I love halloween, and I'm ready to go Christmas shopping!
Have a good day and be safe everyone!
Posted by Lacey at 9:42 AM
Ok, my pictures are all out of order because blogger is being a bugger and won't let me move my pictures.
Posted by Lacey at 10:36 AM
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.
Posted by Lacey at 8:52 AM
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.
Posted by Lacey at 10:22 PM
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.
Posted by Lacey at 10:09 PM
In the car.
Posted by Lacey at 5:26 PM
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.
Posted by Lacey at 10:30 PM
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.
Posted by Lacey at 3:15 PM
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.
Posted by Lacey at 8:06 PM
Jaxsons dinasour from his buddy Phoenix. Thanks Phenny man.
Posted by Lacey at 3:56 PM
Posted by Lacey at 10:49 PM
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.
Posted by Lacey at 4:20 PM
Posted by Lacey at 9:01 PM
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.
Posted by Lacey at 4:33 PM
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.
Posted by Lacey at 2:42 PM
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.
Posted by Lacey at 9:00 AM
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.
Posted by Lacey at 7:13 PM
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.
Posted by Lacey at 1:11 PM
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.
Posted by Lacey at 10:52 PM
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.
Posted by Lacey at 5:38 PM
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.
Posted by Lacey at 9:26 AM
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.
Posted by Lacey at 11:03 AM
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!
Posted by Lacey at 9:41 PM
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.
I couldn't resist a cute butt pic when he rolls on his side.
Posted by Lacey at 10:22 PM
Posted by Lacey at 6:43 PM