Oh and some people wanted my email, its firstname.lastname@example.org
Sunday, January 31, 2010
Oh and some people wanted my email, its email@example.com
Posted by Lacey at 8:14 PM
Yes we are heading to PICU, I'll update later. He is requiring to much support and needs to be on the ventilator. Blood cultures came back positive today also so vanco has been started for that.
Posted by Lacey at 12:06 PM
Saturday, January 30, 2010
I'm so sorry I've taken so long to update, I've spent the day unshowered in my jammies in the ER!
Me and Jax took a ride in a firetruck this morning. With lights and sirens even this time! It was really cool! (Yes I have a morbid sense of excitement) I was unable to keep his sats up last night on maximum support I have at home, so in we went. They'll be starting him on antibiotics because they think a little pneumonia is in there too. He is on the floor right now, but they'll be watching him extremely closely tonight because they too think we are going to get worse before we get better.
I just got home for the night. We'll see if I last all night. I've never slept away from the hospital when he's been on the floor before! I feel horrible, but I have to sleep tonight, I just have to. The only reason I'm able to leave him is because he is a one to one because of his trach, so I know there's always someone watching him. And I've already threatened the nurse with her life! I know its worse on me then him though, and I'll be calling throughout the night to check on him.
I'll be better at updating, I promise. But for now here's a hard question. Again the attending asked me if he had a DNR (why don't these people look at his binder?) And the subject once again gets brought up. Now yes Jaxson has Down syndrome and a host of medical problems that come with that. But he also has problems not caused by the Down syndrome, problems that will take his life much sooner than typical DS people. I know this is something I really need to be specific on. If nothing is on paper, and we are not there, then they do a full code. If his hearts stops and he requires CPR, his brain won't survive another hit, and he would be a total vegetable. But how do I decide exactly what to do and not do? How many minutes of CPR before we stop, or any CPR at all. Do any parents of extremely fragile kids have paperwork in place? And some advice on how to do it would be greatly appreciated!
Posted by Lacey at 6:02 PM
Friday, January 29, 2010
Last night was very long and restless, but I guess thats not new from the last few days. He got up to 5 liters of oxygen, which is as high as our concentrator goes. And that only kept him in the high 80's. I turned up the air too just to see if higher flow would help. This morning he's back down to between 1 and 2 liters. We head back in to our ped today to check a gas, and other things.
I'm not quite sure when to head to the hospital. This is our first illness with the trach. I know I can't transport him to the hospital on 5 liters, I have nothing that will go that high. Although our local fire department knows him quite well, and I know they'd love to help us out! And heck, they haven't seen this house, they might want to check it out!
Thank you dear friends for your prayers and kind words, I feel like we are wrapped in a giant hug! (man was that a cheesy line or what?!)
Posted by Lacey at 9:46 AM
Thursday, January 28, 2010
I noticed today that Jax seemed to be a little worse. I was beginning to wonder if indeed he has caught something. The chest x-ray was read pneumonia, but like I said he probably aspirated when he vomited. But my ped called me tonight from home. That's never a good sign! Jaxson has metapneumo virus, which is a sister virus to RSV. We have one sick puppy on our hands, and we are in the beginning stages of it all.
Posted by Lacey at 9:01 PM
Posted by Lacey at 9:13 AM
Wednesday, January 27, 2010
Look at what a certain boy gets to do while I get meds and feeds ready, after keeping me up all night AGAIN!
Friends, I think I'm starting to hate the trach. I don't know if this is something every parent goes through and I'm just going through it later because I had taken care of trachs before Jax. So I knew what we were getting into. And after he got the trach, his lungs immediately looked better, and he had a few nights were he slept all night! So we thought the trach was our dream come true..
I don't think I've gotten a great nights sleep since he was trached in October. And after last night being my third night in a row of NO sleep, my sanity string has broken!
Yesterday, after my long night with my worthless nurse, I had to go to the boys school first thing in the morning to see Carter get an award. Since Jax is doing this hacking cough thing the last 3 days I was not looking forward to taking him. I didn't sit down with the other parents, I had to suck Jax out a few times, and lets just say the suction machine is about as quiet as a Mac truck driving by! Luckily the lady walked by and put Carter first on the list so I could see him and then get the heck out of dodge with my hacking baby!
And Jax slept most of the day yesterday. He would wake up, cough his brains out for about an hour, and then go back to sleep, exhausted! It really does show how little strength he still has, it just wears him right out. So last night before bed I thought I would give the duoneb another try, just for kicks and giggles. So I gave it to him about 10, and put him in bed. He actually did not cough! And fell right to sleep. I couldn't believe that it worked, either that or the prednisone is starting to work. Then he woke up at 1am, but still didn't have the hacking cough! I was practically singing. But then he woke up at 3am with the hacking cough! I gave him another neb, but this time it did nothing. He coughed for the rest of the morning. I finally fell asleep around 6:30, and woke up late to get the boys up for school. I'm really going to try and lay down, but finding the time is hard.
Did I mention that I HATE the trach right now? And its probably a good thing you only know me through the computer, because today I'm quite the Grouch!
Posted by Lacey at 9:16 AM
Tuesday, January 26, 2010
One great thing about blogs is not only meeting new friends and being a big support group, but a place to get advice from people who have been in your shoes.
I need advice from trach moms!
Jax coughing is making me crazy! Sunday night he coughed all night long. His airway is red and irritated, and we think thats why he's coughing. So his pulmo wrote for flovent. I thought that was a weird inhaler to write for, since my asthma kids are on that, and I know of so many other nebs and inhalents that trach kids are on. Its not working, so his pulmo wants to try oral steriods for 5 days and see if that works. But I don't really want him on that long term. So what are your trach kids on for inhaled meds? And is there a specific one for irritated airways? I'm losing my mind!
Also we had a new nurse come out last night. She was very nice, but she's one of those paranoid nurses. One that I wouldn't want with me if something bad was to happen. I think she would freak out and I would be the calm one. She woke me at 3am and said he had a fever. So we gave him tylenol, and when I was helping her get it, she was trying to hurry me saying "I really want to get this in him". Seriously, is 30 seconds going to hurt? NO!
And this morning I looked at her notes. 99.9 was how high his temp was. Thats not a fever! I just got through telling her that his body thermometer was broken and that being on the warm humidifier and night kept him quite warm. She obviously didn't listen. I don't think having her here helped me get any more sleep than normal.
Oh the frustrations.
On a good note we got our paperwork to go get our fingerprints today. So we'll be doing that this afternoon! So for all you adoptive parents. How long does it take after your fingerprinted to be finished with the home study? Thats all we are waiting for, and I really want to get it faxed to DCSF this week!
Posted by Lacey at 10:40 AM
Sunday, January 24, 2010
A couple of nights ago Mondo asked me if Jaxson could sleep in his bed with him. I told him that wouldn't work because Mondo's room is downstairs, and I couldn't hear if Jax needed to be suctioned. Also we wouldn't want to drag all of his crap down there.
That night when I got up with Jax about 2am, this is what I saw!
The boys wanted to have a slumber party with Jax, so they slept in his room! Isn't that so cute? I think next time I will take Jax out of his bed and let him sleep on the floor with his brothers!
Why are my crazy brothers in my room?
Posted by Lacey at 3:11 PM
Friday, January 22, 2010
Posted by Lacey at 4:10 PM
Thursday, January 21, 2010
Tomorrow we are having our home study! So today will be spent running to get my birth certificate, two fire extinquishers, and frantically cleaning the house. To top it off, we got a ton of snow last night, and its still snowing! Oh how I want out of Utah, I'm tired of yucky snow. So my guess is that my nurse will call and say he can't make it through the snow, Ugh, I really need him today!
I know I have no reason to be nervous, but man I am. I had a few minutes of calm in bed last night, thinking that the lady will love us. I don't know how quick it will go after that. I want to get the home study faxed to the case worker now! I want to find out if they will give us this baby girl. Oh the wait is maddening! I can tell you what little I know of the baby, and this is from before Christmas. She was a 24 week preemie, twin. She supposidly doesn't have all of her brain, but she eats by mouth, tracks and prefers certain people, and makes baby babble. Oh and reaches for toys. All this at an adjusted age of 5 weeks! She was 5 months before Christmas, and only weighed 7 lbs. I was also told that her fontanel has already closed so her skull won't grow with her body. But I know that can be surgically fixed. She also has cerebral palsy. I just want to get my hands on her and her medical records. The case workers have no medical background and just don't know what their saying. Hopefully we can meet her next week! So just pray that we stay calm and don't say anything stupid tomorrow!
Also, I talked to my ped about the ok sleep study and the fact that he still wakes up so much. She wants me to take him back to his rehab doctor. She said that sometimes brain injury kids don't sleep great, spasms or other things, and this doctor might have some good things to try. Also I wanted to look into getting his cecostomy out. We didn't know if it would work in the first place, but with the trach and all the air that he swallows, I haven't even used it. And since stool can leak out its always red and irritated. But they just told me it has to be surgically removed. Ugh, I didn't know that. Didn't I say in my New Years resolution that I wanted less surgeries this year? And its only January! We'll make an appointment with the surgeon and discuss what would be best!
Posted by Lacey at 9:02 AM
Tuesday, January 19, 2010
Posted by Lacey at 4:03 PM
Monday, January 18, 2010
Yep I'm at it again. Yesterday we walked around the mall and got lunch. We walked past a little kiosk that sold the hair bows and tutu's I've been dying for. Of course I had to pick up a couple things!
I love the mix and match bows, how you can clip them on a headband or just put them in their hair. She is going to have tons of these!
You don't understand what this means for me.(Well some do!) I've been wanting a girl for 12 years now, and the fact that it is so close is just killing me! It is a bit overwelming because its like having your first baby all over again because we have nothing girl. But I don't want to go to crazy in case something doesn't work out. But you know that would just devastate me.
We talked to the lady thats doing our home study and she said she can come do it this week. The background check should be coming back soon, it was sent out the week before last. I'm not as nervous about the home study as I was before. She said she doesn't care how clean the house is. Just how we are as a family and a couple and our family dynamics. So all you moms that have adopted, any advice would be greatly appreciated. Or a little insight as to what they do when they come out to your house.
If all goes well, our new little sister will be here in a couple of weeks! Then she would be coming with us on our first California trip in March! I can tell Ray is excited too because he said we HAVE to get her a princess dress from Disneyland, and that we need to do the princess character breakfast!
I don't know how adopting through the foster system works either. I don't know if its more involved. Again, any advice is greatly appreciated!
Posted by Lacey at 10:48 AM
Sunday, January 17, 2010
Happy Sunday! You have to watch this video. Its so cool! I have liked the Black Eyed Peas for a long time, but I really love this song. Its my ring tone. Its called I Got a Feeling, and they just talk about that they know its going to be a good day, and to live life to the fullest. Definitely our motto! But this video is just cool, watch closely!!
Posted by Lacey at 11:10 AM
Friday, January 15, 2010
Sleep study done, and we are both relatively unscathed. I think I've got a cold. I've had the beginning stages for a few days now, so I'm guessing my flu shot is preventing it from getting horrible. Or its total lack of sleep from a another sleepless night in the hospital. Who knows!
Posted by Lacey at 4:15 PM
Thursday, January 14, 2010
Last night Jaxson was trying so hard to roll over, so we grabbed the video camera. Remember to pause the music and just ignore the squealing moron in the background!
As you can see he still can't make it all the way over. Someday maybe! While I was downloading this video I found another video that we did right before the trach. I wanted to get his sweet voice on tape before we trached him. Watching it was the first time I really broke down since he was trached. Oh how I miss that sweet voice!
We have our sleep study tonight. I'm anxious to get the results of that, to see if we are adding even more equipment to our load!
Posted by Lacey at 10:32 AM
Tuesday, January 12, 2010
Last night I was on babylegs.com, because you know I love those for Jax, and I was looking at some cute girl babylegs. I wanted to buy some so bad, but I'd made a pact with myself. No buying girl stuff before you have the girl!! You will just jinx yourself.
I needed some reassurance so I called Ray in. He said, go ahead, buy some. Great, thanks for the help honey.
Needless to say I bought a pair of girl babylegs!!
But after I did that I soon found myself on Etsy, looking at everything girl.
From hairbows and tutu's,
to baby beanies.
Yeah, I'm in big, big trouble!
I really hope I didn't just jinx myself, I really, really want that girl!!
Monday, January 11, 2010
We had a dentist appointment today for all four boys. I am proud to say that all four boys are still cavity free! I don't know where they get their teeth, its definitely not from me or daddy, we both have horrible teeth. The mailman maybe! It doesn't matter to me, as long as I don't have to pay to get cavities filled, I don't care!
Jaxson does have some more teeth coming in. Because he's never eaten by mouth, his teeth come in very slow. Right now my 4 year old has his 4 front teeth, and his 4 back molars, that's it. But he said he could feel both of his eye teeth, so maybe more are coming. I think we have a new night nurse coming tonight. It will be weird, since the guy never came out and oriented, he doesn't even know Jax. We'll see how it goes.
I had a bit of a flashback and horrible realization today. I was watching celebrity rehab (because Dr. Drew is so very fine) and they were talking about methadone. How some people get addicted to the methadone that is supposed to be weaning them off their drugs. It made me think of Jax, and the fact that he was an addict at one time. Of course not on illegal drugs, and not of his own doing, but its so sad to think of my infant addicted. He was on fentenal and versed for almost 4 months straight, so he had severe withdrawals. He came home on a crazy drug schedule. Methadone and ativan weans. Alternating between the two every two hours, and every other day lowering one of the meds doses a little, to get him off. It was a horrific schedule, one were my notebook became my best friend.
So sad what our brave hero's go through!!
Sunday, January 10, 2010
Our power went out this morning about 7:00. We were sound asleep and heard a strange beeping that wasn't a typical beep. It was his concentrator. Then his monitor went off because his sats started to drop. It wasn't as big of a catastrophy as I thought it would be, although it does remind us that we need to buy a generator in case our power is out for a long period of time. We have a child that uses 5 outlets at night. But his feeding pump, monitor, and suction all have battery life so they kept going. but we had to take his humidifier off and put the nose on a portable tank. So crisis averted this time. Whew!!
I'm so excited that our adoption paperwork is moving forward. Background check is being run as we speak! So again, if you know how to set up a raffle on your blog, or have something to contribute to the raffle, please email me at firstname.lastname@example.org.
Now for some cute pics of the little man. He wasn't cooperating very well last night, and was giving us some pretty sour faces! Also I noticed a few weeks ago, his left eye is a little more droopy than his right. Its really noticable in these pics. I need to take him to the eye doctor anyway, we'll definitely have this checked out.
Posted by Lacey at 12:19 PM
Friday, January 8, 2010
Well I didn't get as much sleep as I'd hoped, but it was definitely a better night. I took two melatonin, and still didn't fall asleep until after midnight. At least when I did hear Jax, I didn't fly out of bed forgetting a nurse was there. I'm thinking I may need to take a sleep aid, I just don't know what to take thats not addicting.
I was thinking of have some raffles to raise money for our adoption. I'm not going to do a whole adoption blog, I just don't have time for that. Plus I don't have a face to raise money for like Reeces Rainbow. But I do think fundraising is a great idea to help fund adoptions. If anyone has anything to donate to raffle, that would be great. I think I'm also going to raffle some blankets, they are always a favorite. Also, as I said before I'm a complete computer nerd, so anyone who knows how to post something at the top that will stay there for a while, please let me know also!
Speaking of blankies, here are a couple of rememberance blankies. I'm posting these because I have faces to put behind names. This first blankie is for a friend of mine that I've never met in person. Her little boy had DS, and he passed away from the same clotting disorder that Jax has. We've talked many times, and she always has great advice for me.
This sweet baby's story just breaks my heart. Jayce had multiple heart defects, and spent his short life never off the ventilator. But he touched so many lives while he was here!
Posted by Lacey at 11:16 AM
Thursday, January 7, 2010
I love my new blog, thanks to the polka dot pig! I don't do my own blogs, I'm such a computer nerd, if I even tried I would end up deleting all my stuff. So I leave it to the experts.
Yup, a naughty, not-sleeping little boy. He fell asleep on the floor and I wasn't going to risk waking him up. Tonight we have our first night with a nurse. And it couldn't have come at a better time. This is how my night last night went.
Posted by Lacey at 10:45 PM
Wednesday, January 6, 2010
We had a pulmonology appointment today. Have I said how much I love her? Every time we see her she spends an hour with us, talking about everything under the sun with him.
It was a trach follow-up, but also I wanted to talk to her about how he still doesn't sleep at night. I've caught him desatting twice while sound asleep. Some people say he probably had a mucous plug, but he was not junky, and he never even stirs. It was just like before the trach. So here comes the medical jargon..
We talked a little about lung disease. I wanted her take on what causes lung disease. I had heard that being intubated and on the vent causes lung disease. Well she said that just being on the vent doesn't cause lung disease, its the pressure the vent is pushing. So if they are really sick and have a really high peep, thats causing more damage. And he's definitely had some extremely high pressure support on the vent. Looking back, there was a couple of times were they probably should have put him on the oscillator just to save lung tissue. There was twice were he was at a peep of 15, which is the highest they will do on the conventional vent. Extubation is usually around 5, and they consider 8 and 9 to be a lot of support. So 15 was basically trying to shove air into his lungs, not good.
Also she said the DS kids in general have smaller, weaker lungs. And of course refluxing and aspirating does a lot of damage. And then you have pulmonary hypertension, that does damage. So there are a lot of reasons why Jaxson's lungs in particular are toast! She said he probably will never be able to come off the high doses of diuretics he still requires, that his sick lungs sluff off a lot of fluid.
She does a lot of shaking her head when she meets with us. Not in a bad way, just amazed at how complicated he is. When looking at him, you have to think of everything before you make decisions. He has pleural effusions on both lungs. Its chylus fluid, which he has a history of having out of the blue. But chylus fluid is fatty fluid, and he is on an all fat diet for his seizures, so it makes the effusions worse, but we can't do anything about it because he needs the diet. How this kids lungs even work is beyond me!
She wants another sleep study, yipee! (Sense the sarcasm?)
She thinks he needs the vent at night. I knew that was the direction we were headed. But if it will help the kid sleep at night then bring it on. She thinks with his already sick lungs and severe hypotonia, that he just needs a little extra help when he sleeps. She's thinking c-pap settings on the vent will give him the extra push he needs to oxygenate well.
So we will have the sleep study with a full EEG because of his seizures and go from there.
Tuesday, January 5, 2010
Jaxson getting in a serious workout!!
I'm giving the blog a makeover so things might look a little screwy for a while. I love my Mickey background, but we've had it a year and it will be nice to lighten it up a little. The black is just too dark.
I've been in a great mood since New Years, excited to start some new things and hoping for a great year. Then I realized that with the new year means starting over with deductibles and reaching our out of pocket.
I hate this time of year. Yeah Jax hits his out of pocket in Febuary, but I will be getting tons of different bills from a million different places until that happens. And spending a lot more money. We joke that if we didn't have Jax our mailman would be bored. Every day we get at least 2 things from our insurance for Jax (a waste of paper in my opinion, to tell me what was charged but that I don't need to pay it) I really shouldn't complain, we are lucky. We have great insurance, and they cover just about anything. Plus our lifetime max is 2.5 million instead of the typical 1 million. Meaning we are saved from losing insurance for at least a little while longer. He passed the 1 million mark last year. So now the medical bill paying begins again!
I also talked to our resource nurse, who knows everything available to special needs kids here in Utah, and she had no great plan to continue nursing care. A lot of people have mentioned the Katie Beckert waiver, but no one in Utah knows what that is, so I don't think Utah has it. Like I said before he is on a waiting list for a waiver for technology dependant kids. Meaning they have to be trached or on c-pap, but it will be about a year before we get it. Which means the end of this month we lose our nursing care! I can appeal it with my insurance, but I won't get coverage while appealing. I can talk to the nursing company and work out a deal to pay them less, but it would still be out of my pocket and expensive. Now I know I won't die if I don't have nursing care, I've done it for 4 years already. But a trach is a lot more work. I haven't had a full nights sleep since the trach. And now that i'm getting a night nurse, I will lose it at the end of the month!
Posted by Lacey at 2:15 PM
Sunday, January 3, 2010
Jaxson love's those cheaker's kissed!!
Today we finally tackled rearranging Jax room. Putting his new crib and new chair in there, because I'm sooo ready for some night help! As we started moving things around though, what I had envisioned in my head wasn't going to work. So we did a lot of moving and changing. The concensus....Jax does indeed need the master bedroom! Now that we have two IV poles to add to everything else, there just is not enough room. His stander is now shoved in the corner of our front room because it just doesn't fit. And one of his rubbermaid shelves with supplies in it is stuck in his closet to save space and make his room look as un-medical like as possible (which I think we accomplished nicely) The colorful shelves hide medical supplies, although its getting to small. I'm thinking about selling it and getting a bigger one that has nine shelves.
Posted by Lacey at 9:43 PM