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