A Case of the Weekends - It's Bananas!

Hello everyone,
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

No case of the Mondays this week!

Howdy everyone,

I'm glad to report that I've been feeling better. It seems that the more diluted mix of the slim fast has kept me more comfortable (for the most part). I got through a whole Monday with no tests, no crying fits and no "white coats." Not only did I make it though Monday, but the previous weekend and now the days following with only some minor discomforts.

So, no news has been good news in my case for the last week or so.

We have had some highlights over the last few days. Aunt Julie's visit ended on Sunday morning, but we got a chance to celebrate her 20th birthday, Mom and Dad's 3rd anniversary and my 4 month birthday. It turns out that all of those momentous occasions happen on the same day, October 8th. Julie wasn't here anymore on the 8th, but we celebrated early with some yummy cake (way better than portagen) and with some friends. Paul and Heather stopped by on Saturday with Chinese food and we all watched the CU Buffaloes football game - I know this was exactly how Julie would've spent her birthday back in Iowa - unfortunately, the Buff lost, but we were all kind of expecting that (except Dad, but we'll let him dream)!

Here's the awesome cake that Mom and Julie made for all of us - Julie did the decorating.... she did a great job fitting everything on such a small canvas.

On Sunday, we just spent the day relaxing. We went for a walk, watched the Broncos win and took and family nap - just imagine all of us, including Boscoe, sleeping in Mom and Dad's bed... it was great!

Dad took a break after the Broncos game to play with me and my friends.

On Monday, we didn't want to do anything that might irritate the powers that be "the Mondays" so we laid low and seemed to avoid them with success.

Mom's been trying really hard to get me to eat more than the minimum amount of portagen allowed to keep me hydrated - I still struggle a bit, but she's been successful by getting about an ounce each day above the minimum... her goal is to get me up to 20 oz by the end of the weekend, right now I'm hovering right around 18oz per day.

Dad went back to work today for the first time since the week before my surgery. It's been really great to have him at home since it can be hard to move me around with the oxygen tank always attached to me. I'm most easily taken care of by a two-person team, however, Mom managed the whole day by herself today, but Dad sure heard about it when he got home - not from mom, but from me... I scolded him for awhile which, and if I do say so myself, is not the most pleasant of things. Dad's work has been really great with allowing him so much time to spend with me and mom after my surgery, we're really thankful for that!

After scolding Dad we had Dave and Lori over to watch the Avalanche home opener hockey game at our house - Heather won Mom and Dad some tickets to the game, but they were kinda tired and didn't want to leave me with a babysitter just yet, so they gave the tickets to Scott and Andrea instead - hopefully they had a wonderful time. I wore my Avs sweater in the true spirit of fanatacism, however, unlike my Broncos cheer-leading outfit, my sweater did not inspire a win for the Avs tonight - bummer - maybe next time!

I was a little tired after scolding Daddy for going to work, so I took some needed rest in my swing.

Well, that's about all that's been going on here.

Tomorrow I need to have some more chest x-rays done and another blood test so that the results will be available for Dr. Karrie for our appointment on Monday - that's right.... keep posted for a possible additional case of the Mondays to come next week. But until then, lets just hope that the Monday appointment will be a breeze and who knows, maybe I'll be able to come home without oxygen (wishful thinking)! We'll keep you posted on that.

Okay, that's all I've got for now.
Lots of love to you all!
Lydia

Home Again, Home Again, Jiggity Jog!

Dad, Mom, and me leaving the hospital!

Hello Everyone! I returned home from the hospital! It is so great to be home, and hang out with Boscoe again! Unfortunately, as soon as I got home, some of my same problems arose that sent me back to the hospital in the first place. I was having a really hard time eating, so Mom, Dad, and Julie were getting worried, and were trying to think of answers as to why I ate so well in the hospital but not at home. Some of their hypotheses included: 1) maybe the temperature affects my appetite; 2) maybe the water source affects the taste; or 3) maybe I'm allergic to something at my house. We even thought we may have to replace the carpet ... which my mom wouldn't be too opposed to! After about an hour of conversing, they decided to research my formula on the internet. The results they found were astonishing! It turns out that when I was prescribed the Portagen formula, the health care professionals didn't inform us that the dosage on the can was different from the prescribed dose! So, for the past week, Mom and Dad have been feeding me some very THICK stuff! I tried to tell them this, but they just didn't understand. After they all realized the probable cause, a million different lightbulbs popped up in their heads. No wonder I don't like to eat at home, and only at the hospital! No wonder I have a risk of being dehydrated! It was crazy how all these problems I have been having are finally making sense!

Me telling Julie how awful that Portagen stuff is

It has been approximately an hour since we have come to this conclusion, and I already consumed my portagen more efficiently than I had been. My parents were happy about finding a probable solution to my problem, but are still quite upset that they had to do their own research to find any answers.

So, I am signing off now with hopes that I will continue to show improvement, and aspirations of becoming a detective some day.

Hello Everybody!

Love,

Lydia

Oh yeah.

I give aunt Julie one of my million dollar smiles

With all this hospital business over the last couple weeks, I forgot to let you all know what a big girl I am.

I now weigh over 10 lbs!!

Can you believe that I even managed to gain weight from my pre-operation day until the day I left the hospital (the first time).

Pre-op weight: 9lb. 5 oz.

Discharge day: 10lb. 3oz.

If I had gained that much weight in that short a period of time before surgery, my parents would have definitely baked a cake!!

Love you all. The hospital is really quiet at midnight - but I'm about to eat another meal here in a couple of minutes.

Once again. With feeling!

Hey everyone, I just wanted to give a shout out from The Children's Hospital once again.


I had another appointment on Wednesday morning and a few things came up that concerned my carddiologist. After finally realizing that there may be more things going on in my little body than just some sensitivity to my 'slim fast' diet, Mom and Dad decided that it would be in my best interest to go back to the hospital for a few days to see if the Dr's can decifer exactly what treatments I need to get back to 100%. Mom and Dad finally got to the point where they felt like all of the variations on food and such were becoming more of a science experiment than a treatment for my condition... they decided to implement some help.


My cardiologist is also concerned about the following things concerning both my general health and the status of my newly configured heart:

• She found a little more fluid (effusion) around my lungs (a normal after effect of surgery) than she would like to see by this time following surgery.


• Because I'm not very interested in my formula, my hydration levels were a little low.


• There is a little more leakiness in the surgically repaired valve on the left side of my heart than they had originally observed following surgery.

So, those are the three main concerns and the problem is that they all seem to depend on the next for things to improve as a whole.


My poor eating habits are causing dehydration and my medication for the lung effusion is a diuretic which means that it's flushing fluids from my body - meaning that increasing my dose of medications for the lungs would dry me out even more. I have to prove that I can eat at least 16 oz of Portagen every day in order to keep my fluid levels in check. If I'm not able to do that, we'll be forced to administer a feeding tube - so far, I'm eating like a champ in the hospital... I ate over 17 oz yesterday and I'm on my way to another good day today.


The Dr's think that in addition to the acid reflux and the bad taste of the portagen that the fluid around my lungs could be causing me to have shorter meal times because of a lack of comfort and energy keeping my food intake low. So there's your problem: I have to eat more to be able to take my medicine and I have to take my medicine in order to make my feeding more comfortable - that's why Mom and Dad figured they needed a little help.


As for the leaky valve.... I've been put on some medication for that as well. They think that the medication should be able to keep that under control - if worse comes to worse, I would have to have another follow up surgery, but not for some time.


Anyway, Mom and Dad are encouraged so far with my eating progress and my vastly improved mood - I'm beginning to act more like my usual jovial self as treatments seem to be doing the trick - I've even been flashing the nurses some smiles.

I have a bounce chair in my crib to help me sit up after meals to help with my acid reflux issues. I'm laughing at my bumble bee friend hanging out on the rail of my crib.

If everything continues to go as it has to this point, they're thinking I'll be able to go home already tomorrow.... unfortunately, if I'm not discharged tomorrow, I'll be here for the weekend since things come to a screeching halt on the weekends as far as administration goes (admissions are ok, but discharges are hard to come by until Monday).

Nothing can take my smile away, not even my pink tape covered IV line.

I'm actually pretty glad that I've been in the hospital for the last day and half so that Mom and Dad can get some answers on my condition before going home again.

I discuss everything that's been going on with my bumble bee and bunny friends.

Since I've been here at the hospital, my Aunt Julie came to visit. She got here late last night and she'll be here until Sunday. I love having her around, it means that I am held almost constantly!

Today, Gena and Koen stopped by to see how we're holding up. It was really fun to see them - we like seeing other faces during the day besides those of medical staff.

We had a nice visit this afternoon.

Hopefully my next update will be made from home and I'll be saying how great I feel!!

Love you all! Lydia

Another case of the 'Mondays'

Well everyone, it's been a week since I last let you know about post surgery life. It seems that it's good to be home, but I've got a few kinks to work out.

I'm having a bit of a struggle with my "slim fast" (aka Portagen - low fat formula) diet... we're not sure if I'm having some acid reflux issues or if my tummy is really picky about the kinds of food I eat (I guess I should really start learning how to express myself more clearly to my parents and Dr's - it's like I can't form the words just right to explain how I feel).

Because of my "slim fast" woes, I had a follow up appointment that went from being an expected hour long engagement to about a four and a half hour ordeal. Thus the title: "Another case of the 'Mondays' - it all began like this:

8:30am - arrive at Children's Hospital for x-rays....9:30am finally receive x-rays (big fiasco with Kaiser insurance and Children's hospital to blame).
9:35am - check in for our 9:30am Cardiology appointment - which we would have been early for beside the afore mentioned road bump.
10:00am - finally see the Dr's - they voice their concerns about my lack of dietary zeal, hoping that I'm not getting dehydrated and thinking that I may need some Zantac to help me with a possible case of acid reflux disease (they tried to give me Zantac after surgery, Mom doesn't think I ever actually took it - moments after administering it, they would find it on my shirt...hmmm).
10:00 - 11:45am - continue with the discussions which included the Dr's throwing out the idea of admitting me again as an inpatient... Mom and Dad quickly shot that down and said they would try as many things as possible to get me up to speed again without having to see me in the hospital bed again so soon - however, they need to prove that they can get my fluids up in the next few days in order to keep their end of the bargain. The Dr's then requested that I have labs done once again to rule out any crazy infections...so down to the lab we trekked.

Just to show to what lengths Mom and Dad are willing to go to get me to eat my 'slim fast' - they added cherry Kool Aid (Dr approved of course) to my formula... I really liked it from the get go, but proceeded to deposit it back onto my shirt (and Dad's) shortly there after.

Noon - Mom and Dad check me in at the lab.
12:30pm - they finally called me back to get my blood work done.
1:00pm - after two failed attempts at finding a vein and a call from Ivan for reinforcements for the blood draw, they were finally able to do a finger prick in order to get the blood samples they needed to fulfill the required tests.
By 1:15pm Mom, Dad and I journeyed back to the car in a bit of a daze, not to mention that I was hungry!! My parents were not expecting such a long stay and had not packed enough Portagen for the WHOLE morning - so there we all were, thinking, "hmmm... The Dr's want me to be eating more, but because of them, we were far from the sustenance I needed!"
Well, once we got home, things began to look up.... we were all back in our familiar environment and best of all, Boscoe was there to welcome us!

Boscoe says, "Where have you guys been, I've been worried sick!"

Since we've been home tonight, my eating seems to be taking an upward course, but it's only been about eight hours since we arrived back at home. My parents are hoping that we can keep this up so that I'll be getting the allotted amount of calories and fluids for the day. Otherwise, I am being very pleasant for Mom and Dad - I've found that my swing has become a loyal friend (as long as the batteries hold up).

See, you can't get me down for too long just because of a digestive mystery.

I hate to leave you all thinking that things are really rough, my incision is healing nicely and I got the stitches taken out from the chest tubes. I'm returning to my adorable little self minus an eating related episode or two per day.
Thanks again for all of the positive thoughts and prayers being sent our way.
Tomorrow is another chest x-ray and Wednesday we will review those findings with our cardiologist to see if our actions to that point are proving effective.
Bye for now!

My reaction to finding out about more procedures in the next few days... yikes!

My 3 month photo shoot

Hello everyone. I would like to share some of my 3 month pictures that my friend Kristi took after the Buddy Walk on September 7th. She does a great job don't you think?

Here they are:

By the way, we survived our first night all on our own without the help of nurses and monitors. I managed to keep my oxygen tube in my noise for most of the night even though I have to admit that I try to pull those silly things out often when I'm awake. We all slept fairly well and had a good nap this morning after my breakfast. I think we are all starting to catch up on much needed rest. Mom and Dad gave me a bath around noon and it looks like my incision is healing very nicely already. I can't believe it's only been just a week since I was just out of surgery because it feels more like a month. Thanks again for all of your prayers and support and I hope that you enjoyed the pictures above.

Blog at ya later,
Lydia