The week of annoying and uesless appointments

On Tuesday of this week we saw the neurologist.

You know you are in for a really really long wait when the office ladies bring out a gift card to the coffee shop across the street and tell you to go get yourself a coffee.

When we finally get into a room...1.5 hours after our appointment is to start...the nurse comes in and says "I've never seen you before, have I?" Ummm, yeah you have. "Your last appointment was in December?" No, we have been here since then. And then proceeds to stare at the computer while asking questions and then not really listening to the answers and over simplifying the replies so she won't have to type as much.

Then finally (2 hours after our appointment was supposed to be)the doctor comes in reeking of BO, and wearing the LOUDEST shirt I have ever seen in my life. And then he proceeds to stare at the computer screen while asking questions and typing. And seeing that he is now on baclofen (which J is taking for retching, NOT tone as he is hypotonic) he remarks how loose he is. Yeah.

The best part was as we were checking out the doctor handed me the notes for the appointment (since they are now computerized they can just print them out). I stuck them in my bag and did not look at them until the next day. When I did look at them the first thing I noticed was his diagnosis: "Epilepsy--in remission". Huh? Then I noticed the follow up was recommended for 12 months even though he had told me 5 months. Then I saw "recommendation: follow up with psychologist" WHAT!???

They had given me the completely wrong person's records!! Needless to say I am looking for a new neurologist. Anyone know a good one?


Today we traveled to Milwaukee to see the GI. We saw him in the regular GI clinic and not the motility clinic as we usually do so we did not have our usual nurse.

We talked about the baclofen and how the pain doc was now aggressively raising the dose (even though the GI had rx'ed it originally) so we could see if it was going to work rather that just sitting around doing nothing. It does not seem to be doing much for him if anything, and it has definitely caused him to be tired and lethargic a lot of the time as well as him not being able to use his hands as well as he used to and has less head control. So basically med does not work and causes other problems. But he did not seem to understand what my concerns were.

Again he told me that after baclofen, he had no other options other than surgical and he does not recommend those at this time. He does recommend going to the drooling clinic to see if getting his secretions more under control would help at all.

Then we talked about his bile output which is still a lot and dark green and causes his poops to change consistency and color too. He did not have any thoughts/comments on this, but did feel his belly to see if things were backing up. I need to tell him every time that Jackson has only watery poops.

Commented on how his weight was a little high for someone with severe disabilities. Yes, we are aware of this...but he is only getting 750 calories a day and I am not going to cut it more.

So now he is recommending we go in every 6 months (after having been seen every month!) and he is just going to be managing his tube and acid medicine (which I don't even know why he is taking this as ph probes/scopes/biopsies were normal and it has not been helping the slightest bit anyway!) So nothing has been solved...we still have all the same problems...and he wants to see us only every 6 months.

I am feeling a little bit down after this appointment. It seems like this is yet another doctor pushing Jackson's problems off on other doctors because they don't know what to do.

Luckily, the pain doc seems like a man with a plan. Hopefully he will be willing to keep trying.

What's happening...

Jackson had his first week of summer school, which I guess they are calling "camp" this year. Had a little snafu with the bus on the first day though. When the bus showed up I bet you will never guess who was driving it...yep, the very same aide that caused him to choke. Needless to say we told her to keep on driving. It got worked out quickly though, and Jackson did take the bus home that day.

The nurse has been working out well, she already knew Jackson from school so I feel much better about the whole bus situation.

The big problem this week was there had been no air conditioning on the bus. Because Jackson has an autonomic dysfunction, he is required to have it and it is on his IEP. He can get overheated so fast, kind of scary really. We have been told that the problem should be solved this week. They say they are having a smaller van (with AC) come to pick him up on Monday.

Maybe this will be the end of our bus problems? For a little while anyway?


We have a busy week next week appointment-wise. Neurologist on Tuesday (here) and GI on Friday (Milwaukee).

Pain clinic appointment, update on bus situation, and last day of school pics

Pain Clinic:

I asked Lee to go with me to this appointment. He has really never been to any of J's appointments before, but I thought this was a really important one so he went with us. It was nice also not to have to drive the whole way there and back by myself.

I thought it was a really good appointment. It is so nice to hear "we can try a,b,c,d,e" instead of "we are out of options." We met with the doctor, nurse, and psychologist. We had sent them records that they just got about 10 minutes before we got there so they were not able to go through them before hand. They had watched the video that I had made for the GI (he passed it on to them) and he had a lot of questions about that, and his history, how does he show he has pain, and the meds he had tried in the past, pain triggers, and what can help his pain, what kinds of things he enjoys. He talked a lot about how some of the medicines we had tried in the past were not dosed as aggressively as he would have liked and that we likely would revisit some of those meds and try higher dosages. He called J's list of past meds "wicked".

The doctor and the nurse then took Jackson to examine him while Lee and I spoke with the psychologist. They said they were really impressed with how well he was cared for (no contractures, good social skills, nice tube site, etc). I guess they got a little too close to his mouth and he started bubbling up, but they were good and took our advice and started flapping his arms around (sounds crazy but it helps)and he started to feel better.

So we have a plan now, which is nice. First, we are starting to increase his baclofen at a quicker rate. The GI was really really conservative with it (glad I wasn't the only one who thought so!) so we are going to go up 3 mg every 3 days until we get to 24 mg/day. We are on 6 mg per day now. If it sedates him too much or makes him too floppy we will either camp out at that dose for a while or back off to the previous dose.

At the same time, he is going to talk to Dr. Li (CVS guy) about how to start him on a high dose of zofran without a central line since his only knows how to do it on kids with a line. We have tried zofran before, but never in high doses. He mentioned that our insurance may deny it because it is super expensive but they will fight it.

If the baclofen does not help, then we will try to raise the lyrica. He said he felt there was quite a ways we could go up on that.

If that doesn't help, we can try klonopin. And then we can revisit neurontin on much higher doses. They are not going to try any more tricyclics with him because of the side effects that J has but he mentioned there is a different kind of antidepressant that he can try if all the other stuff does not work.

We will go back in a month. (Hopefully we can start to coordinate this with GI appointments so we can make one trip instead of 2 trips a month to Milwaukee.) I am just thrilled to have someone doing SOMETHING!!!!!


Bus Update:

I asked the principal for Jackson to have a nurse riding on the bus with him. He agreed to put J on a route with a nurse beginning Tuesday, the first day of summer session. We are happy with this solution and Jackson will now be riding the bus both to and from school. Hopefully there will not be any more issues with the bus!

Jackson is fine. Aside from the marks that you can still see on his face (nearly a week later!), you would never know anything happened.


Pics from last day of school:

They always have pony rides and a petting zoo on the last day for the kids. Jackson said he wanted to have a pony ride. I did not think he would like it (too hot, too smelly, too jerky) and he didn't...but I think it's cool he wanted to try!

He looks pretty happy here, but the pony had not started moving yet. His PE teacher and his PT are holding him up.


This is his "I am going to barf soon unless you do something quickly" face.


Here you can see the whole pony.

We had a really nice day Saturday!

Daddy took the day off work just so we could all do something together as a family. We decided that we would go out to lunch and then downtown to see the Cool Globes exhibit. The weather was perfect...hot sun, cool breeze, and the lake was a beautiful aquamarine color that we had not seen before. The globes were really fun too.

If you would like to see pictures of our day you can go here. Notice Jackson's new sun canopy on his wheelchair. I made it with PVC pipes and sunbrella fabric. It works pretty well.

Another bus incident

First, let me start by saying that Jackson is ok.

When he arrived home after school Friday and the aide was getting him onto the lift, I immediately noticed his wheelchair was in a crazy-horrible position. He was very reclined, but in a way I have never seen before, his head was down by his laterals, not even close to being on the headrest. Any random person off the street would be able to see that it was not right, but the aide did not seem to notice that anything was wrong.

I asked her what happened and she said that he had a little mucous but she had cleaned him up and he was fine. Obviously he was not fine. As the lift came down I could see his face was covered with petechiae and he had barf all over his clothes!!! When the f---ing idiot aide messed with his chair (and you would have to try really really hard to do this) his chest harness came up around his neck and was actually CHOKING him!!!!! And she had absolutely no idea this was happening!!!!

I took him to get checked out and the dr thinks he is ok but I wanted to make sure it was all documented by the doctor too.

The principal talked to the aide and she is so clueless it is scary, she thought we were upset because he still has some stuff on his clothes and his bib was wet. He has called here several times, once offering to try to get J his own full time aide...obviously he wants to cover his ass so he doesn't get sued.

Petechiae

Mark on neck from choking

Family Fun Day at School

Last Friday was Family Fun Day at Jackson's school. Daddy took the morning off to attend, we were so happy he could be there! They gave the students blue school shirts so they all matched. Jackson was happy to see his friend Karuna there. She attends the same class but she goes in the afternoon while Jackson goes in the morning.

The day started out with a parade. The teachers had decorated all the wheelchairs the day before...they looked very patriotic and festive! The parade was led by a marching band and ROTC from a nearby HS. All the people who lived near the school came out to watch and wave as we went by.

Then it was time for the relay races! Since Jackson was the first racer, he had to hurry up and get his gear on and get in the go-bot while the cheerleaders were doing their thing. He drove the go-bot all by himself with a switch! (The guy behind him is steering, not pushing.) He did great!

Then it was Karuna's turn, the second racer in the relay. She also did a wonderful job driving her go-bot!

Jackson won a medal for going so fast in the race! He looks so proud!

There was lots of other fun stuff to do. He got a green frog painted on his hand, and he got to hang out for a little while with some fire fighters.

Unfortunately the day was really hot and sunny so we had to go a little bit early...but it was a fun day for everyone!

Happy birthday Jackson!

Yes, Jackson hit the big 0-4 last week! I think this was the first birthday that he started to get what it was all about. He loved it when we would sing Happy Birthday to him and he also enjoyed opening presents. His Granny came into town to celebrate with us. Here are a couple pics for Jackson's adoring fans.

HBOT Pics

I know a lot of people were curious about exactly what Jackson does for this...so here you go! Basically, he lays in a tube and watches videos for a little over an hour. He doesn't seem to mind it at all. This is what it looks like.

Some good news and a cute picture (or 2)

The good news....insurance is actually paying for the HBOT!!! Absolutely amazing! I sure never expected that and I know the lady who deals with the claims at the hyperbarics place didn't either.

And the pictures...

Jackson is definitely tolerating being close to Dizzy for longer periods of time now that he is not such a spaz. He put up with him for about 5 minutes before he started feeling yucky while I took these pictures . He even looked like he might be enjoying it a little bit.

A couple crazy days

On Monday, I got a call from Jackson's school nurse saying that his tube had come out...balloon intact. She can not reinsert it because it is a GJ tube and can only be placed in interventional radiology. So she taped it in to hold the stoma open.

We have a spare G button that we keep on hand for emergencies that I was able to insert until we were able to get a new GJ placed. Luckily, Jackson was already scheduled for a GI appointment yesterday. The GI nurse was able to schedule a tube placement in IR with no problems.

He actually did better than I expected with the G-tube, he gagged a few time, but no vomiting. And I have never placed a G-tube before, so let's give Mom a big round of applause.

The appointment went ok. The plan is to put him back on the baclofen, at the same dose that was not helping anything before. (Not sure what the issue is with raising the dose, it is a miniscule amount for a kid his weight.) He ordered some labs (to make sure he was not getting dehydrated with all the bile he has been putting out) and a small bowel follow through (to rule out an obstruction) for after his tube change since he would be in radiology anyway.

Also, we saw the nutritionist. She feels that Jackson is not getting enough fluid daily, especially with the physiatrist cutting his feeds and with the bile output. So he will be getting about 500 ml more fluid than he had been and also a 1/2 a vitamin ground up in his tube every day. His formula is a complete formula (meaning it contains all necessary vitamins and minerals) but since his calorie needs are so low he is not getting enough to make it complete.

Radiology was all backed up, we got in about an hour after we were scheduled. The tube change went well. We had to push so much contrast for the SBFT that Jackson was really uncomfortable and kept gagging. I am assuming it was normal because they did not tell us otherwise, and things like that always come back normal for Jackson.

The trip home was hell. It was pouring buckets of rain, and got to Chicago just in time for the evening rush. It should have been 90 minutes, but it took us over 3 hours to get home!

Continuing saga of the bile

The bile output has improved somewhat. Some nights he barely puts out any, and some other nights he still puts out quite a lot. The GI doctor called and wanted him to get some bloodwork done to make sure that he is not becoming dehydrated from the increased output. He had just gotten bloodwork the previous week (ordered by his physiatrist, update on that appointment coming up) which I had not heard the results of yet. I had to think if it would be quicker/easier to call and get the results of the other labs or call to get an order for the new labs and get those done. I decided to just get the new ones. Unfortunately, the results of those have not come back yet. We also stopped the baclofen to see if that was causing the bile. I don't think that was what was causing it, because it is still there. We will see him Tuesday, I expect he will want to restart the baclofen.

The psysiatrist appointment was good. She was also concerned about his bile output which is why she ordered the labs, which we still have not heard about. She thinks he is getting too chubby again...at least too chubby for a severely physically disabled person. So she cut his feeds, and now he is only getting 750 calories/day. It seems like such a small amount, but he really does not have problems gaining weight. I also recently read that one of the meds he is on can cause weight gain, so that could be part of it too.

She also wrote an order for him to have a bus and classroom with AC during the hot months since he is so sensitive to the heat and can not regulate his temperature well. She wants us to keep track of his HR and BP at the times when he has his overheating problems. So we got a blood pressure cuff for him. Unfortunately the one they sent us is the manual kind that you need a stethoscope for. He is way too wiggly and the tone in his arms makes it pretty difficult to take his BP that way, plus my stethoscope is not that good. I think we will have to get an automatic one.

Not sure what is going on.

For the past couple weeks Jackson has been putting out large amounts of bile. His poops have also been different. We are not sure why. We have a GI appointment in a week and a half, so hopefully they will have some insight...but I doubt it. The GI nurse has been really getting on my nerves...I have left her a couple messages about it. The first time it took her about a week to get back to me. She told us to go get an x-ray to make sure the tube was still in the right place. So I had to call the pediatrician and get an order for the x-ray and then make the appointment for the x-ray at the other hospital. It turns out that the tube was fine. I called the GI nurse back that same day (Wednesday) and I have not heard back from her yet.

I don't really even know why we are traveling so far when they don't do anything for us. We can stay here and have people do nothing for us and save a lot of money on gas too.

Went to the zoo today!

As we were walking by the carousel, I stopped and asked them if there was any way Jackson could ride. They said sure, that we could be first on next time, they have a ramp and a special place for wheelchairs to sit. So Jackson got to have his first carousel ride! Unfortunately I did not have my camera on me at the time, but I did take a couple pics with my cell...you can't really tell he is on a carousel though.
Then I saw the tram so I asked them as well. The lady selling the tickets said she wasn't sure, so I asked the driver and they said no problem...so he got to ride the tram too!

Jackson fell asleep on the tram ride and then started to overheat, even though I thought the ride was cool and comfy. So we did not stay too long, he is feeling much better now. We are members though, so we can go back whenever we want...probably wait for a cooler day and bring the wheelchair umbrella. I was very impressed with all the accessibility though!

Good dog!

Dizzy is back from boot camp. He still has learning to do, but he is trying very hard to be a good dog (except when he sees a cat walk by). He has really improved so much! Here is Dizzy "staying" by Jackson's legs.

GI appointment

Dr. S said that basically we are coming to the end of the line with medications we can try. And some of the few meds that are left that may work have some undesirable side effects that make me not even want to try them at all. So we have decided to give the baclofen a shot, even though Jackson is severely hypotonic. The other options are phenobarbital, benzos, botox (endoscopically), or surgical options.

The surgical options he mentioned were fundoplication and gastric bypass. Right now I do not think either of these are worth considering, and I was shocked that he brought up the gastric bypass at all. I can not image us ever consenting to that.

So we decided to have the baclofen compounded a the CHW pharmacy because it is very difficult to find a compounding pharmacy here, and I am firing our current pharmacy anyway. Long story short, the pharmacist needed to speak with the doctor before making the medicine and we left without it. It will be sent to us.

It is a ridiculously (pharmacist's word) small amount of baclofen that we are starting him on so chances are small that it will have any effect--positive or negative--until we do a few increases.