Friday, January 30, 2009

More cute pics

They just moved Jax surgery up to next wednsday. AAHH. His pediatrician wanted it sooner than March 2 and the day both surgeons are in the OR is Feb. 4. I'm glad they are doing it sooner, but it just brings the pre surgery butterflies. My pediatrician asked if I was having regrets. I said no, he needs it, its just scary letting him go to the OR because he is so fragile. They will leave him on the vent. I don't know for how long. When your doc said she is a little nervous too, That doesn't make me feel any better. But she will be in the office all day on Wednsday so she wants me to keep her updated. Now I need to hurry and get things ready for a week or so in the hospital. I'm just praying for no infections and he is able to get off the vent in a reasonable amount of time.

Here are some more of the cute pics at our photo shoot we did.

Thursday, January 29, 2009

A much better day.

Today we met with the surgeon about redoing Jax nisson. One thing I don't like about his surgeon is he is kind of iffy, like he can't make up his mind. They didn't do Jax first nisson with his g-tube because he didn't think he needed it. Then Jax threw up and was on his back and went blue and stopped breathing, then they finally did it. But anyway he said we can keep the GJ tube and see how he does, or go in and revise it. I told him the last two weeks he hasn't been tolerating his feeds at all, and then of course the walmart experience. But when I told him he is scheduled to have his tonsils and adnoids out he said it is a good idea to go ahead and redo the nisson at the same time. I don't want to wait and then have to have another surgery. So we are scheduled for March 2. It will be about 3 hours total. They will more than likely leave him intubated, they did with his last nisson, and when you throw in the tonsils, its a double wammy. So now I'm trying to hurry and put my binder together with Jax history, his meds, and all that stuff so doctors and nurses can look at it and get his history fast. It will be a life saver.
Jax has been such a stinker lately with keeping his O's in his nose. We've tried socks over the hands and everything. So if anyone has any brilliant ideas, I'm all ears. You'd think that he would be used to it after 3 years, nope.
He looks bored out of his mind in the surgeons office.

Tuesday, January 27, 2009

Pity parties and surgeries

Well I finally had my breakdown day, it doesn't happen often, I'm a pretty easy going person. And the day started out great. We met with Rhett and his mommy at Red Robin for lunch. It was a blast. Just let me tell you Rhett is as cute in person as his pics. Of course I forgot my camera so hop over to her blog, thebirdflock, and check them out.
After we had lunch we headed to the hospital. First was our ENT appointment. We scheduled surgery for his tonsils and adnoids. There is not much they can do about his nasal airway, so we will see what that does for him. Then we went down for our upper GI. We sat in the waiting room for an hour. I saw the guy come out and take a baby that had just gotten there. When he finally came and got us I told him he passed us and took the baby first. Oh he was full of apologies, ha (can you feel the sarcasm?)
When we got the upper GI he immediatly began to reflux the die, so the radiologist hurried and sucked it out with the syringe. Well the nisson is not working, yeah (again the sarcasm?)
On my way out I called my doc's office to see if she wanted an NJ tube put down while I was still up there. An NJ bypasses the stomach and goes into the intestines so they can't reflux it. And it has to be done in radiology.
Well my doc is on vacation till tommorow, so the doc on told me to go to the ER for the NJ. I asked her why she just couldn't order it. Well she wouldn't. So we headed to the ER where we hid in the corner until our turn to go back so as to stay away from all the sick kidos. We sat in the stupid ER for 5 hours. I was starving, exhausted, and thinking as the minutes kept ticking away that I still had a 45 minute drive home. They gave him a GJ which just takes his G tube down into his intestines and we finally left at 10:00pm. But now he needs to have surgery to fix his nisson. So today we end up with two surgeries. Its amazing what these little hero's can go through and still stay strong. I'm hoping they will put the two surgeries together, but that will be a double wammy on poor Jax, it will take him a while to recover.
So when I get home at 11:00 I don't just get to go jump in bed. I have to get Jax jams on, his meds down, give him his shot, set up his feeds and hook his monitor up. Then I finally get to eat cold pizza while I write this blog to wind down. Then I think about how I have to get up in the morning and get my boys to school. There just going back from Christmas because they have been off track. So now I get to take my seven year old autistic son kicking and screaming to school. And he is upset because his schedule is changing again, and a normal school day is to long for him, but his school is not helping me at all on what we can do to help him.

In the morning I will wake up a happy camper again after this pity party tonight. I know God gave me two special needs kidos for a reason, and I wouldn't trade them for the world. So now I'm going to try to get my exhausted self to sleep,(and pray Jax sleeps all night) and then get up and do it all again.
Goodnight friends!

Sunday, January 25, 2009

Vacation time baby!!

In case you couldn't tell, we are huge Disney fans. Mickey Mouse is everywhere in our house. Its just a place were no matter how old you are you feel like a child there. My husband is from Southern California and still has relatives there. My sister also moved there, so we have lots of excuses to go back.

I just started planning our trip this year and its going to be fantastic. We will start off in Legoland, we've never been there but the boys are sooo excited. Then after we visit with relatives we are staying at the Disneyland hotel. Yeah, we've never stayed there before. We are going the first week in April. We have our wonderful rep from homecare already working on our oxygen situation to get Jax everything he needs. And if anyone is thinking of taking their special needs child there, Disneyland is wonderful. We get a handicap pass that lets us push him all the way up to the entrance so we don't have to carry him and all his gear (not to mention that we don't have to wait in line for some rides) Also last year I was a ditz and forgot to check Jax oxygen before we headed over and we ran out in the middle of Disneyland. A great employee walked us down the middle of the parade route to first aid were they put him on their tanks while my husband ran back to the hotel. They even let us bring a spare and keep it there in case we ran out again.

We are so excited and Lord knows we need a break. Even though I think every time we've taken Jax to California we've made a hospital trip. So that doesn't stop but its still a relaxing time. Also we found out little Zoey lives not far from were we will be so we hope to get together with her and her family, yeah.

By the way, we are getting pretty close to a good smile, wouldn't ya say?

Friday, January 23, 2009

This little piggy

Well we are back on continous feeds. He is not tolerating his feeds so we are starting over. Its always baby steps. We are also going to have an upper GI on Tuesday to see if his nisson is still intack. While we are up there Tuesday we also see the ENT to see what surgery they will do for his airway. So we prepare for surgery. That means getting a PICU bed, and all that great stuff.

His pulmonolgist also ordered an overnight oximetry for two nights. Its basically a sleep study you can do at home. Yeah, I love her for not making us come back in. She just wants to make sure he is keeping his sats up on his 1 liter he is on at night. If they don't stay up they will probably try and get c-pap. And also we still have the monster concentrator, but they did bring us a new one that is a lot quieter, so for now we are ok, but I feel naked without my M tanks. I have had it for 3 years now.

His cute little piggys with moniters on both feet. Just ignore the purple. He has horrible circulation

Hanging out with his big brothers.

Wednesday, January 21, 2009

Some more cuteness

This is my only pic I have of my adorable baby smiling. And it is grainy because it was taken with my phone. He was 3 months old. Then at 4 months old he went into the hospital and stayed for 4 months on the ventilator. The hospital stole his beautiful smile from us.

Ya now we are in a better financial situation, but at what cost. I would love to have my cute little starter home back, or even the house we were renting back just to see that smile again. We are working on it though, and he is starting to pull those sides of his mouth up a little and you can see it in his eyes. His brain is healing a little but we don't know how much more he will do. So you can imagine why I hold so close this little grainy photo of his smile.

Here are a couple of pics from a photo shoot we did with some friends. I can't find my disc but when I do I will post the rest because they are adorable. Arianna just likes to grab Jax and give him kisses.

Jax is doing ok, he is still fussy with his feeds. We go in on Friday and have an oxygen tank holder fitted to his stroller, that will be so nice. Then Tuesday we go to the ENT to find out what he can do for Jax airway, another surgery no less. Have a great night everyone.

Tuesday, January 20, 2009

Jax update

Jax has done okay since his grey episode on Friday. I took him in yesterday and I think it was decided that he aspirated. We just restarted bolus feeds a week ago so she thinks we started to fast. So we are back to continuous and we will increase slowly. He is still very whiny with this tooth that just won't poke through, needless to say we have used lots of tylenol.
His pulmonologist also wants him on c-pap at night. But a new law this year prohibits it in kids under 60 lbs. Because the FDA never approved it for toddlers and babies. So we will be turning his O's up to 1 liter at night, hoping the extra pressure will help, it already has, he has been sleeping all night. Yeah. She also wants us back at the ENT to see if there is anything they can do about his narrow bridge. His tonsils are small, but he needs his adnoids out and see if there is a way they can open up his airway from his nose. As you probably know downs kids have very flat bridges.

When I called my homecare company to bring me an extra tank, because I will go through it a lot faster, they said I have to get a concentrator. I don't want a concentrator. They brought it out last night. I hate it already, I will be fighting today to bring my M tanks back. That thing is so noisy. I can't hear if Jax wakes up, and I can barely hear his monitor. And that thing vibrates the entire house. So this noisy monster is going back today, even if I have to raise a little h#ll.

An update for everyone that has blankies coming. We've got all the material, and there being made right now. I've already had to get helpers, I'm so excited this is taking off already. Hugs from us

Sunday, January 18, 2009

Insurance is crazy.

I hate January. Then you start all over with the deductible, the out of pocket max, and all that fun stuff. I just picked up two of Jax meds and had to pay 75 dollars! Outrageous. Then I had to check my insurance card to see why I was paying more than my copays. I still haven't figured it out.

And then you have to get five hundred pieces of paper for one visit. You get their statement that says they sent it to your insurance. Then you get the Explanation of benefits from your insurance, then you get the actual bill. Do they really have to kill that many trees. I don't really need to get 5 to 10 envelopes every day. I'm being buried in paperwork and trying to figure out what I actually owe.

And I have good insurance, and I still pay about 200 a month for Jax meds. I just cry for other families who don't have good insurance. I just hope Obama concentrates on our insurance companies, because its so out of hand. When they charge 1500 dollars a month for a special formula, and 1000 for the feeding pump. And they wouldn't let me have two oxygen regulators because they only pay for one. I just went online and I can buy a regulator for 37 to 69 dollars. So thats what I'm going to do. Buy my own and give the one back to the insurance company and say here you go, then I'm not paying 200 a month for the regulator. And these poor kidos on medicaid are being denied everything right now because of the economy. Jax therapists are bored because the've lost all thier medicaid kids. No child should go without insurance. Period.

And go read Emersons journal, they need help because she maxed out their insurance and now medicaid won't cover her because she's being treated out of state. She can't be placed back on the transplant list without coverage. and she will die in 6 months without a transplant. Ridiculous.
Ok I've vented now, I can't end on a sour note so here's a cute pic of Jax that his artist made for him.

Friday, January 16, 2009

Ambulance ride anyone?

Today started off great. We went down to the dinasour museum with Jax's little friend Arianna. The boys had a blast. It was nice to get them out because the've been off track in school and have been sitting around the house all day.

Afterward we went to Walmart to go grocery shopping. Jax is still in an infant carrier even though he is three. He is under 20 lbs and under 22 inches. Plus he can't sit up in the cart so its the easiest way to tote him around.

He was asleep most of the time, he started to wake up, I looked at him and he looked pale. All of the sudden he started gagging and wretching. I picked him up and my hubby grabbed his syringe to vent his g-tube. Then I looked down at him and he was Grey, yes grey. And totally listless. my husband called 911 and I called my ped. and we headed to the front of the store. Luckily the fire department is in the same parking lot as the store so they were there in seconds.

I do have a humerous story in all of this, my husband went to ask walmart if they had a defibrilator. The 911 lady told him to find one. The guy at customer service told him to get in line. He asked them again, the girl said, did you check in hardware. HA. So if you ever need a defibrilator, check in the hardware section at walmart. And by the way, walmart was not helpful at all, the will be receiving a letter from us.

Anyway. They took him by ambulance to the hospital. His vitals stayed stable the whole time, and when we got to the ER he perked right up and was fine.


He continues to show us that he is in charge and not to get to comfy in any kind of routine. My ped. thinks he aspirated. Thats what I think, I didn't see any siezures, who knows, the kid just likes to be naughty.

He doesn't look very sick does he?

He may be getting an upper GI to make sure his nisson is still intact. More fun stuff.

Starting on my blankies though, keep the requests comin..

Thursday, January 15, 2009

Blankies anyone?

I have enjoyed making blankets for a few years now. All of my boys have them and there great hospital blankies. I have made some for friends and I would like to make them for kids that have medical problems and are in the hospital a lot. I would like to eventually make it a nation wide thing but I know it will be slow and I'm not quite sure how to get it out there. Maybe make a blog just for that.

If you want a blankie for your child or someone you know with a sick kido post a comment with there sex, age and thier favorite stuff so I know what kind of blankie to make. You can also email me so you can give me your address to ship it to. Its There is no cost, its just something special for all the brave kidos out there enduring hospital stays, pokes, and feeling like crap. Here are a couple I've made for Jax

Jax showing the one I'm making for him right now. I crochet around the edges to make them more special. Let me know, I'm dying to make more.

Wednesday, January 14, 2009

getting some teefers

Jax was a little fussy yesterday which is so not him. But it looks like he may be finally getting one of his top front teeth. Its all red and swollen. Can you believe my three year old only has two teeth. Its because he hasn't eaten by mouth since he was 4 months old, so nothing to push them in. I was concerned that he either didn't have teeth in his head or they were going to rott sitting under the gums. But his dentist said he could feel all his teeth under there. And as long as they are under the gums they will not rott. He said that kids eating and biting on toys pushes the teeth through, well Jax does neither of those things. Thats ok, the less teeth he has, the less he can grind them, because he somehow does that already. But I grabbed my camera because he kept doing this great pucker face he has. Check it out.

Here it comes..

Wait for it..
There it is

Its so cute. But of course then I picked him up and gave him some loving and kisses. Then we gave the tylenol to help with the teefer pain.

Monday, January 12, 2009

Bye bye central line!

Yeah, our fabulous home care nurse came and finally took out Jax picc line. I'm just glad we made it through with no line infections. If he would have been in the hospital with it it would have been gone by now from infection. Moms are so much cleaner.

And no I'm not keeping the line. That would be so gross. I grabbed a shot for the scrapbook. Thats not gross is it?

Sunday, January 11, 2009

Grateful for friends

Jax in his hope kids shirt after we went and saw Desperoux with them yesterday I just wanted all of my new blogger friends to know how happy I am to have found you. When Jax was a baby we used to go to our local Ds functions all the time. He even had a little girlfriend we met in the hospital that was almost his same age and she had a lot of the same medical problems as him. We used to joke that they were going to get married when they got older. But as her pulmonary hypertension got worse, and they couldn't keep her off the vent, I wondered how much longer we would have her. And she passed away in May of 07. We were devastated.

Then when Jax had his brain injury, people at the downs functions kept asking why he couldn't sit up And why can't he do this and that. I got depressed about my poor baby and we stopped going. I've now realized that my baby will do things on his own time and I can't worry about other people. So I'm having a ball meeting all these new friends Ds and other, and its been a great support system for me. Helping reassure other people that it will be ok and knowing people would do the same for us when we need a pick me up.

Thanks to all of our new friends. We love you all.

And the site is still under construction. I may have to give in and let someone do it for me.

Hugs from Lacey and Jax

Saturday, January 10, 2009

blogger changes

I'm trying to change my blog around and I'm not exactly sure what I'm doing. If anyone knows any of these answers let me know. I'm trying to stretch the title picture out a little. I also want the template that some people have with sidebars on both sides, but I can't find it anywhere. Any help would be greatly appreciated.

Friday, January 9, 2009

My so big boy!

My big boy sittin in his big boy chair, with a little help from mommy's hands.

Oh, so tired, can't hold the head up anymore.

I look like I have no body and really long legs.

Thursday, January 8, 2009

Funny funny

I had to post this pic. This is my SON Carter. I had this bow that came on some holiday m&ms and I had to give it a try.

Hey, I don't have any girls, can't I have a little fun too.
He was a great sport and even let me take pics. He loves his long hair he thinks he looks like a skater dude.(Yes he is a kindergartner)His nickname is Dupree. If you met him in person you would know the resemblance.

I had to buy these jams for Jax for two reasons. They were super cute for Valentines day, and they had Mickey on them. But the biggest size they had was a 6-9 months. And yes they fit him.

How sad is it that my three year old fits in 6-9 month clothes still.

He woke up with major stridor this morning. I attribute it to the two tubes down his throat yesterday. If he wakes up with it tommorow or his oxygen need goes up we will be going back in. I worry because he has had paralized vocal cords that almost got him trached. They are just starting to move well again so I hope this doesn't cause problems.

Nite nite everyone. Jax

Wednesday, January 7, 2009

Through with flying colors

We got to the house on the hill this morning with butterflies. We never know how he's going to do with anesthesia, and also what they might find. He was asleep before the docs even came in to examine him. Who needs anesthesia.

Of course the doc told me everything that could go wrong. And everything he is at risk for due to his history and being hard to extubate.

I already had a huge headache. And I didn't even meet the doc who did it, only the anethesiologist. So when it was over no one came in to tell me how it looked. They just called my name and told me I could go back. So I assumed they were able to extubate him ok, if he was in PACU instead of heading to PICU. I got back to him and he was wide awake! I was like, did you guys even take him back yet, this is so not Jaxson. Look at those wide eyes, fingers in the mouth.

I called my pediatrician when I got home and she looked up the report. Its kind of hazy. It says there were no obvious clots but there were white spots on his valve, ok, the valve that is already leaking like crazy. Great. She also won't let the PICC come out until we know everything is ok. So we continue baths in the sink until we get that darn thing out.
We are just glad to be home. Sweet home.

Tuesday, January 6, 2009

My pediatrician rocks!!

My pediatrician called me yesterday and said she would call his hemo doc about not getting the TEE done. So this morning the schedular guy calls and says. . we can do the hearing test on Thursday but the TEE can't be until the 21st.

Uh, I don't think so. So you want me to go up tommorow for the ultra sound, Thursday to put him under for the hearing test, and not until the 21st to be put under again for the TEE. This clinic doesn't know Jax very well. You don't put him under unless you really need to and get everything done at once.

Needless to say I was quite miffed. But I held my tongue with the schedular (after all he has about as much pull as the cleaning lady) and I imediatly called my pediatrician at home. She called me back and said, I'll take care of it.

She called me back an hour later and said, your on for tommorow. Wow do we love her. She told cardiology, if he clots in his lungs or heart, do you really want that liability. Of course they don't, they've delt with their screw ups already.

So tommorow we head up to the house on the hill. Pray that he extubates ok and we can come home after. ( the overnight bag is coming anyway, it always does)

I will update when we are all done.

Monday, January 5, 2009

One year ago today...

Jaxson it was a year ago this week that your brain was taken over by siezures. It took our own peditrician to admit you and see what was wrong. The nuerologists finally took notice after an EEG showed you were in status. First they put you on propofal to try and stop them.

After that didn't work then we had to give you pentabarb to put you in a medically induced coma. That made your body so sick. You blew up like a balloon and your lungs filled with fluid. They told us if this coma didn't kill you they would send you home on hospice, because status doesn't usually go away and it kills the brain.

After we turned off the medication, they fluid went down and you started to wake up. As your brain activity came back the siezures actually looked better. We knew you were a fighter and once again you pulled through.

It took a while to get you back off the vent because your lungs are already so sick. But you came off and back up to the floor we went.

After 3 weeks in the hospital we took you back home. Not our longest stay, and not our shortest stay, but one of our scariest stay since the brain injury itself. You've been given so many trials, and you always come through. You are our little hero. We love you baby boy.

Saturday, January 3, 2009

Hose goes in the nose..

I walk into my room and what do I see? Jax pulling his whole face down grabbing on the his O's.

He would rather oxygenate his lips than his lungs. Little stinker.

Then when I try to put them back in he covers his face. This is all great stuff for him because it means he is responding and not just staring off into space all the time. Maybe, just maybe, his brain is healing a little bit.

Oh ya, and the transesophegeal echo. They are still taking forever on getting it scheduled. They don't understand we need it NOW and not later. Well on Monday my fantastic Pediatrician is going to start knockin some heads to get this done. I want to take his picc line out soon because he's had it since October, and even though I love it for labs so they don't have to poke him. We are lucky it hasn't gotten infected yet. (knock on wood)

So I would like to get it out before that happens and puts him back in the hospital.

Have a great day!

Thursday, January 1, 2009

Prayers needed

Please pray for Jaxsons little Emerson. We met her on our Myspace about a year ago and we've been following her since. She had a full bowell and spleen transplant in June. In October she got septic and coded and was very sick. She started to get better but in the begining of December she got a bowell disease and had to be reintubated. She is now on full dialysis and her bowell is dead and had to be removed yesterday. She can't be relisted for transplant until she stabilizes. She made it through the night and now its just minute to minute. Please pray for her, you can see pictures and follow her journal, she is one of our friends.

Thanks for your support. Lacey and Jax