Wednesday, February 03, 2010

Do over?

Today was my 34th birthday. Honestly, I could care less. I didn't remember it was my birthday first thing this morning, but my sweet children woke me up with handmade gifts and cards and birthday wishes. They are sort of awesome that way. =-)

Then the day took a decidedly downward turn because we had to be by the hospital by 7:15 for Eric's labs. It's just that we're sort of tired from driving for 10 hours yesterday. We're sort of SICK of having all of us confined in a small space--be it a car or a waiting room. After the lab we headed to the nephrologist for Eric's appointment. After that we headed to yet another doctor (the surgeon this time) to get Eric's staples out. By the time his staples were out me and the 4 kids had been in confined spaces with nothing to do for 4 hours. Basically, we were driving each other C.R.A.Z.Y!!!

By now it's noon and I think this should be a good time to stop by the social security office. Really? In what planet is it a good idea to go to the SSA with 5 other people when it is standing room only AFTER you've already spent 4 too many hours that day in confined spaces? After a few minutes I called that one quits. The mommy will go back BY MYSELF for that one. Urgh.

Back home. Back to my nice comfy birthday. The crew really planned a nice day for me. They excused me for a nice long luxurious nap and reading time--however long I wanted. While I slept they had big plans to fold the laundry, do the dishes, and make a special desert for me. How sweet is that?

It wasn't meant to be though. I was too tired to read, but couldn't fall asleep. Believe me, I tried! I snuggled under my blankets demanding to my brain that it just shut up already and let me sleep! But no. So after an hour I was back up. It's the thought that counts, right?

Before long we got a phone call from Arkansas telling us about Kendi's elevated liver enzymes. Eric and I started googling about what all these results could mean. The internet is your best and worst friend when it comes to medical research. Reading things like "lymphoma," "leukemia," "Hep B or C," and "organ damage" just isn't good. Maybe it's just fatigue from all the doctor's appointments. Who knows. But Eric did NOT handle that news well. He had a mini-meltdown. Mostly, I think he's just scared for his baby. He said he feels discouraged because it was like we were FINALLY on the upswing. Kendi starting meds; him getting his transplant. It was like we were starting the rest of our lives. He had his little melt down because he just doesn't WANT us to have to absorb another disease into the family. He doesn't WANT his baby to have to survive another disease. I don't react the same way to this stuff. I know we'll make it through whatever we have to do to fight whatever might be attacking. But I hurt for my baby. It just breaks my heart to even consider those scary words in quotes above.

We pulled ourselves away from internet searches and headed to Target to pick up Kendi's meds and whatever "good stuff" we could think of to mix the crushed pills with. The winners were sprite, chocolate pudding, and chocolate and vanilla ice cream.

Home to a huge splurge for dinner (calorie-wise). Biscuits and bacon gravy. YUM. Followed by warm apple crisp and vanilla ice cream for desert. Double yum. The dinner part of the day was a nice time with the fam. Things were looking up.

Then 7:30 rolls around and alarms start going off. Eric and Kendi need to take their meds. It was Kendi's first dose. We went with the chocolate pudding and a sprite chaser. In the crushed pills went. I mixed them with about 1/4 of the pudding cup. I gave her a bit of the unmixed pudding first. Yummy, she says. Then a bit with the meds mixed in. You shoud have seen her face! Poor baby. She got it down and then chased it with a big drink of sprite. Second bite? Nope. No thanks mom. But I convinced her for bites 2 and 3. By #4 she was gagging. I just kept telling her if she took a bite she could have more sprite. She suffered through it and got it all down. The sprite saved her. I just stuck my tongue on the medicine-pudding to see what it tasted like. GROSS. I mean, it was so bitter. I don't know how she kept down whole bites of the stuff. I just hate that she has to do this. It will be better once she can swallow pills. Not sure what the plan will be for tomorrow morning, but the chocolate pudding didn't come close to hiding the taste. Giving the medicine? Another downer to the day.

Then the final straw. Bright poops his pants AGAIN. I've typed on the blog before about his poop issues. They are once every 7-10 days and they are humongous. I think he holds it in because he feels out of control when it comes out. I started giving him Miralax a few days ago, in hopes that if he has to go more often he will get used to it and have less anxiety. I just KNEW he had to "go" during dinner. I kept asking him. Nope. He said he didn't have to go. Eventually he snuck away into the hallway and pooped FOUR FEET AWAY from the toilet! URGH! I know this sounds like a minor deal, but it's a real frustration for us. It's a big cleanup every time he does it because we make him take responsibility for the clean up. He has to empty his pants. He has to scrub his underwear. He has to take a shower to scrub himself off. Except that all of that responsibility we give him really makes more work for us! So 30 minute later Bright is cleaned up and goes to bed.

I check my emails, and am so disheartened that I didn't get a single email inquiry about Sampson today. I thought for sure families would be lining up. One person called for a friend who might be interested in him. I hope that works out. I just hurt for this little guy. And in general I hurt for all the kids waiting because of HIV. I always try to at least get a mention in for HIV adoption whenever a prospective adoptive family calls. Usually families are gracious. The other day someone told me, "That's nice that you 'saved' your daughter, but we would actually be trying to avoid 'something like THAT.'" It's hard not to feel personally defensive with statements like that, even though I "get" that some families aren't meant to adopt HIV+ children.

So over all, even though my sweet family did very kind things for me and tried to make this a great day, I would like a "do over" for birthday #34. Or maybe just a SKIP instead. This was mostly a discouraging day that I would rather forget.

If you're still reading, I'm surprised! Here's to a better tomorrow...

18 comments:

Heather A. 10:30 PM  

So sorry that you had a less than perfect birthday. Maybe you should try to have the "happy birthday" tomorrow instead?

I cracked up when I read your birthday dinner! Mary's b-day is tomorrow and her request? Biscuits and gravy! But she wants chocolate cake instead of apple crisp.

Laurel 11:16 PM  

Yes ... praying that tomorrow is a better day!

Becky 11:25 PM  

Crap. Literally. You read my "pee pee" post. I'm right there with ya sister. Happy Birthday anyway, even if you do need a re-do. I knew the liquid Kaletra was bad. I tasted it. I hadn't tasted the crushed pill, sorry it was so foul. I'll see if I can dig up any other good advice from some of the other peds RNs at work. I can tell you that teaching her to swallow pills will make a huge difference. I did have three-year-olds in my caseload who did it. You can start with tic tacs for practice. If I remember correctly Combivir is pretty small, Kaletra is relatively large though, right?
--Becky

Jess 11:40 PM  

praying for your little Kendi.

A. Gillispie 11:43 PM  

Thanks all. =-)

Becky, we're definitely going to be starting pill swallow practice. I don't think she's there yet--such an active gag reflex--but we will try. She's taking 1 1/3 of one med and 1/3 of another. I'm hoping I can get her to just swallow 1/3 pill at a time (5 times). Both of the pills seemed about the size of an 800mg ibuprofen to me. Not horse pills, but not small for a 2 year old!

Kristin Jag 12:36 AM  

happy bday, no matter how crazy it was! I hope that tomorrow is a much better day and you have good news in ALL the aspects of the post!

We Are.... 8:52 AM  

Anita,

I'm so sorry you had such an icky day.

I thought I would share with you what we have been dealing with regarding Nicole & her bm's. You call Bright's humungous, we call Nicole's toliet cloggers (many a toliet has she clogged). Plus, we are still trying to potty train her and she's 11 and non-verbal. Anyway, she started seeing a GI doctor last year and found that while we had had her on Miralax for a year, she was completely full of it. What we have her on now is Miralax 1x daily to soften, 2 tsp. of mineral oil in am to help things slide, and every other day we give her ex-lax. We give her the ex-lax because she has had constipation issues her whole life and we're not sure she really knows when to push to get it out. I hope this helps a little.

You're in our prayers!

Bingaling 8:59 AM  

I'm so sorry your birthday was a downer. My birthday last year was a total downer...and the fact that it is only a couple of weeks away is taking me back to that really rough one last year. I had a child with poop issues last year on my birthday, too. Yeah...Zack took me out to dinner at the Cheesecake Factory and my little peanut pooped his pants at the Cheesecake Factory...and when I took him to the bathroom, he got it ALL OVER. Ugh. I've resolved never to take the kids back to the Cheesecake Factory again. If I go - its adults only!

I hope your day today is a better one.
Praying for Kendi!
Chanda

Renee 9:21 AM  

Oh (((Anita)))

Hugs and Prayers for you and the whole G Fam. You all are just awesome.

About sweet little Sampson all morning I have been picturing him in with our little boys as we go about our preschool time.

Would it even be possible?

Praying God will surround you with love and peace.

Cora 9:23 AM  

Hope you have a better day today. Sounds like you could use a nice quiet uneventful day. Praying you can find a better way for Kendi to take those meds and those liver numbers to be nothing in the end.
Hope you get more interest in Sampson soon. I could not help but show Jim his picture last night.

Jodie 12:24 PM  

Try using a straw. I couldn't swallow pills for the longest time when i was little, and found that for some reason if you put the pill on the back of the tongue then sip water through a straw, you barely notice it going down.

The Hullingers 1:04 PM  

We have had good luck mixing crushed pills with chocolate syrup or a spoonful of hot fudge topping. It sounds nasty to a Mama, but the kids love it and barely notice the meds, if at all. It may not work for Kendi, though, since she gags on syrup meds. I have also used milkshakes, just a little bit (like 1/2c at a time, followed by the rest after the medicated portion is gone), and through a straw. Praying for your girl, she's a fighter and I bet youll all get used to her new routine soon.

From Diapers To Dorms 4:49 PM  

I have never tried this Anita, but my aunt used to give my cousin (who has a seizure disorder) her medicine crushed up, mixed with peanut butter. The strong taste of the peanut butter plus the thickness did the trick to hide her meds. They used to leave the peanut butter on the spoon and call it a peanut butter lollipop, but you could probably try putting it on bread or a cracker or something if you wanted to. I am not sure if it would work well for Kendi's particular meds but for my cousin, that was one of the only things that worked. (When she was on more mild tasting meds they had some success with yogurt and flavored applesauces, but then they switched to a stronger tasting medicine combo that needed the power of peanut butter.) If Kendi doesn't have peanut sensitivities, maybe it would work for her too. Just an idea.

-Angela

From Diapers To Dorms 4:51 PM  

So sorry! I forgot to say HAPPY BIRTHDAY (belated)! I know the day was rough, but hopefully you found some joy in it. I am sure you did, though I can understand how tough it is to do that during stressful times. -Angela

Global Girl 6:23 PM  

Happy Birthday!

A. Gillispie 8:45 PM  

Angela, I've heard peanut butter from a few people! Kendi *loves peanut butter. Knowing her, peanut butter alone in a big bite would be too thick for her. Tonight I mixed PB&J together. I'm tasting all these combos just to see for myself which ones might mask the bitterness of the pills. I think this was the best combo yet, but it was still AWFUL. Poor baby. I just barely get a tiny bit on my mouth and 45 minutes later I can still taste the bitterness. She has to gulp down 3 huge bites of the stuff. So far, the thing that is saving her is having sprite to chase the bites with. She's gagging and throwing up a bit in her mouth, but so far we've kept the medicine down. Tomorrow morning, it's syrup and peanut butter. =-)

From Diapers To Dorms 9:02 PM  

Hmmmm... I am not sure of the size of the pills exactly, but maybe leaving the pills whole and surrounded by peanut butter would work. I am not sure. I guess it depends on whether or not she can swallow that before she feels the pill inside too much... I am going to try thinking of some more ideas! I am sure you'll find the trick, but if I come up with any ideas, I'll let you know. (-: Poor little angel! She seems like a tough girl, so she'll master it soon. I have faith in that. -Angela

From Diapers To Dorms 9:08 PM  

My husband just had an idea Anita. Does Kendi like things that are spicy? If so, maybe you could grind the meds up and put it in some spicy foods (like a spicy lentil or something). Perhaps the spicy flavors would mask the bitterness of the meds and the spice might change her mouth enough for a little while so that the bitterness has time to fade away. I am not sure if she is used to spicy foods or even likes them, but if she does, maybe that would work. -Angela (and hubby)