Conflicted

I don't know what to make of this trip. I am glad it's over though.

First, the accommodations. No single room, well we were alone, but it's designed as a double. It was dirty, even though they had supposedly just cleaned and mopped. The paint was chipped and the ceiling had previously leaked and had plastic taped to it. And I didn't have a 'nice' lay flat chair, I had a recliner. In Boston you get single rooms, with windows into the hallway and nice chairs and clean rooms.

Second, the food. Lunch was oven crispy chicken, boiled potatoes, steamed carrots, a tossed salad, a fruit cup and coffee. Dinner was meatloaf, mashed potatoes, a rock hard dinner roll and hot tea. He's 4!!!! So they finally gave me a menu for breakfast. I ordered oatmeal, a bagel, fruit cup and choc milk. He got pancakes, cheerios, white milk and OJ. Um hello, what was the point of filling out a menu?? In Boston you just call and order whatever you want and within 30 mins it's there.

Third, the EEG. He hates getting the leads put on and off, but once they are on, he's fine. He screamed the entire time they were put on and the entire time they were taken off. My cousin could hear Austin down the hall. And I hate to physically restrain him. We met with the neuro on Wed am and I wasn't impressed. He didn't know how long we were supposed to be there. He wasn't cognizant of Austin's history. Yet, he had been the neuro to approve the stay! You would assume this meant he read the case history. Thursday morning he came in and said the EEG looked great, great sleep architecture, great daytime activity, all around great. I want to be happy, really I do, but I just have so little faith in the local hospital. He has had probably 6-7 EEGs done here. All the early ones were abnormal, which they said, but they missed the hypsarrythmia. As he got better and was seizure free, they said the recordings were normal, but, follow up EEGs in Boston were always abnormal. I know EEGs can change on an almost daily basis, but coupled with his regressions and attention issues, I really didn't expect his EEG to be completely normal. I don't know what to think. I am ordering copies of the recordings to be sent to Boston and NYC. We meet with the NYC neuro next Friday, so I should be able to get her input then.

Until then, here are a few pictures from our stay.

Lunch...he ate the fruit cup. Watching movies and playing with cars.

Our play dough houses. Good thing I am not going to be an architect like Cindy and Barbara!

Oh yeah, forgot to mention that the Looney Tunes didn't show up. They are re-scheduled for Friday. Cousin Aaron should get to see them though. He's expected to be in until Sunday or Monday. We did get to see a big Newfoundland dog named Yogi on our way out. He was just beginning his round of visits.

EEG and Lots of Snow

Austin's EEG is scheduled to begin tomorrow morning. We need to be at the hospital at 8am. Unfortunately this will coincide with the snowstorm we are expecting. The last report I heard says 24+ inches. Considering we have only had about 7 inches so far this season, we are due...but why does it have to be tomorrow???

Day of Doctors

Friday was a LONG day...all five of us had appointments scattered between 8 and 4. Add onto that, the gastro bug decided to take a second hit at me. I was NOT feeling well at all.

The morning started with a visit to Austin's local neuro. I use the term local loosely because she is actually from NYC and visits our area twice a month. She is considered Austin's secondary neuro...and that was her choice. She felt that because she had a large caseload and because she was located 3 hours away and because the Boston neuro had been in place longer, that she was comfortable with the secondary status....that is, until Friday. Austin had been on schedule for EEG's brain MRI's and ERGs every six months. We go to Boston to have this all done. Well our insurance decided to deny those visits this time around. I talked to the Boston neuro and because Austin was stable and things were going good, then he (and I) were okay with it. I even relented and said I'd do the next 24 hr EEG here at home. But this was BEFORE we started noticing the recent issues. And I think we handled the unexpected well. We managed to get a quick EEG, even if I am not altogether convinved by the results of it.

As soon as I started updated the neuro about all that has transpired since we last saw her, she freaked. She reminded me how critical it is to maintain control and to react at my intuition and to not let the scheduled six month appts slide. She stated she felt she should take over as primary and that if insurance denies out trip to Boston or even our trip to Beth Israel (her hospital) in NYC, then she can get him in down there on Medicaid. I felt chastised. Jeff was upset by her attitude towards me and that I let the ball drop. He was annoyed. And while I appreciate him wanting to 'protect my feelings'...she actually very right. I am normally 100% on top of everything and I never let the insurance company tell me no. But for a short stretch of summer and fall, I just didn't have the fight in me to deal with it. And I did let it go. Of course at that point I thought everything was great and fine...my intuition wasn't reading far enough ahead.

We decided to proceed with the 24 hour EEG scheduled locally and if there is ANY question about the reading she plans to admit Austin to Beth Israel...even if she has to use Medicaid to get him there. The problem is...I do NOT want to go to NYC with Austin by myself. While I have never really been into the city...just the thought of it scares me. It is such a bigger city than Boston.

Also, I discussed all the TS stuff with her based on the geneticists appt the other day. She was incensed that they would not test Connor. She decided then and there that she would add Connor to her caseload and take over the TS issue. This is a big deal. She takes on VERY few patients because she is only here two days a month and I don't think she has EVER taken on a child without seizures. She is an epileptologist. So it was a good and bad start to my day. She gave me lots to do to prepare for our next appt.

Our next stop was to the pediatrician for Ben and Connor's three year old check up. Ben tips the scales at 35 lbs and 37.5" and Connor, my lightweight, is 31 lbs and 37". You may think, oh that's only 4 lbs, but there is just a density difference between those two. Ben is SOLID and Connor is like puffy air. But the good news is they are healthy, perfect boys. The ped also agreed to take up the issue of TS testing with the insurance company. She will work with the NYC neuro to get everything into place.

Next up was my appt. It was supposed ot be a well visit, but since the GI bug took another hit at me we spent it ruling out other causes. By late saturday I was feeling better.

The last appointment of the day was Jeff's. After the geneticist appt the other day, we scheduled him to talk to his doctor about TS testing. While the dr admitted he didn't know all the specifics of the disease, he whole-heartedly agreed that Jeff should have a full diagnostic screening. I am waiting to hear today on whether pre-approvals were obtained so we can schedule him.

A long day, but a productive day. I feel all the doctor's are on the same level now...we are all working toward the common goal of getting seizures gone, getting Austin's development back...and making sense of the whole TS issue. FINALLY!

Slacker

I am a major slacker lately when it comes to the blog...and my stress level is high. Work is unbelieveably busy and my next week or so is crammed with appointments and stuff.

Tues- meeting regarding kindergarten
Wed- Connor to genetics
Fri- Austin to neuro, Ben & Connor to three yr check up
Sat- PartyLite Party
Sun- B&C's b-day party and Super Bowl
Tue- Austin's speech eval and school party for Ben
Wed- B&C's 3rd b-day, my mom's b-day, Austin's psych eval, school party for Connor
Fri- Jeff's b-day
Sat- Carli's party
Following Wed- 24 hr in hospital EEG for Austin

With all this going on, I am having a hard time concentrating at work and at home. Once this is past, I hope things will quiet down for a bit. So I am apologizing now if I am absent for long periods of time....bear with me, I will catch you up on the latest.

No Changes

Dr R says no med changes right now. Jeff told me to tell him to come live with us and try to handle Austin's mood swings!

Guess we wait for the 24hr EEG in February.

EEG Results Are In

I got a call from the peds office that the EEG results had been received and it was normal. Part of me is happy and part of me is cynical. I want to believe that it was normal, but I have so little faith in AMC's ability to complete and read an EEG that I am having a hard time accepting it. I am going to have a CD recording of the EEG sent to Boston to be re-read. I am also waiting to hear from Dr R on medication issues. I think an increase is still needed.

So I have some answers today, but not a complete picture.

EEG Done, Now We Wait

Despite the inclement weather yesterday and despite a call from the hospital verifying we were still coming...I was counting on this to be quick and painless as usual. Not sure what I was thinking. When we go to Boston, they lay him on a gurney and put his EEG leads in. He ALWAYS falls asleep. Well, something was different this time because he SCREAMED the entire time the poor tech was trying to put his leads on. He kept saying 'please don't put them in, please stop and please I don't want to'...well at least he was polite. That is one thing I can say for my boys, they are very polite. He even thanked her when she was done taking them out. She wasn't quite sure what to make of him.

They recorded for about an hour, maybe a little more. He slept for about half of it. They told me it would be read that afternoon, but it will take about 5 days for the report. I am hoping sooner rather than later. But at least it's done.

On today's agenda is a dentist appointment for Austin. Time to go make him hate me some more. The poor kid just doesn't get a break. He HATES the dentist!

So Far So Good

Aside from a stomach bug that my boys are sharing, we've see no additional seizure activity from Austin. We are anxious for EEG tomorrow.

EEG Scheduled

Managed to snag an opening for a canceled appt Monday. Austin will be having the EEG at 8:30 that day.

EEG planned

I heard from Dr R's nurse yesterday. He'd like us to get a 2 hour EEG as soon as possible. From there if necessary we will increase meds BEFORE his 24 hour EEG in February. That should be enough time to see if the increase has been effective. If I can get everyone moving quickly we should be able to get the EEG the 24th or 25th. Then I just have to hope AMC can get it read quickly. That's the big part.