5th surgery down, -2 to go..

That's right. Our child who was supposed to have had three surgeries has now had five. It went great, Dr. K said that the right side of the diaphragm was "floppy", in an ever-so-graphic manner.. but said that he feels doing the surgery was the right thing and that this should take care of it. Jack looked great when we first saw him (despite the breathing tube) but soon got that pulled and did a super job of breathing through it, and making it successfully through extubation. He IS in alot of pain, because not only was he roughed up from surgery last week, but they went in the same incision and roughed him all up again.

His x-ray is astounding- the right lung is now fuller than the left, and has a great amount of space to fill, hopefully to give him higher saturations once he is feeling better, and gaining strength. Right now he is quite weak, and heavily medicated. He is on morphine, that his kind nurse is throwing out frequently, Bendedryl- and like a champ he took his lasix, aldactone, and motrin by mouth. Sweet, cooperative thing. So right now I'm hoping he is fast asleep- while we are home about to crash, ourselves. Here are a few pic's.

Conversation with Kouretas, 07:00.

K: "Wow he's satting at 90, that's pretty good."

L: "Well, he's on a half litre of oxygen and sleeping- and holding still."

K: "But still, 90, that tells me that he's improving."

L: "So you think this can fix itself? You've seen it happen?"

K: "Yeah, certainly. So, how do you feel his breathing has been?"

L: "Well he can't really get a deep enough breath to even cough, it's pretty short."

K: "Don't forget, he has an incision in his ribs that is very uncomfortable and it's probably quite painful to take a deep breath, so it'll take some time before he is able to do that."

L: "So you think we should just go home? Cause I'm not sure what I will feel like, not knowing what is going on inside of him and I won't know what to look for if he is in distress due to this.."

K: "Well obviously I don't want you to go home and feel crazy...and worry too much. So we could just do it, and be done with it."

L: (so, we ARE doing the surgery..)

K: "Then again, if he's satting in the 90's and seems pretty comfortable then that tells me this will only improve."

L: (so we AREN'T doing the surgery..)

K: "But I don't want you guys to go home and constantly worry about the future. It's really no big deal, we could just do it. And if we decided to, we would just do it today."

L: (so we ARE doing the surgery..) "You don't think we need to wait at all to see if there is more improvement?"

K: "The problem is, is if you wait too long, the diaphragm can stick, and would be harder to move if we did surgery later. How is he during the day? Pretty active, can he move around ok?"

L: "Yeah, he moves around just fine, but I can tell that he reaches a point where he used to have more energy and doesn't now."

K: "Well again, he just had a surgery and doesn't have all of his strength back."

L: (so we AREN'T doing the surgery..) "I'm just afraid of going home and not knowing what to look for in forms of 'this diaphragm thing is getting worse' and having to come back."

K: "Yeah and if you told me right now to just do the surgery I would think that was totally reasonable."

L: (so we ARE doing the surgery..)

K: "Let me go look at the x-ray again, review this a little more, and maybe we'll wait another day or something."

L: (so we AREN'T doing the surgery today..)

K: "I'll be back."

(approx. 10 minutes later.. 8 people come in the room and listen to Jack and watch him breath as he lies there sleeping.)

K: "So we're gonna do it this afternoon."

L: "ok."

END SCENE.

These- are the days of our lives...

So as I fully expected, they are looking to perform the diaphragm plication in surgery tomorrow, to fix Jack. (One and for all- please.) The procedure is "minimally invasive" but surgery is surgery and Jack just had two of them. So it's not exactly something we are thrilled about, but it is something necessary for him. We aren't 100%, because we need to wait for Kouretas to give Birch the go ahead- but I'm pretty dang sure tomorrow will be one of the days Jack HAS surgery.

In the meantime, here are a few windows into our lives right now.


(Jack can get bored. Bored enough to attach MORE things to him than there already are..)

(Kind of looks like the point of insanity...doesn't it..)

(This is his IV that didn't last long. He is now without IV due to his veins retreating from being poked too many times.)

(This is one of Jack's three "leads" that are always stuck to him to read his heart rate, respitory rate, and perferations.)

(This is his pulse ox that is always on his toe to show us his oxygen saturations.)

(This was the chest tube that went in his lower ribs all the way up to his colar bone. It was a monster. It's gone now. Next to it, was the little tiny cath. It's also gone.)

(This is the pump that his IV med's went through, like lasix, morphine...it's also no longer around, since his IV is gone.)

(This is the monitor his leads read off to. It is what we watch, all day long. Heart rate 115 (we like between 90-135). His respitory rate is 19, which is good. And his 02 is 86, which is what he was satting at at home without oxygen, before his last surgery. The red numers are his blood pressure.)

(This is the expensive contraption that the chest tube led to. This is how we measured how much drainage came from his chest, and what color it was...whether it was Chylo or not.)

(This is the wagon- that we hoard in our room, as wagons are of high demand. We take daily rides in it and use it to transport him to radiology each morning for his 6am x-ray.)

(This is nap time. A happy time for me.)

(This is Enlive, a nutritional drink that taste awful, but makes wicked bubbles when blow through a straw.)

(These are the vegestables Jack won't eat.)

(This is one of the nurses that though they say Jack is their favorite- HAS to be exhausted by the end of the shift.)

(This is a token that used to be a really fun novelty after getting x-rays, but has since worn off, and he'd rather just get on with it and go back to bed.)

(This is an awesome sucker that Nat and Keisha stole from a wedding and brought to Jack. I'm assuming it's fat free.)

(These are Jack's girlie friends that hesitated at nothing to jump in bed with him.)

(They all jumped in the wagon without argument also.)

(Three is never a crowd.)

So this is my life right now. Jack is actually being a very good sport. He (justifyingly so) does have his moments of "I've had it with ALL THIS!!" and can be very frustrating and uncooperative, but he's been through alot and we need to remember that he never asked for any of this and we all just need to be patient.

When I hear from the surgeons, I'll let you know the plan.

Good Morning.

Jack's x-ray looked the same, but they haven't said anything about the diaphragm yet today. The good news is that he got his chest tube taken out. It was huge. They also took out the cath, so he can't be medicated with it anymore. And- he's run out of veins to use so he has no IV. So all his med's are PO (oral) and he can't have any narcotics (morphine, toradol) so his pian will be managed with Tylenol, Motrin and Loratab.

That's really all I have for now... not much.

TGIF?

I just found out it was Friday.

So the surgeon on the floor today, Dr. Birch, called Kouretas and Kouretas said he'd like to wait before anyone goes cutting into Jack for a couple of reasons. One, because Jack is so close from just having surgery, and two, to see if perhaps it can fix itself. (how? I'm not sure, but I would imagine as Jack heals and gains back strength perhaps his right lung could start to fully expand and push the diaphragm back down??? I don't know. I'm no doctor, but I probably could be.)

So once again, it's the waiting game. We'll hang out here all weekend. Intermountain Healing Hearts, a support group we are part of, will be having a picnic here tomorrow. So it will be nice to see some people and put faces to comments..

They said that if Jack's chest tube dries up a bit more we can get it taken out tomorrow, which would be nice because he's be more comfortable and more mobile.

I want to say thank you to those commenting that have had similar problems related to chylothorax and the diaphragm issue. It is VERY nice to hear similar stories so we don't feel like we have extended ourselve so far out on the "it's not very common" branch. I appreciate those that are sharing their experiences.

Perhaps if we have a nice, quiet, uneventful weekend, I can get some pictures up and make this blog more colorful!

..and the saga continues.

This morning Jack's x-ray looked the same. That is perplexing because we have had fluid output from his tube, and they upped the diuretic's. So they're concern was that it wasn't fluid- and it was possibly his diaphragm. So we did an ultrasound, but due to his incision bandages they couldn't get to it. So we went to fluroscopy and they took a picture of him breathing to see if the diaphragm was expanding and retracting. It was very obvious when we saw it that the right side wasn't working.

Now what? Everyone asks. I think that is what is going on downstairs with the Doc's. When I asked Bonnie straight up what to do if it isn't working- she said surgery.

So I don't know if there are any steps to try before that, or if it is something inevitable to help fix the diaphragm. But right now we have no answers for anyone- including ourselves. Hopefully we'll talk to someone soon.

On a lighter note- Jack seems comfortable. He is playing with his tools, ate some egg beaters for breakfast, and his spirits are good.

Discouraging news..

Jack's x-ray didn't look good this morning. He is still accumulating fluid despite the chest tube draining, the diuretics and the fat free diet. I sort of panicked a little feeling like the last resort has failed us. But an NP assured me that they have "plans" they just don't address then until they get to them.

We upped Jack's diuretic's and hope that he will dry out. They are thinking of pulling the cath that he is getting medication through because though it helps him numb up in there- it could be causing some of the irritation going on in there.

Because we are still in the speculation phase of this news, I don't have much to say. So we'll just have to keep waiting to see what happens.

Late Night With Trent Jackson

I'm really, really, seriously considering changing Jack's name. He get called Trent, repeatedly. (I myself, have been called "trent" before.) I'm deciding between changing "Jackson" to plain old "Jack." Or, switching the names completely and having him be "Trent Jackson." That has a pretty solid sound to it.

Somehow a very strange mistake was made in the PICU and someone put on his vitals monitor that he was "Jaxon." No offense to anyone with that name, or the likes of it, but I don't want anyone calling him "Jax." It's weird.

Jack has adopted many a nickname here. I've heard "kiddo", "buster", "baby", "sweetheart" and my new favorite- "charger."

Why am I posting such a pointless, useless, unnecessary post? Because Jack slept from 12 to 6 today and isn't up for much rest. He did get up and eat a lovely self-made combination of green beans, fat free ranch dressing and corn pops. Later after that he started to hurt alot. A way I haven' really seen. So we got him some more medicine, and an hour later gave him the numbing medication through his cath, for the chest cavity, and by that time he was sitting up playing again.

So here we are, watching Gabba, while Jack stuffs corn pops into Wall-E.

Oh please.

One important thing I forgot to mention was that Jack is now on a FAT FREE diet. (hence, post title.)

For those of you who know Jack, there is no such thing as fat free. Not only that, but they don't even have a fat free menu here. We have to look at the low-fat menu and see what says "o grams of fat" and order that. That leaves us with about 8 things. Fruits, veggies, broth, a baked potato, corn flakes, cream of wheat, jell-o, and gatorade.

Yep.

On a lighter note Jack did well last night (despite bed 16's loud, screaming patient) and he looks amazing for someone who just had surgery. The NP came over to tell me that he is an "absolute delight" because of how cute and cooperative he was when she was examining him. She asked if she could listen to him and he said "Maybe go get me a drink first." Then she tried to feel his liver, and he said "Please stop doing that." She doesn't want to let him go- but we are scheduled to leave the PICU and go back up to our room that Josh and I have been guarding like wolves.

He is on lasix 3x, aldactone, tordal (a med between morphine and tylenol) and the medication going into his cath to his chest walls. He is being SO good- and tolerating everything around him so well. I have never been more proud, or impressed.

Stay tuned.

4th surgery down.

Jack did great during surgery and Dr. Kouretas really did a number on him. In addition to the coils they put in yesterday to close off the vessels that Jack's body decided to grow itself... Jack now has a whole bunch of little clamps in his lymphatic system that make his x-ray look like he has shrapnel inside his chest. All of these new additions to his innards are permanent, and we are hoping- is the answer to stop this pesky chylothorax.

Jack was in surgery for about 2.5 hours and went to the PICU extubated. He is on 1 litre of O2, mainly because all the trauma done to his chest walls and the incision in his side keep him from taking a full breath. He certainly is in pain. It is very obvious. However, he still has a sense of humor and is currently watching Wall-E and you'll hear him say "EEEE VVVAAAA" every now and then.

He is on morphine for the pain, and benedryl for the morphine (it makes him itch) and he has a large chest tube that is draining the fluid from surgery, and he has a tiny cath that is putting medication into the chest wall beween the chest and the lung, that will make it stick together and prevent a cavity for fluid to build up in.

As our doctor's tend to do- Kouretas is leaving town tomorrow, but as he said- he's done everything on his side, and now it's the nurses and doc's that need to get him well enough to go home. He will spend tonight in the PICU, Josh and I will go home to sleep. Then tomorrow we should move back up to CSU.

As I watch him push through this and listen to him ask for juice, ask for me to wipe of his cannula in his nose, and tell me his diaper itches, I am so proud of my little boy for tolerating this whole part of his life so he can have a better one. There is something about his demeanor that really makes me believe he is stronger than most 3 and a half year olds, and that only Jack Trent could fight this battle. He inspires me. I can't even comprehend how he is feeling right now, yet he is sitting up in his bed telling the nurses to watch Wall-E fly up into space.

I love that kid.

The Results.

Jack marched himself down to the cath lab and it began at 1:30. (remarkable..) They buzzed us around 3:30 and Dr. Gray explained the readings from the cath. The news was bittersweet. The heart function is good, pressures look great, and the only problem is that the left PA is small. Not narrow, small. And it should grow as Jack grows. That is all wonderful- however it doesn't present an obvious cause of the multiple pleural effusions. After the doc's bounced some theories off of eachother in front of Josh and I sitting there wondering what in the world they were getting at- they told us they'd talk to the surgeons and then get back to us.

Jack was in recovery screaming for me and fighting off the nurses holding his body straight, as you MUST lie flat for 6 hours after the cath to prevent bursting the arteries and veins that they used for the cath. Jack calmed a little and we went back to the room.

Dr. Kouretas came up in a timely manner and explained VERY CLEARLY what his thoughts were. He said there were 3 options, and described each, then plainly told us which one he thought was best for Jack. It is much easier talking to him than it is the little pack of doctor's that run in and out of our room. He has a way of explaining things in a way that we understand, without too much context and a confidence about him that makes us feel like the choice of what to do medically isn't left up to us... Love him.

So his decision was to do surgery tomorrow called "thoracic ligation" where he will tighten the thoracic duct to prevent the fluid from filling up and accumulating again. He says this should take care of the problem.

Though surgery wasn't exactly what we had in mind, after the fontan, we are comfortable with his choice and feel satisfied with the plan.

He will go in tomorrow sometime after noon. I'll let you all know tomorrow's events.

Not me! Monday..

Thanks to a fellow heart mom, who's writing is very much my style and I enjoy reflecting upon her witty posts... I am adopting the "Not Me! Monday" post. In this clever approach to appear wonderful and admirable, I will share the things that I would never think of doing, but DID do none the less- sometimes shamefully, sometimes with pride. Today's "Not Me! Monday" takes place at the hosptial of course.

I did NOT wake up this morning at 2:30am to the nurse "asking" me if I wanted to give my comfortably sleeping child some medicine...just to have her shut the door and wake him up. I did NOT look at Jack's face around 7am and realize it looks puffy. Then I did NOT look at his chest tube to find new drainage after his tube has been dry for over a day. I did NOT complain when the flabotomist couldn't get a vein to draw Jack's blood from and had to call someone else to come give it a try. Then I of course did NOT ask the nice elderly nurse we have today to LEAVE THE ROOM while I gave Jack his med's because she was distracting and her method of saying "Buzz Lightyear says to drink up all your medicine" wasn't exactly working...

Then I did NOT wander around the surgical floor looking for the resident to tell him about the new fluid, and really- I did NOT grab Dr. Kaza, one of the cardiothorasic surgeons and pull him into my room to show him this mysterious fluid and try and get some answers. Then I did NOT tell Jack that "room service is closed today" because he is NPO till his cath at 1:30 and can't eat anything till then...

That's my Not me, Monday. And it's only 9:30am, folks.

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.)