Saturday, December 6, 2008

My Overwhelming Day...read at your own risk.

So, another busy week has flown by. I knew I would be busy with 3 kids, but geez.

Monday was a pretty miserable day for Harlie. Which made it pretty miserable for me, too. I HATE seeing her miserable. It hurts me. What was the problem you ask?

WARNING: The following may contain graphic language and subject matter. I apologize now if I offend you. But, such is life with toddlers…

The day before Thanksgiving we started giving Harlie some baby food mixed in with her formula to begin making the transition to a blenderized diet (a blended concoction of baby foods and other ingredients to make her diet more typical for her age and development). The recipe was 2 small jars of baby food bananas plus 4 cans of her formula. Mix all together and divide into her 5 feedings per day. Great, right?

Well, it wasn’t great. After a few days, she went a day without pooping. VERY unusual for her. Clearly, her body was adjusting to the bananas. Fine, I thought. I’ll give it another day or so. I mean, how much damage could a couple jars of bananas do anyway?

Um, A LOT! By Monday morning, she was MISERABLE. Couldn’t play or do anything. My friend, Jennifer (Harlie’s PICU nurse from MCV) was working with us that morning. She agreed that Harlie was definitely in some pain. Jennifer went in with lubed gloves to check out the situation (thank God for nurses!) and she found that Harlie’s bowel was impacted with poop.

You might remember that Harlie was born with an anoperineal fistula. Basically, her anus wasn’t located where it was supposed to be. The muscles were in the right place, but the opening was not in the middle of those muscles. So, just a few days after she turned one, she had a surgery to help repair that. I say “help” because we aren’t sure if that one surgery did the trick or not. The surgeon said he might need to do another one later, but we’ll have to see how she does. He also said that it will take longer than normal to potty train her (maybe by age 4) because it will take a while for her brain and the muscles around the opening to coordinate and work together. One thing he said for sure is that she should NOT become constipated. She lacks the ability to push it out and it could prove to be dangerous for her. He said at some point – depending on her diet – she will need to take supplements to help her stay regular.

Sure, I heard that. But I just didn’t realize how truly important it was.

Until now.

So, back to Monday…

Jennifer had to leave around noon. And I have to pick Murphy up from school at 12:30. Harlie had physical therapy at 11:30, speech therapy at 12:30 AND we had our annual meeting with the Services Coordinator of the Early Intervention Program (through Henrico County) at noon. So, I had to go and get Murphy early, since I wouldn’t be able to leave at 12:30. Which meant he would be home during all this chaos, when I needed to be focused on the meeting. The meeting was to see what goals she has met and what new goals we need to set for her for the coming year. The goals have to be VERY specific so it can be determined if they were met or not. For example, brushing her teeth. Do we want her to be able to brush her teeth for a minute, or just be better at it or both? My point here is that I really needed to be able to focus on this. Not an easy task with 3 kids – especially when all 3 need you at the exact same time. Which was the case, of course.

Murphy wanted to make his own peanut butter and jelly sandwich (has disaster written all over it) and I was trying to help Harlie poop, and Cooper was crying. Nice. I thought that if I sat Harlie on the potty it might help her push it out. Keep in mind that I’ve never seen her push – with a liquid diet, pushing isn’t required. So, in order to be a part of the meeting at my kitchen table, I brought the potty out there and sat Harlie on it. What a nice scenario, huh? Oh, and at one point I heard Murphy ask, “Mommy, is this sugar”? No, it wasn’t – it was Thick-It, Harlie’s food thickener powder, which is white and does look like sugar. Thank goodness he asked me before he put a scoop in his mouth. It was truly chaotic and splitting myself into 4 different directions just doesn’t work.

After the meeting and her therapies were over I took a deep breath and tried to regain some order in my house. I think it was 3pm before I realized that the only thing I had eaten all day was a banana – at 6am.

Back to Harlie. After no success all day, I started making some phone calls. Again, tried some other things, no success. We had a very serious situation here and I was getting really worried. Nothing could be given through her g-tube that would help – it was too far down and right near the opening, that nothing given “orally” would do any good. Somehow we had to get it out of there. So, I put on some gloves, lubed up and tried to see what I could do. Murphy asked me what I was doing and I told him that I was trying to help Harlie get the poop out. (Lovely toddler-speak.) He thought for a second and then said, “Well, Mommy, you should tie a string around it and pull it out”. If only…

At one point during the day Harlie was crying those big silent tears and signed “hurt” to me. I just taught her that sign about a week ago and this was the first time she used it completely on her own. Oh, just rip my heart out, will ya?

So, Jennifer suggested we try a milk of molasses enema. It’s something they do in the PICU. She described it to me and I cringed. So, of course, I begged her to come and do it for me. Which, thankfully, she did. She is such a good person and I am lucky to have met her.

At this point, Harlie was running from all diaper changes and the wipes. Poor thing. So we set up for the procedure and we got down to business. It was awful. Holding her down was truly traumatizing. But, thankfully, Jennifer was successful. After it was all over, Harlie was spent. I gave her the quickest bath ever and got her to bed. She was asleep in seconds. And now, she is fine. She’s now on Miralax daily, and we stopped the bananas and replaced it with applesauce. Things are definitely better. But I can’t believe I let that happen. NEVER again! Luckily, I have since learned that we aren’t alone and that this isn’t that unusual. Although it certainly felt like it at the time. So, thanks Donna for making me feel better!

And I suppose we’ll have to take this blenderized diet a little slower. But, can you get slower than 4 ounces of baby food per day? Hopefully it was the bananas. Maybe if we avoid bananas, we can make some progress. Hopefully she’ll be eating a blenderized diet by the time she’s 5.

Take care,
Christy

4 comments:

Shylent said...

Wow, you poor thing, after all that and you still have the ability to recall it enough to blog about it ! I applaud thee ... :o)

Poor Miss Harlie ! I feel so bad for her, the "hurt" sign , that made me tear up , how heartbreaking. One good thing though is she was able to communicate with you and let you know she was in pain.

Due to all the medicines Sebastian was on when he first came home he had a serious poo problem himself, so I can sympathize with you on that stresser. I am glad to know she is feeling better now though !

Hopefully the stress level drops a few dozen notches for you soon !!

Elaine said...

It breaks my heart that we were out of town. If we had left just one day earlier, it might have made your day a little less stressful. But sounds like you handled it very well. Knowing when to call in the Marines is a good thing!! Thank you, Jennifer, for helping get Harlie through this.

Thinking of Harlie using the "hurt" sign makes me hurt every time I think of it. For someone who can't talk, she really is a good communicator. If she doesn't know a sign, she just makes up something quite understandable!!

Love,
Nana

Susan said...

Oh Christy. That is not a fun day. I'm glad you posted about it because after your last post I was getting a little worried about what might have happened.

Poor Harlie. That sounds miserable. Ainsley had a similar problem this week (although not nearly as bad). Our nurse had to help get things going and Ainsley's just on formula right now.

Our ped recommends bananas when the kids have diarrhea so perhaps it's that. I only ever did one container of bananas per day in Ainsley's purees. I think apples is an okay choice but may have the opposite effect.

I would try adding just one container of each new food every few days to check for reactions. But things will get more regular when you're using a mix of purees. Good luck! And hugs!

Donna said...

I'm so glad Harlie's doing better and there were no repeats...give her big hugs from us!
PS - Did Harlie ever get the e-mail Alex sent her?!? :)