Wednesday, June 18, 2008

Fight to the Death!

The last few days have been very stressful. One of the main things determining when she gets to go home is if she is able to take her medicine at home. It is a huge, dramatic fight everytime she has to take her meds. I don't just mean a little 'No' saying and pushing away with her hands. I mean 3 or more people coaxing her, with one holding her, one holding down body parts and one putting the medicine in her mouth one tiny squirt at a time.

Plus, this kid is smart. She has found pockets inside her mouth to hide medicine not previously discovered by man. It will appear as if she has swallowed, then all of a sudden there is a stream of sticky liquid dribbling out of the side of her mouth. She has also become a master saliva-maker, which makes it more difficult as well. She just sees something closely resembling medicine coming towards her and she starts producing the stuff like crazy.

This is making things very hard, because not only do I hate seeing her so upset and get frustrated that she won't just swallow the dang stuff like she does at home, but since she spits out half her medicine (or more), she keeps going through withdrawls from not getting these heavy narcotics that the doctors are trying to wean her off of.

Just put in a feeding tube, you say? Ha Ha Ha. No feeding tube can match the likes of Katelynn Robertson. She will remove it in one, fowl swoop. An IV, perhaps? Ha Ha Ha. Another tube that can easily be removed by our illustrious Super Toddler.

Another thing...because she is eating 'real' food now, and wasn't getting food through her feeding tube the whole time she was in the ICU, she has lost a ton of weight. Now, it may be only a few pounds, but when you are as small as she is that is a ton of weight. She is very weak, and can only sit up for a few minutes, and stand for a couple seconds with support. I thought things were hard when she was in the ICU, but I feel like things are even harder now that she is 'on the mend'.

I guess the Lord thinks we have a lot of character, because this year has been filled with so many challenges, and I'm sure will be filled with many more. But, it has been neat to see all the support and love of friends and family as we go through this trial. I never realized how many people actually, truly care. Thank you all for your love. I hope that I can return the favor someday! Well, not that I want you to have trials, but I want to be able to show you the love you have shown our family. You know what I mean! ;)

Hopefully, soon I will be posting a Going Home post. Till then, keep your fingers crossed and the prayers coming. Have a wonderful day!


  1. Wow, I'm so sorry to hear that your little girl has been so ill. I'll be praying for her and for you.

    Just a thought. I know that what you are dealing with is more complex than just giving tylenol to my son, but what we do with him is to mix it into chocolate milk. He drinks it right down. Maybe you could find some way to disguise it.

    I'll be praying for her. And for you and for the doctors.

  2. More prayers for Katelynn as she is on the mend. At least you know she still has her fighting spirit :). I don't know if this will help, but when we couldn't get the boys to take their steroids (for croup) Lowell would put it in the back of their mouths and then quickly sit them up. Something about it made them swallow every time. Hang in there, still thinking about you and praying constantly!

  3. We're still thinking of you always. I hope things keep improving quickly and fully. Good luck with your little fighter!

  4. I'm glad things are improving to the point that you're worrying about oral meds. Not that it's any less frustrating, but it is a step in the right direction! I totally hear you about how easy it is for these determined fighters to get their tubes and wires pulled off and out in a flash. I remember spending 2 hours with x-ray techs and some nurse trying to get a feeding tube in past the stomach into the intestines (nj-tube)only to have Gabe pull it out in less than 10 minutes. That was when they decided to schedule the g-tube surgery. Anyway, I hope things continue to improve and we'll keep praying for everyone involved! We love you all! Tiffiny, Sam & Gabe, Maggie, & Brian

  5. I'm glad things are getting better. I was grateful to the Nielson's for letting us know, so we could fast for her. We will keep you in our prayers.


Comments make me smile. :D