Saturday, October 31, 2009

Happy Halloween

Happy Halloween

I know its not Thanksgiving yet, but I have a lot to be thankful for today. Jax is doing incredible. You can tell that he has so much more energy and his breathing is so much easier. We don't have a repeat echo for a while but I already know that his pressures are way down. His heart is smaller on x-ray, so I know his failure is also better.
I love halloween, and I'm ready to go Christmas shopping!
Have a good day and be safe everyone!

Friday, October 30, 2009

Monkey boy

Ok, my pictures are all out of order because blogger is being a bugger and won't let me move my pictures.

Here is Jaxsons halloween costume. I'm so glad we weren't stuck in the hospital. I found this monkey costume at Old Navy and had to have it for him. Monkeys are kind of Jaxsons thing. His room is done in Curious George. I'll tell you how it started. Ray gave me this book mark of a baby orangutang that had red hair sticking straight up. It looked just like Jax when he was a baby. His hair was so red and it stook straight up to. And I really hope people don't take offense to this, but google baby orangutangs and tell me they don't look like down syndrome kids. They have the same little button nose and little round eyes. I love it.

I wasn't quite sure how to bath Jax after his trach. They said don't let water get around it so we tried the sink.
Um, don't think the sink is working to well, a little small wouldn't ya say?

I bought a baby bath tub and its to small too. So we are sticking to the big bath tub.
Anyone going to the UDSF halloween party tonight? We'll see you there.

Wednesday, October 28, 2009

My cute new trach baby

You'll never believe it, Jaxson slept ALL NIGHT LONG!!


He fell asleep a little late, around 11, but that was partly my fault. See his humidifier automatically turns to invasive when you turn it on, and invasive is hotter. I forgot to turn it to noninvasive. So I wondered why he wasn't sleeping and he was awfully warm on his face. So I realized my mistake, and 10 minutes after I turned it down he was out, and didn't wake up till 7:30. Oh yeah, I'm so doing the happy momma dance.

Heres a video with Jax and his trach. He was doing some great smiles, but of course as soon as we grabbed the camera he stopped. But he makes some great faces, and of course the great teeth grinding. I don't know why the video is so grainy, I guess because its a camera and not a video camera.

The nurse came out yesterday. He was really great. He's coming today at 2-6. He's going to come in the afternoons on Tuesday -Thursday so I can run errands. I usually like to take Jax with me, he's my little sidekick, but I think with winter coming, leaving him home is a better idea.

Monday, October 26, 2009

A big, long post

Ok, first things first. Look at this angel. The newest blankie reciever. I'm trying to get caught up on the blankies, a daunting task after spending 10 days in the hospital. But we'll get there.

My sweet niece who shares my name, Lacey, is a newlywed that moved to Florida with her hubby who is in the Air Force. She heard about a Buddy walk near her and wanted to go, to represent her cousin that lived on the other side of the country. We sent them Jaxson t-shirts, and they went and walked for Jaxson in Florida! I love it, what a great cousin. We miss you Lacey bug.

Also, I got another phone call today from the hospital. All these tests are coming back now that we're home. But his stool sample showed c-diff.
ding dong, the light turns on!
That would explain the wretching and gagging, the not tolerating feeds and the fussiness. We are not going to treat it because he's doing better, and this more than likely started back last Wednsday, so we are nearing the end. But it goes to show you that even on protective isolation, my baby catches stuff. The baby accross the hall has been waiting for a heart for two months. He's in protective isolation and hasn't caught a thing. Nice.
And I figured out how to get the trach mask with oxygen tubing. Home care brought it out today and we'll try it in the morning.
I need everyones help with a couple of things. First, the discharge planner looked into nursing care for Jax, and it turns out our insurance will cover it at least for 60 days, maybe longer. A nurse is coming out tomorrow morning, but I'm a little nervous about it. Not that I don't think they can care for him, but its too wierd having someone in my home taking care of my baby while I'm there. Thats my job. I don't know if I can handle it. It would be nice for me and Ray to be able to go out, but thats random and I can't call the nurse to come out at that time. Does anyone have nursing care while they are home? And do you like it? I love taking care of Jax, I really don't think I'll use it after tomorrow.
Second, Julie is asking for our help tonight. Arianna's nurse told her today that there is a lady that works for her that just had a baby girl. The baby aspirated on meconium and is in the NICU. Then the mom had a stroke yesterday. This is a single mom that just moved here from California. She has nothing for this baby. If you have any baby stuff that you can donate to this mom we would greatly appreciate it. Julie got her a crib already. If you have baby girl clothes, blankets, diapers, anything this mom could use please email me at so we can help this mom in need.

Sunday, October 25, 2009

The drama never ends.

The first 24 hours with Jax home has been fairly uneventful. Last night I was hoping being home and finally able to breathe that he would sleep good. Wrong, he woke up at 1:00 and nothing I was doing was helping him. He would fuss, fuss, fuss. I finally had to walk away from him, having no sleep the night before was making me already crazy. So daddy got up and somehow got him to sleep. He did sleep the rest of the night after that. The other thing is the oxygen tubing that fits on the trach is not working at all. The tubing goes of the side, so its always in his way. If he could walk, crawl, or even sit up, it may not be so bad, but it pops off more that his cannula ever did. I did see on another blog a setup that may work, so I'm working on finding out how to get that for Jax. Its basically the trach mask he wears to bed, but it attaches to oxygen tubing. I need to get me some of those.
Now here's the drama. Last night I get this voicemail from a guy saying that I need to take my son to the ER because his blood test came back wrong, and to check in with oncology. So at first my heart drops and the first thing I think of is luekemia. Then after I calmed down I realized that this man didn't even say a name. What if he called a wrong number. So I called him back. It was for Jaxson, but I don't know how the results got to him in the oncology clinic. It was blood cultures ran Friday came back growing bacteria. After tracking down the resident at the hospital, she said to take him to the ER because he needs antibiotics. Instead I called my pediatrician. She looked it up and told me to wait until the next day when it says what the bacteria is. It may just be contaminated, unless of course he gets symptoms like fever, increased oxygen need, etc. Today he's been fine, so I'm glad I didn't take him in. We avoided an unnecesary trip.


Saturday, October 24, 2009

Home sweet home

No seriously, we really did come home today. I guess all he needed was his mommy's touch. He had a really good night last night. Didn't sleep all that well, waking up at every little sound. But not fussing, tolerating feeds all night. So when the docs came in this morning I was like, "We're out of here baby". He still wretches sometimes, and I don't know what thats about but I'm hoping with time it will go away.

We stopped to get something to eat on the way home and had a small taste of trach life. Our first glimpse at how people react to the suction machine in public. Jax was fine on the way home, but cried the whole time we were eating. I think he just needs to adjust to home life again. Setting up all of his new equipment has also been interesting. I think he's going to need to move into the master suite and me and daddy will move into his room and get bunkbeds, daddy already called the top bunk. Wish us luck on our new endeavor.
Now for some pics.
More cute baby feet.
Getting ready to go home.

In the car.

Friday, October 23, 2009

Still here

Well, no home for us today either, he had another horrible night. I'm staying up here tonight so I can keep things in check and get us home tomorrow. He spiked a fever last night, but I think he just worked himself up. His temperature gauge in his body is broken, and he can work himself into a fever. He hasn't had one since. They also did a contrast study to see if he has a bowel obstruction, he is not tolerating feeds and having a lot out of his stomach. No obstruction, just his unbelievably slow bowels. When he has surgery his bowels just quit working for a while. If you remember when he had his cecostomy in June, he was cranky for a month and we wondered if we had done the right thing. I think we just need to get home, in his own bed. It will be hard for a few weeks, dealing with the crankys, but I'd rather deal with it at home. Jaxson will never be super healthy, and he'll always keep the doctors stumped. We could be here forever while they try to figure him out.
I love the attending we've had this week. He's never had Jax before, and he told me today that having him is very humbling. It makes him love his job more. I get that a lot from doctors lately, they shake their head when they hear his history, and are amazed at his strength. Me too, my little superbaby.

Thursday, October 22, 2009

Hault, about face

Isn't it so true that our kids take one step forward and about 10 steps backwards, making it imposible to get ahead?
We are not going home today. I am hopefull that we can tomorrow, but he had a horrible night. I feel so bad for daddy, he seems to always be the one here when something happens. Last night around 2 in the morning, daddy was suctioning him, and his sats started dropping. Then they wouldn't come back up. The nurse came in and he continued to drop, to around 20. Another nurse came running and they bagged him. They almost called a code, but were able to bring him up on their own. He is also not tolerating feeds still. I had a great suggestion though. Switch him to a GJ tube, let his g port vent, and feed him through the j port, so his stomach is always venting. Hopefully before too long he'll get used to the trach and stop swallowing so much air. That is the plan, they thought my idea was brilliant, I told them they would be getting my bill, and I charge a LOT for my services.
They are still watching him for those episodes, I think he just got pissed, they didn't give him a break to bring his sats up a little, and he got passed that point of no return. The point when they need help to bring their sats back up.
So I'm praying we get the gj tube in today and home tomorrow, I'm not telling Jax though, he will throw another curveball if I do. I also think I'm going to go home to sleep tonight. He's been having such hard nights, that if we stay here we don't sleep. Me and daddy are both zombies right now. So we need to sleep if we are going to bring him home tomorrow and get all of his new equipment set up. Being a trach he is a one -to -one, so someone is always sitting outside his door. The tech that will be here tonight is one of my good friends, and she loves Jax. I feel confident that she will hold him if he cries, and take great care of him.

Oh and the H1N1, we do have to wait, but he did tell me we could get him in the back door if we let them know he can't be around everyone. It makes me crazy that they aren't caring about our medically fragile kids. I'm not freaking out about the virus, but I do want him to have the vaccine. I have now heard that the healthy people are being more affected because their strong immune systems are fighting it harder. The reason why its so rampant is because its new and no one has been exposed so everyone is catching it. I am just concerned about any virus with him, so we'll do all we can.

Wednesday, October 21, 2009

Possibly home tomorrow

Yep, you heard that right, we should be able to go home tomorrow. We do our rooming in tonight, our trach CPR class tomorrow, then we are free to go.
He's been having a rough day and a half though. Yesterday he didnt tolerate bolus feeds, so we tried slowing it down a little, and he still didn't. So we are back to continous feeds. Thats ok, his gut is very picky, and it will probably take a long time to slowly transition him back. He also was extremely fussy last night and this morning. His heartrate was in the 170's, normal being 120's. He would gag and wretch, so I would vent him and get 50 cc's of air. We think he's feeling back to normal and now realizing he is breathing different. You can see him swallowing air. Hopefully he learns how to stop that, otherwise we could be venting him multiple times a day to get air out. The attending was worried that he was catching something, so he sent a VRP, but like I thought, it was negative. Its just stuff he'll have to adjust too. We are working on getting him in on appointment to get the H1N1 vaccine. No one but the health dept has them. I don't want to take him to wait in line around tons of people to get it, so we'll see if they accomidate him.

Monday, October 19, 2009

Out of PICU

Jaxsons dinasour from his buddy Phoenix. Thanks Phenny man.

Oh its been a long day.

Jaxsons funky long trach.

Jax continues to amaze me everyday. We moved out of PICU last night. Thanks goodness, since our nurses were ignoring us anyway. I sat there for two hours and the nurse didn't even walk by. I was wondering why I'm paying for a PICU bed. He doesn't need to be suctioned all that much for a new trach, and I can already tell he will sleep better at night. The only thing is I still can't decide if I want him in my room when we get home. Last night I heard every little peep he made (trachs are noisy) so I was up all night wondering if he was crying or just breathing in his sleep. I'll have to learn his noises. I don't want to still be up all night listening for him. We'll see how the next couple of nights go. He also is adjusting really well to having the trach. He doesn't even care its there. He does get mad if we suction, so I try not to go to deep, because if I piss him off it just makes more secretions. He does really well at coughing them up himself too.

The doctor wants to speed up his trach teaching. He wants him out of the hospital because everyone there is catching H1N1. But they won't budge, so we'll still be here till Friday, unless the doctors go to war with each other. We'll see.
I'm trying to catch up on everyones blogs, but haven't had much time to leave comments. I promise I haven't forgot about you all.

Saturday, October 17, 2009

Being thankful tonight.

I have to put his bed flat so he can roll to his favorite side.

A pic of my nice, quiet, corner picu room.

I have gone through a whole shlew of emotions the past couple of days. Adjusting to the trach has been easier than I expected. And I haven't freaked out yet when he cries and nothing comes out. Its just that Jax hasn't been in the picu longer than one night in about a year. So being down here for a while just sends memories flooding back, and remembering the death and sadness this unit brings. Yesterday morning when I came in, walking back to Jaxsons bed which is in the corner. A teenage boy across from him was crashing. I walked in a little after the chaos started. They had already brought echmo in and the surgeons were gowned up and his room was roped off. He is still on echmo tonight, but I hate every time I walk back to Jax bed I wonder if he'll still be there. In our picu they have a little butterfly that they tape to the door or curtain if a child is passing away. Its a secret code to leave that room alone, that a family is grieving.
I'm so happy that Jax is doing good, and its definitely nice to not be the sickest kid in the unit. To not be the one were the crash cart is being dragged to your bedspace, and the doctors are running all around. We've been there, done that. Also when everything is quiet, there is no running, but your baby is so sick that when the attending walks in and asks, "how we doing", your nurse says, "not very good". And the attending responds with "Thats what I hear". No one is running around. But your baby's vent settings are maxed out. They have the oscilator waiting outside his door, and they tell you he probably won't make it. We've been there done that too.
I couldn't be more grateful that my baby is so strong, and I know this probably won't be the last time he gets scary sick. We took the other boys to see Where the wild things are today. They bawled their eyes out when the boy left his friends and went home. You know what the first thing I thought was?
Oh my gosh what if Jaxson dies? My boys would never be able to handle it. Their grief would be beyond managable. I don't want to even think that, but I also don't want to be unprepared, because many people still don't think he has a very long life span. We have to ignore what all the doctors say, because doctors aren't always right. I would love to say we just enjoy him all we can while we have him, but I can't because I don't want to think of not having him, its to unbearable.
I just can't wait to get out of picu and up to the floor.

Friday, October 16, 2009

Trach day 2

Jaxson continues to do well. They took the vent off about an hour ago, and he just has the mask. The only thing I hate about the mask is it moves all over when he moves, so it will get off the trach and he will desat. Also its harder to tell how much oxygen he's on because its a percentage, kind of like the vent. So he's on 50 % right now. We'll get him on a nose with normal oxygen before he comes home. We don't start our trach teaching until Monday because of the weekend, and they should change out his trach on Sunday. They have his hands tied right now so when he's awake that makes him mad. Hopefully soon we can take the restraints off. You know how much he loves his hands by his face.

Thursday, October 15, 2009

Doing good

Jax is doing good tonight. They left him on the vent, I don't know for how long. I haven't heard any plans to take him off tonight. It wasn't near as bad as I thought seeing him for the first time with his new hardware. He does look funny to me with no cannula, his nostrils look huge to me, but it wasn't all that bad. I think the good thing is he was slightly awake when I first went in but he was pretty zoned. Then they gave him morphine and he's been in la la land since. So he doesn't seem to be in pain and he hasn't cried yet.
The blue lines on his chest are the stitches in the trach, they will stay in for 3 days, then they will switch trachs and he'll be ready to go to the floor if he's otherwise stable. We're expecting a week to ten day stay.
Oh, and tomorrow when I get up there I promise to give him kisses from everyone!!

All done

He's done. It took them about 45 minutes longer than they said. We are now waiting in the PICU waiting room for him to get settled. The surgeon said that his airway below his vocal cords was VERY narrow. It can be common in DS kids, but its probably from so many traumatic intubations. He said that in the future he may need a huge surgery were they take cartlidge and fix that area. But we won't know if he needs that until he is ready to be decannulated. Not for a few years at least.
Anxiously waiting to go back and see my baby.

In surgery

It was so nice to not have to be at the hospital at the crack of dawn. I was able to bath him and enjoy him this morning before handing him over.

Getting ready for surgery.

The long walk watching them take your baby away.

Its supposed to be an hour. The anesthesiaologist thinks it will be longer, so we just wait for an update.

This afternoon

We don't check in to the hospital until 1:15. I wanted to let everyone know that so you don't worry when you don't get an update.
Thank you everyone for your words of encouragment and emails. I know its my friends, near and far, that carry me through rough times with Jax. I love you all and wish I could someday meet everyone.
I am anxious to get this over with. Jax had his worst night in a week, maybe thats Gods way of reasuring me that Jax needs this. I couldn't keep his saturations up to save my life. Oh I think this trach will be a Godsend in disguise.

Tuesday, October 13, 2009

Savoring Jaxson

I'm savoring this sweet voice, because it will be gone after Thursday. At least for a little while. I'm hoping he can figure out how to talk over it, but with the cognitive ability of a 2 month old, I don't know if he'll be able to. I don't know yet what time we go in tomorrow. Of course I will let everyone know, and the laptop will be with me. The butterflies are in full swing right now. Its like when you have to get up and talk in front of a lot of people. I don't think I was this nervous about his heart surgery. But thats probably because I was thankful they were finally fixing him so that we could finally go home after 4 months :)

Ignore the noisy brothers in the first video.

Another good thing thats happened is we just recieved a check from a fundraiser that was done for Jax in August. This family of a heart baby did a ride to raise money for their sons medical bills. Well they want to make it an annual thing, and since their son is doing well right now, they were looking for another family to donate to. The talked to the president of IHH, a heart group that we are a part of, and I guess like 5 people mentioned Jaxsons name. Even our cardiologist said Jax. I was so touched. They were expecting to raise thousands of dollars (I guess thats what they raised last year), but bad weather made them move the ride to the next weekend. Then they had bad weather again so they didn't have as good of turnout, but they raised around 700.00. Well that will buy a portable pulse oximeter that my insurance won't cover, and also a small bed for him so we can move him into our room. You know that every penny helps with a medically fragile child. I'm waiting for them to send me some pictures so I can post them.

Monday, October 12, 2009

Surgery Thursday!

They just called me this morning and said they can fit him in Thursday. I'm so glad they moved him up but now the freaking out has begun again. I was thinking yesterday at the movie, am I going to be able to take him to movies with us now? What if he needs to be suctioned during the movie? Do I take him out or what?
I'm thinking we may be home in time for Halloween which is nice, the butterflies are just going crazy in my stomach now. Its only an hour long surgery, but its lifechanging. Yikes.

Sunday, October 11, 2009

Not much here.

Not much going on here this weekend. Yesterday Carter had his flag football game, and me and Ray went out and bought us an eliptical. Yes, by next summer we hope to be bikini skinny (well, maybe not bikini, but you know what I mean) Today we took the boys to see Toy Story/Toy Story 2 in 3D. I'll take any opportunity to see a Disney movie on the big screen again. We wanted to go to the pumpkin patch and let the boys pick pumpkins, but like everything else in Utah, the pumpkin patch is closed on Sundays.

On Friday I realized that we still have 3 weeks before Jaxson's trach surgery. So I called ENT to see if there was any way they could bump someone else so Jax can go sooner. I hope to hear tomorrow if that will happen. It shouldn't be to hard. The majority of things ENT does is tonsils, ear tubes, easy stuff that can be put off for a couple of weeks. Still just trying to prepare. Finding the perfect bed if Jax ends up in our room. I need to find a portable oximeter. The one we have is the huge box that has a battery life of like 2 hours. Until I'm comfortable that Jax doesn't desat with the trach and can handle his secretions, I want an oximeter that is easy to take with us. My homecare company can special order one in, but I don't know if insurance will cover it. I will call our case manager tomorrow and check into that as well. I have found a few online that aren't too expensive. We'll see.

Friday, October 9, 2009

My kids names

Ok Maureen, here ya go, this is how our kids got their names.

Raymond Thomas. Thats an easy one. He was our first boy so he got daddy's name. He is a fourth generation Raymond so when we found out he was a boy, I didn't even fight that it would be Raymond. Thomas came from Thomas trains for me, Tommy Lasorta for daddy. We were trying to find a good middle name and Thomas just sounded good with Raymond. Mondo is a nickname that came from daddy because when he was younger he had a family that called him Mondo, which means big. It was an oxymoron because he was so little.

Tanner Christopher. This is a good one. I have always loved the name Tanner from a hot guy that was on Days of our Lives for a while. I was madly in love with him in high school. Christopher is my brothers name and again just sounded cute with Tanner.

Carter Dee. This is a hilarious story. Carter was a surprise. I found out I was pregnant with him when Tanner was only 8 months old. I freaked out. And then when I found out he was another boy, my pregnancy hormones really went crazy and I wanted nothing to do with him. I didn't care what his name was or anything. I did not want another boy. Period. So daddy came up with a couple of names and he got Carter from his friends dog. (Nice huh?) He asked Mondo which one he liked and he chose Carter. Dee is my fathers middle name.

Jaxson William. I liked Jaxson when I was pregnant with Carter and really wanted it for Carter. But with my veto of another boy fiasco I didn't say anything. So when I found out yet again it was a boy, I immediatly said Jaxson. The spelling took a while to figure out. Daddy liked Jaxon, but I thought looked like it was pronounced jax-on (if you understand what I'm writing) so I had a patient in the hospital that was Jaxston, so I added the s and really liked it. I'm actually surprised at how many compliments that I get with the spelling of his name. People love it. William was Ray's grandfathers middle name.

I'm going to include mine because its a good story. My mom wanted to name me Leslie and my dad wanted to name me Stacey so they put them together and got Lacey. Clever huh?

Ok, I'm tagging some people to do the name game. You have to post how you got your kids names, and then tag more people
1. Michelle Therklesen
2. Heather Needham
3. Stephanie at life and times of a women
4. Emily at we may not have it together
5. Stephanie at Daily smiles
6. Kim at Ree's pieces
7. Kim at Blessed with girls.

Thursday, October 8, 2009

Jaxsons story

Because October is Down syndrome awarness month, I thought I would tell our story on how Jax came to our family.
Jaxson was my 4th baby, and he was definitely supposed to be with us. After having 3 boys, I had not planned on getting pregnant again. I wanted to adopt a girl. Because I worked at the childrens hospital with heart babies, I asked Ray if he would ever adopt a baby with heart defects, he thought I was crazy.
For some reason I decided to get pregnant again. I refused the blood test. I knew I would never have an amnio, plus I didn't care if the baby had Down syndrome so I didn't even bother. The funny thing is he was naughty before he was ever born. With my other pregnancies I felt great. I worked up until they were born. I even competed in a dance competion 7 months pregnant with Mondo.
When I was pregnant with Jax, my iron was soo low, and meds would not bring it up. So I felt tired and dizzy the whole pregnancy. I also got some kind of infection the week before he was born and ended up in the hospital recieving 5 bags of fluid. He was born 3 days later. I went into labor in the night, and my water broke shortly after arriving at the hospital. Once my water broke, my babies had a tendancy to come very quickly. He was no exception. Accept that his heartrate would decelerate to dangerously low levels. They did all the typical things, repositioned me, gave me oxygen, and finally tipped my bed so I was on my head! His heartrate would not recover. My doctor had not arrived yet. There were a ton of panicky people in my room. They unlocked my bed and started to wheel me down for a c section when one nurse just happened to check me and I was a 10, so they said lets just push this baby out now. So thats what we did. As soon as they layed him on me I remember looking at him and thinking, "Is this my baby? He looks different". They took him and started to clean him up.

They told me I could hold him for a minute but he was not oxygenating well so they needed to take him to the nursery. When I held him I made the comment that he looked downs. Of course the nurses didn't say anything. After they took him away I told Ray that I thought he had Down syndrome, he was like ok, lets do it. The nurses came back fifteen minutes later and revealed that they thought he had Down syndrome. I said, I know. Really that was it. There was no crying, no feeling that I didn't get my "normal" baby. I don't really know why we didn't have those feelings. Luckily my pediatrician was on that day so she came and talked to us. She explained the heart defect he probably had and thats why he wasn't oxygenating well. Since I worked at the hospital I already knew what AV canal was and had seen it many times. So once again I didn't freak out. The next morning he was taken to the childrens hospital to confirm he had the heart defect.

(side note, I can't believe they didn't see this major heart defect on ultrasound. Thats why we need to push for a fetal echo be done on all babies, so we can find defects that can be fatal if not found soon after birth)

The NICU was actually our easist hospital stay. He did really well, came home with no heart meds (although they were started that next month) He came home with his oxygen and his NG tube. He was in and out of the hospital for the next couple of months, his respitory status just wouldn't stay stable, other than that he was developing like any other DS baby, he smiled and was starting to roll over when he was admitted at 4 months old thus begining our 4 month hell stay.
My little angel baby.

Wednesday, October 7, 2009

Check this out

Look at these pics, aren't they the cutest? The reason I make these blankies. For the pictures of these sweet warriors that I get in return. We are doing a pretty good job with our huge order we got. Working extra hard to get them all done.

The first of our rememberance blankies are finally done and will be sent out today. I'm quite proud of them, and I can't wait to see the response from the family's of these angels. If you know anyone that has lost a child and would like one, just fill out the regular blankie form and put their birth and death date.

I though since October is Down syndrome awarness month, tomorrow I will post our story about finding out Jax had DS. No we did not know before he was born. Thats all I will say.
He was talking up a storm and being so cute this morning, I had to snap some pics, but he wouldn't hold still for to long, making it quite the struggle to catch his smile.

Monday, October 5, 2009

Allergic reactions, yikes.

Yesterday we found Carters football in Jaxson's lap. Don't know how it got there, but Jax doesn't look to interested in it.
Yesterday I noticed this rash on Jax. Red splotches at first in his creases. His wrists, elbows, shoulders. Also on his neck and ears. It would go away and then come back. It looks like hives, but I can't think of anything new he's getting that he would be reacting to. They started two new meds last week but both have been meds he's been on before. Today I noticed it again all over his arms and legs, and this time it looked like welts. So I called the ped and she told me to come right in before it went away again. She said its definitely an allergic reaction. She talked to cardiology who thinks it may be the enalipril. He was on it before but may have built up an immunity to it and now his body is fighting it. So we stop it for a week and see if the hives go away.
And man you should see the bruise on my arm from were blood was taken. One nurse tried twice to no avail, so she called another nurse. This nurse got it but she jammed the needle in hard. I swear she hit nerves and muscles. My arm was dead when I left and to this day is soo sore with a monsterous bruise. Now I know how my poor baby feels on a regular basis.
Also as of right now we are still scheduled for the 29th. They have nothing available earlier, and god forbid they ask someone who is just scheduled for a T&A or something to push back a couple of weeks for a baby who is in heart failure and has pressures through the roof. We won't even go there again. So it looks like we'll be spending Halloween in the big house. I believe this will be our first halloween locked up. Last year he was discharged a day before Halloween after a 22 day stay because I wanted out. Also two Christmas's ago I took him home at 11 at night Christmas Eve while daddy played Santa. There are sometimes when I know I can watch him just fine at home so I'm not making his brothers suffer on the holidays. We've spent our fair share of holidays in the hospital. Fireworks really do look great from the 3rd floor balcony!

Saturday, October 3, 2009

corn mazes and haunted houses

I do love the holiday season. I just hate the snow and the cold. For me it starts with Halloween, and then its nonstop till Christmas.

We've been trying to do stuff with the other boys since they are now off track and don't have school to worry about. And they get so left behind with Jax being in and out of the hospital and so sick. And me and daddy trying to make tough decisions about Jax. I showed the boys pics of some bloggy friends that are trached. To show them what Jax would look like. They didn't even blink. They were like, ok cool, we can deal with that. I don't think anything surprises them anymore, and they know way to much medical stuff for their age's. I went out and bought another thing of rubbermaid drawers to put in Jax closet. I'm preparing for the trach, hoping it will make me feel better about doing it. I also looked at port-a-cribs in case Jax ends up in our room. I just don't know if I'll hear him in the other room with no voice. I heard we don't get nursing care unless they are vented at night and we don't know yet if Jax will need to be vented.
The other day when I was at the craft store I found this cute haunted house that I thought the boys would love to make. Last night they put it together. Of course Tanner didn't help. He still prefers to just play by himself.
Tonight Jax went to play with aunt Krissy while we took the other boys out. We went to dinner at our favorite chinese restaurant, then went to the corn maze. Man I wish I took my camera. We had tons of fun with the boys. There are two mazes, a haunted one and a regular one. Of course we couldn't get the boys in the haunted one. But it didn't matter because toward the end you can hear the chainsaw guy, and we were teasing the boys that he was coming. Plus jumping out of the corn always gets them. (Yes we are horrible parents)
But I snapped some pics of Jax when the boys were putting their haunted house together.

I couldn't resist a cute butt pic when he rolls on his side.

Thursday, October 1, 2009

I think I deserve a sticker.

The boys went off track today. They've only been home one day and their already driving me crazy. But tomorrow they get to help clean so I can make them being home useful.
I had my doctors appointment today. I'm so proud of myself for not canceling it. I was very close, but I knew some friends would be quite upset with me if I did. He did a thorough exam since it was my first time in that office. And some blood work. But the good thing is he thinks the headaches and heart palpitations are definitely stress. He put me back on the prozac in hopes that it will ward off the headaches by keeping me calmer. We'll see.
Another good thing is I have had these red dots on my arms and legs that look like petikei, which in children is a sign of luekemia. But he said they were just a skin rash, and just fine. I also could have kissed the resident because he told me I only have to lose about 10 pounds to be in the "normal" range. I feel like its more than that but I'll start with a 10 pound goal. So I think I deserve a sticker for being such a good girl at the doctor.
I also had a looong talk with Jaxsons pulmonologist today. I feel much better and the trach is scheduled for the 29th of October. I will call ENT tomorrow and see if he wants to move it up. I do because I don't want to change my mind. Plus, he'll miss Halloween and I've already bought him a costume. Its not like we've haven't been in the hospital during a holiday before, but it still sucks. She told me this will help him grow and get stronger and then when he gets bigger we can take it out. But he needs it right now for his cardiopulmonary problems. So we do what we always do. We hit it head on!