Still waiting on labs + update on vaccine settlement

I called today about the labs he had drawn last week. The nurse said she thought the doctor was looking at them and that is why they were not in his file. She said she would call me tomorrow to let me know what the plan is.

And the vaccine case is done and we are just waiting to get the money. I am told it should be by the end of April. We'll see. I am not holding my breath.

Announcement!

Jackson is going to be a big brother! Yes, we are expecting a baby due 9-27-08. Jackson seems to be happy about it when we talk to him about it. And he thinks crying babies are just about the funniest thing in the world so he will have endless amusement.

Got the EEG results

and it turns out he did not have any seizures during the test. But the nurse said that it did show he was "at risk" for having seizures. So we had to go Tuesday morning to our local children's hospital to get labs drawn so they can see if his medication levels are what they should be. We won't have those results for another week.

The good thing is that the lab tech got the blood with only one stick. And that they were giving away books in the hospital lobby as we were leaving so we got a free book for Jackson.

Seizures...

We have been waiting patiently for the results of the EEG. They said it would be 7-10 days before we heard. Yesterday (Friday) was 9 days so I called and left a message for the neurologist's nurse...but of course no one called me back.

I am pretty sure he has been having seizures and not the same kind he was having back in October, which were found to be sub clinical partial seizures. Not only have I been noticing seizures but the school nurse had called last week about them and the speech therapist had also noticed them. They are staring kind of seizures, sort of like the ones he was having a long time ago, but just a little bit different...it seems he is a little more conscious during these instead of just blank when he was having them before. Some will call them absence or petite mal seizures but they are not generalized (at least they haven't been in the past) as absence seizures are...so they are absence-like but not actually absence seizures.

That is why I am a little anxious to get the results. Hopefully Monday.

What a morning!!

We had Jackson's sleep deprived EEG this morning. We had to keep him up an extra 2 hours last night and then wake him up at 3:30 this morning and make sure he did not fall back to sleep. Then we had to drive to Milwaukee (still making sure that he stayed awake) to start his test at 7:45 am.

They hooked him up to all his wires and we brought all his good stuff (monkey, pillow, ipod, white noise)so he could sleep. But it can take him quite a while to get to sleep and I was afraid they were going to run out of time with the test before he fell asleep which would mean that we would have to repeat it another day. He finally (after about 1 hour) fell asleep and they were able to get what they needed from the test...yay!! We will not have the results for 7-10 days though.

I can not believe he did not sleep at all on the way back home!!!

Update

Jackson seems to be doing ok on just tylenol so we are not even going to worry about getting anything stronger. What a tough guy!!

Surgery is done and we are home.

Jackson had his surgery today for the vanished testicle (that is actually the technical term they use BTW). It went well. They were able to locate the testicle, and it was still viable (but smaller than the other) so they put it back where it belonged. He did well but you can tell he is a bit uncomfortable now.

We can not find any pharmacies that have his pain medication though. Of course it is Friday evening so that does not help. I think I will call the surgery resident on call and see if they can call in something a little less uncommon.

Maybe not something everyone will be as excited about

but I am pretty happy about it! Jackson is having solid poops for the first time since he first got sick! Wooohoo!! Since beginning to add real food to his formula, his poops have gone from nothing but water to somewhat more firm, but still not "formed". This week we have been adding even more real food and less formula and we have been getting poops that are actually formed. I am pretty happy about it!! I can't wait to get our (modern-day) Vitamix and then we can really go to town!

Surgery appointment yesterday

Jackson had the appointment with the surgeon at CHW about his testicle. He felt around for the testicle and said that he believes (but not 100% sure) that he felt the veins that feed the testicle. If he did feel that then there is a chance that the testicle could be there (although smaller than normal) but just hiding. Or it could be that the testicle got twisted somehow and died.

We are scheduled for a laparoscopic "peek" inside on the 22nd. Depending on what he sees, he will either go in and grab the testicle and tack it down where it belongs or if it is dead he will remove it. We are hoping it will just be a day thing, but there is a chance he will be admitted overnight.

We also met with the dietitian to get the "recipe" for Jackson's blended formula. When we get a Vitamix we will be all ready to start! Actually we did purchase a very very old Vitamix off ebay, but it is literally from the 60s I think, seriously old. But our old blender died (prunes killed it!) and we needed something to hold us over.

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.