I am doing very well this evening. I'm feeling great, playing with my toys, watching my Mom and Dad make fools of themselves trying to entertain me and listening to all of the great music that comes from my awesome 'boom box.'
Here's me with my sweet boom box - it plays some great tunes!

I had a cardiologist appointment today. I know you're all holding your breath in anticipation since it is a Monday and all.... well, it went very well. I am now down to 2x a day Lasix, and got rid of the Zantac all together (that's my least favorite of the meds - so I'm stoked). As for the O2, I still have to have that, but I've been given the green light to go O-less for short periods of time throughout the day. Dr. Karrie said that next visit she'll probably let me be off O2 during the days and I'll just need if for long naps and at night... that sounds really good to me! She also said that the fluid around my lungs look much improved, however, it's not all the way cleared up... that's why I will still be choking down the Lasix 2x a day for awhile longer.
This is me just hangin' out on my mat with my O2.

So things went well on this Monday, but as the title insinuates, the weekend was not as honky-dory. Just so you're not really worried, I actually felt great throughout this whole ordeal, but things just were not going our way. Here's the story:
Mom and Dad took me to the local hospital to have x-rays and blood work done on Friday before my cardiologist appointment on Monday. I actually cooperated very well for all aspects of the visit. However, shortly after returning home, Mom and Dad received a call from the pediatrician saying that my blood test said that my potassium levels were way too high. She said that she thought it was just an error in the method of taking the blood - the method used was that of administering a heel prick and then coaxing the blood from my heel with in a milking motion - and wanted me to get another blood test just to be sure. So, on Saturday we headed to a different clinic that was open on the weekends and asked to have the blood test again.
This time, Mom and Dad said that they insisted on the lab techs administering the test with a veinous blood draw. Lab technicians are very reluctant to do veinous blood draws on infants, as some of you may know, so they put up a fight and said that I probably did not have any good veins left to poke since I'd had so many IV's and other blood draws and said that they had another method of getting the blood sample by still doing a heel prick, but by taking the first few drops of blood and using them for an instant sample that goes directly into a cartridge read by a computer. Since, Mom and Dad don't always trust the lab techs to find a vein, this sounded like a good alternative. After watching them do this method I realized that they were still "milking" the blood from my foot and my doubts began to rise. For this reason we stayed at the clinic to make sure we were not going to be called back as soon as we arrived home because of another misreading.
Well, turns out they got a reading that my potassium levels were at a 9... I guess they must be hiding some bananas in my slim fast. I'm not really sure about the normal levels, but because of this reading, they brought me back to one of the treatment rooms to be seen by the Dr. on duty to make sure I was stable enough to be brought to the Children's Hospital ER by my parents instead of the ambulance!
This is how I felt when I heard the news that I would once again be visiting Children's Hospital.

Mom and Dad drove me down to Children's thinking, "Wow, Lydia seems to be feeling really well, we were not expecting this at all!"
Once we arrived at Children's and got all checked in at the ER desk, they brought me back and proceeded to put an IV in and in the process took a veinous blood sample. Well, that proved to be all they needed. Once the lab results were back they let me go home, saying, "Your potassium levels look completely normal Lydia, keep up the good work - you're eating just the right amount of bananas!"
Can you believe that! Mom and Dad have learned that they know more than they think and they're now going to be more persistent when it comes to my blood work and the methods used to get it. Those tricky lab techs can't fool my mom and dad anymore!
Technical stuff - for those of you not interested, you can stop reading here.
When they administer heel pricks for testing blood, the blood cells are damaged because of the milking motion they use to get the amount of blood they need. The milking causes the blood cells to burst leaving them damaged and with the potassium just floating around in the mix. Potassium levels are the most affected of the levels being tested. The term for this damaging is called hemalized (not sure on the spelling) blood samples.
That's enough blogging for tonight... I best be off to bed!
Love you all,
Lydia
4 comments:
Lydia,
It was great to have an update from you again. We are glad to hear that things seem to be going quite a bit better for you. At least you were able to get rid of some of your meds. I'm very sorry to admit that my favorite picture on your most recent post is the one of your big bottom lip...the look is a little familiar (I think your mom has used this one before). Keep up the good work!
Lots of love!
Uncle Barry, Aunt Joni, Ethan & Erin
Hey there, Lil' Lydie! Glad to hear that you are making progress and that you may be rid of the -O2- very soon, that's good news. We were a little worried with the whole blood testing thing, but relieved that it is all under control now....funny how we need just so much of this and so little of that in our veins to remain healthy and strong....God is so great! He really made us so cool when you stop and think about it all. We are excited to hear about what your days are like. Do you get to get out much? Stolling in the 'chariot' is what I mean....fresh air, all that....or are you pretty homebound with the O2tank and all? Just wondering what else you get to do with all of your new energy since the surgery. Is mommy being brave with the tummy time? Have mom and dad been able to get out and have some alone time while you hang out with a 'friend' yet? You make sure that mommy and daddy are taking care of themselves too!! They are doing a super-great job with you.
TTFN Love and kisses,
The Wolgens
Goes to show that a lot of folks in the medical industry aren't miracle workers...Lab techs especially! I think the phrase "trained monkey" comes to mind. Lydia looks great in her photos...keep up the good parenting you guys!
Darin
wow, that was a great update, little one! you and your parents are getting pretty smart with all of this stuff, and that is a good thing! who better to advocate for you :). you are certainly an oft prayed for and much loved little punkin, and isnt that just great?? thanks again for the updates.
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