Jackson stayed home from school today

Because his bus was so late!! When I called the bus company they said the bus would not be there before 9:30 which means the earliest he was getting to school was 10am. School starts at 9. They load them on the buses to go home around 11:30 so at the most he would be getting 1.5 hours of school with 1 hour of bus riding. Ugh!

Here's one for the ages...

I have not mentioned this here yet, but Jackson's GJ got clogged up a couple weeks ago. So I took it out and placed a regular G-button. Because of that, I am trying to get all of his water and calories in during the day instead of doing some at night like we used to. He is doing well with it so far, but here is what happened this week.

Because it is too hard for me to get all of his water in on the days when he goes to school, I asked the nurse a few weeks ago to give him 5 oz of water at the end of the day by syringe. I sent a 60ml syringe in for him. I told her to go slow, but not too slow, maybe 1 minute per ounce.

So I was there observing yesterday. I saw the nurse give him a tiny little amount (like 5ml) by syringe right after his feed ended. I thought to myself well, maybe she is just flushing after the feed...even though before I asked her to give him water, his tube was never flushed after his feeds.I did not see her give him any additional water and I was there until he got on the bus to leave.

So when they get to the house I asked her if he got his 5 oz of water. She said "yes, you saw me right there by his chair give him the water." I said "that wasn't 5 oz of water!" Then she said that it was 5 ccs of water and a cc is the same as an ounce!!!!!!

WTF!!!?

So what kind of a nurse doesn't know the difference between a cc and an ounce?! Why would I send a 60cc syringe if I only wanted her to give him 5ccs?! I am just dumbfounded! And upset that Jackson has not been getting his correct amount of water!! No wonder he has been constipated!!!

So I made sure the nurse who was doing his feeds as well as her supervisor knew what happened and I very clearly spelled out exactly what he should be getting.

I got this in his notebook today...

"Hi Chaney, We technically should have had a Dr's order for the water. On reviewing his orders I see the last one we had was from 5/06 for tube. We need a new one each year. I'm sending home a blank one, please return when the Dr. has completed. Thanks, M"

No "I'm sorry my nurse is a total dumb ass" or apology of any sort or any mention that 1 ounce does not equal 1 cc. It is always about placing the blame back on me for anything harmful that happens while he is in the care of the school. This is not the first time, as some of you may remember. (Not that I post everything here anyway, since the principal printed out the blog entry from when he got choked on the bus and slapped it down on the table to intimidate me when I met with him about it!)

Can you believe I have to get a doctor's order so the school can give him WATER!?

The order she sent home was for "Tube feeds plus 5 oz of water". I am going to change it to "Tube feeds plus anything else mother tells you to do" (I am serious!) just to piss her off.

Jackson's new AFOs

Jackson got his new AFOs this week. I can not believe they actually fit him because they look so big compared to his last pair! He picked out the dinosaurs and the blue straps all by himself.

They are different from the kind he usually gets because they were made in 2 parts. They are a little harder to get on him, but they seem to be comfortable and fit well.


Here are the last 2 pairs compaired with the new pair. I don't think I have his first pair anymore.

Feeling a little guilty for not updating in so long!

But you know how it is...we are busy!

Anyway, Christmas was fun. Jackson got a lot of fun presents. His Granny came to town to visit so he got to have fun with her and get MORE presents! But I have to say...the biggest hit of Christmas was a complete surprise to all of us when it showed up today at our door!

Some clients/friends of Lee's sent Jackson the coolest remote controlled firetruck!! It is adapted so that he can use his switches with it. It is very loud and Jackson just loves it!! Thank you so much Megan and Chris!!

Oh my goodness!!

I think Jackson just wrote his name!! We were coloring a picture for his Aunt Rachel who is coming in tonight. I help him hold the crayon but he moves it around to color. I try very hard not to move his hand at all so he can color how he wants to (it drives me bonkers when the therapists move his hands around while he is coloring!). So then I asked him if he wants to write his name on it, usually he will smile or make a sound to say yes and I will help him write his name. This time he did not say anything so I just let him keep coloring. BUT, what he did with the blue looked very different than the other colors...I swear that he wrote his name! For sure he wrote a J and an a and then it looks like a k and a c.

Look!!


Sorry Aunt Rachel, I am keeping this one!

A couple appointments this week

First, Jackson had a urologist appointment. This was because about 3 months after he got sick a doctor noticed one testicle was missing. It had been there but apparently went back up. The theory was that when his tube became displaced he was in so much pain that it went back up. Or I guess it could have been during the initial brain injury but no one noticed it was gone until he went back to Children's for the tube displacement.

Well, the urologist looked everywhere for it and could not find it. He said he did feel something very small in there but nothing like a normal testicle. He said it could have been a torsion which means it became twisted and died. But we never noticed any swelling and a torsion is usually accompanied by swelling. However, that was during a time when a lot of life and death stuff was happening so maybe we just missed it. He wants us to get an ultrasound to see if it can be located.

Since everything just got way more complicated than I thought it was going to be, I really wanted to see a pediatric urologist (this guy sees mostly adults) and would feel more comfortable in a good children's hospital rather than the hospital system Jackson's pediatrician referred us to.

Yesterday we had a GI appointment. For once it was a good GI appointment, the GI is usually not very helpful at all and we are probably going to get a new one. This was our first appointment with him in about 6 months. We told him that we decided to start feeding Jackson through the G-tube and that he is doing very well with it for the most part. We also told him that we would like to start moving toward a more food-based diet for Jackson rather than just formula. I have done a lot of research on this and believe it will be much better for him. With just the small amount of baby food he now gets with his formula he has improved a lot.

We met with the dietitian about our ideas for this and told her what we needed from this diet: vegetarian but dairy is ok, about 800 calories (because Jackson barely moves he can gain and grow on very little), as low volume as possible, and must go through the pump. She is looking over what we brought in and running it through her nutrition software to make sure it will provide all the micro nutrients needed and she is going to call us back next week. Then when we get our Vitamix blender (we are waiting for the settlement for that) we will be all set to start.

We need a very good commercial blender like a Vitamix for this because everything has to be ground very fine to fit through the tube, but especially so if we are sending it through the pump. A normal blender would not grind everything finely enough and the motor would burn out very quickly. The Vitamix is very expensive but they do have a program where families can get refurbished blenders for half the cost if they are using them for medical purposes.

Our guy is now 51.5 lbs and 3'8.5" tall. His BMI is improving since he is getting taller but not gaining much weight.

We also asked him about the testicle situation and he said he should skip the urologist and go straight to a surgeon because wherever the testicle went he is probably going to need a surgery anyway. So he gave us the name and number of a surgeon there at CHW who I will call soon.

Some art to share

Yesterday Jackson and I busted out the watercolors! We made 2 paintings. One is for Grandpa Chuck who is recovering from surgery and one is for Great-Grandma Kate who is in the nursing unit at her senior home because of troubles with her legs. Jackson needs help holding onto the paintbrush, but other than that does the painting himself. I think they are beautiful paintings!

Physiatrist appointment and really cute video

Jackson had an appointment with his physiatrist a few weeks ago, I just haven't had time to update yet. We saw her at her main office instead of the hospital we normally see her at because I have major issues with their billing and refuse to go there anymore. Unfortunately, the other office is a much longer drive but whatcha gonna do?

It was a long (as usual) appointment but a good one (as usual).

We talked about his Shriner's appointment and she was kind of shocked that he sat for his spine x-ray also. She had the same thoughts as me about the goofy position contributing to the appearance of scoliosis on the x-ray and thought it would have been better to lie him down. But she said the Dr. he saw is world renown so he should know. Then she looked him over front, sides, and back and even sat him up to look too. And in some positions he looked totally straight but in others she said she could definitely see the curve.

We talked a little bit about his seizures.

We talked about the denials from insurance. I don't think I have blogged about this yet, but lately insurance has been giving us a lot of denials. Even though his dynavox was preapproved, now they are saying they will not pay for it...so they are saying I owe the provider close to $5000. I am not that surprised by it though considering earlier in the year they actually paid for stuff and then asked for their money back! Also, they were denying a new pair of AFOs for Jackson but they did change their minds about that one. She is going to write another letter of medical necessity for the appeal for the dynavox.

We spoke about how the drooling clinic at CHW recommended botox and I asked her if she could do it since we couldn't get it worked out for when we were there. She said yes, she would do it but would like for him to try one more med first. So she gave him an rx for ditropan. She said some of her patients say that works better than robinul (which he takes now).

She is going to write a letter for him to get a vaccine exemption. His vaccines are up to date now but when he turns 5 he will be due for more. Illinois does not have a philosophical exemption; the only exemptions we have are religious and medical. I am not sure what hoops we will have to jump through to get the exemption, but the letter will help.

Even though we think his tube site has been looking a little red and crusty lately, she thought it was so beautiful that she had to call the resident and med student over to check it out!

And I asked her if she knew of any medical insurance advocate services that we could use once we get J's vaccine settlement. It is causing me serious stress dealing with all these denials from insurance, and hopefully an advocate would be able to make the process a little easier.


Saving the best for last! Go check out Jackson's new video in his photo gallery. He has been singing to his music more and more lately. And he just loves to sing to this particular song most of all. I was so happy to finally catch it on video...I had a mouth full of crackers so I had to stop chewing to get it on video so you would not hear the crunching. LOL!

New seizure med

As it stands now, the neurologist is starting Jackson on a medicine called lamictal. The main side effect from this med is a really bad (and sometimes life-threatening!) rash. To avoid this, we are going to taper up very slowly, over 16 weeks. With the slow tapering up there is less than a 1% chance of getting the rash, but it is still something we need to be watching for.

He had his first dose last night, and he slept really badly which is common until he gets used to the dose and it will probably happen each time we increase.

The funny thing is that both the neurologist on the floor last week and the nurse I spoke with this week say it is "a really good medicine", but the way they say it just makes me chuckle. They have such genuine affection in their voices when they talk about it. I have not seen that with any other medication before, and Jackson has been on quite a few.

Halloween pics and more...

Jackson wanted to be a dinosaur for halloween this year. It was definitely not a good wheelchair-sitting costume with the spikes on the back and the tail, but it was what he wanted to be. He wore the costume to therapy on Tuesday and to school on Wednesday, but he decided he would rather stay home than go out to trick-or-treat. They had lots of fun halloween stuff to do at school anyway, and he doesn't eat candy so it was probably a good choice.

When we were at therapy, a kid came up to Jackson and was really checking out his costume. Then he says "Wow! He looks like a real dinosaur!" It was really cute!



Here are a couple pics from the hospital when he was doing his VEEG.


A few of my boy and his doggie...

School Picture

Much better than last year, don't you think?

We are still here

at the hospital doing the VEEG. Here is the story...

When we first got here on Wed. the nurse practitioner told us that from the videos I took at home as well as my descriptions and their knowledge of low tone CP kids, they felt that there was a chance that the retching episodes were actually seizures. If it turned out that they were seizures it would also explain why no meds are helping and they might be better controlled with different seizure meds. I spoke with the doctor later that day and she said that it appeared that he was having seizures, but she did not have much info since we had only been there for a few hours.

Yesterday, I spoke again with the doctor. Bad news. He is definitely having seizure activity, however there is no correlation with the retching episodes. He had a lot (over 40) of electrographic seizures that could not be seen clinically...meaning they can been seen on the EEG, but there are no signs when you look at him that he is having a seizure. They were very short episodes though, most around 5 seconds or less.

The plan was to keep him here for another night just to be sure they were seeing all of his typical behavior and then decide if they were going to do anything to his meds or not. The doctors meet at 11 and then start rounds so we may not know anything for a couple hours yet.

Hopefully we will be discharged sooner than later since I am dreaming of beating the traffic going home. Doesn't look like that is going to happen, it will likely be a long trip home both because of the traffic and because the weather is not all that good today.

On the positive side...we have out own room and it is a decent size. It has a bathroom with a shower. And wireless internet!!!!! Definitely nicer than Children's Memorial in that respect. However, the cafeteria is not as good as CMH by far (which surprises me since I never though theirs was good at all!) and I know where the free coffee is over there. I would do some exploring here, but you can't leave the kids alone in the EMU so if I go anywhere I have to call the nurse to stay with him.

Coming up this week

This is the week Jackson is having his Video EEG (long term seizure monitoring). Jackson will be inpatient for at least 24 hours but possibly as long as 48 hours. We will be in Milwaukee for this so sadly Daddy can't come visit us while we we be there. If you want to check out where we will be staying click here, click on Special Areas of Interest Tour, and then click on the first little picture at the bottom of the pop-up screen. It will give you a 3-D tour of the unit, you can click on different hotspots in the tour for info.

We are also hoping to arrange to have Jackson's botox (for saliva control) done while we are there. Unfortunately, the office of the doctor who is supposed to do this does not seem very organized. I have been calling there trying to get this set up for a couple weeks now and have not heard yet if they can do it. Annoying! Today I was told the nurse who is supposed to be doing the call backs for the doctor was A) Very backed up with calls so she was already behind and B) Had a death in her family so she has not been in the office as much as usual. The administrative assistant I spoke with today said she would put the message in as "urgent". We'll see.

A cute picture

Here are Jackson and Dizzy while we were waiting for the school bus last week.

Jackson's appointment at Shriner's

On Monday, Jackson had his long awaited orthopedic appointment at Shriner's Hospital. We wanted to go primarily for them to check out his hips and shoulders. It was a good appointment. He was seen by a team of people: social worker who functions as a care coordinator, nurse, PT, OT, and resident and attending orthopedic surgeons.

He got x-rays of his hips and his spine. He had to sit upright on a bench to get the spine x-ray, which was very difficult for him and for me (as I had to support him there).

As I suspected, there were problems with his hips. He has hip dysplasia, as shown on the x-rays. We knew there were issues with his hips because of his increasing "froggy" positions of his legs. However, I was told by the doctor that it is actually good for his hips to be in that froggy position, that it actually keeps his hip where they are supposed to be. At this time they are not going to do anything for his hips aside from keeping an eye on them. This is very common in children with CP.

A surprise to me though, was that he has scoliosis. They said it was a curve of 20%, his x-ray looked quite curvy to me. This is also a very common condition in children with CP. I guess it should not have been that much of a surprise because he always looks to the left and has different muscle tone on the left and right sides of his body. This is again something they are going to watch, but not treat at this time.

The recommendation is for him to get x-rays annually until the age of 9 or 10, and then every 6 months. He goes back in 6 months for another appointment.

The very cool thing is that Shriner's is only about a 10 minute drive from our house. If you know Chicago, you know that you really can't get anywhere in 10 minutes. They also provide totally free care.