Our new reality – May 31

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Our first full day at home and it’s almost like we never left.  Almost.  Not sure yet if Addison remembers her home, but she seems to be settling in.  Aaron and I definitely appreciate being able to sleep in our own bed!  Before Addison got sick, we were just getting into a routine with a newborn baby, and now we are slowly getting back to a routine, though a little bit different than before.  I call it our ‘new reality’.

Here is what a typical 24 hours in our house looks like right now:

6:30am – feeding time, 75ml of special formula; first we try bottle-feeding then whatever she doesn’t take goes through the tube

8:00am – medications: Tacrolimus (anti-rejection), Septra (antibiotic 3x weekly), Ranitidine (prevents reflux and protects stomach from Prednisone), Nystatin (anti-fungal)

9:30am – feeding time

10:00am – medications: Bumetanide (diuretic to protect kidneys), Levetiracetam (anti-seizure), Prednisone (anti-rejection)

12:00pm – medications: magnesium, Vit D, Nystatin

12:30pm – feeding time

3:30pm – feeding time

4:00pm – medication: Nystatin

6:30pm – feeding time

8:00pm – medications: Tacrolimus, Azathioprine (anti-rejection), Ranitidine, Nystatin

9:00pm – bath time

9:30pm – feeding time

10:00pm – medications: Levetiracetam

12:30am – feeding time

3:30am – feeding time

On top of this, we have a standing Wednesday morning appointment at Children’s Hospital for Transplant Clinic.  On those days, we will be at the hospital at 7:45am for Addison’s blood tests, then to the Cardiac Unit for ECG, maybe an X-ray if ordered, and on to the Transplant Clinic.

Right now, the dietitian wants Addison to get her weight up as quickly as possible.  She is back to her pre-hospital weight, but she has basically lost 4 weeks of growth.  That’s why we have to feed her every 3 hours.  The special formula she is on for her chylothorax isn’t quite finished yet…she will take it until Sunday and on Monday, we will switch back to breast milk.  Addison is getting much better at taking her food through the bottle, but it isn’t enough yet.  Until she can bottle-feed entirely on her own, the tube will have to stay.  We are hoping that will only be a few weeks at the most.

As for the long list of medications, already the doctors have started tapering her drugs.  Really, it was even longer just a few days ago!  Her Tacrolimus levels are the most important for now and once she can maintain a constant therapeutic level in her blood, the Prednisone will go (along with the Prednisone-related drugs such as Ranitidine). The anti-seizure meds are precautionary and should be for only 2-3 months.  By 6 months, Addison should be on just one or two anti-rejection medications.

There are other potential complications with transplant patients…for example, when Addison gets a cold, she will be more ill than other kids.  If she gets chicken pox, she will have to be hospitalized to receive 10 days of anti-viral medication.  But for the most part, she will be able to live like any other kid.  The next few months to a year are the most difficult – no out of country travel for a year, avoiding crowds indoors for the next 6 months – but nothing we can’t manage!

Love,

Elaine, Aaron and Addison

 

8 thoughts on “Our new reality – May 31

  1. Welcome home! What a wonderful milestone for your family. Good luck settling in to the new reality. We are thinking of you often and sending prayers and love to you all.

  2. Congratulations on being home!! That is a huge milestone, even though you are now working double-duty as full time parents and nurses. I can imagine it is a huge adjustment and absolutely a new reality.. post-transplant life. Very good to hear there are plans to taper off the med cocktails, and in the meantime, hopefully the prednisone will help stimulate her appetite and keep her weight up.

    I’ve been following all your updates and am cheering you on..

  3. Welcome home!!!! So good to see pics of your new normal. You guys look great, by the way! Love the pic in front of the main entrance to the H. Thinking of you and sending you prayers.
    Liz

  4. Hi Elaine:
    I am thrilled that you are home once again as a family! Though the next year may be tough – the road travelled will be worth it. You have a beautiful baby girl and I know she will bring you both much joy and happiness as she grows and makes her own mark on the world!

  5. Welcome home guys!!!!!! It has been such an incredible journey for all of you. Addison is definitely in the best care possible with you and Aaron. Step-by-step… you guys can do it….as a family. I’m also so grateful that the YONG family is there to support you and help care for the McYong family. The pics of the new “set-up” of the room is incredible! Great idea with the whiteboard! Like you said – it’s nothing you cannot manage!

  6. …Especially enjoyed the May 25 pictures. Congratulations on the Dave Rogers Award. “Serendipity.” I imagine an audience struggling with wet eye syndrome in response to your acceptance speech.

    We sure know the heart wrenching feeling that goes along with “we weren’t sure we’d ever get to see today.”

    We will continue to hold you in our thoughts and prayers.

  7. Congrats on being home!!
    I am so so happy for your family!!
    What a whirlwind of 4 weeks you’ve experienced …..you obviously have an amazingly stronger daughter!!
    Its always so crazy what life throws at you, but you all have proven you can handle everything…..I hope life is simpler from now on!
    It’s crazy how quickly life goes by (like Aaron and I knowing each other for 30 yrs now) especially when you have children…..enjoy every moment!!
    Again….CONGRATS!!!!!
    xoxoxo Kim

  8. So very right, it is nothing you can’t manage. Some days harder than others, but the small things that so many take for granted- you get to celebrate as major achievements! Yeah- one less med, yeah- one more day at home from hospital…Grace quotes crazy Kate Gosselin- “It’s a crazy life,but it’s our life”.

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