What's Next

I talked to someone that I think....I THINK... knows what is going on. We have had a bit of a struggle finding out if Jack IS or IS NOT on a low-fat diet, if he IS or IS NOT getting his tube out before the cath, if he IS or IS NOT going to need another procedure following the cath...

Etc.

So I talked to Dr. Grey. I think he's a reliable source, (weekends are quiet and mysterious here, not as much noise and not as many doctor's walking around.) He told me they plan on leaving the tube in till Monday. It isn't putting out a lot of fluid, but they want to watch it, as they ARE going to change his diet. And as for the cath, there are a couple of scenario's that could come of it:

1) They go in, don't find anything wrong, and decide to address this issue with diuresis, and hope that if we keep him on his med's for a longer period of time, we can avoid this from happening again.
2) They go in and something stares them in the face as a problem, and they balloon it, and put a stent in the narrowing, and that helps this from occurring again.
3) Something is really wrong- and they have to correct it surgically.

I believe those are in the order of seriousness, starting from least, to most.

We will be here, hanging out all weekend long. Jack is acting like himself, but he is attached to the chest tube that can be painful if he moves around too much. So we can't exactly do whatever we want. Perhaps I can discuss his wish with him- and we can get a better idea of what Jack wants to wish for.

The "Big" Decision.

Today the Doctor's told me they would be consulting with Dr. Kouretas, Jack's surgeon. I know Kouretas, and how eager he is to get inside of people- literally. So they've decided to do a cath on Jack, scheduled monday. On top of that, they want to put him on a low-fat diet because of the Chylo. That is going to be trivial because of the need to get calories into Jack- but without him eating sticks of butter and cool whip, like he usually does.

We know that they want to do the cath to look at the pressures in Jack's pulmonary artery. It will tell them if it is too high, and if that is the cause of the repeated pleural effusions. If so- then I'm not exactly sure what is next. In fact, I'm not sure what happens next if the pressure ISN'T high. But I assume that they may try to balloon it open if it is too high, and help alleviate the high veloctiy that is in there.

So I don't have alot of answers right now. This is what I DO know, we will be here till they do the cath on monday. Then from there- who knows.

Yes, I'm scared.
No, Jack doesn't know what's going on.
Yes, we think this will hopefully tell us why this keeps happening.
No, we don't know how long we'll be here.

So, if it isn't too much to ask. Keep the prayers comin.

Wishes will come true.

I thought now would be an appropriate time to tell everyone that Jack will be granted a "wish" by the Make A Wish Foundation. Stars seem to have aligned, and something in the cosmos felt Jack should get a wish. Many things happened simultaneously that led Make A Wish to decide the Jack having Hypoplastic Left Heart Syndrome and overcoming many obstacles in the first few years of his life is deserving of something special.

Now, the first thing on everyones mind is "What will he wish for?" Well of course we understand that Jack is unable to create a stellar wish that will fulfill his dreams, and the decision lies in his parents hands. We are a little overwhelmed with such an important task, but we plan to dedicate some serious thinking-time to this once in a lifetime opportunity. If you ask Jack right now, "If you could wish for anything in the world, what would it be?" he has two answers that he alternates. One, is "Stars" because he obviously associates wishing with stars, and two, is "California" because he is apparently inlove with the coast.
In the short time we've had to think about this, we have had a few ideas. One, would be to meet his favorite Nick Jr. friends from Gabbaland- Muno, Foofa, Brobee, Tootie, and Plex. And I guess, if we HAVE to, DJ Lance Rock. But in the process of meeting them, Jack will discover that they are HUGE, and don't speak- because they have voiceovers. So that idea is somewhat tainted with the potential for disappointment.

(I'm sure that many of you have seen or heard Jack's performances from "Yo Gabba Gabba", including "Decorate the Christmas Tree", "Don't Stop, Don't Give Up", his reenactment of Jack Black's Performance on the show, and his daily routine of singing the "Name Song" when we take each of his med's, that he has named after Gabba characters.)

Another thought is Lightning McQueen from CARS. Jack has this movie memorized and loves any red vehicle. We thought that it would be thrilling and surreal if he could go to a racetrack, see the race cars up close and feel the intense speed for REAL. However, it is frighteningly loud down there, and it could plain scare him to death- and perhaps crush his love for automobiles making every car ride a nightmare for us from then on.

(Now, each time the sun shines too brightly in Jack's eyes, he yells "Ca-Chow Mom! Ca-Chow!" the way Lightning McQueen says "Ca-chow" when he reflects the sun from his mirrors into others' eyes.)

One of Jack's hero's is Buzz Lightyear. We could ask for unlimited rides on the Buzz Lightyear ride at Disneyland. But with careful planning and perfect timing, you can do that on a Tuesday afternoon in the offseasons at you leisure. So we feel we should try and achieve a wish that isn't available to everyone, to help Jack understand it is something rare and special. Like him.

(Jack has perfected the dialogue between Buzz Lightyear and his arch nemesis, Zurg. He can do it with, or without props.)

I am up for any suggestions, I would love to hear everyone's ideas. We are so grateful for this chance to give Jack something that he can look back on and realize that he reall is lucky, and he DID survive a life threatening condition that has made him stronger, as well as all of us that endured this with him.

Please let me know- if you all have some creative ideas. We would love to run tham by Jack. And thank you- to Leslie, and to the Make A Wish Foundation, who are contributing their time to help Jack become a "wish kid."

Day 2,365,789 at the hospital.

Jack did pretty well overnight. It was a battle to get him a prescription for morphine- even though the 4 other times we have had a chest tube he's had it, no question. So a couple nurses stood up for us and we managed to get it. That's the thing about narcotics up here, is how hard it is to get the morphine- then once you do, they hand it out like candy. He still has a cough and each time he coughs it is pretty painful with that chest tube inside of him.

Grandpa and Grandma got home from London last night and somehow made it up here to visit Jack. It was nice to have them here and both Jack and I are relieved they are home safe. He knew they were "at the airport."

Today the Doc's said that his x-ray looked good. We haven't bombarded him with as many diuretic's this time around, so the drainage is slower, but Jack's electrolytes aren't being as screwed up. They said depending on the drainage over the next day, they MAY or MAY NOT take the tube out tomorrow. We have still had quite a bit of drainage, so I don't expect them to take it out tomorrow. But who knows.

I met the Wright family, who happens to be bunking next door. It's always nice to meet other heart mom's, and Carla seems to be doing well.

Guess What.

We are back up here again, with another pleural effusion.

To keep myself from seeming redundant, I'll answer the questions we've been getting the most of, quickly, and as short as I can.

-No, it's not as bad as the last few.
-No, we didn't bring him up here suspecting this. We brought him to a pediatrician at the U because he's had a cough and Josh had had pneumonia. But they wanted an x-ray which is how we discovered it.
-No, the Doc's don't know why it happened again, and they are concerned, but they aren't going to do anything drastic at this point (like a cath,) because it could be the cold that is associated with this episode.
-Yes, Jack is pissed.
-Yes, we are about through with the novelty of pleural effusions.
-Yes, Tom and Becky are back. They are home recovering from a bad flight, long trip and exhaustion. They'll come up tomorrow.
-No, we don't need anything right now.
-Yes, they put in a chest tube, it will be in for a day or two.
-Yes, we will keep him on diuretic's for a longer time now.
-Yes, we are worried about the potassium levels.
-Yes, they'll have to draw his blood every morning before an x-ray.
-Yes, I'll be spending each night here that he needs to be here.
-No, we hope this won't happen again.

So my theory, is that last week when we took his diuretic down to once a day, Jack began to get sick and like any mother would- I gave him "lots of fluids" to help his cold. So we bumped UP fluids after bumping DOWN diuretics which probably didn't help, and Jack has been doing alot of violent coughing which I'm sure aggrivates the area around his lungs and doesn't help either.

So here we are again. People recognize us now, nurses know our routines and what we like and don't like. Our cardiologist is going out of town and I hope all these people I haven't worked with before know what they are doing, and who they are dealing with. We are hoping to be out of here by the weekend, so we don't have to tack on Father's Day to our stays here during Easter, Mother's Day, and Josh's Birthday.

Thanks to those who are praying, and thanks to those who have expressed their concerns today. We love and appreciate you all.

Saddles, bunnies and baby ponies...

This weekend we went to a BBQ at one of the funnest houses on Walker Ln. It came with a barn- complete with animals. There was a baby pony, I named Perry. And so many bunnies...there were baby bunnies, then even babiER bunnies the size of mice...and Jack had a blast. (until he pet a pony that wasn't to fond of kids and it snipped and him, Jack feelings were quite hurt and we are STILL nursing those broken feelings..)

But here are some pic's I took.

(To give you an idea of how small the baby pony is, here is he and Jack- who is already pretty small.)

They're working on it-

Read the whole article here.

Cabin Fever

It is almost Cabin season. I love our cabin. Be it small, cozy and old. With it's minor upgrades and adjustments, it has mostly stayed the same throughout the years and has been a private retreat for our family. I have many, many memories at this cabin including birthday parties, unsolved mysteries, and miscellaneous dead creatures.

In my sophomore year of college we were assigned to go on "Artist Dates", which I suppose meant spending special, quality time with the Artist inside of us, then write a paper. I chose my first date to be at the cabin.

Creative Writing Lisa Marie Durham

Artist Date 1 09.05.02

Cabin Retreat

I don’t mind living at home, in fact I would prefer it that way for the moment because I couldn’t afford it otherwise. But when you get the first taste of not having to ask or answer to anyone, it is difficult to go back to the chronic supervision and constant interrogation of where you are going and where you have been. This was all emphasized last night and triggered an uproar inside of me to pack up and take off at 10:30pm to Heber, where our cabin sits nestled above the 18^th hole of the Homestead golf course.

The drive there was quick because in my attempt to be alone I received a phone call from a friend who needed to vent repetitively about the same particular subject, her new found love not dedicating enough time to her putting her “emotionally at risk” even though they have been dating since….last Monday. However, I didn’t mind it. By the time I finished handing out my quality professional advice I was unlocking the door to my temporary solitude.

It wasn’t until I sat down in the dark silence, (mostly to get used to the fact that my friends voice was no longer in my ear) that I realized I was on my Artist Date I was assigned to take. I then decided to not do the usual cabin routine and chose to absorb the moment I was in. I noticed things I hadn’t usually noticed while I am there. I have never been there alone without sound. There is usually a movie, music or the company of others to keep the interior alive with motions and clatter. This time I heard everything outside and felt as though I was being listened to instead of me doing the listening. There are more creatures closer to my cabin than I thought. Nothing that was large or dangerous, or even scary. But the small curious animals that wonder why I am there.

Even though there were stars in the sky and I could see them from each direction, it began to rain. I felt so comfortable and best of all GLAD that I took the spontaneous move in driving there on a whim. When I was little I loved to set up umbrellas and throw blankets over them, then crawl underneath. No one knew I was in there (or so I thought) and I adored that sense of invisibility. The cabin took the same effect that night. No one knew I was there, I hadn’t told a soul. I was under the blanket and felt safe and unreachable.

I chose this event as my Artist Date because it was the first time the idea of it came to my head instead of me thinking of something to do for it first. (I’ve never been one to ask someone out first.) So I believe I was taken on this date. I enjoyed my time alone and it worked perfectly for this paper. Clearing my mind, opening new windows of vision in a place I have been a millions times before and finding out that I haven’t noticed things that have been in front of my face each time. I look forward to the next time I have the opportunity to be taken out again.

Improvement, progress and motivation.

(I wrote this a long tim ago, and forgot to post it.)

Lately I have discovered that I am driven by a close group of people in my life. The important ones. The ones I love to be around because not only do I enjoy their company but I learn more when I am with them. These people help me gain perspective on my own life, help me understand the reality of my goals and my hopes to reach them.

Growing up you are sometimes asked who your "Hero" is. Who do you look up to, or want to be like. I remember hearing alot of "my dad" or "my mom" or religious figures or sports athletes, and I would usually follow the crowd with a typical answer. To this day, I am not sure if I could target one person as my idle or hero. But I do consider certain people a crucial part of my everyday growth. Here I am, 28, and I still look to others for knowledge, advice, hope or inspiration.

My dad certainly is my go-to person for knowledge. He has many tidbits that are both useful, and some not useful at all. He taught me how to say "humuhumunukunukuapuaa" the state fish of Hawaii. He also taught me how to change a tire, which has come in handy more that once in my lifetime. He was always a supporter and never hindered me on anything I was interested in growing up. We were never forced into anything, like flute lessons, or ballet. Our interests were encouraged in creative ways. I remember my dad would never ask us to stop playing the piano. Even if it were late a night, or while he was taking a nap. He never wanted to have to ask his child to stop playing the piano. I respected that greatly.

My mom is one of my most favorite people. She makes herself available to me at any time I need to talk, vent, ask, learn or just be with. I have never come across a more loving and selfless person. It is incredible the amount of sacrifice this woman has made, for so many people in her life. I can only hope that I am as good of a mother. Each time Jack wakes up with a scary dream, or can't sleep, I sit and rub his back or stroke his forehead and think about how safe I felt when my mother would do the same for me. There is something about her that makes her my best friend, and my mother, simultaneously.

If you were to ask me what I love most about Josh, I would right away tell you his smile. But behind his prettiness- Josh has the biggest heart you will ever come across. Truly, it is Josh's passion for life and family that makes me fall in love with him everyday. I hope to have the same outlook on life that he does, seeing each day as an opportunity, taking advantage of chances he has to learn new things and become better. I admire him so much for his diligence, honesty, and hard work. He is perfect example of a dedicated husband and father. The things he does for our family is enough to call him a hero.

And this one. Is there any question to why I am so inspired. I can't even imagine what it was like for Jack, as an infant, toddler, and little boy, to endure three open-heart surgeries and have the spirit and strength to come out of each one with a better attitude? I hope that he knows how much he has taught me. I hope to repay the favor.

I am so lucky to have these people around me. I am so lucky to have a sister that is so smart, and witty, and intelligent that she is a delight to be around. And a brother, who has a wonderful family with so much love, who is a wonderful example to me. I don't express my gratitude enough for these people that help me make it through each day and help me to be a better human being, simply by being who they are.

The family is both the fundamental unit of society as well as the root of culture. It ... is a perpetual source of encouragement, advocacy, assurance, and emotional refueling that empowers a child to venture with confidence into the greater world and to become all that he can be. -----MARIANNE E. NEIFERT

Popple? Wait no-it's Dominic.

For four years now, Dominic has been getting furrier and furrier. It is cute, and fun- but also very high maintenance. And being that our "maine coon" is very active in the WILD, and tends to leave our house for days doing who knows what, who knows where- getting all sorts of weeds, and burrs, and other foreign objects STUCK in his fur, we chose this year to have him shaved. This is kind of a big deal, because Dom is quite the ball of hair. See here:

I knew what to expect, because our cat "Scooter" has had this done- many times. They informed me they'd be doing a "lion cut" which would look GREAT on Dominic, as he has a mane, and already resembles a lion....with stripes. So $120 later- here is what I picked up from the vet:

Now, typically, they don't shave the WHOLE tail off.... but I suppose Dominic was a mess and they chose to buzz him down to the little fluff ball they left at the tip. Also, they left the shaggy fur on his legs and feet, making him look like he has little kitty Ugg's. But you can see how I would confuse This:

With THIS:

It seems as though Hillside Vet chooses the "popple cut" for the shaggiest of cats that come in.

(and all of a sudden all his stripes are gone?? I hope they grow back...)