Everything really IS bigger at Costco...

(or maybe Jack really IS underweight...)

Park City, Farmer's Market

The weekenders..

Last weekend we decided to do a "mini-vaycay" because we don't dare venture too far from Primary's. We spent friday and saturday night in midway, at our cabin. Upon arrival, I do the usual "check" before having everyone else enter- because there are often surprises. The surprises waiting for us THIS time were two-fold.

First...waiting in the middle of the floor, with no ability to walk, was a newborn baby mouse. Its eyes hadn't even opened yet, so more than the fear and disgust I experienced, was the confusion and mystery of HOW in the world it got to where it was. So I yelled for Josh and he picked it up with a paper towel. After showing Jack the cute baby mouse- we tossed it over board to "go back to its mommy....."

Then, I go to check out the bathroom (because there has been a bad history of things drowning in the toilets..) and flying around the room adjacent to the bathroom is a SWARM of bumble bee's. Not the cute kind- the big, furry, low-humming ones. There were about 30-40. At that point I lost a lot of the nostalgia I felt for the cabin and just about wanted to tear it down. Josh- again to the rescue, performed his own extermination. After about 5 minutes in there with the amount of Raid he sprayed, they were all pretty wasted and we got them all out. I took pictures of both of these surprises, but due to graphic content, I decided to put up cartoon pictures, as to protect the delicate eyes of those who are more "indoor" people:

Baby mouse:

Bumble Bee:

The next day- I heard a squeaking coming from behind a picture on the wall. Josh thought it was IN the wall, whereas I was pretty sure it was literally behind the picture. He pulled the picture off the wall and DOWN fell baby mouse number two. This one, like the other one was quite new to this world. But it seemed to have the strength to crawl around a little bit. After watching that for a minute, he was sent to join his brother. If you ask Jack, he'll tell you the baby mouse "fell". Which is true. With the help of Josh's arm.

On a lighter note, we went to Park City and did the Alpine Coaster a couple of times (thanks, Kate and Kev) and then went swimming and had dinner with Josh's sister's family. Jack loves his cousins- Soren, Cali, and Sawyer.

Good News

Today was our post op visit. (Yes, post operation. To which operation? Cause we've all lost track? It doesn't matter.)

We were able to rid ourselves of the oxygen tanks today. Which is a huge relief to all of us, and give Jack a better sense of freedom. Not to mention our freedom as well. In addition to that, Jack's picture looked good. Still, that little mysterious fluid/scarring shows up, but it is nothing we are worried about. Jack weighs 9.5 kilos. Which is about 20 lbs. He is tiny. So, so tiny. They took off his steri-strips that have been over his incision for weeks. We went down again on the diuretic's. His potassium still low. But all in all he is getting better and he is HAPPY about it.

We celebrated by letting him run around in the obnoxious chaos at Gateway. He never got too wet, because he's still very cautious about getting his incision wet. But he loved every minute of it and his smiles made my day.

Dear Criminal,

That iPod you stole right out of my car was a gift from my husband. So not only have you taken away my portable music, but the portable reminder of the love we share as husband and wife. I hope you enjoy my wide selection of music. Please listen to the following songs:

-Killer is Me (Alice in Chains)

-Been Caught Stealing (Jane's Addiction)

-Guiltiness (Bob Marley)

-Temptation (New Order)

-Don't Just take it away (Yo Gabba Gabba)

The sun glasses you are now sporting were my husband's that he chose himself in Las Vegas. He likes them alot. They are polarized. Really high quality stuff. Please use the case that you also stole, to protect them from scratches.

As for the garage door opener. Not only is it scary and disturbing that you took it, but it gave us incentive to set traps all over the house. So if I were you, I wouldn't come near us again unless you have a tetanus shot handy.

Enjoy your loot. And enjoy it now, because there is a special place for you when you die. Where they don't let you listen to iPod's. You may want the sunglasses though...

A Good Day

This morning I went alone with Jack to Primary's for his check-up. We thought maybe he wouldn't feel like we were all checking in there if we all went. He didn't have any meltdowns, and he was really good through each test and bounced back pretty quickly. The x-ray looks good- there is still a "small amount of fluid" that they aren't even sure IS fluid, it may be pleural scarring..something that will just be there forever. Nothing to worry about. But right now we are just keeping him on the diuretic's to see if it clears. His blood looks ok, the potassium is low, but not low enough for us to keep giving it to him. The chloride is low- so I think we'll bump it up with some salt and one less dose of diuril a day. He had a really good day.

We went to the zoo, as incentive- after Primary's. It was nice. Then we had a little lunch and drove around a bit to get a nap in. He played in the basement for a few hours doing his own thing with his own imagination, which is really good to see because it makes me feel like he can still be himself in spite of everything.

Now we are finishing up our potato fries dinner, and we are gettin ready for a walk.

I want to mention something that was so genuine and rare, something that restores my faith in strangers. Walking around at the zoo today I was approached by a sweet lady who asked me if Jack was my son. I said yes and she said "He is so adorable, he looks just great!" and I thanked her and told her he had just finished his 5th surgery and was recovering from a long visit at Primary's. She quickly said "he looks like he needs a present" and she handed over a bag that she was holding from the zoo gift shop. She hadn't gone and bought it for him, she had gotten it for herself or someone else and saw Jack with his little O2 tank sitting in his stroller with his fat free saltines and she turned it right over to him. It was a cute little stuffed animal. She told me good luck and kept on her way. It is so heart warming to see that kind of generosity and kindness come from someone who has never seen us or heard our story.

So thank you, to the nice lady that gave Jack that cute little Lemur. We'll always be reminded of your consideration when we see it.

Being home.

Once again, this blog is becoming more of my outlet, less of a entertaining read.

Jack being home is wonderful- I do know that. But it really hard, and very scary. With the history, it is hard to be like "oh good, we're home, life can get back to normal" because that is not the case. Jack is home, and wants to do "home" things, like eat macaroni and cheese, slide down his slide, go on trips, go up and down the stairs without cords chasing him. Sleep in his room without something that sounds like a generator running constantly next to his bed.

Sometimes he seems so sick that I feel like he is worse than when he was in the hospital. He is SOOO skinny, even his pajama's don't stay around his waist. He is so frail and weak, he looks like a malnourished little infant. It's really scary for me to watch him barely eat anything and then have to force down medicines that make him feel horrible.

However, there are good times. He wanted to swing on the swings today and really enjoyed it. We had a "picnic" outside our house by the stream and we fed the ducks. I took him to the store upon his request and he told me "Mommy! I feel better!" which REALLY makes me feel good, because it's straight from the horses mouth.

Sometimes I feel totally lost like I can't tell what is supposed to be happening, whether things get worse before they get better, or if he IS getting better. He's had a slight temperature around 99-100 today and I'm sick thinking about taking him BACK to the hospital, and experiencing his devastation to return there. I have to do that on friday for x-ray and labs...I'm not looking forward to that either. I think that this time around it is more of our heads that have been worked on than anything else. I'm hoping that all we need here is time, and that I can make it through however much time it is going to take.

Thanks to everyone who is helping, and everyone offering to help. I know it's frustrating when there is nothing you can do. I feel that everyday.

I'm hoping that friday comes and we have nothing but good news, and that we can go down on his med's. Because each time we take them he is reminded of the hospital, and I want him to feel safe at home.

Discharged.

Long story short, good x-ray this morning and labs show potassium is down again. So we came home on lasix 3X daily, Aldactone 3X daily, Diuril 2X daily, Potassium bi-daily and asprin. He is on .5 litres of 02.

Jack left the "demon" that possessed him- at the hospital, and is very happy to be home. He is doing ok with the fat-free diet (i say ok, because he's asking for the usual stuff he has here, pizza, mac'n'cheese..) and he is playing like old times in the basement and we've gone to the store, swung on the swings outside, and fed the ducks.

I'm tired. Very, very, very tired. And irritable.

So hopefully I'll kick back into my more creative, interesting blogger- that I know I am deep down.

But for now- so the masses know, Jack is home, safe and sound, and we are going to try to think positive, and stay home for good.

Better day.

So the potassium Jack choked down last night worked wonders, and it went from 3.0 to 3.7 (THANK YOU VERY MUCH.) Unfortunately he will still be taking the diuretic's, and it may get shot down again, but our nurse Dave, told us potatoes have more potassium than banana's, so Jack's been packin down potatoes all day long. He has had a fun day, as well as his mom and dad.
My mom let us leave today for a few hours, so Josh and I relaxed in the sun (me a bit too much) but it was nice. Jack had fun with my mom, and had many a visitors tonight...

As long as Jack tolerates his oral med's and he stays dry doing so, we will get closer and closer to going home. PLEASE, LET US STAY HOME FOR GOOD.

last night/today

I finally had a meltdown last night after Jack wouldn't even respond to me and was crying and screaming. It was like he was senial. It was horrible. But he HAD to take the med's.

Jack was "scared" into taking his medicine - as Josh and I left the room and the nurses forced down one, then we came back and he told me "Mommy, don't go away" and I got him to take potassium.

Afterwards, he ate a bit of dinner and was acting more himself. He wanted to watch fireworks so we went to the patio and while sitting there he said to me "Thanks for taking me to the picnic".

He warms and breaks my heart, everyday.

the rest.

Though it was really nice for all of us to get out, Jack was very down, very emotional, and sort of lethargic. When we returned, (which was devastating to Jack) we had to get a new IV (also devastating) and they drew labs. Jack's potassium is now shot down again, to 3.0. It is supposed to be between 3.6 and 5.2. When it is low it really take a toll on the body and it's basically like sucking the electricity out of something.

So they of course ordered that awful potassium that Jack won't take, because it tastes like seawater flavored gasoline, and they won't prescribe us the kind from the outpatient pharmacy that he DOES take. So I'm faced with this problem of getting this really important medicine into Jack, either by following the rules and forcing it down him while he struggles and cries- or go home, get the stuff he usually takes and sneak it to him up here and somehow explain how his levels went up to the doctor's. The nurse called the NP telling her that we can't do this to Jack and he most likely won't take it, and if he does he usually throws it up. She sent in two banana's and two things of gatorade saying he has to do that instead. Well, not only does he not like banana's, but he has no appetite anyway. They won't do it thru IV because it's a metal- and is harsh on the veins. He already screams and squirms when they put saline solution through his IV his veins are so shot.

So I talked to the nurse, telling her that we will give it one shot- maybe we can trick Jack into thinking it's the stuff from home and maybe he'll swallow some of it.... but I really don't know.

The New Meaning of Independence Day.

This morning I did my routine walk over to the computer while Jack was getting nestled in his wagon after his x-ray and I saw something amazing.... a GOOD, IMPROVED picture. I was truly suspicious, wondering if they brought up the wrong picture. But I was right. When the doc's made their rounds they were all obviously relieved and told me the x-ray was good enough to not put in the chest tube this morning. The diuretics are doing what they are supposed to and it is working. Unfortunately Jack wasn't aware of how lucky he was, and that he was allowed to eat- instead of being NPO (nothing per orem- nothing by mouth). Which he was all morning yesterday in the case that we needed to do a chest tube. Dr. Kouretas was relieved that he didn't push too hard to get the chest tube yesterday- he was about to. But we are all so glad that it is working itself out.

I'm taking this good news as "today's good news" and not getting my hope's up, because we really don't know what is going on inside of Jack. Hopefully this stays going in the right direction and Jack can stay healthy.

More good news: I asked permission to be allowed to leave with Jack. They are letting us go to our family fourth of July picnic. I'm hoping this will be a good thing for Jack, and not a bad thing, in that we WILL be returning to the hospital.

So, finally- something to hold onto, good news.

Groundhog Day.

Today they pulled Jack's chest tube. Not because things are great and we are getting ready to go home, but because there is trapped fluid in pockets, that the tube can't get. We learned this through an ultrasound today. They will be putting another chest tube tomorrow (this may the the 10th one) and they will be doing it in fluroscopy, where they can watch their movements live via x-ray and see where the pockets are.

We are doing all we can to stay positive and keep from falling into despair, but it is pretty hard. I do my best to stay happy and positive around Jack and keep him moticated to get better and to get home soon. I just hope that the doctor's stay on top of his case and make him a priority, as we are coming up on our 4th holiday in the hospital.

Jack is doing really well, and still has his adorable sense of humor. We love him and he is our hero.

Everything tomorrow starts at 9am. So I'll post tomorrow later on.

ugh.

"can I get back home?"

This morning was arduous. Jack's x-ray didn't look good. I always make a note to look at it so I know what kind of day I am in for. I see it before any doc's do. Our NP was upstairs when we got back and I told her it wasn't good- so based on my professional radiological skills, she called the IV team to come put an IV back in Jack (his went bad last night, so we had switched all his meds to oral) and she notified Dr. Kouretas- all before looking a the x-ray herself. That is how close I am to working here.

The two of them came in to a very frightened Jack, and Dr. K. told me he was going to pull back the tube a bit, to see if the fluid was just in a spot that the tube wasn't. So before that of course, we had to get a new IV, so we could get labs, get Jack medicated so he wouldn't feel all the pain while his tube was being pulled and be prepared to start him on more diuretic's. Jack is rapidly running out of useful veins, and the IV team had to poke him twice to get a good one. We started the morphine. Then right when he calmed down from that, Kouretas came back and in his technical, surgeonous manner- he pulled Jack's tube back a bit, then aspirated it over and over again and was able to pull out a substantial bit of fluid. So within 45 seconds of Kouretas telling Jack he was "all done", Jack was chattin' it up with him about this CARS bandaid's and how he wanted to go for a walk. So we walked around for about a half hour, then came back to the room for some breakfast.

Then it turned 7am.

"what does this all mean?" you all ask-

Well it isn't a horrible, horrible set back, but it DOES 'set us back' about a day or so. We need to leave the tube in and make sure that if there is fluid it can drain- that it will drain it. We also upped his diuretic's to dry him out a little more, and perhaps the tube will come out tomorrow. In my moment of complete hopelessness, Dr. Kouretas gave me a little pep-talk saying that this isn't a disaster, and that we are making progress but each time we "do" something to him, it sets him back from full recovery. But we are making our way there, and we won't be here for the rest of our lives...........

So he said 3-4 days. His words.