Monday, August 31, 2009

Back to Health?

Post-surgery, we've lately posted on several family happenings. Thought I would give a Bridgette health update this round, since we haven't focused on that in a few weeks.

For those of you who are interested:

1) B's yeast infection has not gone away, but it is under better control than when we found it. Her bum is still quite raw (fluctuates, some days are better or worse than the raw-norm), and it is hard to control the yeast and the normal rash simultaneously. She has to wear a constant thick barrier to protect her skin from her acidic stool, but it creates a wet, warm, dark environment in which the yeast thrives. When we use the anti-fungal ointment, the barrier doesn't stay on. Very Catch 22.

At the moment we are trying a prescription Nystatin powder instead of ointment, and she's gone back on an oral anti-fungal. It's only been two days, so we're waiting for results.

Here we are at Wal-Mart where a young man was doing a photography fundraiser for his new venture O.C. Theory -- attempting to help NPOs/NGOs to accomplish their goals without burning out. An interesting thought.

2) Baby B now has 14 teeth. Pre-surgery she had 6, only 6 weeks ago. Some of our sleepless nights have nothing to do with her bum. But check out that awesome smile!

3) Although baby is not rolling regularly, crawling, walking, or weight-bearing, she does roll occasionally... on purpose... by herself. Her incision sites have healed quite deliciously, and although they are long red lines, they don't seem to cause her pain. She still doesn't love tummy-time, but she doesn't scream and cry like she used to do. Mostly she just whines and then rolls onto her back.

We have decided to do an official evaluation to assess her development, since she continues to exhibit a number of delays. Her primary delay is of course gross motor skills, but she also seems a bit slow in the speech category, not that she's exactly quiet.

Her fine motor skills are developing well, and she continues to show obsessive-compulsive tendencies (we like to call her "detail-oriented.") She is bright-eyed, alert, shows no obvious physical abnormalities besides Hirschsprung's, and loves the sound of the noisy, mufflerless motorcycles buzzing down our street. We're glad at least one person in the house perks up at what the rest of us consider an annoyance.

4) Baby still chokes semi-frequently. Not sure what that's all about.

5) Oh those sleepless nights! Initially, Jeff and I wanted to have two kids, back to back. With the events of B's short life, we've had to reconsider our tentative family plan. Right now, I can firmly attest how pleased I am not to have an infant on the horizon. We no longer have much of a sleeping schedule; it is sporadic at best. We do occasionally get a good night's sleep. And then again, occasionally we don't.

On Saturday night, Bridgette was in a constant state of pain and was either awake and crying or "asleep" and moaning. Her best sleep was Sunday morning between 2-6 a.m. At 9 a.m., this is how we found her in her high-chair. Those bananas made a right-cushy head rest for our dear little lamb!

6) Baby is 29" long and 22.6 lbs. That puts her at 50% height and 60% weight. This is good news! She lost a couple of pounds in the hospital, but she's gaining weight like a champ again, despite not eating as much as before. Her menu has expanded to include a few more items, although her diet is still quite restricted.

7) The lengthy changing-ritual and frequent diaper-changes makes it hard to take her anywhere for an extended period of time, but we're doing a bit better at getting out. One of our favorite outtings is to the park for some frisbee hauls with our awesome dogs. We make a great pack. They are super athletic.

8) Here is the list of remedies we've tried for her bum, in a considerable number of combinations:

Bath with chamomile tea
Bath with oatmeal
Bath with apple-cider vinegar
Air dry
Hair-dryer on cool
Pat dry
Baby powder (corn starch, very bad)
Baby powder (talc)
Night-time Desitin (our favorite)
Dr. Smith's Diaper Ointment
Baza Cream
Ostomy powder
Nystatin ointment
Nystatin powder
Nystatin liquid suspension
Diflucan suspension
Probiotics (acidophilus, L. Bifidus, etc.)
Cleanse, wet paper towels (no wipes, even the gentle ones hurt)

Our current favorite mix is oral probiotics and Diflucan suspension with the following layering technique at diaper changes:

Nystatin powder
ostomy powder

At night we alter the system slightly:

Nystatin powder

We have also been in touch with a mom who raised two Total Colon HD boys, and she suggested mixing Desitin with Karaya powder to make a gummy paste. She said it saved her, so we've ordered some, but it's currently on back-order. We'll be sure to post when we find the "perfect" solution for us!


Heidi said...

I love the high chair pic. That's awesome!

Joy said...

You know with Haley the only thing that worked for us was Difulcan (oral) and A&D's Lanolin. It is no fun to have a sore bum! for all involved.

Anonymous said...

How sweet! Poor little lamb.

I am having difficulty figuring out Bri's exact position in the tummy picture. Please explain.

Love you,

Angela said...

Don't you wish you could sleep like that during breakfast? Too cute.

Ah man, you have been through it all haven't you? I hope you figure out your rash formula before you go broke. And before Bri is TOTALLY over the sore bum. She's a trooper. And I'm with your mom what position is she in? It's like she's doing a push up?

Jacqueline Miller said...

I laughed out loud at the high chair pic - that's great! Hope you start getting more sleep soon - and that you find the perfect "recipe" for B's little blum.

kelgrandy said...

Oh my, that is quite the extensive list of items you've tried on her poor little bum. All three of you are such troopers :)

Have you ever considered having a swallow study done on Bri? It's a test that is often run on kids who choke frequently. It's supposed to be pretty non-invasive and lets you know if/how they are swallowing and also if they are asperating. We are having one done on Ben next month.

Hey, we'll be in your area this weekend. Scott's younger sister (Shannon- do you remember her?) is getting married in the Mt. Timp temple. If you get the chance, and if you are interested, drop in and see everyone (minus myself and the babies- they'll be in bed) at the reception this Friday. Let me know and I can email you the address to the reception center.

Hang in there. Sleep will come. And hopefully so will the end of the diaper rash.

Ann-Marie said...

Bri has awesome parents! The "perfect solution" is on its way! Didn't it take Thomas Edison a few tries before his breakthrough? We love you and hope you and the clan can get some good sleep soon!

Kel said...

Mom & Ang -- She's just on her tummy reaching out to play with a toy. It was so abnormal I took a photo (from above, makes it look a little skewed). Normally she rolls to tummy, grabs the toy, then rolls to back holding the toy above her to play with it.

123 checkoutourfamily said...

My Bri chokes easily too. I'm not sure why but she use to choke on my milk. During her surgery, she had a little trouble with the removal of the breathing tube. Weird.

Ya'll are AMAZING parents. I hope you know this. I'm just amazed at your patience with everything and willingness to keep trying. Bri is one lucky girl! Not to mention stinkin' cute!

Smith Family said...

Oh my goodness! What a list of treatments you've tried! When Sophie had bad diaper rash when she was little, the only thing that worked for us was Triple Paste. Good luck with your perfect solution!

Ekho said...

Wow, you guys have tried a LOT of different things. I'm definitely saving this list as a reference for after Deagan's surgery- I'm betting we'll be trying a lot of them as well. How long have you guys been doing probiotics? I've been reading a little about them and it sounds like a lot of people start HD kids on them young. I think I'll ask our surgeon about it at the next appointment. Glad to hear Bridgette's gaining weight again, sorry for the sleepless nights, though.
A couple other ointments other HD parents have been telling me about are triple paste and Sensicare- have you tried either? We use Sensicare a lot in the hospital, if you want I'll send you some- it's a super thick paste, sort of like Desitin.
Good luck! Let me know if you want to try the Sensicare.

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