Posts Tagged With: parenting

A Bit of Humor

The boys had yet another snow day yesterday. This makes number 9. Which would be okay – if we actually had snow. We don’t. It snowed overnight Monday and laid about an inch, maybe an inch and a half of fluffy white stuff on the grass. Not in addition to the several feet others places have, just a light kiss of snow on the grass. The boys will be in school until Father’s Day, I’m sure of it.

So we spent the day in our pajamas and the big boy’s spent most of the day trolling the internet for games to play. I know, stellar parenting 101 – allowing the minions to play computer games all day. BUT, they did not get into any trouble and I knew what they were doing, so it’s a win in my book.

The littlest minion, not so much. He has a serious Netflix addiction. Serious. As in, there’s probably more PBS & Nick Jr. shows in our instant queue than on the actual channels. Except that he has the attention span of, well, a  3 year old and he flits from activity to activity like a hummingbird. Just like a hummingbird – neither can stay still.

As I was sitting at my dining room table turned thinking-space, I heard a heavy crash echoing from the living room, followed by “Oh, Shit” clear as a bell. From the Rain-Man minion, of course. Cusses are his specialty. He ran past me into the kitchen, cheerful as a lark.

Did you just say “oh, Shit?”

Yes, I did Mommy, I did say “oooh Shit!”

And with that he giggled and ran back into the living room.

At least it was an appropriate use of the word.

And then there was this in my refrigerator:

Apparently, he was saving it for later.

Really?

Later in the day, as I was, yet again sitting at my dining room table turned thinking-space, Zachary came in announcing he had something to show me.

As I turned to look at him, he flashed me. Yep, that’s right, my little minion had his willie in his hand, waggling it at me.

Put that away, no one wants to see your willie.

He giggled and trotted past me into the bathroom. The dining room table being the gateway to the loo.

He came back out and assured me that he had put his wee-willie back in his pants.

I see a phone call from the Preschool in the near future.

The Rain-Man minion keeps me on my toes, no doubt about it. But I have to admit even in my darkest moments, he manages to bring a smile to my face.

Especially when he’s sleeping.

Sleeping Minion

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Categories: Life | Tags: , , , , , , | 13 Comments

2011. So far, not so good.

Some days I sit in this hospital room and just space out. I can sit here for three, four, five hours or more and not even realize that much time has passed. You would think with all this time on my hands, I would be well versed in the going’s on of the world, I would have a back log of articles to post, all my photo’s would be organized and I would be caught up on all my correspondence from friends and family.

Yeah, right.

I have cards in my bag that I keep meaning to write and mail out. I have a book I carry around, just in case I have time to read. Really? I have plenty of time to read. But why I haven’t even begun to read it, is beyond me. I still haven’t used my iTunes gift card I received for Christmas – I know what I want – I just haven’t gotten around to downloading it.

I have Netflix at my fingertips and I haven’t watched anything in months. I have email and Facebook and Twitter and friends who I should be chatting with, yet I don’t or at least not as often as I want to. And I do want to, I just can’t seem to find the time to do it. Any of it. Hours of free time on my hands and I catch myself staring off into space, having lost all track of time.

Like right here – I stopped typing an hour ago. I’ve been lost in thought and couldn’t even begin to tell you what I was thinking about. I’ve been sitting here since 7am. It is now 3pm. That’s a full 8 hour work shift! Sure we had rounds and I’ve helped change  a diaper or 2, but unlike yesterday, it’s been a quiet day.

Yeah, yesterday was not a quiet day. Capt Snuggle’s got to travel around the hospital a bit yesterday. He received a full body CT scan (again), his weekly echo cardiogram, an EKG, they placed a new PICC in his arm and removed the infected one from his leg and we ended the day with yet another bronch.

CT scan shows worsening of issues within his lungs, new issues with his pancreas, inflamed lymph nodes in his liver, his intestines look the same, no better, no worse, and now his kidney’s are enlarged. The bronch confirms that there are issues with his lungs. Although visually, his lungs, while still inflamed, look better than before. They were quite bloody a few weeks ago.

Okay, maybe I have a few reasons to space out and lose track of time, but it’s still frustrating! And you know what I’m going to say next. Wait for it…..

On top of everything else, there’s more, there’s always something else going on.

His adenovirus is back.

With a vengeance.

The amount of adenovirus in his system now, is higher than it’s been the entire time we’ve been here. It’s frustrating and devastating – the adeno caused the GVHD to flair in the first place, if they can’t get it back under control, the GVHD could flair up again. And honestly, I don’t know if he can withstand another flair up.

He’s been acting sick for a few days now and this is probably why. He has adeno, he has VRE (that’s why they replaced the PICC) and he has the fat-lovin fungus. He’s been dumped with 9 kinds of immunosuppression’s  and I’m afraid that if he gets hit with anything else, he’s going to spiral downwards, fast.

Sometimes I think I might be too greedy. I mean, his skin looks amazing and for that I am immensely thankful. I know his skin healing is a BIG deal, especially when you think about the fact they didn’t even expect him to survive. But in my task oriented mind – it’s done. He’s accomplished it, now on to the next big thing. I want the next issue to be resolved and I want it now. Then on to the next and the next and.. okay well, maybe I am being too greedy.

His “To Do”  list is quite a bit longer than most. And I suppose I should lead by example and get my own “To Do” in order and stop day dreaming all day.

BTW, it’s now after 6pm. Yeah, I think I need to re-evaluate my time management skills. Too much time, not enough management.

Categories: Life | Tags: , , , , , , , , , , , , | 9 Comments

Adventures in Sailor-speak

It’s quiet here. I’m alone at the RMH. I can actually hear my own thoughts clanking around my head once again. The boys have gone back home after spending almost 2 weeks here with me and my sister (in-law). I kinda, sorta miss the little rug-rats. Their loud, boisterous ramblings about trains and pizza, poop and video games and cuss words. It never ceases to amaze me the odd combination’s of thoughts that flutter through their minds and spill out of their  mouths.

On Christmas Day, Jonathan quizzed everyone about what types of pizza we liked best. He was a bit disappointed when there was only ham and mashed potatoes for dinner! Saturday night, at the RMH, after a huge meal presented by a group of local boy scouts, the RMH ordered 2 extra large pizzas for the roust-a-bouts wandering around. Let me tell you, Jonathan was in 7th heaven. Regardless of the fact that he ate supper , he proceeded to eat 2 big pieces of pizza and probably would have eaten more had I let him. That boy love, love,  loves pizza!

Chuck E Cheese and Pizza for Jonathan's 6th Birthday.

Jonathan and Zachary have both turned into quite the little potty-mouthed sailors while I’ve been incarcerated here. All it takes is one word – they’re current favorite is dumbass. All it takes is for Jonathan is whisper it in Zachary’s ear and they’re off; Jonathan giggling like a girl and Zachary whining. Of course, at the most inopportune time, Zachary will announce to all those within ear-shot that Jonathan has called him a dumbass.

Mooommmm. JonJon called me a dum-ass.

Mooommmm, Zachary called me a butt-hole.

Jacob suggested we institute a swear-jar. We would all have to put money in the jar each time we swore and the amount would depend on the severity of the swear. We all agreed Dad would be broke by the end of the first week. I told Jacob that Dad probably wouldn’t be able to feed them anymore if we made the swear jar an ongoing thing.

Other favorite swears include; sum of a bitch, dammit, poopyhead, poopybutt, butthead, but-tocks (with emphasis on the ‘tocks’) and ass. Or any other creative combination of words for body parts and bodily functions. Okay, so technically the body /bodily combination’s are not ‘swears’, just embarrassingly impolite ramblings. But then there’s Jacob.

Jacob, Jacob, Jacob *shakes my down-turned head back & forth*

Jacob likes to see how many times in one day he can get away with the  word “frickin”. I know, I know, it’s not technically a full-fledged swear – but Jacob knows it’s a substitute for the F-bomb and he is devious in it’s use.

Mooommm, JonJon called Zachary a frickin dumbass. Can you make them stop frickin swearing all the time? Zachary just called JonJon a frickin butt-hole. Mooooommmmm…

Yes, that was an actual conversation.

*sigh*

And then there are the conversations with Zachary while we work on the whole potty-training fiasco.

Zachary: “You (as he points at me with his pudgy, little pointer finger) You don’t pee in my pants.”

Me: “You’re right I don’t pee in your pants and neither should you.”

Zachary: “I promise, nooo more poopin in my pants. I go fart in the toily.”

Me: “Well, it’s okay to fart in your pants, but no more pooping in your pants.”

Really? Did those words just come out of my mouth? Yes. yes they did.

Zachary: “Okay, I can fart in my pants, but no more poopin in my pants.”

Me: “That’s right, let’s put your Thomas underwear on.”

Zachary: “Okay, I won’t pee my pants, Thomas will cry if I pee on him.”

Me: “That’s right, Thomas will be upset if you pee or poop on him.”

Zachary: “Okay, Mommy, I won’t do it noooo more, I promise.”

And then he proceeds to list all the relatives that don’t poop or pee in their pants. Daddy doesn’t….,Mommy doesn’t….., Grandma doesn’t…….., Nothing like a run-down of everyone’s bathroom habits from the 3 year old.

Zachary is actually doing just fine with the potty-training. Which is good, because he starts preschool this week, the church preschool, 2 afternoons a week.

Any bets on how long he lasts before calling one of the other kids a dumbass?

Categories: Life | Tags: , , , , , , , , , , | 2 Comments

Snakes, Trains, T-cells and Pakistan

I LOVE Trains!!!

Thursday evening we had the pleasure of going to the Cincinnati Zoo with another family staying at the RMH. Abdullah is 3, a few months older than Zachary. He and his mom and uncle came all the way from Pakistan so Abdullah could receive care at Cincinnati Children’s. Yes, the hospital is that good! I am always amazed at the distances that families travel to come to this hospital.

Anyway, the zoo was hosting the Festival of Lights, we had planned on going, and invited Abdullah and his family to come along. Abdullah and Zachary are both a little fixated with trains, so riding the train was high priority. Elephants and snakes were also on the agenda.

Jonathan is obsessed with snakes, has been for awhile. In fact, I told him when he’s 10, he can get a pet snake. That was over a year ago and the obsession lives on. Unfortunately the reptile house was super crowded and we only got to sneak a peek – but it was enough for Jonathan.

Snakes and trains, it’s a wonder what kids latch on to. Which brings us to Jacob. He announced that he would like to visit Abdullah and his family after they go home. (Which should be in a couple weeks, GO! Abdullah!)

So Jacob is planning trips around the world to Pakistan. Of course, Sinoma (Abdullah’s Mom) did welcome us to come visit. I’m sure Jacob will venture around the world someday. Most days it’s difficult for me to think about future plans when I so rarely see the outside of these hospitals walls.

Speaking of, I’m always amazed at the differences between doctors. Last week the BMT attending had a “wait and see” attitude. This week there is a “destroy amd conquer” mentality. Of course, I think the “wait and see” lead to the “destroy and conquer”. 98% of David’s T-cells were activated, which meant in all likelihood, they are donor cells, not his own. So campath was administered on Wednesday.

They’ve gone back to the infliximab and basiliximab twice weekly, along with campath as deemed necessary. The BMT attending announced this morning that we may need to re-evaluate how David is being treated. He’s been on high doses of steroids for almost 4 solid months now and he needs to come off of those.

We’ve been trying to kill off his lymphocytes, but they keep coming back. The BMT attending scrutinized his CT scan from Sunday and sees enlarged lymph nodes in the general area of his liver. She thinks this is why we can’t get the upper-hand on the GVHD, his new liver is still producing unwanted lymphocytes. There is a more potent level of drugs that will destroy eveything, not just the lymphocytes. Total eradication is now on the table.

As always, there is more. The leg PICC that became infected just days after insertion, is infected again. We don’t know yet if it’s the same bug or something different. It may need to be removed and replaced, again. It may account for why he’s suddenly running fevers, again.

*Sigh*

At least we’re making some good memories while we’re here.

I wonder where Jacob will want to travel to next.

Categories: Life | Tags: , , , , , , , , , | 5 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

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