Buddy Walk pics

Even though Jax and I were stuck in a hospital room, daddy and the boys went to walk for Jax. We had some other people still come to support Jax. We didn't have the team that I originally planned, but like I said, I knew he wouldn't be there so I kind of gave up. Next year we plan on not missing it. We've yet to make it to a Buddy Walk in his almost 4 years. Yikes, thats sad.

The Buddy Walk mascott.

Jaxsons little team.

There was a huge turnout. So huge that you had to wait in line for two hours for lunch.

Jaxsons little buddy Justin.

Waiting to go under the arch to start the walk.

The back of the shirts. I realized that I didn't put Buddy walk anywhere on the shirts. Oh well, this was a trial run for next year. We have lots of extra shirts if you want one. Their 8 dollars.

I finally talked to ENT yesterday. Now I just need to call and schedule the surgery. All of his doctors agree this is the route to take. his cardiologist said it needs to be done to lower his pressures. The only drug that lowered his pressures in the cath lab was Epoprostenol. And they don't like to use it because they start it IV, and if you stop it or miss a dose the pressures can skyrocket. So its only a last resort drug. So he started him on Digoxin to help his heart pump effectively, and enalipril to vasodilate his veins. And of course the trach. Pulmonlogy and ENT agree. Me and Ray have already discussed it and I've even shown the boys pictures of our trached friends so they get an idea what Jax will have. I'll let you know what the surgery date will be.

We're home, but frustrated

We're home, but we left on a bad note, like we always do. We never had a care conference. They couldn't get everyone together. ENT was in surgery all day. We talked to people seperately, and ENT was supposed to come down after his day. Of course he never showed up.
They talked to his resident, who said the Dr. had left, and that he would come up. Well I didn't want to talk to him, he means nothing to me. So I went in the bathroom to pick up my stuff because I knew we would be going home, and the resident walked in and yelled HELLO. And then came over and knocked on the bathroom door! Can you believe that? What if I was on the toilet? He was going to sit there and pound on the door the whole time?
You know we've been wanting to move to California since we first got married. He's from there and has never felt at home here, and I've lived here my whole life and ready for a change of scenery and no snow. But now its become moving to get our child some decent health care. Our childrens hospital was number 1 in 1996, and in the last few years its fallen off the charts. We are not even in the top 25 anymore. That tells you something.
Anyway, I called my pediatrician and she said just to go home, and we would talk to ENT by phone. I believe we are going to go ahead with the trach. Everyone is in agreement that thats what he needs. I talked to his pulmo doc yesterday and she agreed. She said she hates trachs but there is no other option. Even if we could take his tonsils and adnoids out it wouldn't help the airway and the tongue problem. The trach lady came down and talked to us and eased all of my fears. She reminded me that he will always have an upper airway. He's not one of those kids that their face was totally smashed and the trach is their only airway. If his trach was to come out he could still breath so it wouldn't be an emergency. He can also still swim, you just cap off the trach. Plus she said it wouldn't be much more work than he already is. You pack up your g-tube stuff, your oxygen stuff, and now your trach stuff. Simply as that. The only thing that breaks my heart is losing his voice. I know I will get used to it and as time goes on he will learn to make noise around it, but I know I'm going to totally break down the first time he cries and I hear nothing.
So today will just be waiting for ENT to call, and find out when the surgery will take place. Here's some pics from our stay.

Just out of the cath lab.

That night extubated to bi pap.


The next morning off bi pap waiting to go back up to the floor.

Back to the floor, trying his hardest to get his hand out of that blankie to get at his face.

Big day tomorrow.

Tomorrow we sit down with doctors to decide. To trach or not to trach.
Can I just say I'm freaking out. I really need some encouranging words from trach moms. I think of new, dumb things every day. Like last night when I couldn't sleep I was thinking that he's had oxygen on his face his whole life. He looks funny without it. With a trach he wouldn't have it anymore. The not hearing his voice is still what is killing me the most. Everything else I can handle. I've taken care of trached kids a million times, but right now I want to see a kid with a trach up close. Its like I've forgotten and I need a reminder that its really not that bad. I need Parker to come over to my house so I can see him and listen to him talk around his trach.
I'm going to go over to Bella's blog and look at all her pictures really closely.
I can't believe how crazy this is making me.
I'll let you know what happens tomorrow.
whew.... I think I can, I think I can.

Whats new on the Jaxson front

Jaxson is doing good. They extubated him last night to bi pap. They took him off the bi pap this morning and his been fine. We came back up to the floor today, and we'll stay here until a care conference Monday, and probably a trach next week. The care conference is about whether or not to trach him, but ENT is already saying thats what needs to be done. So I'm pretty sure thats where we are headed.
We continue to have problems with our cardiologists like we always do. They didn't do what I thought they were going to in the cath. I thought he was going to measure his pressures and start some meds. But when I asked him what his pressures were he said that when he measured them they were lower because they had already started nitric. So we didn't even get a number on his pressures are going in. My cardiologist is now saying he thinks the swelling in his face is because he is on the ketogenic diet, which is an all fat diet.

Again, OMG

He is just pulling things out of his a$# to try to explain things. You would not believe how frustrating this place is to me. The only reason I still come here is because its all we have here. The only pediatric cardiologists in the whole state. We are now looking into doctors in California, since we want to be there anyway.
I mean, he's been on this diet for two years, the swelling came on in a matter of days, and only in his face and chest. His legs are as skinny as they were before. Plus its not like just eating junk food all day, it puts your body into ketosis, so you burn fat instead of sugar. Its not a fattening diet.
Anyway, I didn't see ENT today. But I guess he talked to the cardiologist and still thinks the trach is the best thing. I really hope this care conference is productive. I hate when I have to get pissy with people.
Daddy and brothers went to the buddy walk today. He couldn't believe how many people asked about Jax. People that he didn't even know, how crazy. I will post pics when I can.

He's done

He's all done. They were able to balloon open the SVC. Not completely open, but it brought the pressure above down by half. The bad part is we don't know if this will help or not. His upper body is such a mess of blocked veins that it could be other ones helping with this problem.
He is still intubated, and they just told me that they aren't even going to attempt to extubate him until ENT comes up and looks at him.
I will post some more pics tonight. He's doing ok, thanks to everyone's prayers.

Update

The cath lab just called me. He's doing fine. They are trying nitric and other meds right now to find the right one for his pulmonary hypertension. They think they are going to try and balloon open his SVC. I guess the pressure is pretty high above it.
I don't know if they are going to tap his effusion or not. He hasn't decided yet. I also don't know where he'll go. We are waiting in his room until we get word that he's coming back here or going to PICU.

Last night getting ready for bed

Going into the cath lab.
On the table, before mommy had to leave him.

He's in

They took Jax back about a half hour ago. I will post some pics of him going back when my hubby comes with my computer.
Is it bad when the anesethisiologist wants to know what his CODE status is? Meaning what are our wishes if something were to happen. I told him right now he is full code. But if that time comes we will make the final decision then. What a question to ask.
Since the trach has come up I get the feeling once again that people don't think Jax needs one more thing. I agree the poor kid needs a break, but does he not have a quality of life? I think he does. Yeah his smiles are very small and you have to look hard to catch one. And he doesn't do much eye contact because his vision is very limited. But you've seen him babble. He is a baby, he deserves everything. Its not like he just sits there and stares into nothing. He does interact. And although the trach terrifies me, and I still have a lot of questions to ask about it, its not that big of a surgery, and its not like he will be in pain with it, he will just breath through his neck instead of his mouth.
Ok, there's my rant, I'll update as soon as they update me.

Jaxson update

We got to our room this morning and its been pretty quiet. I was talking to Heather on the phone when ENT came in to scope Jax. He said scoping him won't really tell us anything because we know he has a small airway. But he did see that Jax already big DS tongue is swollen just like his face is. He said it is sitting right in his airway.

Point being..

He wants to trach Jax

O.M.G.

I knew it was always there, but now that the doctor wants to do it I'm freaking out. Will my babies voice be taken away? We finally got him to make babbling noises, will that be gone with a trach?
Its not a garantee that he's going to do it. We will see what the cath shows tomorrow, but he said he would rather trach him than take his tonsils and adnoids out. Because of the blood thinners he can't have his tonsils out. ENT said that if the clotting disorder is under control and it won't get worse and possibly take his life, then he thinks a trach is a good idea.
Well we already know that he hasn't formed new clots since being on the lovenox, all the clots happened before we knew he had the clotting disorder. Something that he's likely had since birth and we found it when he was almost 3. So he's clotted a lot of veins off in those 3 years.
We will have a care conference with all these doctors first, and palliative care team will help with that. ENT said that even if we fix the SVC, the swelling won't immediatly go down. It will be years before it goes down, and having these airway problems are causing the pulmonary hypertension and his heart to suffer. So he needs the trach.
I need to ponder over this tonight.
Tomorrow bright and early he goes to surgery. Like I said I will have the computer with me to update.
Thank you for your prayers. Trust me, I feel your hugs even from miles away!!!

Being admitted

We are being admitted tomorrow morning, a day early. Its just too difficult to try and accomplish everything we need to the day of the cath. Last night I had to put a mask of 5 liters on Jax. I didn't even know I had a mask, good thing I did. My ped wanted me to go in tonight, but they won't do anything this late so let me sleep in my bed one more night. Or at least be in my house, probably not asleep, since Jax won't let me do that.
Tomorrow ENT will come up to his room and scope his airway. The first thing to solving this puzzle. Then we have to decide if they are going to tap those effusions when they do the cath or not. I didn't want to go in early, but the more I think about it, it's a good idea. Depending on who the attending doctor is. Its better because I can discuss all of my concerns before things start. Like putting in a central line, expecially if they put chest tubes in. If its chylus fluid then they have to start a fat free diet. Well, you can't put a kid on an all fat diet on a no fat diet. So what they have to do is stop feeds and do TPN and lipids. You have to have a central line for that. I have absolutely no idea how long this stay will be. Maybe a couple of day, could even be a couple of weeks. One of my huge worries is his respitory status is so bad, he may be intubated for a while after surgery. My other worry is they are going to take one look at his airway and want to trach him. Yikes.
There are computers at the hospital and Ray is bringing up the laptop on Friday, the day of surgery so I can keep you updated. I'm very happy that Michelle is coming up Friday to hold my hand too. Please keep my naughty munchkin in your prayers the next few days, they could be lifechanging.

This and that

First of all I have to thank everyone that jumped in to help with our huge blankie load that came in. Either in donations or material, or your hands to help crochet. A huge thanks to Kristen, Heidi, Wendy, Alicia, and the Taylors. A special thanks to Barbara, who is the blankie queen that helps me so much. To Kristi and Julie, and the girls at the lab that help crochet the blankies. I picked up the rememberance blankies, and let me tell you they are beautiful. I'm very proud of them, and I'll post pics when they are completely done.

Here's a couple of new blankie recievers. Too cute.

And it is with great sadness that I announce that sweet baby Harley Jane has earned her angel wings. One of my favorite blankies to make, and a sweet little chubba baby. Pray for her young parents right now. Her story is also on the blankie blog.

My little munchkin seems to think that its time to wake up at 3:00 in the morning, and then sleep till 11:00. Sorry baby, your not a teenager yet. I tried to wake his little butt up this morning to try and break this habit. I put him on his changing table and changed his diaper. And he still continued snoozing away. Little stinker.

And I'm happy to say that me and daddy finally had a much needed date on Saturday night. We went to the RV show to dream about the RV we will someday have. And went to dinner. Oh it was relaxing.

A little bit of a blankie crisis

Jaxsons hangin in there. He is on an ungodly amount of oxygen still. He hasn't been on this much oxygen in years. He is on 1 to 1 1/2 liters during the day, and 3 liters at night. Normally they would be putting c-pap on him in the hospital by now. We are counting the days until Friday. Even though its going to possibly be a risky surgery, if he decides to try and balloon the svc. But he needs it desperately. We are watching chest x-rays to keep checking those darn effusions. The more I think about it though, I don't want the chest tubes put in before the cath. That would be two anesthesia's in one week. I'm already worried about how he'll do being intubated in this much respitory distress. Expecially if they bronch him and look at his airway.

I need your help again friends. I got bombarded with blankie requests over the weekend. (Good thing I didn't take a flyer to the hospital) A lady found the site, she runs an online thing were they try and spread cheer to sick kids. So seriously they have put down every kid they have to get a blankie. Don't get me wrong, I want every kid to have one that needs one. But that many requests at one time is daunting. I have a lot of helpers that I'm going to be relying on. So if you can help in any way please let me know. Any small donation to the blankie fund. Or even if you want to donate flannel. We use 1 1/8 yard to make the blankies. My email is laceyrugg@hotmail.com if you can help. Thanks again.

Some better news and some Dew Tour fun

I got some better news after talking to our cardiologist yesterday. When Jax had his AV canal repair they missed a VSD, so he still has a hole in his heart. Well the Dr. thinks that his pressure being so high on the right side of the heart is causing blood to shunt through the hole right to left. Meaning unoxygenated blood is going through the hole and being pumped into his body. The good news is it doesn't really make Jax work harder to breath, it just makes his sats lower. So the probability of him pooping out before Friday is small. He is working harder than normal to breath, and the reason is these dang plureul effusions that are back. The only thing that would put him in the hospital before Friday is if they get too big and they want to put chest tubes in and see what fluid comes out. Otherwise we wait until Friday for everything to get done.

Last night we got the great opportunity to take the boys to the Dew tour with Hopekids. I highly recommend looking online and seeing if there is a hopekids in your town. Their nationwide and its a group for families with kids with life threatening illnesses. For us its more for our other boys than Jax. As you know money is tight with medical costs, and the other boys always get left out when your time is consumed with a sick child. With hopekids we see all the kids movies that come out for FREE. Plus other fun things that are free. Its been a lifesaver. Go to hopekids.org and check them out.
Anyway, if you don't know the Dew tour is like the X-games. Its skateboarding, BMX bikes, and dirt bikes. Of course I knew my boys would love it.

They boys watching the skateboarding competition. Then outside the boys got to ride dirtbikes themselves. Here's Carter getting ready.

Mondo's turn next.

We are also still going to do the Buddy Walk. Daddy is going to take the boys and walk. We also have friends and family that still want to walk for Jax and we do still have the t-shirts. I think I will get a big pic of Jax for them to take and carry with them when they walk.

No Buddy Walk for us

I had a feeling this would happen. I guess thats why my excitement for getting a huge team together has dwindled in the last few weeks. Jax surgery has been rescheduled for next Friday the 25th. Our Buddy walk is Saturday the 26th.

I just hope Jax makes it to next Friday.His oxygen need is now up to 1 liter during the day, 2 liters at night. We got our bi-pap, but he is still desating. Its so frustrating, its got to be something with the home setup. He does fine on it in the hospital. Its also frustrating because I think it would help. My concentrator is pediatric so it only goes up to 2 liters, and he actually is barely satting 88 at night on the 2 liters, and ideally we want him above 95 because of his high pulmonary pressures.

His chest x-ray Wednsday looks worse. We can't quite figure out whats wrong. Could the SVC be suddenly causing all this? Is there something else going on with his heart now? His plureul effusion is back and bigger. I'm wondering if when his cardiologist see's that if he's going to want to put a chest tube in and see if its chylus fluid again. This morning my ped is also calling our pulmonologist to see what she thinks of all of this. I'm just worried at how much more he can take before he tanks. Hopefully before this weekend we'll have some news, besides waiting until next Friday. Because like I said, I don't know if he'll make it until then.

More blankies

I've been slacking in the blankie department. Not that Jax has been keeping me busy with medical problems or anything. I'm actually caught up on the blankies that have been requested, just not doing a good job advertising. I'm deciding if I dare take a flyer up to our PICU. I'm a little worried that if I do that I will get bombarded with requests, so I want to be totally caught up before I dare try that. I do have many helpers though, so I think we would be ok.
The look has changed a little. I bought blue and pink ribbon that I wrap around every blankie before it goes out.

I also am FINALLY almost done with my rememberance blankies. I feel horrible. One mom has been waiting since March for one. I had a really hard time finding a place to embroider them for me. Every place wants high volumes so if you only have a couple they charge an outrageous price. I'm actually lucky to have found the person I did. I just happened to ask the clerk at the Fabric Center if she knew who did them. She just happened to know a lady that has a machine in her home, and she agreed to do them for me. Wahoo. I can't wait until their done so I can show you how precious they are.

Just look at this cute boy. His name is Riley. He is on the blankie blog right now!

Happy boy

Jax has been talking up a storm this morning. Here, I'll translate a little for you.

Mom, I'm sorry I am keeping you up ALL NIGHT, hopefully getting my bi-pap today will help me sleep better. I love you mommy.

And don't forget to join Jax buddy walk team. Don't worry about donating, I'm not concerned with raising a ton of money, just having a great team for Jax. If you want a t-shirt let me know so I can order you one. Remember you don't have to be here to walk to join his team and get a t-shirt. I've been slacking with it because of everything thats been going on with him, but I still want to have a great walk. Click here to join.

LATE UPDATE

Ok, I guess you can't join his team anymore, its to late, now you have to do it on the day of the walk. I told you I was behind this year. So just go check out his page for fun.

The plan for Jaxson...kind of

I'm going to try and explain what we are doing with Jax. I want to explain it all, and go in order, so bear with me. I don't have full details yet, I was expecting a couple of doctors to call today and they haven't yet. But I thought I better clue everyone in because people keep asking.
You know he had the MRI and it didn't show anything we didn't already know. You also know that for some reason our cardiologist now thinks he may be able to balloon open the SVC. I sat down with my ped on Friday and we had a long talk.
There are some main questions. What is causing his increasing respitory distress that is in turn causing his pulmonary pressures to be up? His cardiologist doesn't think its the SVC. But we think its secondary to the SVC. We think that the extreme puffiness in his cheeks and neck are causing his airway to be more closed off. Of course that would explain the respitory distress.
Our cardiologist definitely wants to take him to surgery to measure pulmonary pressures and look at his pulmonary arteries to see if they are narrow. And get a general look at his valves and remaining VSD. He then wants to measure the pressure above and below the SVC. If the pressure above the SVC is more than 2 or 3 millimeters higher than the pressure below, he will try to balloon it open. So we won't know if he is going to balloon until the middle of the whole procedure. If the pressure is not higher, then its not the SVC thats causing the puffiness. He has other major veins in his upper body that are blocked, that could be causing harm as well. Plus, there are some major risks if we decide to try and balloon it. I've said those before too. A clot could break loose and travel to his heart or lungs. If the SVC is not the culprit,we can then decide if we want to go to Boston and have them look at those other veins as well.
My ped has gotten a team of his cardiologist, pulmonologist, and ENT. They want ENT to bronch him while he's under and look at his airway to see if its more narrow than usual. I'm praying they don't want to trach him if its narrow, but if its causing respitory distress and high pressures, than we have no choice.
I'm waiting for cardiology to call me so I can ask some more questions. I think they are going to have to go in through his groins and also his upper body to get the pressures below and above. This is probably going to be a long surgery. I called today to schedule, and the earliest they had was Oct. 22. We scheduled it but I'm going to talk to his cardiologist about moving him up. I know he wants to start meds that he has to start while he's in surgery, and I don't want his respitory status to worsen over that much time. I'll let you know when it gets scheduled.
We are also going to try bi-pap instead of c-pap since he was desatting. We are hoping this will help. I remember when he was in the hospital he was always intubated from c-pap. Only bi-pap he was able to come off of. Pray it works, I don't know what we'll do if it doesn't. I had to turn him up to 2 liters Saturday night to keep his sats above 90.
So there you go. I hope you understand it all, I'm still trying to myself.

Jax with his monitor that nowdays is permanently attached to him. You know he never keeps his O's in his nose, and his sats plummet when he pulls them out.

The boy and his puffy face.

Little miss P's birthday party

Last night we went back up to the beautiful mountains, to a huge house with lots of property for the boys to run, for miss Preslie's birthday party. The boys had a blast and I don't think they even stopped to eat dinner.

Jaxson trying to take it all in.
We hung out with Mr. Justin. That boy is so fun to take pictures of. He is such a ham and makes some great faces.

Miss Preslie opening her birthday presents.

Finally a blankie picture

I've sent out like 10 blankies in the last three weeks and have yet to get a picture from anyone. Today I finally got one. Yeah. Go read this tiny warriors story.

Tomorrow we are going to girlfriend Preslie's birthday party. Can I just tell you how much fun it was buying girl stuff. Oh yeah, I never get to buy girl stuff so I went just a little crazy.

We have a plan set for Jax. What does that mean? Another surgery.

Yep, thats right. This one will break the double digit mark. Surgery number 10. I will go into the whole plan in another post because its long and confusing.

So I'll just leave you with a picture of my own tiny warrior.

A post I've been dying to write

I've dying to write this post, but waiting until it was official. Paul Cardall got his long awaited heart! Our prayers have been answered. I've known since the heart came in and have been dying to write about it. Jax buddy Max, who just had his heart surgery, was right across the hall from Paul. She emailed me on Tuesday night saying there was a lot of activity around his room and when she asked the nurse if he got his heart she gave her a wink!
I had just been listening to one of his CD's that Ray had just bought me, and was planning on taking a blanket up to his daughter Eden while we were at the hospital when I got Kristen's email.
When we went up for our MRI his room was empty. So I took the blankie to the PICU and left it at the front desk since he was still in surgery. When we left he still wasn't out so I didn't know how it went, and have been checking his blog every few minutes. This morning his wife finally wrote the post. Go over and send them your blessings.

Jaxson's cardiologist emailed me this picture of his MRI last night. The arrow points to the place in his SVC that is narrowed. You can also see how big his heart is, it takes up a lot of space in his left lung. He wants to do the cath, measure the pressures, and maybe balloon it open. Its still really risky because they could knock a piece of the clot loose and it could travel to his heart or lungs and that would be disasterous. He could also nick a collateral and cause catastrophic bleeding. So we have to decide what to do. Ugh

Also, tell me if this wouldn't make you crazy, one reason why I think they are wishy washy with me. I forgot to ask him if he wanted me to keep his sats above 95 because of his high pressures. The nurse paged him and he said, "the higher the better, but don't go overboard" What the heck does that mean? If I have to turn him way up to keep his sats above 95, shouldn't I take him in to see what the problem is? Sheesh.

All done

Sorry I didn't post today. I not only forgot my camera, but didn't have time to pack up the computer either. Jax did great today. It seemed to take forever, because they took their sweet time extubating him because of his history. You know I think this is the first time he's extubated and gone to post op since his g-tube in 2006.
The lung perfusion scan looks good. No clots in his lungs. There is no report on it yet but my cardiologist said it looked good. The MRI doesn't show anything that we didn't already know either. It showed his blocked SVC and the other blocked veins in his upper body. He thinks he still wants to take him to the cath lab, measure the pressures, and now he's wondering if he can balloon open the SVC himself.

OH...MY....GOD

You mean to tell me that we have wasted 2 months getting a hold of Boston to now say you may be able to do it yourself. I don't know what to say. I almost want to still go to Boston even if he gets it open just to get a second opinion on Jax as a whole. We've had some major trust issues here and so I would like to see the best cardiologists in the country. But we are not saying its a no go yet because our doc may not be able to do it. I don't know, once again I'm more confused than not.

Ugh, at least Jax did well today and we are back home tonight.

Procedures tomorrow

We check in to our house on the hill, same day surgery at 9:30. At least its not 6 or 7. The MRI is scheduled for 11. They will do the MRI and then wheel him accross the hall to nuclear medicine and get a perfusion scan of his lungs. Our Cardiologist is hoping the MRI will also get good pictures of his veins so we can send it to Boston and not need the veinogram.
This is supposed to be a same day thing, but I talked to the nurse today for our pre op stuff and gave her my concerns. She said to bring a bag because it sounds like he will be staying the night. His respitory status being worse and his pressures being so high I just don't know if he'll extubate. We will just pray. So pray for Jax that he does well tomorrow. I will keep you updated on what goes on throughout the day.

Home from a relaxing weekend

We're back from our weekend in Park City. It was so relaxing. Even though we did stuff everyday, we were away. I do feel much better, although I still just feel rundown. And my energy has yet to come back, which is still making me crazy. You'll be happy to know though that I did get an appointment with my doctor for Oct. 1, so I'm not totally neglecting myself.
On Saturday Ray kept all the boys and I went to Swiss days with my mom and my aunt. Swiss days is like a huge boutique, celebrating the swiss that live in that valley. That was what I needed. To not be a mom for a day. Sunday we went shopping at the outlet stores, (got some great deals, of course) and went to the alpine slide to play. The alpine slide is a huge slide that goes down a mountain. You take a ski lift to get up there and then you ride these sleds down a track. They also have a coaster, which is the same thing but it sits on a track, and you ride up the mountain in the coaster. That was a great time too. Today before we came home, we went to visit Michelle and see her house. Then we went to a great mexican restaraunt before coming home. We didn't take hardly any pics this weekend. I don't know why. Relaxing to much I guess. I did take this one of Carter and Jax in the condo.
These pics are from Michelles house. Check out that view. I could wake up to that every morning, but only in the summer. I can't imagine winter at her house. They literally live in the mountains, its breathtaking.

Preslie was doing some serious checking Jax out time. Look at that face. Jax face looks the biggest its been yet.

I had to stick this one in because I thought it was so cute of her beautiful blue eyes.

Jax is having an MRI of his heart and lungs on Wednsday. I'm not too excited about that given his current respitory status. I don't know if putting him on the vent for an MRI is a good idea, we might have a hard time getting him back off. Not to mention the IV problem. This is all done down in MRI and not in the OR, so we'll see how it goes. Its supposed to be a same day thing, but I'm not sure if they'll even get an IV to get this done. It will take a week to get the viagra approved, so he wants this done in the meantime. I'm not quite sure what he's looking for. I know he wants to see if there are any clots in his lungs that we haven't seen before. I just can't wait for my ped to get back on Wednsday. She's been gone this whole time and doesn't have a clue on whats going on. I really need her advice. I know she'll be happy to get home to her favorite client ;)

Echo results

We had our echo today. Didn't take the camera, forgot, like I'm forgeting a lot these days.
I'll just say I think I'm more confused today than I've ever been. Our cardiologist came down to talk to us about the echo. Even though my ped ordered it, she' s out of town until next Wednsday, and I'm not waiting until then.
His pulmonary pressures are double what they were in March, and his valves are both leaking more, that would explain the heart failure. But my cardiologist thinks some of the puffiness may be from this and not the SVC. I don't think so, just because the puffiness started back in March when we found the SVC, and his pressures were lower then. He is deciding whether or not he wants to take him to the cath lab here, before we go to Boston. He can get an accurate reading of his pressures, and I guess the med they like to start them on for PH (calcium-channel blockers, like amlodipine) can sometimes make them worse, so they like to try it in the cath lab before starting it. But he is going to talk to our case manager and see if our insurance will pay for viagra first. The other med is cheaper so sometimes insurance won't pay for viagra unless you've tried the channel blockers first. So if we can get the viagra then we will start that and not do the cath for now.
Also he is going to call the cardiologist in Boston because he's not sure the cardiologist there has been contacted about Jax. A cardiologist needs to do the SVC work, not just an interventional radiologist. I feel like I'm back at square one with Boston. And my brain is spinning about what needs to be done with Jax right now.
I will be gone for the weekend without internet. I think that may be good. I use this as my vent as most of you know a little what I'm going through, or just have great ears to listen to me and I can get out my frustrations. But I've hit a brick wall, and I'm flat on my face right now. In the 3 years I've had Jax I have just now finally hit my breaking point. I think thats pretty good, three years is a long time and a lot of crap has happened in that three years. I woke up yesterday with major sinus stuffiness. So that knocked me further down. I literally don't have the energy to walk up or down the stairs. I got into my doctor, but not until the end of September, at least I made the appointment. Huge step for me. I'm trying. I just want my energy back, it makes me crazy to be so weak, because I know I have so much to do.
We are going to Park City for the weekend. I'm hoping this will help. No homework, no appointments. We will be playing with Michelle and Preslie all weekend and enjoying the mountains. I just hope I have the energy to play.
Again thank you all for your prayers and your listening ears.

More Jaxson and Paul Cardall

Jaxson is staying as stable as he can be. He is home, and thats what matters. We have an echo on Thursday, can't wait to see what that shows. We've given a couple of extra doses of diuretics, but we'll have to see what the echo shows to see were we go from here. Mondo is really struggling all around. He gets worse when Jax gets sick or goes into the hospital. He is way behind in school, so we may be putting him in resource just for this year to get him caught up to go to junior high. Also we are getting him back into counseling. I just think it would be nice for him to have someone to vent too besides mom and dad.

One of our Healing Hearts friends, Paul Cardall, is desperately needing that call that a heart if available. You probably know Paul, but he made this video a while ago. I was waiting to post it because Jax defect is wrong in the video. It's my fault, I don't know what I was writing that night. Its to raise CHD awareness. Did you know its the number one killer of children? But I wanted to show it, and ask for you to pray for Paul tonight, that his heart comes soon so he can get healthy and get home to his beautiful wife and daughter.
The video has his beautiful music with it. I highly recommend his CD's. They are expecially good for babies. I bought one and play it in Jax CD player at night while he is going to sleep. He seems to love it. They are also great hospital CD's when their confined to a bed all day long.
So when it gets to Jax, his real defect is AV canal, PDA, and pulmonary hypertension