongly against this.

Bowel obstruction could be the cause of all the abdominal pain Jody is experiencing.  Today the doctors called in a prescription for him to do a colonoscopy-type bowel prep that should clean out his system completely.  Tonight he is feeling a little better but he also hasn’t eaten so it’s hard to say if the clean-out worked or if its his empty stomach that has him feeling a little better.  This has been an ongoing issue for Jody and it is very frustrating and overwhelming for him.  He has had moments where he sincerely wondered if all of this (transplant) was even worth it.  I know that deep down he knows it was, and that he will get better, but we (you and I) can’t belittle how hard this major surgery was on him (and anyone else going through it).  It’s so much easier for me to say, “Of course it was worth it!!!” because I’m not the one experiencing it first hand.  For this reason I chose to stay quiet, but it didn’t keep me from shouting those words in my head.  I know that in his heart Jody knows transplant was worth it; he’s got a wife and two little girls to live for and to watch grow into young ladies.

Speaking of little ladies.  On Tuesday our family of four will finally be back together.  Our youngest daughter had a recent live vaccine so she wasn’t allowed to be in the same house as Jody for a two-week period afterwards.  It turned out to be a smooth transition to home only having the oldest with us because she is in school for eight hours a day, and is also a little more independent.  I’m excited to have everyone at home under one roof, but I’m not gonna lie, I’m a little nervous about it too.  Please pray that God would give me an extra dose of patience and that things would go smoothly.

We will be heading back to Hopkins for transplant clinic on Wednesday.  This will be a weekly thing for the time being but the visits will gradually be spaced further apart.  Hopefully by this weeks appointment Jody will feel better and won’t need to stay; that possibility is never very far off.  Please continue to pray for Jody’s ongoing recovery and especially for the GI issues he’s been having.  Your words of encouragement do wonders for the soul.  It is so touching to know that people (still) care and so I hope you will take the time to continue uplifting Jody with your words/comments.  Until next time… thank you for reading.

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15 Responses to “Updates from Home”

  1. kare2320 October 27, 2014 at 12:17 am #

    You dont know me but I am Tiffany Costlows mom.  I attended the auction with her and was so impressed by your story.  I have many on my prayer list through our church prayer chain.  However you were added immediately at the auction and many prayers are offered for you daily.  And will continue always.  God always hears our prayers.  Continue to stay strong and let Him do the rest… P.S. Tiff, my daughter works at Womens and Babies with your Tiffany.

    • CF Wife October 27, 2014 at 8:32 pm #

      Tiffany (your daughter) actually oriented me eight years ago. She is a great nurse. Thank you for coming to our auction and especially for praying for my family, we appreciate it.

  2. Sharon October 27, 2014 at 12:26 am #

    Praying the GI trouble will be resolved and that the road to full recovery will be a smooth one.

  3. John Leaman October 27, 2014 at 5:22 am #

    When Things Seem Impossible

    Jeremiah 32:17-22

    What is your initial reaction when you encounter a difficult circumstance—one that looks impossible? Some people go into overdrive searching for an answer or a way out. Others curl up in defeat or withdrawal, either declaring the situation hopeless or trying to avoid it altogether. Hopefully, as a Christian, you turn immediately to the Lord, seeking His guidance. But what you ask Him is very important.

    • O Lord, what am I going to do? At first glance, this seems like the right thing to ask, but is it really? The problem with this question is that even though we are seeking the Lord’s guidance, the focus is on our actions. That means the way we think about how to handle the situation is limited to our abilities, resources, and understanding. Often, our minds begin to devise possible plans, and we soon resort to manipulating and maneuvering in an attempt to fix the problem.

    • God, what are You going to do? This is the right question because now the focus has shifted to the omniscience and omnipotence of almighty God. He blows the sides out of any box that confines us and untangles any situation we find baffling. He has the power to carry out His plans, which—unlike our solutions—are perfect and always bring Him glory.

    To truly pray the second prayer, you must be willing to surrender all your plans into His hands. Not only does He know what to do and how to accomplish it, but He can also make a way through any impossibility. Your job is simply to trust Him and be obedient by following His directions.

    Dear ones.These daily prompts from Charles Stanley (In touch ministries) help bring continued hope, inspiration and determination each day as we experience,just a sampling of ongoing medical issues in my own on life. God is faithful. Continue your focus on Him. He promised to walk with us,and I can attest,He does that.He remains “closer than a Brother” The enemy would have us believe otherwise, but trust me, He’s there for us as He promised —– don’t lose focus.He loves you,and so do we. Your in our prayers. Let us know how we can help in other, more tangible ways as well.
    Luv yas,
    John&Linda

  4. Sheryl October 27, 2014 at 6:34 am #

    Keep plugging along. This WAS all worth it.
    Jody you just had major surgey and it will take
    Time to get even better then you were before .
    It was nice to see you yesterday.
    I hope the adjustment with having eveyone under one roof is a good one.

  5. Kendra October 27, 2014 at 7:55 am #

    Yes, clearly “being at home” is not synonymous with “all better.” But it DOES indicate that he is recovering, and is that much further away from the surgery itself. We are SO proud of you both and the courage you have, voluntary or not, to undertake such a huge surgery and recovery period! We’re praying that the newness soon becomes routine and second nature so that you can enjoy being together… and especially that the current GI symptoms are soon figured out and disappear! You got this! One day at a time…

    PS Nice pill bottle idea!

  6. Candace Hansell October 27, 2014 at 8:03 am #

    Keep taking things one day at a time. I hope Jody’s Gi issues clear up soon. hopefully everything will go well at Hopkins and he will not have to stay. I will be traveling to Hopkins Wednesday too for a pre-transplant follow up. Will keep on praying for your family!

    • CF Wife October 27, 2014 at 8:25 pm #

      Hi Candace, if you see us on Wednesday, be sure to say “hi.”

  7. Jana Martin October 27, 2014 at 1:54 pm #

    Always glad to read an update! Continuing to keep your family in prayer.

  8. Linda Leaman October 27, 2014 at 2:12 pm #

    Jody and Tiff we are praying for your family and that we can see you soon, can’t wait to give hugs. We love and miss you all.

  9. Marian Ressel October 27, 2014 at 5:49 pm #

    I was hoping that you were going to send a new post. I was wondering how things were going at home. I am sad to read that Jody is having trouble eating. On the other hand, I am immensely impressed by the pill boxes that you made!! I really wish that you were my partner at EMU. I have a feeling that my time spent there would be much smoother because you are brilliant. I was overwhelmed looking at the meds Jody is on, and you indicated that those were only his oral meds!! As a nurse, I almost started hyperventilating at the thought that I would have to try to keep them straight. Jody is extremely lucky to have you by his side. I continue to pray for all of you.
    Love you,
    Marian

    • CF Wife October 27, 2014 at 8:27 pm #

      We would have killed it at EMU! 🙂 Since you’re as anal as me you would have done just fine with all the meds. Just took a nicely organized chart, my new handy pill box, and lots of double checking.

  10. Michelle October 28, 2014 at 7:55 am #

    Hang in there Jody – as always praying for you and the fam. I am thankful you have one of the best nurses ever to take care of you during this difficult time, awesome outside of the box thinking Tiff with the pill box! You should get a patent 🙂

  11. Marilyn Titter October 28, 2014 at 9:15 am #

    Jody, it seems so overwhelming right now, and the GI issues are rough, hopefully that will smooth out, that is one thing I am praying for, as it is tough enough to eat, let alone the issues after eating you have. The meds, yes it is almost unbelievable the amount needed. This too will get easier to manage, and become your normal. Use your tablet for reminders, Paul numbered each bottle next to the MAR we created when refilling the medi sets. He could locate the bottles quicker. He to used the multiple medi set idea. We purchased at ACMoore a clear plastic (2) set drawers that all the “stuff” was kept, and he used our bedside end table with drawers for stuff there, so he didn’t have to carry as much upstairs in the evening. We even purchased an adapter for the car with a plug so he could do nebs in the car, as his took forever to do. You will overcome this slowly but surly, and this time next year you will be celebrating the first anniversary of your new lungs that have given you new life and breath. You are so brave, and you are showing your girls how much you love them. Even if they don’t fully understand the depth to which you have gone to, to become a transplant survivor, they will sooner or later, and will love you back even more. You are not alone, God is with you, we all are with you, and be not afraid, it’s written in the bible 365 times. The prayers are going up, allow yourself to feel them, let us carry you when you need us. Prayers for all of you!
    Love,
    Marilyn

  12. Carole pape October 29, 2014 at 9:35 am #

    I received your card yesterday and was astonished that you could possibly find time to send me a thank you with all that is on your plate! So happy the auction went so well and I am rejoicing for the faith and strength God has given you and Jody through this entire situation. I am believing Gods hand is on you both in a BIG way and He will finish the work He has begun! Dianne keeps me updated and I love reading your news letter.I get tired just thinking about all you have to do each day but I know it is Jesus who equips and enables you. Our ladies prayer group will continue to keep you lifted up. Just wanted to add that your pillbox is absolute genius! I wish I had thought of it when my husband went through his illness. Jody is Blessed to have one of the best caregivers ever! Love, Carole

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