Tuesday, September 23, 2008

Update on DH

For everyone checking the blog to see updates about DH, here's the scoop:
DH continues to improve. Tonight he goes back to OT and tomorrow he has PT. He is supposed to do both twice a week ($15 a pop - woohoo!) and is supposed to do all his exercises at home as well. His goal is to ease back into work next week, teaching one or two blocks (each block is one and a half hours) a day. Hopefully he'll be able to begin teaching again withOUT relapsing.

I have one hour of non-kid time before I have to go back to teach Hebrew School, so I'm scooping up all my papers and the laptop and heading to Starbucks.

Saturday, September 20, 2008


I worked hard on Wednesday trying to find a doctor at Jefferson (big university hospital in Philly that has a great reputation for neurology). I put the word out that we needed anyone who knew anyone who might be able to help, and the outpouring of support and offers of help was amazing. Ultimately I got his hospital doctor (HMS doctor) to contact a particular doctor at Jeff and the transfer took place on Thursday night. They work through the night there, and doctors were in to see him that night and around six Friday morning. They took him for a few tests that night and even drew some blood for another test at one in the morning.

Ultimately they agreed with what the doctors at Bryn Mawr said: since nothing at all is showing up on any of the tests, they are calling it Functional Neurological Disorder, which basically means that it is medically unexplained. All tests continue to be clean and physically he has improved so much that had we not been transferred from another acute facility, the doctors probably would have looked at us like we were crazy.

Early yesterday evening they sent him home. We won't mention how I brought his clothes that he wore to the hospital home when we were cleaning out his first hospital room, so I had to go to the gift shop and buy him a shirt so he wouldn't look like an escaped mental patient, though he did still have to were their pajama pants and special socks home. We also won't mention how the sleep deprivation caught up with me so much on the ride home that I had to keep begging DH to talk with me so I could stay awake. Or how I fell asleep around 6 o'clock and pretty much slept through until around 5:30 this morning when my sister called to tell me that J's coughing has been pretty bad and she's not sure what more to do. I drove out, picked her up, brought her home, did a neb treatment for her, then let her sleep in bed with Mommy and Daddy. At least she slept in with us!

I took her to the doctor this morning who basically, after listening to how the last seven days had gone, prescribed time together as a whole family.

Time together as a family, hmmm? I know my new found medical degree is only from Google, but I agree with his prescription.

Sorry for the cliched quote, but . . . "there's no place like home."

Monday, September 15, 2008

Always Look on the Bright Side of Life

This is my 500th post. I had planned to do something special for this milestone. But the old quote always comes back to haunt me: "Man plans, God laughs."

Those of you who know me IRL know that I try to be very positive. I generally keep a smile on my face to go along with the attitude of fake it until you make it, and usually it works - I smile and trick my body and mind into thinking that everything is okay, at least for the most part. So I'm going to try to focus on staying positive with everything happening with DH.

The good news:
  • The radiologist WAS able to perform a spinal tap today.
  • The spinal fluid was clear, so at least we know there is no major infection or whatever it would be that would make it cloudy and therefore bad.
  • OT, PT, and Speech were all in today to do evaluations. Even though he is much worse than he was last time this all happened in July, they will all try to start him doing at least some rehab tomorrow.
  • The neurologist thought of another test for DH (a CT angiogram or something like that) which they performed this afternoon.

And that's all the news I have.

Sunday, September 14, 2008

Because Things Weren't Interesting Enough

I'm finally online here at the hospital. Our fabulous friends B and N came to visit and B was able to figure out how to make it work. Thank you, B!!! And thanks N for the magazines and chocolates - exactly what I need.

The MRI of DH's brain was once again clean. Good.

DH began losing strength on his RIGHT side, which is a brand new symptom. Bad.

The neurologist who had already seen him this morning and was planning to do a spinal tap tomorrow was still here, so he rushed back to DH's room to do the tap. Good.

DH's vitals went totally haywire the two times the neurologist tried it, which caused him to pass out during the first attempt and for his heart rate to drop significantly during the second attempt. Bad.

The dr. will try to do another spinal tap tomorrow or Tuesday with Radiology, which (in theory) should make it easier. PT, OT, and Speech will be in tomorrow to do an eval and start therapy. And that's the update. We're trying to focus on one day at a time because the "What Ifs . . ." are too hard to deal with right now.

Saturday, September 13, 2008

I Spoke Too Soon

While I was working on my plans at Burlap and Bean, DH walked in to pick me up. He had been hanging out with me there all morning, but had eventually gotten bored and decided to go to the library for an hour or two. The way DH's knee buckled with every step he took warned me that something was way wrong.

I tried driving him to the ER myself, but couldn't go fast enough, plus he was scaring the cr*p out of me with how bad he looked. When I gave him a drink of water it wouldn't even stay in his mouth. I stopped at home to pick up the medical records of this bizarre journey (that I just got a chance to organize yesterday) and made the decision to call 911. They sent an ambulance and we were on our way.

And now we are back in the mystery world of unknown diagnosis. They did a CAT scan of his brain, which revealed that he did not have a major stroke. He was admitted (of course) and will be seen again by the neurologist in the morning. They'll be doing a whole bunch of other tests tomorrow. Hopefully we'll be able to figure out what is causing all this now.

This journey has been so incredibly frustrating and scary I don't even know what to do. I wish we could find an answer. I wish he hadn't lost ALL the progress he had made in PT and OT. I wish he wasn't WORSE now than he was the last time. I wish it was still summer so we didn't have to figure out how to do all this AND deal with my school and the kids' school.

I wish . . .

You Asked For It

Oh, Blog, how I've abandoned you. I've ignored you, I've cheated on you (with Facebook), and I'm so sorry. I know I've said it before (and I'll probably say it again) but things have been crazy. Really, really crazy. As crazy as they were this summer but with all of us at home. I'm going to try to make up for it with a long post filling you in on what has been going on, complete with links and everything.

DH went back to school the last week of August. He had no students until Thursday, and had nothing to do each morning but plan and prep for school. Each afternoon he had meeting to sit through. I know, really taxing, right? But since he was only back to about 85% normalcy (if he ever actually was normal, but that's a WHOLE other post), he came home each day completely exhausted, actually barely able to make it through the entire school day until he could crawl into bed or onto the couch and sleep.

The following week school started for real the day after Labor Day. He had students for the whole day and taught. And because he is the incredible teacher that he is, he couldn't do it halfway. He had to walk among the desks, stay on his feet as he moved around the room to help keep the kids' interest (hey, they're seniors, what do you expect?) and maintain discipline. He taught two full days and had a relapse on Thursday. His mouth started drooping on the left side, he began limping because he his left leg lost so much strength, he started having trouble writing (he's left handed). And, because he is who he is, he continued teaching all day, only going to his doctor after school and only because he already had an appointment scheduled.

DH has been out of work since that day. The doctor had hoped with rest he would begin to improve, but unfortunately he has gotten a little worse each day. His speech is slurred because the left side of his mouth is pulling downward. The progress he had made since his hospital stay has diminished significantly. AND NO ONE KNOWS WHY!
His general practioner (forever more to be known as GP) took multiple gallons of blood (give or take) and ran every viral test known to man (or at least, that he could find in his big doctor book). The results told us nothing, but did show that, like 99% of the population, he had the antibody for Epstein-Barr, which just indicates that he had the virus once before.

Thursday morning he had yet another MRI of the brain. It was clear. That afternoon we saw an infectious disease specialist. He was very thorough and after taking a complete history and examining him, he acknowledged that he has major weakness over his whole left side but does not feel it is related to some kind of infectious disease.

Friday he saw his neurologist and they scheduled a spinal tap (why not - they've done everything else!). That afternoon we saw his GP again who is referring him to get a second opinion from another neurologist and wrote a note for DH to be out of school for at least two more weeks (and then we'll go from there).

While that has been going on, the boys started first grade. They are in different classrooms for the very first time, which I think will be fabulous for both of them. A has a new assistant and seems to be doing okay. Pull-out begins next week, and he will see his Asperger's Support teacher three times a week, a counselor who will work on social skills once a week, speech twice a week, and PT and OT both once a week. B will also begin getting pulled out for OT (FINALLY) and speech. I am so concerned with both his attention/focusing skills and his fine motor skills, but I've told his teacher my concerns already and will e-mail his OT this weekend so she's up to speed with what I've been seeing. We may need to revisit his IEP to create some more specially-designed instruction for his classroom work. Yesterday his teacher sent home a paper that he had written his name on and nothing else. She wrote on the top "Independent Work" and "25 minutes" and "Please finish and return." When I questioned B about it, in between all kinds of excuses, I got out that he had sat at his desk for the 25 minutes and had not even started the paper. WTF?!! It was a handwriting/ABC paper, so I rewrote the worksheet onto a special paper that his OT had given us to make it a little easier for him, but even with that he needed me to sit right next to him to refocus him after almost every other letter. So I'm concerned.
And while that has been going on, school started for me. I'm now teaching almost thirty hours a week. I love it. Preschool began on Monday, though we were in the week before for staff meetings and "Meet the Teacher" days. I'm teaching five mornings plus staying for lunch
(8:30-1:00). Hebrew School started on Monday too. I am teaching all the "Alef" kids, the ones that are just beginning. I worked last year and this summer on rewriting the curriculum, applying everything I know about how kids learn to read to teaching Hebrew. And I actually got paid for it! Good thing I didn't tell them that I am so excited about making all the changes I would have done it for free. I teach two different Alef classes, one Monday night, one Tuesday afternoon. And tomorrow Religious School begins. I was able to take the year-long plans I had used last year (which I had really liked and had spent a lot of time working on last summer) and revise them for this year, but still have more prep to do before the first day. Normally, while I'm on top of each class, I would have so much more plans completed for at least the full month. I had hoped to create monthly newsletters to go home for both Hebrew and Religious School over the summer with what I had planned, revising them a little if I needed to. That's not done. Oh well, there's still time. But just getting my classroom ready and prepping everything that I needed so far has taken so much more time than I thought it would, especially since I had to juggle DH, the kids, and the house at the same time.
Which brings me to the house. While everything else has been going on, I've been trying to work out a new budget (which has been messed up due to all of DH's medical co-pays), stay on top of all three kids' school papers/notices, do the laundry enough so the kids have clean clothes to wear to school, buy enough groceries so I can pack their lunches and have something on hand to make for dinner, keep the floor picked up enough so no one trips, etc.
It got tough enough that I set up a "community" at this incredible website that allows me to type in what kinds of help we need and when and for people we know to join up and sign up for what they will do. We've got dinners coming in for the next week, which is such a relief. My incredible cousin sent out an e-mail to all her friends and family inviting them to a "meal making party" to create dinners for us to freeze and have on hand AND is setting up her paypal account to collect enough money to buy groceries for us for two weeks (at least, that's the goal). Even if it doesn't work, what an incredibly thoughtful plan! And she lives in New Jersey! We've had people join the community that we don't even know really well, friends of friends or connections through various groups we are involved with, all signing up to show support and offer help. And we've had friends that don't live too close or have too much going on in their own lives contact us to let us know they're thinking of us or praying for us. Thank goodnes DH's GP has completely okayed DH helping out around the house (especially since he has been since he's been home despite me nagging him constantly to rest). My sister volunteered to take the kids overnight last night and keep them today until dinnertime, which is allowing us to hang out at a great coffee place while I catch you up and work on plans for school. Plus we got to watch our friends film a music video here for her first CD. The support from everyone has been overwhelming, which, considering up until I started asking for help all I've been feeling is overwhelmed but in a totally different kind of way, is a huge relief.
So that's it. You're now officially caught up. Now quite bugging me so I can get some work done! Just kidding, I've really missed writing here. It's very theraputic for me to get it all out, especially since a) I'm working really hard on pushing through any and all emotions I have about the whole DH medical situation since I have too much to do and b) everyone (okay my mom and someone at work) has been reminding me how important it is to take some time for myself. This was it. I took time for myself to update my blog.
I hope you're happy.