Friday, February 05, 2010

Not quite the day we were hoping for

If you read yesterday's post you saw that I wasn't expecting much from today anyway, but it ended up being even more of a headache than we planned. Still, it was a productive day in some way, so I'm not totally discouraged--just totally exhausted.

5:45am: Wake up, shower

7:00am: Give Kendi's morning dose of med. One of my blog readers had the idea to go with spicy over sweet, which I really thought might be the trick! We decided not to go with hot sauce, but did go with the BBQ sauce we had in the fridge. One taste and she threw up. She was having no more of it. First downer of the day.

7:30am: At the hospital for Eric's labs. Uneventful.

8:30am: At the nephrologist for Eric's appointment. Sick of waiting in waiting room with the kids. They are TOO comfortable in there now so they think they run the place. Running, and jumping and singing, oh my!

9:30am: At the pediatrician for Bright and Taevy's appointments. This was one of our bright spots because I feel like they were productive appointments!
**Bright: When we started telling the ped about Bright's poop issues she literally finished the story for us. She has lots of kids with the same issues. It's a vicious cycle where he doesn't want to poop, so he holds it, so he gets stopped up, so he poops huge and it hurts, so he doesn't want to poop, and around and around we go. His little rectal muscles are all stretched out and the nerve endings are currently shot. The plan is to do miralax (adult dose) once a day until he is pooping "peanut butter" consistency at least twice a day. He'll learn that it doesn't hurt. Of course, he won't be able to feel it for the first 6-8 weeks until things tighten back up and nerve endings become sensitive again. The ped said to expect lots of accidents, and to give no consequences for an accident--he won't be able to help it. In 4-6 months hopefully we'll have a 4.5 year old who isn't afraid to poop. =-)
**Taevy: We talk about treatment for incontinence issues, and her ADHD. We've never treated her for ADHD because it didn't inhibit her learning at public school. Now that we're homeschooling, it IS inhibiting her learning. We took the big step to start her on meds. No judgement please. I've held out for 9+ years trying other coping techniques. If this helps her focus it will be worth it. We've got a plan for the incontinence too, but not until we get stable with the ADHD medicine.
**Kendi: Talked to the doc about her liver enzymes. She really thinks it will be something acute like mono or CMV. I really hope she is right. =-)

10:30am Down to the lab for Bright to get an abdominal x-ray and Kendi to have blood work.

12:00pm Target, to drop off prescriptions and ask if we can get some green apple flavoring to add to Kendi's meds.

12:30pm Finally home. Take 2 with Kendi's meds. I know she didn't get ANY down this morning and it was still within the window to get a "missed" dose. We tried the crushed pills in chocolate syrup. She got it all down. She kept it down for a minute. Then she threw it all up. Ugh. We grabbed a quick bite to eat before heading to the hospital for a NEW appointment. Eric needed a kidney ultrasound. He needed this because his creatinine jumped from 1.2 to 1.6 in two days. Not good. The doc realized that the pharmacy didn't' give him exactly the med he prescribed. That is the expected cause of the jump. Worried? Yep. It would suck to lose this kidney because of a minor mistake by the pharmacy.

4:00 FINALLY leaving the hospital after sitting in the ER waiting room with the kids for 2.5 hours. It was the only waiting room near Radiology that had enough free chairs for my crew. I kept thinking about all of the germs we were getting all over our bodies--germs that would be catching a ride home with us, where Eric doesn't need any more germs! We weren't prepared to be there that long, so Kendi soaked through her diaper. The miralax started hitting Bright, so we had two close call runs to the bathroom (but yea for the poop in the potty!). He thought he had to go pee when it was actually the other.

4:30 Back at Target to pick up prescriptions and other weapons to help Kendi with her meds. The pharmacy told us that it's illegal in OK to sell us the flavoring we needed. But they knew us well so they would be giving it to us free instead. Love them. The pharmacist was almost in tears she felt so bad about the mistake made with Eric's medication. We aren't sure the mistake was on their end anyway. All the kids got free Target pharmacy wristbands--just for being Gillispie kids. ;-) They really do know us well--we're there 3 or 4 times a week for medications (between Eric, Kendi, and I). Also picked up tic-tacs, mini-m&ms, and mini-sweet tarts to start working on swallowing pills with Kendi.

5:30pm Finally back home. We caved and got Subway for dinner. Too tired to consider anything else. =-) Came home to a message from our HIV nurse saying that if Kendi couldn't keep her dose of meds down tonight we should discontinue meds altogether and call the doc on Monday morning.

7:30pm Mixed 1 small bit of applesauce with 2mls of STRONG green apple flavoring and the crushed pills. Said a prayer over said concoction. I keep trying to get it down to just one bite, but once I add in the pills it's two bites. Poor baby Kendi, she's to the point that she literally shudders at the thought of putting the meds in her mouth. She eventually opens up for the first bite, but we have to plug up her nose to make her open up for the second bite. She gags. She shakes (from the bitterness). But thank God she kept it down tonight. I have no confidence we'll have the same outcome tomorrow morning, but the best we can do is take it one dose at a time.

Today was a VERY. HARD. DAY. No lie. Today sucked. But there are still things to celebrate. We've got plans for Bright and Taevy. Our Ped said that just getting Taevy on meds will probably make a big difference to our stress level, and I tend to agree. We got the night dose of medication down Kendi, which is no small feat. We live in a place where Eric's transplant is being watched super closely--where we can get an ultrasound in ONLY 3 hours rather than 3 days. We have doctors and a pharmacy team that really cares about our family. We're more than a number. I have a job that allows me to take care of my family. I can drive around doing this stuff all day and still catch up before I go to bed tonight.

I realize that this week I've "vented" a lot. It has felt like a LOT this week--my life, that is. But I asked for this life. In fact, I prayed hard to have just this life! I prayed to have these children. I prayed to keep my husband way past his kidney transplant. I thank God most every day for my job. I chose to homeschool. The Lord has granted me the life I prayed for. I will still vent when I need to, but please know that nothing will ever make me wish my life is anything less than it is!

Eric's decrease in Kidney function got us a ticket to Saturday labs. Ugh. We were really looking forward to sleeping in. Maybe we'll still be able to go back to sleep once we get home? Tomorrow just can't be harder than today was!


Laurel 11:27 PM  

Praying for you!

:) :) :)

Zimmerman family 12:06 AM  

We have had Genet on ADHD meds for 3 years now and it changed her life and ours. Don't feel bad at all. Some kids truly need the meds. The first day that she took hers the teacher couldn't believe the change. She had no clue we had given them to her and when we picked her up she said "I don't know what happened today, but it was totally different!"
Now if they could just come up with a medication for attachment. :)

We are Grateful!!! 12:21 AM  

During our devotion this morning we all prayed for Miss Kendi and Eric. We should have prayed for all of you! Sorry today was so difficult :(
We will keep you all in our prayers from now on.

Kait 7:49 AM  

You're allowed to vent! It's a complicated life you're living and you handle it beautifully. I agree with the comment previous to mine - some kids simply need the meds.

Kristin Jag 11:18 PM  

Oh my definitely deserved more than Subway at the end of the day. You are super mom and keep telling yourself that too-you are in my thoughts and prayers and I hope that next week is a walk in the park!

mjohnson 3:31 PM  

Hi Anita,
1st time visiting your blog via James 1:27, and came upon this post. My son now 4, went through the same issue as Bright, our ped did miralax as well. Just FYI, I watched closely, it worked but I really believed it caused some discomfort and cramping, (i know this must be so strange to be discussing for some) but the buildup with him holding out and the med creating some serious was explosive, which traumatized him worse, as you said. Anyway, all of this mental drama (we had him checked out, no physical reason for pain there)would run in cycles he'd do better once he went without pain and then one of us would say "when's the last poopy diaper Isaiah had?? counting 1,2 days oh no, he's doing it again." None of my friends could share any wisdom on this subject. My loong story, ends with this...Benefiber chewable fruity tablets, or other brands... any of the chewable fiber tablets, Isaiah called it his "candy", he could have 2-3 a day, later just 1 a day was enough to keep him regular and there was no cramping, no drama, before pottying. I hope this helps as a backup. Now he doesn't need them anymore.

A. Gillispie 8:11 PM  

Thanks all!

MJohnson, thanks for stopping by and commenting! So far Bright is doing great with the miralax. No diarreah (although soft stools) and no tummy aches. Fingers crossed!