Saturday, February 06, 2010

Serious, and Slight

Kendi, the definition for tanacity!
Hair, before

Hair, now

It was three weeks ago tonight that Eric and I were sitting alone in the hospital room (everybody had gone home by now). We had to have a talk about his wishes, should he die. We talked about the kids--what his message would be to each one of them. We talked about burial vs. cremation. We talked about songs to be played at his funeral. We weren't assuming the worse (at all!) but we had to prepare for it.

Three weeks later Eric has a new lease on life! He hardly has any pain now, and his energy level is perfect for a 38 year old man. Just to give you an idea, he always feels bad if he doesn't work out. So even when he was on dialysis he would hop on the stationary bike to go as long as he could. He would huff and puff and as he stopped for the night he would ask me how long he was on. My answer was almost always 5-10 minutes. Yesterday he got clearance to start exercising again. He got on the bike today and started chugging along. Eventually he came to a stop and said, "Well, that wasn't that long, but it's a start." He had got 30 minutes! Ha! That 30 minutes felt easier to him than the 5-10 minutes used to feel. I am just so happy for him (and for our family). Next week is his last week off of work.
PRAISE! His creatinine level was back down to 1.3 today. Much better than 1.6 but not quite down to the 1.2 we were at earlier in the week. His ultrasound was perfect. So all things are looking quite good in that arena.

Today wasn't a good day for Kendi's medicine. I'm honestly weighing the pros vs. the cons for a g-tube at this point. I know it's too early, but our doc emphasized how just one missed or half dose could start her on the path to resisting the medications. She's had two 1/2 doses now. To me th G-tube is absolutely no big deal. Samren never once complained about it hurting. It never once got infected. It saved us major stress and Samren major feeding trauma. The only trauma that ever came from Samren having a g-tube was when he had it taken out! That was his tube! And it was part of him, as far as he was concerned. He cried and cried because he didn't want them to take it out. =-) I know I'm probably on a way different wave length than most parents would be about this. But I cannot STAND to see Kendi going through what she is going through. She doesn't want to eat regular food because she thinks it might all be tainted with medicine! She starts gagging as soon as she sees the spoon or syringe. Could this affect her attachment? I believe it could, in the long run. Just lots of stuff going back and forth in my mind, even though I don't have any idea what our PID's position is on g-tubes for meds.

So this morning we did apple sauce, pharmacy apple flavoring, and the crushed pills. I got it down to one bite. But she absolutely would not open up to take it. In the end Eric and I had to lay her down on the counter, plug her nose (so she would have to breath through her mouth), then pry her jaws apart to shove the spoon of applesauce mixture into her mouth. I swear, she's going to have nightmares of big fat woman coming at her with spoons! Somehow she was able to keep that dose down though. Whew. This evening we weren't going to mess with something she had kept down 2 times in a row, so it was the applesauce mixture again. Again she wouldn't cooperate at all so again we had to manhandle her to get it down. Expect as soon as it touched her mouth she threw up all over the place. Big throw up. Goodbye dinner.

We knew she didn't get any of the evening dose down before she threw up, so I crushed more pills. Eric had the idea to put half of a crystal lite powder packet, mixed with the crushed pills and 10 mls water. I tasted it. By golly! It hid the bitter flavor!!! Well, at least until a few seconds after swallowing. Hear ye, hear ye, sour doth counteract bitter! I tried to take it slow. I tried to have her dip her finger in it to see that it tasted good. Not happening. In the end we once again had to lay her down and try to pry her mouth open. She bit me--hard! I can't blame her. Between the spitting and squirting and resistance we figure about half of it got down (not good--worse than if none of it had gone down). However, there is reason for hope. At the very end of the 2nd syringe of "juice" she seemed to have stopped fighting, realizing it didn't taste bad, and she sucked it down herself! Either that, or she lost her will to fight. I hope it is the first.

Our doctor told us that if we had any more missed or 1/2 doses this weekend to stop everything until Monday when we could come up with another plan. But she drank it at the very end. Maybe we're on to something with the crystal lite mixture? Maybe she will be able to take it tomorrow morning? We are going to go ahead and try. I made another batch of the concentrated crystal lite tonight, for her to play with and experience without the meds. We were all taking sips. She was feeding it to us. She even put the syringe into her own mouth. She still would not squirt any down on her own (or allow me to). Still, I'm hopeful for a better outcome tomorrow morning.

Onto something more fun! I can say now, after using Uncle Funky's Daughter for a week now, I LOVE this stuff! For Kendi, it works much better than Carol's Daughter or CURLS. It gives her tight little ringlets instead of straight up frizz. And the ringlets STAY. On days when we aren't going anywhere I can just leave her hair as is and the ringlets still stay nice and defined. And guess what? I used the stuff on MY hair the other day (I have wavy hair that can be diffused to look rather curly) and it worked on MY hair too! So, all of you who loved the name but weren't sure about the product, I say go for it! The only thing is I wish it smelled good. There really is no lingering smell once it's soaked in.

Stress. People oftentimes assume my life is stressful. And usually I would say that my life isn't stressful. It's just busy. There's a difference. This week has been stressful though. You know what made it that way? Not Eric's appointments or homeschool or work or anything we had to DO. What made it stressful is seeing my baby in pain, and distrusting me when I put good food in front of her to eat. That is stressful. I even had an anxiety attack last night. I have a rash on my elbow and all over my leg. I know from previous experiences these are stress reactions in my body. Of all the BIG things people see in our lives and think "Oh! That must be so hard!" No. None of those big things is hard. Just getting my baby to take her medicine is hard. That's the hardest thing in my life right now. Because I cannot stand to see her suffering.

PLEASE plray for Kendi. Pray for a breakthrough with this, and that there will be no negative consequences to these 1/2 doses she's gotten. Pray for no long term trama. At this point she seems to be forgiving us for holding her down and shoving medicine down her throat. She ran in tonight, just wearing a diaper (clothes were taken off after the vomit) and sat on my lap. She said, "Know what mama?" What Kendi? "I wuv oo." Break my heart why don't ya kid! Break my heart! I'm so glad that she knows I love her, and that she loves me to. I don't want anything to ever jeopardize that love.

6 comments:

Amy 12:13 AM  

Oh sister, I am SO sorry for all of this pain with medication. I can totally see why you are not only worried for her health, but for her attachment. It has to be incredibly stressful. Praying for you and for her. Praying that the right solution comes to you.

I love you and I am so sorry to hear how difficult this is. I am really glad to get an Eric update too- that news is just wonderful.

I think this may be one of those periods of life you look back on sit in amazement. The last few months have been so filled with huge life changes- good ones yes, but even the good ones are so big that they carry a weight to them. I hope you are taking care of yourself in all of this. Love you!

Fabu

Heather A. 10:20 AM  

So, so sorry you're going through so much with Kendi right now. I say go with your gut on the feeding tube. I think you do have reason to be concerned with the attachment, even though she seems to be attaching in other ways. One of the biggest mistakes that we made with Sophia was getting her ears pierced right after she got home. When they got infected, we had to clean them each day. She would literally run screaming to the bathroom and lock herself in when we got the cotton balls. I've asked her a while back if she remembers and she has very clear, very strong, very unpleasant memories of us cleaing her ears when she first came home. And there is no doubt in my mommy heart that it affected her attachment to us. Certainly every child is different, but something daily, like yucky medication, isn't something you can discount. You're the mommy and you know Kendi better than anyone. Follow your mommy heart!Praying for you and Kendi.

Story of our Life 10:24 AM  

Honey, I'm sooo sorry. I wish there was something I could say or suggest that would help.

From time to time we go threw this with Nia. It is so frustrating. One long seizure could be the last straw for her. Those meds are crucial for survival. yet these lil ones don't understand it. Why should they?

((((HUGS)))) it is a tough choice no matter what it might be. You will follow your heart and do what is best for your family!!

Love, gala

whenpigsfly 5:37 PM  

Praising God with you over Eric's progres Anita! This is such a wonderful report to read!
Kendi's hair is looking wonderful too...love the name "Uncle Funky's" , that 's great! LOL!
Being a mommy is a really hard job sometimes isn't it? Helping our children to understand that they can trust us even when we are doing things which seem most unpleasant and unwelcome, and actually for their BEST ! I will be praying for you for wisdom as you lovingly pursue successful appraoches to treating sweet Kendi!
Love
Linda
who is btw STILL praying for a family for Samson!!!!!

whenpigsfly 5:37 PM  

Praising God with you over Eric's progres Anita! This is such a wonderful report to read!
Kendi's hair is looking wonderful too...love the name "Uncle Funky's" , that 's great! LOL!
Being a mommy is a really hard job sometimes isn't it? Helping our children to understand that they can trust us even when we are doing things which seem most unpleasant and unwelcome, and actually for their BEST ! I will be praying for you for wisdom as you lovingly pursue successful appraoches to treating sweet Kendi!
Love
Linda
who is btw STILL praying for a family for Samson!!!!!

Kait 11:44 PM  

After seeing how awesome that stuff did for Kendi, I bought some for my Natalie. Hopefully it'll tame her crazy frizz!