Saturday, December 5, 2009


Madison is doing very well with her feeds. We are playing it safe (and slow) and only having her eat/drink from a bottle. Tomorrow she can eat real food. It is so fun to see her eat. Mark and I have the biggest smiles. She has never eaten this good. YEAH! I would shout for joy, but other babies are sleeping.

Anyway, I have just been informed that because Madison is eating so well, they are going to begin to switch her IV medications to taking them orally. This transition will begin tomorrow and they will take it slowly. (definitely not all at once..)

Question to all Heart Mom's..
1. What is this going to be like to give Maddie +12 medications a day? Shauntelle, I took notes on what you suggested to me yesterday. Great ideas!!

2. How do you make this somewhat of a positive experience?

3. Are there medications that they like (taste ok) and some that they hate?

4. Any tricks for having them take the meds that taste yucky, or make them feel yucky?

5. I know these meds have horrible side affects. Any suggestions in dealing with those?

I can give Maddie her meds. She usually takes them without any problems. She was on 4 medications prior to transplant. I'm just a little nervous to give her 8 yucky tasting meds. It's definitely a different ball game now.

Thanks for your help. I'll holler as I have more questions.


cici said...

I had to give my son one yucky tasting medicine and I crunched it up and sprinkled it on his ice cream.
Sometime pill form can be mashed and put into little bananna shakes or drinks. The blender is a miracle worker. I'm not sure how old your little Madison is, but whatever she is eating, it can be disguised in it,even if it means adding extra sweetness in some form.
Best of luck

The Blanchard Family said...

I just want to say YEAH! for you and your family on Miss Madison's new heart! I went to high school with Elisa Cook and also delivered twins (a boy and a girl) on Sept 9th at 27 wks. Aden is home now with us after 2 months in the NICU there, but our sweet Ava passed away shortly after she was born after being diagnosed with Hypoplastic Left Heart Syndrome. When I saw Elisa's post about you I just had to read your blog!! I felt an instant connection because of the twinners and the heart defect. I am praying for your sweet Madison and also for you. I know that as a mother this kind of thing just IS NOT EASY. Rely on the Lord and he will comfort you and give strength to you when you need it most. Best wishes on a speedy recovery!

The Simmons Family said...

It's great to hear that she is recovering well and that she's feeling up to eating.

As far as the medications... I'd love to hear those answers too! :) Owen is currently on nine, icky medications but he has a Gtube. I don't know how I'll ever wean them to oral.


Kathy said...

Mark and Michelle,
I am so happy for you and for Madison. What an amazing miracle that continues each day. Thanks for the updates and we continue to pray for your sweet little lady.

Family Scads said...

I started this comment a while ago and realized how long it was becoming (there is just too much info on meds!), so I will just e-mail you my two cents!

So glad that Maddie is doing so well! I can't believe that she is already eating! What a miracle!


Ryan and Hilary said...

Shout! Shout from the rooftops!! After Daxton got his new heart I felt like skipping everywhere. It was such an amazing feeling! I am so happy she is doing so good. Isn't it amazing how fast they progress after transplant.
Meds, I just remember how daunting it was. Shauntelle was our helper also on the meds department. We got a labeler and labeled all of the meds with the name, dose and time they were given. Then put them in a ziploc baggy for each time. So 8am bag had prograf, imuran, etc. 10 am bag had magnesium, etc. We would do the meds the night before for the next day so it was less stressful at med time. We could just grab a bag and go.
We have always given Daxton his meds by mouth even though he has a g-tube. He has never had a hard time taking them except when he is sick and then the hardest one is Magnesium he acts like it burns. Then we just give it slowly. They have started to offer flavors at the pharmacy at primarys but the pharmacist said that they still don't taste that great. But if she has a hard time taking them it would be worth a try.
(Sorry this is so long) It is hard not to feel overwhelmed but I always think that after living throught the "wait" we can do anything! You guys will do great. She now has a beautiful whole heart and can conquer the world. So so happy for you. Hope this helps.

Kaidence's Mommy said...

Well, We also have a g-ube and Kaidence went home not being allowed to eat for fear that she could not protect her airway after being intubated for so mny months before. Now the only med that was really aweful was cyclosporin. It was HORRIBLE! I accidently tasted it myself and was shocked that Kaidence had to take it. It was also one that absorbed into the plastic so she did have to have that by mouth. Good news, that is the medication I was telling you about that they switched the kiddos off of. Miss K has a g-tube but has suddenly started eating well. I have been thinkng about slowly starting to give a couple meds here and there by mouth.
As far as the side effects, this is just on of those things that seems to work itself out. Kaidence has not complained. I guess that she was so little when transplanted that this is all she has ever known. I consider this a blesing! However, when her prograf level gets high she starts to vomitt and now that she is older points to her head saying it hurts. That is only when the levels are crazy high though. You will be amazed at how well Madison will do as well with appoinments and getting her finge poked. Kaidence now just hands her finger over, no tears at all. Every parent does things differenty, but I try to be very upfront with K when we have to go to the hospital. I have done it from the begining and am seeing it pay off now. I think that she know tht she can trust me, even at the hospital. I felt it was important for her to feel that she trusted me and didn't just suprise her with "the hospital". I tell her if she will have to get an 'owie' and she seems to handle it better. Just afer transplant we traveled to the hospital 2 times a week and everytime we would get in the car, she would start to cry and throw up. She seemed to know where she was going, but now she no longer has that anxiety every time she gets in the car.Kaidence in fact, seems ok and happy at the hospital (unless she see's IV team). Madison will do great, I have no doubt. You will get a great system down that works for you. You know that any of us are here to hel along the way. Just let us know what we can do.

Anonymous said...

Yucky medicines go down really well in ice cream. The cold hides the taste and the flavor covers up the yuck. We use this with our residents who are adults and know the difference! Worth a try. So glad little Madison is doing so well. We'll keep reading the blog and praying for her.

Aunt Shelly and Uncle Don