4 months ago…..

4 months.

I’ll just let that sink in.

4 months ago today, Capt Snuggles had his liver transplant. I thought it would be the end of the fear.  The end of the constant worry over brain damage and the downward spiral an episode of high ammonia can cause.

Instead it was just the beginning of new worries and even greater fears.


Everyday seems to bring new problems, new mysteries to solve.

Yes, I said mysteries. We already knew Capt Snuggles was an enigma. But he proved it double-fold on Friday. After a random quiet day on Thursday, Friday dawned with increased lymphocytes and additional redness to his skin.

After his dressing change, the BMT doctors ordered another round of campath. It’s only been 2 days since his last dose, so this is serious. His lymphocytes showed re-emerging T-cells.  T-cells are not our friends.

During his infusion of campath, a very disturbing thing happened.

He turned purple.

His hands, his feet, and most of the areas where the renewed redness had been, turned a dark, almost black shade of purple.

You can imagine how quickly ALL the doctors came running. After double checking the ventilator, drawing blood for numerous labs, checking and double-checking his heart and lungs and examining his skin, the doctors were still perplexed.

He started the new antibiotic 3 days ago. He was receiving the campath infusion when he initially turned purple, so the Chaperones thought maybe there had been a drug interaction or reaction, so they turned the campath off.

Slowly the purple went away. Maybe it was a rare drug reaction. The pharmacist was called. While they waited for some answers, he turned purple again. Not quite as dark as before, but definitely purple.

Most of the blood-work came back stable. He was slightly acidotic, so they gave a dose of sodium bicarb, but really, other than that, nothing jumped out as the culprit.

Clinically, he was stable, though they decided not to continue with the campath, just in case. Of course, this all had to happen as I was leaving.

Yes, you heard right.

For the first time in almost a month, the Hub was bringing the boys down to spend the weekend. I wanted to send them home. I wanted to pull my chair up and sit alongside Capt Snuggles’ bed all night long.

But I didn’t.

Hub picked me up from in front of the hospital and we went to spend the night at the RMH with the boys.

It was lovely to spend the evening with the boys, but it was mind-numbing to think of David and all the things that could possibly go wrong overnight.

It’s a tough balance.

Made all the tougher when the phone rings at 6am and it’s the Fellow on the other end. Fortunately it wasn’t catastrophic, he’d had a particularly large poop and they needed to change his dressing. They needed to use the propofol to sedate him and had to have consent.

But that call at 6am had my heart-pounding and my mind racing.

I went ahead and got ready to go over to the hospital to attend morning rounds. Before I walked over, I checked his 4am labs.

His hemoglobin was low, his platelets were low, his potassium was low, his IVIG level was low, but his lymphocytes were high. They were at 3% Friday, when they decided he needed the campath. Now they were at 14%. And to make matters worse, when I arrived at 7:30am – he was still purple.

Maybe we should just agree it’s the Worst. Month. EVER.

They agreed at rounds that he needed blood, platelets, IVIG, a potassium bolus & he needed to make-up the campath they stopped yesterday. They agreed they would watch him very carefully before and after each infusion he was going to get. (All this was in addition to the 4 antibiotics, anti-fungal, IV nutrition, sedation, pain meds, & steroids he gets daily.)

And I was going to Chuck E. Cheese’s with the boys for Jonathan’s birthday.

I know he’s in good hands, I do. But it doesn’t erase the guilt I feel when I have to leave him. Just as I know the boys are taken care of when I’m not there,  it doesn’t erase the guilt I feel for not being there when they need me.

Of course, I went to Chuck E. Cheese with the boys. But I thought of Capt Snuggles as we ate pizza and played games & Jonathan opened his present’s. Just as I think of the boys, as I spend endless days and nights sitting with Capt Snuggles.

All I can say is…….

Worse. Month. EVER.

Categories: Life | Tags: , , , , , , , , , , , , , , | 12 Comments

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12 thoughts on “4 months ago…..

  1. Stacy

    Oh Amy! I can’t even imagine the pain you feel being away from your boys! I’m so glad you got out for a moment.
    Still sending positive thoughts and prayers your way!
    You are so strong!! Hugs to you!
    And here’s to a better month!!

  2. What can I say? I hope you know that you’re doing right by all your kids. Every day. Best of luck.

  3. It takes a STRONG woman to have to deal with all the problems that you have had to, where the kids are concerned. I can’t imagine the heartbreak.

    I’m a Cornea recipient myself, and just going through that alone was enough to break me and make much internal guilt. But to have to go through all of this with your children is 1,000 times worse.

    Just keep *trying* to look up and see the GOOD that the future has to offer. You are a terrific mother. Don’t let yourself or others tell you different.

  4. Jennifer

    As you continue to go through this difficult time, I continue to read your struggles and do not even know what to say to bring you any amount of comfort. Just know that your words are being read and people are keeping you in their thoughts and prayers! Your little man is quite the fighter.

  5. Tonya Fisher

    My son Isaiah went septic as well and turned purple ash color. There are not words to describe watching your child go through something so difficult, with all the blood counts off, needing transfusions etc…It is scary and the pit of your stomach feels like it is wrenching while your mind is racing…wondering how/why did it get to this point. Where do we go from here? What’s next? I know these feelings and feel the pain with you as I read your words. In this time, it is draining just to get through the next 5 min. Just know that my thoughts and prayers as well as so many others are with you…waiting to hear and stand firm with you on what comes next. We Love You!

  6. Hi Amy,
    I’m linking over from FTLoB. I just read your “Introductions” tab and I’m already hooked (not in the “I’m entertained” sense – I hope you know that!), but in the sense that you have an amazing story to tell. Each of your children are miracles, but Jacob, Jonathan and Zachary have that something-extra that, through your sharing, will inevitably help others in their journeys with Citrullinemia.

    The written word is so powerful; please continue writing and sharing Nathaniel, Jacob, Jonathan and Zachary’s stories (you and your husband picked awesome names, by the way!)…I will keep you and your family in my heart and in my prayers.

    It’s nice to meet you. Take care.


  7. Amy,

    Thinking of you and checking in as always. Pulling for good news for Captain Snuggles. You can do this. You will be ok. Things will turn for the better for him. He’s a fighter. Stay strong!

    Veronica 🙂

  8. Reading through this is breaking my heart… I am so sorry you are dealing with this. It sounds like you have a very tough little guy on your hands – make sure to take care of you too!!

  9. Sairah

    Oh my God, purple? Oh Amy, stay strong momma!! (((HUGS)))


  10. Amy, I just don’t know how you are doing it. You are amazing and I can only imagine how hard all of this is for you and for your whole family. I am just going to keep hanging on for good news one of these days. You are always, always in my thoughts.

  11. dysfunctionalsupermom

    Oh, Amy. I understand the guilt aspect of being with one child while you miss another. I deal with that every day. Half of my soul in Texas while the other half is here with me; no possible resolution to dream of–but even my struggle to maintain balance is NO comparison to yours. YOU are an enigma. You are a light & a gift. You are a blessing to your kids & I promise that they know you are with them, even when you are not physically present.
    Still praying…always praying.

  12. God truly blesses us! He is with you through this, amen. I am a paralytic and I have God too in my life.

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