Monthly Archives: December 2010

Post A Day Challenge

Yes, I think I will take the Post a Day Challenge. Thank you very much. At first, I wondered what could I possibly write about for the next 365 days?  But then reality smacked me in the face – I have 6 kids – I have plenty of embarrassing, wholesome family stories to share.

I’m not one for New Year’s resolutions, but maybe this can be mine. To write something, anything: Every. Single. Day.

And just for the folks that are worrying that I took a bit of a break over the Christmas holiday (yes, MK, I’m talking to you!) Don’t worry, I’ll be back describing David’s poop, in all it’s poopy glory. By the end of 2011, you’ll be tired of hearing from me. Well, hopefully not, although I do like the sound of my own voice….

Anyway, I was just gathering new stories to share. Stories about adventures in potty-training (see, poop is always a winner…), about Jacob’s new found desire to travel to Pakistan, I know, right? Most kids want to go to Disney World. Jonathan’s obsession with snakes. Yeah,  I have no idea where that’s coming from.  And stories about David’s recovery. Because, he will recover, it’s just a matter of time.

So here’s to a New Year filled with Hope, Health, Friends & Family.

oh, and did I mention what I got for Christmas? My Hub got me my very own laptop. Best. Present. EVER! Of course, in his words it was so I could do my “blog and crap”. I guess I better not disappoint.

I need to get crackin’ on my crap.

Categories: Life | Tags: , , | 3 Comments

The Honeymoon is over.

Sunday morning dawned bright and early, with the typical Christmas hangover. The boys all had too much stuff and attention spans too short to play with any of it.  So while they haggled with each other about whose stuff was better, I walked over to the hospital to listen to morning rounds.

Capt Snuggles apparently has more tricks up his diaper.

He seemed to be doing well. He’d had a quiet night, the Chaperones were quite pleased with him. Then I saw it. The telltale signs of blood in his diaper. I opened his diaper and it was just full of bright red bloody poop. The Chaperone informed me that he hadn’t pooped in 24 hours and his NG tube was putting out a lot more stomach juice than usual.

Christmas is over and so is the honeymoon.

That earned him a CT scan to rule out any blockages in his intestines. He has GVHD in his intestines. It causes them to become thick and swollen and difficult for things to pass. Since he’s gone from pooping almost every hour of the day to just once in 24 hours and bloody on top of it – there’s much cause for concern.

We end up waiting most of the day for the scan  – Sunday afternoon turned out to be a busy time in the ER – several  trauma’s came in, putting us at the bottom of the list. During the wait, he has another, not quite as bloody stool and his NG output is still copious.

By evening, we have results – everything looks pretty much the same as the previous scan. No obstructions (good). No air in the intestines (not so good). They are thick and fluid filled.  It’s good news that there is no obstruction, but we still don’t know what’s causing the bloody stool and the increased NG output.

He is a riddle, wrapped in a mystery, inside an enigma. Thanks, Winston Churchill. Perhaps there is a key, we just can’t seem to find it.

Monday went quietly, no more poop, bloody or otherwise.  They have managed to go down some on his pain meds/sedation.  They’ve also gone down on his ventilator settings, in preparation of extubation sometime next week. His lungs are still pretty weak. Weak from being on the ventilator and having excessive fluid in his lungs, not from any issues inherent in his lungs.

And his skin continues to look absolutely amazing. Every day people stop by and gush about how awesome he’s looking. It’s good, it is. But now the real work begins, to get his insides working as well as his skin looks.

It’s going to be a long, long road.

Whew. And I’m already tired. I think exhaustion has finally caught up with me. Monday morning, I was so tired, I went back to the RMHC and slept. And slept. And then slept a little bit more.

Tuesday morning I woke up and I swear I could have went back to sleep for another few hours. But morning rounds were waiting for me.

I went back over to the hospital. He still hadn’t pooped and his NG output was still significant. His skin continues to be awesome.

He didn’t have another poop until about 3pm Tuesday and it was a repeat of Sunday mornings, bloody. Overnight into Wednesday morning, he had a total of 4 more bloody stools and his NG output is higher than it’s ever been.

On top of ALL of this, his lymphocytes are increasing. While they are not super high, they are elevated enough to determine that 50% of them are T-cells.

T-cells are not our friends.

They ordered a more in-depth blood test to determine if the T-cells are naive (his own) or activated (most likely from the graft).

So we’ll wait.

Maybe I’ll go take another nap while we’re waiting, I sure am tired.

Categories: Life | Tags: , , , , , , , , , | 7 Comments

My Christmas Miracle

It’s been over a month since I was able to post pictures of Capt Snuggles. During that time, we almost lost him.  From head to toe, the GVHD ravaged his body.

His skin, his gut, his eyes.

They told me he might not make it.

They told me to be prepared.

But what they didn’t tell me was to hang on to my tiny shreds of hope. They did not tell me to get my hopes up every time some little bit of good news was delivered. They thought he would give up and we would have to accept that.

David hasn’t given up.

In fact, I’m bursting to be able to utter these 3 little words.

He’s getting better.

What beautiful fingers....

Yesterday, we completed his dressing change in about an hour, 2 Chaperones and NO proprofol. That’s right, NO additional sedation was needed to change his dressings.

I am AMAZED at his progress.

Simply Amazed.

Of course, what better time than Christmas to show off this amazing progress.

I can’t ever show you the “before” pictures. Yes, I have a couple. They are too heartbreaking for me to share. Just trust me when I say……

These piggies are absolutely Amazing.

 

This little piggy went to the market.....

Thank you to everyone who faithfully reads our story.  I am honored to have made so many friends through the simple sharing of our journey.

A journey that, really, is just beginning.

Merry Christmas to everyone.

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

The Good, the Bad and the Purple

I have become the worst kind of superstitious. I’ve always been a bit weary of saying things out-loud. If I am boastful of something good, will it fade away? If I utter the bad into existence will it manifest in spades?

It’s been 2 days worth of not-so-bad. While not exactly progress, he hasn’t back-slided, either. I’m leery to say these things out loud, to express the hope that we might actually be one step on the path to recovery.

As far as they can tell, the lovely purple color he turned is a reaction to the daptomycin. Very rare side effect, but a known side effect nonetheless.  Clarification, OUR doctors didn’t know about it , but someone finally confirmed it to be a known side effect.  He now turns purple on demand whenever he receives the daptomycin infusions. Violet Beauregarde would be proud. Thankfully, it’s only once per day.

His dressing changes are slowly becoming less traumatic. While his belly and chest still have areas of bleeding and rawness, his arm and legs look wonderful. His feet and hands look amazing. Again, let me clarify. While he’s not going to win any modeling contests right now, he no longer looks like the Thing in these areas.  I might even be able to snap a photo or two of his pretty pink toes in the upcoming days.

I brought up the subject of extubation today and the Fellow thought I was crazy.  I want it included in discussions, though. I want tangible goals set, so we don’t lose sight of the fact that he is improving, however slowly. He was intubated because of the severe pain associated with the GVHD. With the GVHD resolving and his skin healing, he should have less pain and be heading towards extubation.

(I also realize, nothing is this cut and dry. I know he has lots of other issues, such as whether or not his lungs are ready,  but it all needs to be discussed.)

Part of the problem also lies with the drugs. He needs to be sedated while he’s intubated because he could obviously hurt himself otherwise. He needs pain meds because he still has some pain/discomfort from the GVHD.  I firmly believe that at this point, the sedation is needed more because he’s intubated rather than any major pain issues. They’ve thrown so many narcotics at him , he’s going to need drug rehab for several months just to come off all these meds.

His lymphocytes were elevated this morning at 8%. In the past, the BMT doctor’s would check a blood sample and check for the T-cells. We have a new BMT Attending this week that wants a different blood test, one that tells us the percentage of donor cells vs. his own cells. This test is difficult to get – it needs to be sent out of the hospital and it takes several days to get a result. So while I agree with needing this test, I’m concerned the T-cells could be multiplying and wrecking havoc on his body while we’re waiting for results.

So we’re back to the waiting game.

At least we’ll be busy while we wait. Wednesday is Jonathan’s 6th birthday. He spent his first 2 weeks of life, which included his first Christmas, in this hospital. AND He also spent his first birthday here, coming home just in time for Christmas.

Zachary’s 3 year liver transplant anniversary is on Christmas Eve. He spent his first Christmas in this hospital, just like David is going to do.  Even among the not-so-good, we have lots to celebrate this week. My sister-in-law was roped into, generously agreed, to spend Christmas break here at the RMH with the boys. So I get to spend time with the boys and still be close to David.

Sounds like my week might just tip the scales in favor of the good.

Categories: Life | Tags: , , , , , , , | 4 Comments

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.

*sigh*

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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