Jax continues to do well. A few minor things of course, that's bound to happen. His IV blew in just a few hours, and it left a nasty abscess on his arm. He had a rash from who knows what, so he got benedryl for that. Probably the biggest thing was they switched his seizure med, because they couldn't get topamax in IV form. They substituted it with phenobarb, which is not remotely related to topamax. As a result from stopping the topamax so suddenly, he had seizures that we haven't seen in a long time! I was quite worried. Despite the fact that Jax was on pretty hefty doses of phenobarb for 5 years, he's been weaned off it for a year. So these big doses of phenobarb have totally snowed him! He wakes up for a few minutes, and then goes back out. He has basically slept completely through the last two days. Luckily neuro caught the boo boo and ordered the phenobarb stopped immediately!
Saturday, May 18, 2013
Posted by Lacey at 11:59 AM
Thursday, May 16, 2013
Jax is out if surgery and doing well. Even though I told anesthesia, they took him off the vent in post op. his respirations were double what they normally are, so I told them to put him back on. He immediately went back down to baseline. 4 hours later and he is still super groggy. He wakes up long enough to thrash, and make faces, and he goes back out. When he wakes up he retracts a lot and his little nostrils flare, even on the vent, so we'll see how he does when he really wakes up.
Posted by Lacey at 3:42 PM
Tuesday, May 14, 2013
Wow, time flies when your a busy momma!
Posted by Lacey at 3:57 PM
Saturday, May 4, 2013
I guess Jax felt like we were getting a bit too comfortable, and we had let our guard down. Well now it's back up, and back up big time!
This little baby now sits on the back of Jax crib, instead of in its bag, hanging on his supply shelf.
He had a plug in his trach.
Its never happened this fast, ever. In the two minutes it took me to get into his room, his airway was completely closed, and he was blue. I grabbed my spare trach, which is right there next to his bed. But he was already starting to lose consciousness! Thats when I panicked just for a millisecond. I wanted to get his ambu bag, so I could give him rescue breaths, but I also knew the trach had to come out. He has never lost consciousness on me before, NEVER! But the ambu bag was not within my reach, so my shaky hands hurried and got the clean trach out and the obturator in, so I could switch trachs. I was able to do it and get him on his vent before he completely passed out. But it was horrible!
I've seen Jax blue at home before. He can be a naughty, naughty boy! But he rarely gets a plug, in fact, he never had a plug the first two years he had the trach. Only in the last 6 months have I had to do emergency trach changes for a plug.
I feel like I've seen just about everything. Between what Jax has done in the hospital, and when I used to work there, I've pretty much seen it all. I've helped with CPR on kids, I've seen Jax code. I've seen his heart rate drop so low, that I think his heart is just going to stop!
I've always been able to remain calm. I've been told in those situations with Jax that I was amazingly calm.
I wouldn't say I wasn't calm on this morning. I worked quickly to do what needed to be done. But deep down inside my soul I was screaming! I was completely and utterly in a panic!
Some people said, oh I wouldn't have been able to do that. Yes you would, when its your child, you would. This is why there is extensive training in the hospital before you can bring a child with a trach home. Add the ventilator and you add another 3 days of training. Although I already had the training, that didn't mean that I was off the hook. I had to sit through that training just like daddy did. And its for these exact situations that they teach you all you need to know!
I guess that was a wake up call. Its been a while since Jax has done something like that. He just wanted to make sure we were always prepared for what may happen next. And to never forget how fragile life really is
Posted by Lacey at 11:22 PM
Monday, April 29, 2013
If you remember a couple weeks ago I told you about a contest where the top 3 winners get a handicap accessible vehicle. I haven't posted about it again because about a week after we entered, I found out that the person in first place had over 34,000 votes! We had just over 1,000! I knew then that there was no way would be able to catch up to that person, so I ditched the contest and started researching ways we can purchase a van for Jax.
We went to our local dealer, and they are wonderful! They are actually a DME company so they are also helping us get Jax his specialized wheelchair that will fit his multiple needs. With this wheelchair we are going to need an accessible van. More than likely his chair will not fit in the back of my van. My van cannot be converted to the kind of wheelchair van we need that will still seat all of our family. Its actually more money to do the complicated conversion that the van is worth! I was actually excited to see that there are in fact vans that are not the super big ones, but will still seat all of our kids! Here is a picture of the van we need for Jax.
We are doing a bunch of fundraisers to help us buy this vehicle. I'm still working out how much it will cost. I'm going to trade my van in, and I'm still looking to see if Jax insurance or the Regional Center will help with any of the cost. These vans start at 40,000, so they are a chuck of change! Hopefully with all these together, we can buy Jax van!
One friend is donating all of her profits from jewelry sales to Jax van fund. Click here to see the catalog. Write down the item numbers for what you want to purchase, and then go here, to her facebook page and message her your order! That way it will be known that this order is for Jax van!
The other fundraiser right now is some fabulous fitness wraps! The profits from each wrap also goes to Jax van! Click here to see that fundraiser!
We have a few other fun fundraisers coming up! We are going to have an online tupperware party, loving that one! Our dear friend Cammie is also going to do a 31 fundraiser. 31 is totes and purses and other fun things you can have personalized! We are also going to be doing an auction. If you have anything you would like to donate, please email me at email@example.com.
Here is Jax donation page where you will pay for auction items and other things for fundraisers. You can also make a cash donation if you wish to just do that.
We will get Jax his van he needs! I know we can do it, with the help of all of our great friends!
Posted by Lacey at 2:04 PM
Wednesday, April 24, 2013
Tanner and Carter play with these boys that live down the street. They are identical twins, and to this day I can't tell you which one is which!
Usually the kids are outside, we have a park just around the corner, or they play basketball, or just enjoy being in the California sunshine. The other day they came in the house to try one of Tanner's new videogames, and they played inside for a while. About an hour later, they were outside when I walked out with some trash. Tanner said to me, "does Jax have a cruel life?"
That question made me stop in my tracks. Whatever would make Tanner ask that question? Apparently the twins were asking why Jax has all of his tubes, and Tanner was telling them about his frequent hospital trips, etc. One of the boys said, oh he has a cruel life.
Is it cruel to be poked and prodded all the time? To have frequent surgeries and hospital stays? I'm not sure if cruel is the word I would use, but yes, its not fun.
Does Jax have a cruel life? To me that would be a big fat no! Jax doesn't understand that he can't eat good food. He doesn't understand that he should be able to walk, or even sit up. He only knows the life he lives, no different, and his smiles tell a big story.
Jax very rarely cries. I mean never! Even being poked for blood doesn't usually lead to tears. He is a very happy go lucky kind of kid. And lets face it, he doesn't have to worry about bills, or bullies, or jobs. He's got a mom and dad and siblings that kiss on him all day long. Not to mention a bunch of fans that would love to do the same.
Would I take some of the medical problems away from Jax? In a heartbeat! But I would never change who he is, he is perfect in every way. And you can look at these pictures and decide for yourself if you think Jax lives a cruel life!
Posted by Lacey at 8:54 AM
Monday, April 15, 2013
I never truly understood what it meant to have a good pediatrician until we moved out of state! We were very lucky that when Jax was born, we had already had this fantastic pediatrician for 7 years.
I know you have heard the problems we've had finding a doctor here in California. In a year and a half we've tried and dumped 6 docs, and talked to dozens more on the phone. Most wouldn't touch Jax with a ten foot pole. Some said I needed a doctor that worked out of a childrens hospital, because they deal with complicated kids. But I found that those doctors offices were super busy, filthy dirty, and had residents that made the appointments twice as long and not as personable.
Then I thought I'd found the perfect doctor. She was outspoken, just like our ped in Utah was, and she was very involved. I thought, finally, after a year we've found the one.
Then came the incident.
Now most would tell me I just need to chill out, or that I'm over reacting. But walk a day in my shoes with Jaxson. You would agree with me in a heartbeat!
I took a form into her office that needed her signature. The lady at the desk told me it would be 10 dollars to sign the form. I about dropped dead. I have a stack of five or six forms at home that needed to be signed for Jax to start school. Your telling me I have to pay 60 dollars to have papers signed?? Now a bunch of people have told me their doc makes them pay to sign. Thats fine if you stay with them, but I will not! I've NEVER had a doctor make me pay to sign a form. I feel like that is part of their job as a pediatrician!
When I talked to her on the phone about it is what sealed the deal that she was kicked to the curb. She claimed that she signed this paper at home, at 11 at night. To which I replied....bull crap! It takes 30 seconds to sign a form. The way she was talking to me made it clear that she was more concerned about money than the children she cares for. When she told me I could find someone else I said, I sure will, click!
Now doctors in California are different than doctors in Utah. Its just the way they do things. I've accepted that, and remembered that when looking for a pediatrician. But I work so closely with the pediatrician, that I'm an expert when it comes to what you need in a doc. I say this because most people that I talk to say they LOVE their ped, but I could walk into the office and find multiple things that would have me looking elsewhere. This is probably why my pediatrician in Utah that I had for 13 years wants me to sit down with her and write a book. I'm all for it, and we plan on getting together at some point and actually do it, if I can ever get back to Utah for a long enough period!
I have finally found the pediatrician I've been looking for the past 1 1/2 years! And you want to hear something strange? She does not have that much experience with fragile children. But I would still recommend her to any mom of a fragile child that asks for help finding a doc.
First thing, she does NOT charge to sign forms!
Second, her office staff is amazing! They answer calls quickly, and return calls usually within the hour. My prescriptions are refilled as soon as they hit her office, and messages are sent to the doc immediately.
Like I said, she has never had a complicated kid, Jax is by far her most medically fragile. But she listens and goes by what I tell her. She calls whoever she needs to call to get our answer if she doesn't know it. She has jumped in with both feet, and she gives her time and undivided attention, which is what we need. I actually think Jax is great for her. I think he is going to further her education. He is going to make her think and he's going to make her use those skills to the best of her ability. I'm really excited to see where this relationship leads us. Hopefully it will be like our doc in Utah, who is still like a member of our family, and we continue to talk on a regular basis.
I found this doc just in time, because we have kept them super busy with paperwork and insurance crap getting things covered this past month. I can't even begin to imagine what the other ped would be saying, or how much she'd be charging me for this "extra" stuff.
She needs to remember that this paperwork is not "extra" for us. Its what we deal with on a regular basis. I don't get paid one cent for the phone calls and paperwork I do on a daily basis, and she shouldn't either!
There is one thing still missing with the doctors here.
Our ped in Utah started the Medical Home program. Its basically where the ped is involved deeper with the child and family than a regular doc. Instead of all the specialists being separate and getting conflicting info, everyone goes through her, and she is the "center" if you will, of care. They have a nurse that helps, and its like having your own team that is always available 24/7. I haven't found a medical home here. I may bring it up to our new ped. If your interested in learning about medical home, here is my old pediatrician talking about it. Ask your doc if they have that program, or know about it. If they don't, its something to research and try to get in place in your local peds office!
Man I miss this women so much!! She actually talks about Jax in one of her interviews, makes me tear up every time I watch it!
Posted by Lacey at 9:17 PM