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.

If you haven't seen it

check out the new video on Jackson's site...I am so proud of him!

Also, keep your fingers crossed for us. We are on the road tomorrow to Milwaukee to see the GI. We will probably be starting the oral baclofen. Who knows, maybe this is the thing that will help.

Continuing HBOT and update on gait trainer

Jackson and I did our 9th dive today. Have I noticed a difference yet? Maybe. It is hard to say for sure, but I think I have noticed some little things. Mostly I have noticed his hands opening more and I believe he is having an easier time grasping things. Unfortunately I have not seen any changes GI-wise.

I am having troubles with my ears from the changing pressure during the dives. My right ear is totally blocked right now. Last week, it was my left ear. Hopefully Jackson's ears are less sensitive than mine.

Also he was finally able to get a good trial of the gait trainer during PT. It seemed like it was really pretty good for positioning. I am not sure he liked being in it, but he did have 3 people fussing over him. I think once he figures out how to move it he will like it better. Here is a picture of him in it.

Started HBOT this week

We made our 3rd dive today. It is going well. Jackson's ears seemed to be bothering him, so today they gave him some earplanes ear plugs that seemed to help with the pressure. I go in with him because of the risk of vomiting. He did vomit as he was coming out of the chamber on dive 2, I think because his ears were bothering him. We are doing a series of 40 dives.

In other news, Lee sent Dizzy to boot camp!!! Yes, Dizzy was driving us crazy so we decided to get a professional to work with him. He has been there for about a week and a half, and the changes are amazing. One of the biggest problems was how Dizzy would act with Jackson. He would sometimes lay on Jackson's legs, which is wonderful...but more often, he would get in Jackson's face and start licking him on the face which would cause Jackson to barf.

Today I took Jackson to visit him at boot camp, and he very calmly sat on Jackson's lap in his wheelchair. Jackson got to pet him, and (after he realized that Dizzy was not going to get into his face) really enjoyed being close to his doggie. We are going to do a home visit next week with the trainer so Dizzy knows all the good stuff he has been learning at camp also applies when he gets into the house.

Also, his assistive tech eval went very well, sorry for not updating sooner. They recommended he get the Mighty Mo communicator by Dynavox and a head switch. He really did great with the head switch, it seems like it is much easier for him to operate than a hand switch.

We've been busy

March has been kind of a crazy month for us. Jackson has had a lot of appointments, and still has more this coming week. We have all been sick and then all got sick again. Here are some of the highlights...

Jackson had a neurologist appointment, that was basically a waste of time. He sees Jackson apparently only for his seizures and tries his best to ignore all other neurologically caused problems that Jackson has...such as his pain and vomiting, which of course we all consider to be number one on the laundry list. After that, I called the GI in Wisconsin to see if he could begin to implement the plan we spoke about on our conference call last month. However, he has changed his mind and now wants to try baclofen instead of one of the other 2 meds we spoke about. The worry with this medication is that it relaxes the muscles and Jackson is already very hypotonic. He also mentioned if the baclofen doesn't work, he wants to try phenobarbitol. I do not want to try this for fear it will be too sedating, and it is something than can be addictive. I was given some good advice from a couple of friends and I am going to get Jackson on a wait list to see the pain team at CHW. Maybe they can do something.

His AFOs still are not right. We go back to the orthotist on Monday and hopefully they can work it out finally. Also, on Monday we are finally getting to try the Mulholland Walkabout gait trainer. I am hoping that it will work out and we can go ahead and order one for use at home. And he is having his assistive tech eval at Easter Seals on Tuesday this week. So we will be one step closer to having a communication device for him.

Jackson is sick again

Lee and I were both under the weather with a pretty yucky virus last week. This week Jackson got it. He has been sick since last Sunday. He has been very lethargic and not very willing to smile. If it's anything like what I had, his little throat is killing him. And of course, any time he gets sick the vomiting gets much much worse.

He slept most of the afternoon yesterday...so by 4:30 this morning he was up and ready to go. He seemed better earlier today, but now he is coughing and gagging every 2-3 minutes. Hopefully tomorrow will be better still.


One more update on the HBOT...we were all set to start at the place in Rockford, but the lady I spoke with apparently did not quote me the correct price. So now, it's going to be about $2000 more dollars than they told me. The 1st place I called is about 45 minutes closer and only an extra $200, so we decided to go there. We are going to start on April 2. Pretty exciting!


And for the most exciting news....we got our van delivered! And construction is going to start on Monday for a temporary ramp for the house. Wooohooo!!

Update: HBOT and more

I have been doing a lot of research and I have found a HBOT place in Rockford, IL. It is more money than the place in Madison would be, but the drive is going to be a lot better. (Just to clarify, most major hospitals have HBO chambers but HBOT for brain injury is considered to be off-label so they will not treat for that and many other conditions.)

We are going to be cashing out my 403b retirement annuity to be able to afford this. It will also allow us to put a decent down payment on a used ramp van and to purchase a portable ramp to get Jackson into the house. The settlement seems still so far off in the distance...our lawyer says that September will probably be the earliest we will see money. Jackson is really getting too heavy (nearly 50 lbs) to carry all over. It's not fair to him or to me, so it's something we just have to do now.

The 2nd increase in lyrica has not seemed to make any difference so far. Here is an interesting article from the Journal of the American Academy of Pediatrics about unexplained chronic pain in kids with severe neuro-impairment...if you are in the mood for a little light reading.

Lyrica update and HBOT progress

I believe the increase in Jackson's lyrica has been helping him a bit in the mornings. He is not quite as gaggy and definitely vomits less. I called today to see if we could raise it a little bit more. We got permission to add another 25mg in the AM to see if that can help him get through the day a little easier. We have a neuro appointment mid-March.

Also, I have been wanting to do HBOT with Jackson for quite a while now. Today I called a local place to get some specific info on pricing and to see what the likelihood that insurance would cover it. They said that BCBS was the worst company by far for reimbursing for HBOT. Unfortunately, though I knew it would be expensive, it was about twice as much as I thought it would be and we just can't do it right now.

I called around to some other places though. I found a place in Madison (about 2 hours away) that is about $50 less per dive and they may be able to get us a grant. I really do not want to drive that far that often (usually at least 40 dives must be done to see progress) but I really want to pursue this as soon as we possibly can.

The saga of the school bus

Tuesday we had the beginning of a fairly big snowstorm. School was still on. We waited for the bus, and waited and waited. We stand in our living room at the front window, no way a bus is going to go by without us seeing.

Kept calling the bus company, were told they are still coming be patient. Meanwhile, we saw a bus that looked like Jackson's bus drive right by without stopping. I figured since our regular driver has been out, the sub must have just missed our house. He will either back up or go around the block...but no.

At 9:10 (school starts at 9) we call the school. The lady I talked to said she isn't sure what happened. She put me on hold to call the aid to see what happened. The aid told her that they had waited outside our house for 5 minutes and then left when no one came out.

Well, there is just no way that is true! We live on a narrow one-way street. It was not plowed yet that morning so no way cars could get by a bus stopped for 5 minutes. Chicago drivers are not known for their patience...they would be honking like crazy. Plus the fact that we were right there watching the whole time.

As you know, Jackson is nonverbal, can barely move, wheelchair-bound, frequently vomits especially in an upright position. Now I am very upset that I have to hand my very disabled child over to this person who I know to have told a lie. Not that I think she would intentionally harm him, but he does need someone to keep a close eye on him and he has no way to tell me if something bad happened on the bus or not.

Anyway, Jackson missed school that day because by the time I could have driven him there myself there would have been only about an hour left of school before he had to get on the bus to go home. He loves school too.

So Wednesday bus service was cancelled due to snow, but I had already decided that I wasn't going to put him on the bus anyway. So I drove him to school and then went to talk to the principal about what happened. He said that he has known this aid for 15 years and would feel comfortable leaving his kids with her. Yeah, but his kids can walk and talk and tell someone if something happens and don't have chronic health issues and need constant supervision. He said he can't switch the buses around. He said he would talk to the aid to get her side of the story the next day (she wasn't in that day) and call me to let me know what she said.

Thursday, I drive him to school again but he takes the bus home because it's a different aid on the way home. I hear from the principal that morning. He says that she says that the bus was out there waiting, maybe not a full 5 minutes but she said they were definitely there. He said he would like it if I could put Jackson on the bus tomorrow and talk with the aid. I don't like that solution very much but OK, I will talk to the aid myself.

Friday when the bus gets here (we see it right away from the living room window...go figure!)we go out to talk to the aid as we put Jackson on the bus. I wrote down my phone number on a piece of paper so she can call me next time the bus is "waiting for 5 minutes" and we don't come out or when the bus is excessively late. But she is totally sullen and has a serious attitude. She just goes on and on about how she has worked there 20 years and would never harm a child, bla bla bla. Ok, lady...I really do not give a s*** about how long you have worked there...are you going to use this phone number the next time you are "waiting" for us or not?(she is always talking on her cell when they pull up so I know she has one) She said she would, but she couldn't call us when the bus was late because she waits for the bus herself (ummm, so when you actually get on the bus maybe you could call us?)and we have a substitute driver so there might be a different driver each day.

The driver who was there said at first that it could have been a different Alltown bus we saw drive by (no, only one Alltown bus goes down our street, the rest are Falcon buses). Then he changed his story and said we should have called the bus company and they can call him and tell him to go back. (We did call the bus company 3 times and were told each time that they were still on their way).

When the bus arrived home on Friday afternoon, the afternoon aid and bus driver were surly toward me too.

I am not satisfied with the way this was handled at all by the school. The principal did nothing to make sure the bus would not leave Jackson behind again. The aid made it all about her, when it should be about getting Jackson to school when he should be at school.

Unfortunately, we feel that it would be best if I drive Jackson to and from school at least for the time being.

Sharing a picture that Jackson colored today

It's a (what else?) monkey! He gets to pick what color he wants to use. Then I help him hold the crayon, and he will move his hand to color. We made an M for monkey and also wrote his name.