Monthly Archives: January 2011

1.28.11

Lil Bit had a follow-up appointment Tuesday. Doc said things were looking good.  The hole that was being packed is now to be cleaned with peroxide and topped with Neosporin until it finishes drying and healing up from the inside.

And…

Look Ma…

…no stitches! (you can *just* see the hole at top, center of the + sign)

(the redness is from the tape, I was changing the whole works, we leave tabs of tape on her and tape the gauze tap to that so that her skin isn’t traumatized as frequently, though it isn’t like it was before, but anyway, I continue with it again now with cleaning at every diaper change..it doesn’t *really* look that red though Then you can make out the spot on the lower right of the pic..straight over from the lower portion of redness…that’s where her second wound drain was put in)

Though she still has a mudflap for a week, just to be safe.

I’m trying forward facing diapers again. So far so good (at 3), we’ll see.

She goes back in 4 weeks. Clinic has been rescheduled for ‘some time in April probably’. That’s where we meet with all her doctors in one day.

Doc is pleased with progress and healing, so, that’s really all I can say.

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Diaper Dilemma

We have an interesting diapering situation here with Lil Bit.

She wears them backwards.

You’re scratching your heads with a confused look on your faces aren’t you?

Due to her incision, we have to modify some things.  She sports what is affectionately called a ‘mud flap’.  It’s labeled ‘sterile plastic drape’. It’s a thin plastic sheet, about a foot wide and..maybe a foot and a half long. It has a sticky strip across the top.  We cut this into approximately 3″ sections and then cut to about 3″ in length as well.  The sticky portion goes juuuuust above her hiney then the plastic flips over her diaper to help keep her back/incision clean.

Y’all are familiar with newborn baby blowouts, right? Yeah, that’s what we’re shielding against.

She can’t wear the diapers forward facing (hey, come on, my faithful followers had to have known a car seat reference of some sort was coming at SOME point, geesh! :~p) because the back comes up too far and covers her incision, not allowing it to ‘breathe’ as it ought to and, puts it in a more susceptible state due to blow outs. Even with mud flap in place.

So, she wears ’em rear facing (might as well stay with that analogy and be consistent 😉 ) which puts them riding lower on her back, away from the incision and further lowering the chance of mess coming up there.

However, we’re having a bit of a problem.  It’s not easy to change her like that.  It makes the whole process take 3x as long.  Just doing things backwards is enough, but she is an extremely strong and wiggly little thing.  It only takes her 5 seconds to completely roll herself over off her belly! So we have to flip her to her belly, situate the diaper, then fold the top down to further avoid her incision and then adjust it around her hips and no-hiney.  Meanwhile she’s trying to roll over.  If she’s not trying to roll over she’s scrunching her legs back up under her belly.  She usually does that *right* when you’ve about got the diaper situated correctly for best adjustment.

I think I’ve decided the Pampers work better.  She can’t wear just any ole diaper either.  Having Spina Bifida she’s on ‘latex precaution’ as Spina Bifida patients are commonly allergic to latex.  Currently the only disposable diapers on the market deemed safe and latex free are Pampers, Huggies, Luvs and Drypers.  She’s used Pampers since being in the hospital.  I hesitate to change from that given the record of my other kids.  They’ve not done well with change.  They can all use any brand, but the switching causes problems.

However, we needed diapers and I had a coupon for Huggies, so I went with it, praying for the best.  I didn’t want to go with Luvs, which are cheaper and would have been my preference, because I remember them to be more rectangular in shape, compared to the more contoured Huggies and Pampers.  I think the contoured are better suited to Lil Bit’s situation.  And Luvs has a scent which I’m afraid might cause a reaction. I’m not ready to introduce that.  I don’t do that to my newbies. I try to keep them as clear and free as possible.

So anyway, I got the Huggies.  They’re doing fine, but I realized something…they only work rear facing.  I can’t put them on her the normal way.  I try to put the diapers on the normal way from time to time, just to see if it works and to help with the whole process. Like I said, it’s really an event to put those things on backwards. It’s so nice to do things the normal way once in a while.  But, it just doesn’t work. Seems like I can put it on normal and it be ok, but the next time, we have problems.  Weird.  But that’s what happens.

The other day I tried Huggies the right way and it wasn’t working…at. all. I could NOT get even a decent fit.  So weird.

So, now I’m thinking we’ll stick to Pampers until the incision is fully healed and she can wear diapers forward facing at which time we’ll re-evaluate the whole deal.

Whoda thunk I’d be rear facing diapering…and having to buy the pricier diapers which I never do.

Doing Well

Lil Bit went for her follow-up appointment Tuesday. Doc asks how she’s doing. “Fine” How her wound looked. “Good, improving.” Ok, see you in two weeks.

Yep, that was pretty much it.  He took at look at her incision, asked how the wound packing was going.  Said I deserved a nurse in training award or something like that. And said all looked well to him, just keep doing what we’re doing.  That next week we should be done with the wound packing.

It almost seems like overnight since he said that there has been a big change in it. At first I thought maybe I was just at a bad angle or something, that’s happened before. But, each time since, that I have gone to change it, I don’t get as much in there as I anticipated.  But things still look good and drainage is minimal, so, it must all be good.

1.10.11

Back to the grind.  Juggling a new baby after weeks in the hospital with getting kids back into school mode with a visiting mother.

We’re making it.

Light school load. Baby’s content, for the moment, though it took daddy’s help because momma was ‘done’ :-p And gramma’s been folding laundry. It’s all coming together, just slowly.

Lil Bit is doing well.  Sleeping oh so peacefully at night.

She had a busy day yesterday.  She came home from church and slept around 5 hr.  Must have been hard work being that cute for everyone all morning 😉

Everyone was happy to see her.  To see her *home* and without tubes and wires and monitors. *Home* at her church with all the people who love her most.

The greatest treat for mom?

Seeing this tiny little girl melt every. single. man in the building.  She’s a very loved and protected little princess, in her home and out.

It brought tears to my eyes to see these strong men of our church, gently lift my baby girl.  This baby girl who appeared so fragile as she lay in that hospital bed, hooked up to many machines and monitors. Who lay there with a squeaky cry after a major surgery to her spine. These men, so big, strong and masculine…would gently cradle my baby girl, look down upon her face and I could see them melt right before my eyes. And this wasn’t even their baby girl, but they have such a love for her, for us.

Love our church family. They’re the greatest people around. 🙂

A Positive

Urologist was just in.  He’s happy with her cath results and bumped her back to once a day. 🙂 He asked when we were going home, I told him we didn’t know yet due to elevated WBC.

He says it’s looking like she probably won’t need cathed at home. Tomorrows cath will go for a culture to check on things.  And she will go down to 1ml amoxicillin as I believe she is still on 2ml.

Then I asked him about the amox interfering with wbc and he gives the ok to stop that briefly if there’s a possibility it is interfering. So, I’ll talk to Dr. O about that if we’re still getting high wbc.

Still praying that white blood count comes down, but it’s good to have a little more positive news. 🙂

1.5.11

So her wound started draining again, as I said in my last post.

The remedy: remove the top stitch of her incision, thus enlarging the hole from which it’s oozing.  That will then be packed with iodine saturated gauze for 3-4 days.

That’s the latest.  So, we’re in through the weekend, again.

But at least it’s not a third surgery.

Trying to see the positive, but still feeling discouraged and weary.

How Long?

I’m getting discouraged here.
Lil Bit had her surgery at 1 wk old.  We were then in the hospital recovering for 6 days.  Only to return 2 days later to have the wound flushed and a new drain put in her back.
Here we are, another week into recovery and no end in sight.  Well, there was a glimmer, but I’m afraid that may have just been dashed.
Her wound had been doing well and yesterday dr said he’d prefer another day here, no drainage, then he’d feel better about release.  Well, her wound began weeping considerably early this morning.  Soaked through the bandage and her shirt.  Changed her at 1:30 this morning, at 6 we changed dressing again.  Though, it wasn’t nearly as bad, that *one* spot had oozed enough that it went through that dressing and onto her shirt again.
I have a feeling dr isn’t going to like that and tack on another day (minimum).
I am so ready to be home.  I have 6 other kids at home.  We have a great church family who has helped with them during this time, but that was during a break.  We all home school.  Everyone is off break and trying to get back to normal…only they have to try to do that with my 6 extra children. 😦  I’m really feeling like a burden. No one has ever said such a thing and I know our church family is VERY loving and giving and willing to help here.  I guess I just can’t help but wonder…but for how long?  For how long will they endure with me? For how long will they pick up this massive slack?

All this and yet, I am torn.  Of course I want what is best for Lil Bit, even if that means a longer stay in the hospital.  But, I am so ready to get out of here, with my baby girl.  Back home to my other kids and the chaos that I call normalcy.  Back to the everyday frustrations of housework and home schooling and 13 yr old boys who don’t know who they are from one day to the next.  To 15 pair of underwear from the 2 yr old. To the 4 yr old’s bossing and arguing with the 2 yr old. To the dramatic 7 yr old and sensitive, scatter brained 9 yr old. And the just floating along but sometimes crossing the line of trying to parent, 11 yr old.

Being home is by no means a Caribbean vaca, but it’s home.  It’s us.  It’s ours.  It’s mine!  And I want it back. 😦

1.3.2011

Yet another day in the hospital.  We knew our neurosurgeon was due back today, we were ready to hear from him.  This last surgery and week of recovery has been without him.  We trust and are comfortable with the doctor in charge when we initially came back, but then due to the holiday, we had yet another doctor in on the matter.  I wasn’t thrilled with him.  He’s just one of those kind that rub me the wrong way. Nothing blatantly ‘wrong’, just, well, he ain’t my doc!

Hubs needed to go into work today, but was waiting around for word from our doctor.  Normally, doc is around early.  Today, the resident made the usual early rounds, but doc was late to the game.  Much later than usual.  Just when we’d pretty much given up on him coming in today, he walked in with our favorite resident.

He looked at the incision and asked how she was doing.  We mentioned that the wound had recently began weeping…again. It wasn’t as before, that brought us back here.  But, it was just a spot, then output increased, so we began to worry, in that not completely obsessing overly worried way.  We started cleaning it twice a day with peroxide and keeping an eye on it.  It promptly tapered back off though, giving us hope.

My biggest concern aside from that has been the heavy antibiotics she is on.  Remember, we’re not typically into all this medical intervention stuff.  We don’t do antibiotics for every little thing.  I think only one of our children has ever been on antibiotics for any period of time.  And that was the first one as we were still learning things and deciding our path.  Now, don’t hear me wrong, I don’t believe antibiotics are evil, just the overuse of them.  And overuse is rampant today.  That scares me.  Long term effects scare me.  Long term effects of these particular antibiotics really scared me. Though recent studies weren’t ‘as’ alarming, I still just don’t like it. I am not at all comfortable with much antibiotic usage.

Praise the Lord for answered prayers! Our doc took her off them today.  He said the wound oozing is just the wound.  Nothing else is going on, nothing is wrong.  She is healthy otherwise.  She does not need these antibiotics.  And directed the resident to put in an order to stop them, now.  *huge sigh of relief*

We are still here for a while, no date of release mentioned.  But I feel better about *that* part at least.  That ‘hope’ has returned.  It was beginning to wane as the days went on, things at a stand still. Progress is good for hope.

Hope is my word for the year.  Have y’all heard/read about that?  Folks choosing a word for the year.  I’m not really sure where it comes from, but I have seen many sharing their word for the year and realized my word for 2011 is HOPE.

Given the birth of this precious baby girl and her diagnosis..our decision to go ahead with a prompt surgery…out of HOPE to make things better for her…I think HOPE is what this year is going to be about.

Lil Bit’s surgery was a decision made in HOPE.

Our HOPE is in the Lord. Though, to say hope as opposed to faith sounds rather fluffy here, lacking in true sentiment.

Our HOPE is that our Lil Bit will conquer this.

And at this very moment, my HOPE is that our family will be HOME, together, soon, on a path to our new normal.

Our HOPE is in the future impact our experience and our daughter’s life might have on others.

Our HOPE is for healing.

We have God, therefore we have HOPE that beats all else.

It is good.