Update

We had a CT this morning, which has good and bad news. The good news is there is no pulmonary embolism. Bad news is he does have a clot in his superior vena cava, the big vein that goes back into the heart. They called cardiology to come by. Of course they didn't have anything meaningful to say. They said to call hemo. So hemo is coming by tomorrow. The goal is to get them to order an echo. The cardiologist think it may not even be a clot. Just a narrowing of his SVC for some reason. But he's got a bunch of collaterals around it. I still think he is in some heart failure and I also want the echo to look at his function, but the echo will also show if there is a clot or not.
He is having some funky heart rates. I mentioned this to my doc. I could kind of see it on my pulse ox. But it jumps all over the place. Cardiology did see it and still had nothing meaningful to say. We'll see what happens tomorrow, if the echo gets done or not. Then I may have to call my pediatrician to do some screaming if we don't get what we want.
If there is a clot there, then we have to wonder why he is still clotting on blood thinners, that makes me really nervous, because he could potentially have a pulmonary embolism in the future.
I will update tomorrow when I know some more, thanks for your prayers.

Many sigh's

We are back at the big house. I like to call it that because I feel locked up with nowhere to go. We got admitted last night. They think he may have a pulmonary embolism. We just had a CT this morning and I'm waiting for those results. I have no idea whats going to happen after that or how long we will be stuck here. I guess it all depends if he does have an embolism or not.

I guess the good news is all of these hospital stays in the last couple of months is really making me look forward to vacation, and I think we will enjoy it that much more.

Not for the faint of heart

I asked this mom if I could repost these poems that she wrote for her little girl Charlotte. She had trisomy 16, and was not expected to survive. But she lived to be a big 3 1/2. She just passed away Saturday from RSV. This first poem she wrote in January before Charlotte passed. Its so cute and it hits home with so many of us. Read it and you'll see.

Goodnight Boo

In Boo's room all painted in pink

there is a feeding pump with lights that blink

and alarms that ring if the tube has a kink.

And an IV Pole and a feeding bag full

of Pediasure, good for body and soul.

And an air purifier and a humidifier

and a pulse oximeter with 5 feet of wire.

And a night stand and a floor fan

and a red lit probe taped to Boo's foot or hand.
And Breath Right Strips and Tender Grips

and Albuterol and Tylenol

and a princess night light shining down the hall.

Goodnight Boo.

Goodnight to all your special things too:

Good night wire, and humidifier

Goodnight fan and IV stand

Goodnight Grips and Goodnight Strips

Goodnight meds like Prevacid and

goodnight to pumps that keep you fed.

Goodnight to steady vital signs

Goodnight to tube and probe and lines
Goodnight to blinking lights and beeps

Goodnight to Boo, now fast asleep.

Isn't it sweet? I will post the other one tomorrow. She just wrote it for her funeral, and trust me, you better bring the tissues.

Another happy customer

This is sweet little Dillon. You may know him, his blog is on our sidebar. He is having a g-tube placed in a couple of weeks and just recieved his blankie. Isn't he so cute?

I love showing pics of these kidos with their blankies.

An update on Jax. He acts like he is feeling better, but he is still super puffy and his oxygen needs aren't coming down. I'm more concerned that he is in heart failure. Tomorrow we will go in and weigh him and do some more blood work, also get an ekg. I think I'm seeing wierd rythms on his monitor. Plus when he was in the hospital his monitor kept saying he was having PVC's. Then our doc is going to call the cardiologist and see if we can get him up for a stat echo. Tomorrow we should have some more info as to what needs to be done. If he does need heart surgery hopefully it can wait a few months. We really need our vacation and I don't want to give that up, we can push it back if we need to, but I don't think they will touch him with a ten foot pole with RSV. We will just have to wait and see if they can start some meds and hold him off for a while.

Doctors visit

We took Jax back in today. He is up almost a pound, which normally would be great news. But he hasn't gained a pound in the last year, let alone the last week. So that means it is all fluid weight. We did a chest x-ray, which did show that his heart is larger than the x-ray last week, but his lungs don't look a whole lot worse, but his oxygen need has gone up a tiny bit more to 1 1/2 liters. This sugests that he is in a little bit of heart failure.

I thought we were going to be heading up to the hospital for a stat echo, but the cardiologist doesn't think its necesary (spelling) yet. We are going to up his dieuretics a little to get some of the fluid off. I don't trust the cardiologist's that much. We have had bad experiences with them before. For some reason they don't seem to pay that much attention to Jax. There are other kids up there that they seem to bend over backwards for, and sqeeze them into surgery whenever they need it. But they let Jax sit on the ventilator for 4 months because they said the schedule was full. Bull crap, you can't tell me there wasn't a kid at home scheduled for surgery that was not as sick as Jax that they couldn't bump.
Sigh
Ok, I'm done ranting. Luckily our pediatrician is on top of it and she knows how to get things done. We will go back on Friday and recheck his weight and an x-ray to see if the extra dieuretics are working. Because he has a valve that is barely working, having RSV has put a lot of strain on his heart and it is working overtime. But I'm sure they won't go in and replace his valve until he is so sick that a machine has to breath for him.

I'm really not bitter, Uhhm

See how puffy the bottom of his face is? And its hard to see but his eyes are puffy too.

Gavin's blankie

Here is sweet little Gavin with his blankie. Gavin is special to me because he is so much like Jax they could be twins. He also suffered a brain injury and can't sit up or hold his head up. Its like my same story in a different state.

A quick update on Jax. I'm taking him in today, probably get another chest x-ray. The crap is finally coming up. I sucked out some major junk this morning. (yummy, I hope your not eating while you read this) His oxygen need is up a tiny bit to 1 1/2 liters. We'll see how it goes and what the plan is.

Still home

This is so wierd. I still don't think this is RSV. He is not needing suctioning. He's been more snotty with small colds than this. So then why is he still needing 1 liter of oxygen? That could even be heart failure. Oh God, praying thats not what it is. I haven't been able to get him off the 1 liter for 3 days. We may have to do another chest x-ray and see what that shows.

The only thing that makes it sound like a cold is he is coughing. And my doc said he's swallowing a ton of air when he coughs and thats why his belly is big and why he is gagging and wretching. He still didn't sleep last night. I think I'm getting used to no sleep because I'm not even tired anymore.

But look what came in the mail yesterday.

I enlarged it so you can read it.

We always wear matching t-shirts when we go to Disneyland or other parks so we can find each other. We thought why not raise awarness while we are at it. We had these made at cafepress.com. That is a great site. They have down syndrome shirts and autism shirts that we are going to order as well. The other boys shirts say My brother was born with CHD, and ours say son. Isn't it cute?

Oh and also, we just changed feeding pumps. I have 7 bags left over from my other pump. I know there a lot of you that have that pump, and I don't have a lot of bags left. So maybe the first person to message me I will send you the bags. Its a 5oo ml bags for the Zevex Infinity pump. So let me know, I have gathered so much crap that I can't send back and I can't use. Its filling Jax room up.

Jax update #2

I was so right.

Jax has slowly gotten worse since we've been home. I knew as soon as we walked out the hospital doors it would happen, does every time. Its like he knows doctors are around and he has to be good. We checked a blood gas today and its not to bad so we are still riding it out at home.

Don't think I'm a bad parent for keeping him home when he is so sick. There is a really high risk of me needing to call an ambulance for him if we stay home, but we know what to look for and we are watching him closely.

I still didn't sleep last night, because Jax didn't sleep. I am a walking zombie. Oh well, life goes on.

Home, for now

Well we came home. For now. I'm so tired I can't even see straight. I think this is the most tired I've ever been being in the hospital. I don't know if it was a false positive for RSV, or the brunt of it is still coming, but this is definitly not RSV right now. He is still on 3/4 of oxygen. And when he gets mad or starts coughing he turns blue as blue. But he is not needing a lot of suctioning, and he's not super junky. Thats why I don't think its RSV or we are still early in it. Usually with RSV he's sick for 2 or 3 weeks, and this is barely day five, so we'll see.

Its so hard when you have everything at home that you need, because then you don't know when to bring him home. A normal child wouldn't be able to go home until they were off oxygen, but because he's on oxygen anyway, we can do it at home. I am so tired and can't take another night of no sleep so we are home, watching him closely. Its a strong possibility that we will have to go back, but I'm willing to do that to get a couple nights of semi better sleep (depends on if Jax sleeps, he didn't much in the hospital). He's gagging like crazy to, so I'm going to call my doc and see if she will call me in some zofran.

Keep praying, we are not out of the woods yet.

Update on Jax

Jax is doing ok, he's still holding his own. He coughed all night last night, and had fevers all night. But his oxygen need hasn't gone above a liter yet. He keeps gagging and wretching and I'm afraid he's going to rip apart his newly fixed nissen. Thanks for all the prayers. So far they seem to be working, he hasn't gone downhill yet. And hopefully it will stay that way.

Another brave hero passed away this morning. My good friend Julie who has Ariana. A little girl that she knew that had Trisomy 16 passed away today. She was 4 years old. Its super hard on Julie because there are not many trisomy 16, 13, and 18 kido's around, so they had a lot in common and it really hit home for her. Pray for her family that they will get through this.

Here's some pics of Jax

admitted

Yep were stuck. After I got him to the ER early this morning he started to perk up, and I was quick to say let me take him home and watch him some more. But they reminded me that we haven't seen the worst of it yet, that we are only a few days into it. So we waved the white flag and gave in. Right now he is on 3/4 of a liter, but he sounds horrible.

Since I don't have any pics of Jax yet here is one of our blankie recievers, Carson. He loves his Thomas blankie.

I'm going to go shower and try to function. I will update on Jax later.

Oh crap, its RSV

Thats right, he is RSV positive. Our streak is over. Its now a matter of time before we head to the house on the hill. I'm waiting as long as I can. Right now he is not horrible. He's on 3/4 liter of oxygen, but we are only on day two and RSV peaks on day 8. I am going to probably take him tonight. I know it sounds horrible but I want to take him in when he is a little worse so they will put him where he needs to go. Last time he had RSV they waited so long to transfer him to PICU from the floor that he tanked and we were running to the PICU to be intubated.
I'm hoping that if they can get him on c-pap right away we may be able to avoid being intubated. Keep your fingers crossed.
So I am going to go pack some stuff so I'm ready when its time to hit the road.

Good vibes needed

I think our streak of avoiding RSV or influenza might finally be over. Jax is sick. I took him in yesterday, his chest x-ray looks worse than usual.
Last night during the night I had to turn him up to 2 liters of O2. Then I couldn't sleep because I was debating if I should take him in to the ER. If he goes above a liter he needs to go on c-pap because he will quickly go downhill. This morning he's down to a liter but thats still way above his 1/4 liter baseline.
They did a VRP yesterday so if it comes back RSV than I know this is going to get worse instead of better. Send your good vibes this way that it doesn't get worse. I'm going to watch him for the next couple of hours and see what he does so I can decide if we head to the house on the hill or not.

Jabbering babies, and lucky bears

We are getting the storm that's coming from California. But we get snow instead of rain. I'm so ready for summer.
I think we might start Tanner on anxiety meds. He had a really bad day at school today. It's not getting better so I think we will give it a try. Does anyone else with an autistic child have them on anxiety meds? I don't know what they'll put him on.

I was soo sick yesterday. I think it was food poisoning. It didn't feel like the flu. My gut was just screaming. I don't know where i got it from because no one else in my house is sick and we all ate the same stuff. I feel better today, just a little queasy.

Jax was jabbering away today. Of course as soon as I turned on the camera he stopped. Oh well, its still cute to see him.

Guess what came today? Our lucky bear, yeah. Carter helped me stuff it and when he made his wish on the star before putting it in the bear he said. I wish for Jaxson to never get sick again. Ohh so sweet.

Its so cute and soft. Plus it goes toward Pheonix and their fight to cure Cystic Fibrosis. Go to his site and buy one today. phoenixsfight.blogspot.com

Sunday's

Sunday's are usually pretty low key for us. It's the day where we go walk around the mall or just stay home and do nothing like we did today.
This is little Ariana. She is Jax girlfriend. She came over and played with us on Friday night. We met at the pediatricians office. Ana has trisomy 13, if you don't know what that is its because they usually don't survive. So she really is a little miracle girl.
Jax has been good today. We changed his formula a little to hopefully make it a little easier for me, and for when we go on vacation we don't have to take 4 different cans with us. Now its just ketocal with polycose. I still have to make it in the blender, but it's half the work. We are also going to start transitioning him to bolus feeds. I don't want him on continous when we are on vacation.

Every Sunday we watch America's Funniest home videos with a bowl of popcorn. We've been doing this since the Bob Saget days. (Don't you love it)

We had a fantastic date last night. The only bad thing was the movie we wanted to see, Taken, was sold out and the only thing starting was Friday the 13th.

Great Valentine movie huh.

It was as dumb as the original ones done in the 80's. Its totally predictable, and totally degrading to women. I guess if the women are dumb enough to do the movie. Why do we have to have women's breasts in these movies. ( I guess so people will go see them) But it was still a great night.

Happy Valentines Day!

Happy Valentines day to everyone. Jax had a big poopy yesterday, so we are sticking with the Suppositories every day. They think his bowels are being slow from surgery. Jax girlfriend Ariana come over to play last night while her mommy and daddy went on a date.

Its snowing here, of course, I'm so ready for spring. Me and my hubby are going out tonight for valentines day. Yeah, no kids.

Have a great day!!

Grouchy mommies and babies

We are having more grouchy days. Jax is not pooping even with suppositories. So we have to give him liquid suppositories every day for now. That is so not good for the pooper. After a few years of a lot of suppositories and the pooper will be permanantly damaged. It happens to a lot of brain injury kids.

A couple of days ago I was pulling off his diaper and the steri strips from one site stuck to the diaper and I pulled the whole thing off. The incision wasn't fully closed. I had some covederm that the hospital had given me so I put that on. Its closing now but it will be a bigger scar.

Whatever, I swear if you give the kid water it would spray out of holes all in his poor little body. He's got scars all over his chest and abdomen. The kids has had 11 chest tubes in his short life, yes 11. And two nisson surgeries where they go through five holes (and of course they can't use the same scars as last time). And then the three scars from his 3 different heart surgeries.

Look at my beautiful boy reacting to his daddies whiskers. I'm very hopeful that he will someday laugh and play with toys, and even sit up.

I was being kind of cranky yesterday. I'm very used to people gawking at Jax, coming up and talking to him, saying how cute he is etc. And then you have the people who are quite blunt and say whats wrong with him, or is he going to live. I would rather people talk to me than stand and gawk though. I want to walk up to them and say, Uh you left your chin and tongue on the ground, you may want to pick them up.

But this lady asked me today if he was going to be ok. I said he's doing good right now and we still have him. We live for the day, who knows what can happen in a week or a month, but for now he's ok. And then she said "My baby swallowed amniotic fluid and had to be on oxygen for a few days". I just smiled and nodded, its like, yeah, thats almost the same as him, ha.

No it really was ok, I welcome questions from people, its just funny how they think they can sympathize.

I'm really not a rude person... really.

Our first blankie pics

Ok here's our first blankie reciever. Sweet little Zoey. Isn't she just precious?

There's the blankie logo with a pic of Jax on it. Look how she is studying it. Sooo cute.

I'm very excited about this. I am going to go to local radio stations and stuff to get the word out but I wanted to get a few out there first and see how they are recieved. (and I didn't want it to get to big for just me to do without help) This is my way to give back, because so many people gave to us in hard times with Jax. So spread the word in your part of the country and give them Jax site. I am going to do a site just for the blankies soon, but for now this site will be the place.

More awards and cranky babies

Ok I have one more award to pass on. This one was given to me by Renee at Life with my special K's. Also the last award was given to me by Kaci from my 3 sons.(I forgot to mention that) This one is the lemonade award. It is for great attitudes or gratitudes. Pass this on to 5-10 more people and send them a comment that they recieved it.I give this one to
1. Julie from The Snell family
2. Heidi from Heidi and Juniors blog
3. Sarah from Class of 2008
4. Tara from Kidz
5. Michelle from Zoromoski chronicles

Heres a pic of Carter trying to hold Jax while we waited at the school for Tanner to get his award.


Tanner getting his award from the principal. Notice how he doesn't like how close she is to him.

Jax has been super cranky since his surgery. I got the loratab filled, but it doesn't seem to be helping. His g-tube site has been so red and there are even some spots were it has broken down and bleeds. I just switched the button out because it was way to big. But this one still leaks, and I think thats why he has breakdown. I might have to go back to my mickey button. I'll give this one a few more days.

This is the only time he is no cranky. He also has this new trick to wake up at 3 0'clock in the morning. Then he goes back to sleep until 9 or so. I don't think so, the past couple of days I wake him up at 8 so I can break this new habit.
I have a couple of blankies on their way, I'm still waiting for a pic of our first one to post. (Zoey's mom.) Just kidding, I know they just barely got home from the hospital. Carson's is on his way and Gavin's and Dillon's will be sent out in the next day or so.

Remember to email me if you know of someone who needs a blankie, I have helpers now, and I'm having a blast.

Award time

Ok, I'm ready to pass on the awards that I've recieved. Pass these awards on to 10 more people and let them know through comments that they recieved it. Then post it on your blog.

I give these to.

1. Pam at Bird Flock

2. Heather at Little wonders

3. Cammie at Heflin Family

4. Alicia at Gavins voice

5. Melisa at Having fun with master dillon

6. Lindsey at Coleman Family

7. Kim at Where the wild things are

8. Maureen at Penny the baby girl

9. Jaci at Life is beautiful

10. Angela at Pheonix's fight

I have another award to pass on but I will do that one tomorrow.

Ok there you go. Now question for everyone. Today my autistic son Tanner got an award at school. They will give it to all the kids eventually, for work done at school. Well he's really been struggling at school this year. He's gotten farther behind, and I have to fight him every day to go. So when she announced his award she said it was for spelling. And the words he spelled were cat, bat, etc. I was kind of embarrased for him, because those are kindergarten words, not second grade words. And even though I know he's not there yet, and I don't mind that. I didn't know if it should be announced to everyone what words he was spelling. Is that me being selfish and embarassed for myself? Let me know what you think. I think I'm just frustrated at how difficult he has been this year.

Here's a pic of Jax for your daily fill. Ha Ha

Celebrate CHD awarness week

Celebrate CHD awarness week and spread the word. One in 125 babies is born with a congenital heart defect. It is the #1 killer out of all childhood diseases.

We're home!!

We are home, yeah. Jax is doing great. I'm so mad though because the perscription for loratab they gave me is in compound form, and there are no compound pharmacies open right now. So What am I going to do for pain meds for my poor baby? Tylonel is not quite strong enough yet. I just hope it works for him. The central line they put in was in his groin. I can't fathom why you would put a line there in a diapered kid,or any kid for that manner. I told them he was an impossible poke, and I know they hear that all the time. But I found seven places were they tried to start an IV before they did the line. I just pray my poor baby was asleep before they did that, but I don't know if he was because they like to get access before they put him out.

Jax surgery battlewounds

Quick update

I just wanted to hurry and update everyone on Jax. He's doing great, I really think all the prayers help. This is the fastest he's ever recovered after surgery. I can tell his tummy is really sore. So loratab helps that. We are half way to his goal of 42 cc an hour continous. He should be up to full feeds tonight, and if he tolerates that then we are out of here tomorrow. Ok I'm going to go eat now because I'm starving. Lacey

pics of Jax

Jax when he came out of surgery.

Extubated 3 hours after surgery, yeah. I think he would still be intubated if he had his tonsils out.

Doing great

Jax is doing great. We only had one setback, that was they couldn't do his tonsils and adnoids. It makes me mad because we wanted to do the surgeries together for his sake. But his hemo doc called AFTER he went back for surgery and said that he can't be off his lovenox for the two weeks he needs to be for Tonsils. Tonsils usually are at the highest risk of bleeding 7-10 days after surgery. So we will be coming back in 4 to 6 months for that. They checked his hearing and put tubes in his ears. his hearing is not normal so they recomend hearing aids. The fixed his nissen, and put a central line in. He went to PICU still intubated about 11:00. They just extubated him at 2:30! I think his shortest intubation ever. He sounds really junky so hopefully he stays stable. He will probably stay in PICU overnight. The floor is more busy than PICU so their not in a hurry to push us out. I will post pics when I am home and can download them. I just wanted to let everyone know he is doing great.
Thanks for your prayers, Lacey

Surgery times tommorow

Surgery is bright and early tommorow. I have to be there at 6:45, surgery at 8:15. Anyone who wants to come up can. It will be about 3 hours, then he will go to PICU. I will update as soon as I can when he comes out. Please pray that everything goes smooth, and he doesn't throw us any curveballs.

Presents on the perfect day!

Last night we had a great time at our superbowl party. Although they were all Cardinal fans because they lived in Arizona, yes my hubby was very upset. But Tanner, my autistic 7 year old was having major asthma issues. The air quality here is pretty bad right now, but he was barely making it 2 hours between treatments. I Really didn't want to take him in, I'm still trying to get ready for Jax surgery on Wednsday. So I just got up last night every couple of hours to give him treatments. But I did take him in to my pediatrician today. She gave him 3 nebs and he still wasn't moving much air. She told me I should probably take him up to the hospital. ARE YOU KIDDING ME.

I took him up but once I got there i just kept thinking. I can do this at home. I have a sat monitor, I even have oxygen if he needs it. So I talked them in to letting us come home. It will be another long night though. So I got home exhausted tonight, and thinking that now I only have tommorow to get everything ready for Wednsday. There was a package on my table. It was from Gavins mom Alicia. It was a cute blankie for Jax, a sooo cute stuffed giraffe, and a great book called Give Us This Day. I was so excited. What a way to brighten my day. Thank you so much Alicia.
Jax and his new stuffed giraffe.






I recieved a couple of blog awards today. Thank you so much, and I just wanted to let you know,those who gave them to me, that I will pass them along and post them, but it will probably be after Jax surgery, I need to have time to pick blogs and get r done. Thanks again to my friends.

Superbowl Sunday

My hubby is having a superbowl party today. He's making his homemade chili. (yummy). I don't really care about the superbowl, but any excuse to have a party.

I finally finished my binder for Jax. I wanted it done before he had surgery on Wednsday. Now that its done I think it will be very handy. If you have a child who is in the hospital a lot and has a huge medical history, this is wonderful. Now when they ask me for his meds I can just hand it to them and let them copy it. Another great thing is, I'm constantly asked in the hospital if he has a DNR order, how do I decide that? So the first page inside says: Lifesaving measures, FULL CODE in red letters so they know. It also says that decisions may change based on individual circumstances. That is great to have written down in scary times. Heres what his folder looks like.

The cover has a pic of him and his birthday, and diagnoses

Inside are history, meds, surgeries and hospitalizations. It even says what comforts him.

In the next couple of days I will post a pic of our first blankie. I don't want to post it until she recieves it, but I'm very excited. And more are being sent out in the next couple of days, so if your waiting for one. It should be coming soon. If you haven't already, email me your address so I know where to send them.