Tuesday, July 29, 2008

Life is Good

I finally have good things to share.

DH is now using a cane instead of the walker. He had his first PT appointment yesterday and did great. They found some residual weakness, but it was amazing watching them test him and comparing it in my mind to how it had been just last week at this time. They gave him some moist heat on his left shoulder and leg and then he was able to do a few exercises that actually involved him lifting his left arm all the way above his head, and extend his left leg straight out, things he has not been able to do in over a week. Wow! Right now he is out on his own for the first time since the 21st. This morning we went to see a free movie together as a family - he drove and did fine, so this afternoon is a test to see how much he can do. His plan is to go to school and to his favorite book store and then come home. I'm keeping my fingers crossed that it's not too much for him, but I told him when we came home that I would not be questioning him all the time about if he was sure he was up to anything, that he would have to listen to his body and judge. I'm just biting my lip and hoping he's doing that.

The kids right now are having a picnic with our next-door-neighbors in a "clubhouse" they've all created between some trees. My sister and I had a "hideout" in the space created between a row of evergreen trees that lined our driveway growing up, so this make me feel all warm inside.

When all this medical stuff got to the acute stage last week and DH was hospitalized indefinitely, I turned all the coordination of the kid-care and meals over to my incredibly organized and amazing sister, after I stared at the computer and my cell phone for about fifteen minutes trying to figure out how to work all this stuff out so I could spend as much time as I could at the hospital. That night she reported back to me all the different things she lined up for us, exclaiming, "You've got some incredible networks of friends!" It's funny, I go through chunks of time where I wish I had more close friends, friends that would call me up and invite me to go out for coffee with them or for a night out. But times like this make me realize that I have friends, I have people that love me or that can only imagine the situation we were in and want to reach out to support us however they can.

My sister worked out a shift system and had people picking up the kids from the hospital after they visited Daddy in the morning (shift one) to take them out in the morning and then dropping them off at someone else's house for the afternoon (shift two) and then someone picking them up from that person's house to take them somewhere for dinner (shift three) and then back to my house so someone else (shift four) could come and help me get them ready for bed (I wanted them to stay here in their own beds each night to give them SOME sense of routine) and stay with them once they were asleep so I could go back to the hospital if needed (I never ended up doing that, but it was great to know I could I wanted). First of all, isn't that incredibly organized? I would have written anal and crossed it out but right now I can't remember how to do that and don't want to take the time to look it up. Second of all, isn't that amazing that she found enough people to volunteer for that?!!

I've had people bring us meals, pick up groceries without me even asking (things like snacks for the kids, bread, peanut butter, jelly, random stuff that families need), pick up stuff at my request (healthy snacks for DH and I to eat in the hospital - that person also picked up two slices of packaged Oreo pie for me!), call, visit, e-mail. My local Mothers and More group stepped up; some members helped with the kids, some tooke care of meals, one member who I hadn't even met brought a meal and groceries - incredible! I even had my cousin (Michelle's SIL) who lives in Jersey call - she's going to be sending us some pizza for tomorrow night's dinner! Our neighbors have mowed the lawn, pulled the weeds, even taken out our trash. And now the kids have moved from their clubhouse in the backyard to another neighbor's house across the street to try out a great big frisbee that one of them got.

And all the people who have prayed for us - I don't talk about faith too much on this blog because it is so deeply personal for everyone, but I am a very spiritual person. It has meant so much to me to hear people tell me that we are in their prayers, or even that they are sending good thoughts our way (the non-religious person's way of praying, in my mind). On Tuesday I was driving back to the hospital after dropping the kids off somewhere and running home to get some stuff. I had seen my neighbors and tried to update them some, but got somewhat emotional and had to stop. I do great in a crisis. I can tuck my feelings away like the best of them (I know, not exactly healthy, but helpful at times like this), but once I start to cry it's really hard to start. I didn't want to bring that back to the hospital with me, so I knew I had to pull it together somehow. I found myself pulling into my synagogue's parking lot almost without thinking about it. I walked in, bypassing the office and all the people I know that work there, and walked into the sanctuary on my own. And I prayed. At first, I didn't really know what to pray for, my mind was such a jumble of concerns and doubts and guilt for not bringing him back to the hospital sooner, so I finally just stopped and listened to my heart. And then it was clear: I thanked God for the medical care that is available to us, and prayed for strength to get through this crisis. And I gave it all up to God. I knew that I had no control over this situation, that things would work out as they are supposed to, so I reminded myself that it is in God's hands. And I left there feeling such peace, something I hadn't felt since all this started on July 10th when we first went to the hospital thinking he was having a heart attack. And now that he's been released, everything bad ruled out, improving every day, I still feel it.

I'm still tired (sleep deprivation + narcolepsy are not a good mix), still trying to get the paperwork and the house back in order, still opening cabinets and finding things in strange places due to all the different people who have been here to help, but it's all okay.

Life is good.

Saturday, July 26, 2008


Yep, I brought him home this morning. He needs to use the walker for a while, and can't be left alone in case he falls (plus I have to "spot" him as he goes up and down the stairs), but he's HOME!!!

Thursday, July 24, 2008

Here's the latest:
Everything has now been ruled out (stroke, MS, any central nervous problems, tumors, lyme disease, any heart defects or infections). The doctors feel this is something viral that will have to run its course and we need to focus on rehab to build his strength back up and retrain his brain to move his left side.

He is actually going to be discharged today, either going to an in-patient rehab facility or home to do intensive PT. We are waiting for the rehab doctor to examine him to determine where he is going.

Yesterday and today he is actually showing small signs of improvement. He is now able to lift his left arm a little higher and when he squeezes with his left hand you can actually feel a little squeeze. Yesterday he was able to walk down the hall to the special shower (it has a bench) they have with assistance, limping all the way. Once we got there he was too exhausted to do much more then sit on the bench and hold the shower head while scrubbed him down. He then needed a wheelchair to get back to his room. As the day went on he went on three more "walks" to try to build up his strength - each walk was no more than two minutes, but it's a start. I'm a little concerned about them sending him home since we just have the one bathroom UPSTAIRS, but I'm going to get dressed so I can head back to the hospital with the kids so they can see Daddy but also so I can be there when the rehab doctor is there so I can voice my concerns.

Thank you all for the amazing support you have shown me through comments and offers of help. It has helped so much to know that so much is taken care of.

Tuesday, July 22, 2008

Yes, His Smile is Still Drooping

Two neurological exams and two MRIs of the brain later, a stroke has been ruled out. An EMG of his left side has ruled out nerve damage. MS has been ruled out, along with a bunch of other letters I don't remember right now. Tomorrow they will do a PCR test for Lyme disease even though the two blood tests have come back negative just to be sure. They will also do a TEE test on his heart, for which he will have to be knocked out. The doctor has also talked about bringing in an infectious disease specialist to see if there is something viral going on. They have also made it clear that when they do eventually discharge him from the hospital, he will be sent to an in-patient rehab so he can work on using his left side again.

Watching the different doctors and therapists evaluate his strength has been scary. The loss of strength is so significant, and it is still declining. Yesterday, before we made the decision to go back to the ER, he took the kids to his school for a little and then to IKEA for a little. He was limping some, but felt okay to do all this (though when I called him while he was finishing up at IKEA he told me he was exausted). Today after the PT and OT evaluated his strength they had him walk a little bit. Not only is the limp much more prominent now, he became quite fatigued by the time he got to the hallway!

So that's all I have to report for now. If you're local and are able to help out with childcare/meals, my sister is coordinating all of that. Leave a comment and she'll get back to you. If you know my DH in real life, please consider visiting him at Bryn Mawr Hospital. There is a lot of down time between tests and therapies.

I sincerely hope I have something to report by tomorrow night, some kind of answer, but for now I'm trying to just focus on one day at a time.

Monday, July 21, 2008

From Bad to Worse

DH was readmitted to the hospital again tonight. The weakness on his left side has progressed so that the left side of his mouth now droops down and he started limping somewhat. They plan to keep him indefinitely until they get to the bottom of the weakness. I am kicking myself for not bringing him to the ER on Saturday when I first saw his lopsided smile, but they had ruled out a stroke on the 12th when he was last in the hospital with an MRI of his brain, so I didn't realize that was even still a possiblity. Apparently there is such a thing as a slow stroke (or something like that) which would present like this. There are a ton of other things they're also considering, so in addition to the new MRI they did of his brain tonight (with contrast this time) they will be running a whole bunch of scary sounding tests tomorrow and the next day.

I'm going to try to go to bed now. I'm trying to take this one day at a time. The kids are at my sister's right now, but I don't know how long that can last, so I'm looking for people to take them for chunks of time tomorrow and the next few days, so feel free to comment if you can help at all.

Sunday, July 20, 2008


I guess I just got what I wanted the only way I can.
DH took the kids to his parents' house at 10:30 this morning. I was being given the whole day (had to join them at 4:30) and had a huge to do list for both the house and my show to get accomplished.
And what did I do?


Yep, as soon as they left I took what was supposed to be a half hour nap. Despite the alarm clock (which I got up to hit snooze a few times before I turned it off) I slept the entire day. Just woke up. It's 3:45. Yeah, I have thirty minutes to shower, dress, and attempt to do something around the house? Maybe?

So the microwave just beeped telling me that my chai tea latte is ready. I figure at this point I need the caffiene boost (I took my narcolepsy meds this morning but I guess since I was ASLEEP I can't really tell if it was working or not). I'm going to drink my tea, shower and get dressed, go to my IL's to have dinner with them, get the kids ready for bed, and then drive them home.

DH will be driving to our community theater for what should be his first rehearsal for the dream play that he has wanted to direct for years. Instead he has made the gut-wrenching decision to step down as director due to all this health crap (yeah, his smile is a little lopside now and he has started limping some - his whole left side is losing strength - naaaaahhhh, we're not concerned at all!). He will tell the cast that tonight, announce the new director, and then he's done. So hard. But I'm so proud of him for making the decision that will ultimately be best for him.

I'm hoping that just maybe the kids will go to bed right away and DH will stick around the theater and I will move with superhuman speed around the house and at least clean up all the stuff on the floor, tables, counters, flat surfaces . . . .

Friday, July 18, 2008

Stop the World, I Want to Get Off!

I know it's such a cliche, but that's the way I'm feeling right now. I just want to get off for a little bit, maybe a couple days, get caught up in everything, and then I'd be ready to step back on and start being part of the rest of the world again.

  • We found a large, dark bruise on the right side of DH's stomach - don't know where it came from at all. He's at the doctor right now to see if they can figure out where it came from and if it's significant. Of course, he had remembered the wrong appointment time so when they called at 1:30 today saying he missed his 1:00 appointment (he thought it was for 3) and now will not be able to be seen, he was fairly pissed that they would not work with him at all to squeeze him in (he had called yesterday hoping to be seen but today was the earliest they could see him, even knowing all that's been going on recently). We decided he needs a new primary and after calling around found someone who COULD see him today. That's where he is now.
  • DH's pain had come back Monday night (he had been released Saturday morning) so I made him go back to the hospital despite his objections. Yeah, I'm just mean like that. The ER doctor decided (and the MRI of his neck kind of confirmed) that it was a bulging disk in his neck pinching a nerve that is causing the pain that is shooting down his left arm causing his hand to be somewhat numb and definitely not work very well. Of course, the bulging disk is on the right side of his neck and all the pain he is feeling is on the left side, but . . . He started DH on steroids and high doses of Alleve. The ER doc felt that the pinched nerve could also explain the chest pain as well (but did another EKG just to make sure it wasn't cardiac related).
  • We went to see a neurologist this morning about the neck. We even took the kids with us so I could go too and they were INCREDIBLY well behaved, even when the Gameboy's batteries died. The neurologist was the same one who had seen DH in the hospital; he had done an MRI of his brain just to make sure the pain was not being caused by something there. He never suggested ANY other possible cause. Anyway. He looked at DH's MRI report and also thought it was strange that the pain he is experiencing is all on the left side, but prescribed 8 weeks of PT to take care of it. He also told DH that he should definitely NOT be taking the steroid and the Alleve at the same time since they're both anti-inflamatories and they will hurt his stomach (which would explain the stomach pain DH has been feeling recently). The main thing he did NOT do is examine DH. Yeah, guess that would have taken too long or something?!!
  • DH just called from this new doctor, who actually DID a thorough examine and discovered that the entire left side of DH's body is significantly weaker than his right (yes, that includes his foot, leg, stomach, arm, and hand). The new doc is right now calling the neurologist from this morning to try to consult with him and impress upon him the significance of these new findings.
  • So, we have all that going on, which is scary and a lot to deal with. But life goes on no matter what, so there are still bills to be paid and laundry to wash (just enough so we have clean underwear and towels for the kids to bring outside and dry off) and meals to make and kids to occupy and strange smells to find the source of (well, I haven't really been keeping up with too much around the house so . . .) and then there's the whole show that I'm directing (for the children's theater camp I'm working at as head teacher) that needs to be performed at the end of the this month and the sleep I'm lacking and the weight I'm NOT losing and the paperwork I'm still trying to sort through. Not to mention the new Hebrew curriculum I was asked to write (something I'm so passionate about and will get paid for and will be the only teacher teaching it), the revisions and planning I still want to do for my preschool class, the work I want to do with my business to attract more customers. Plus the various activities/therapies I want to do with the kids to help them with various skills. Plus the fact that all this cardiac stuff has convinced DH he needs to eat better, which would be great for me too, but I haven't been able to organize myself enough to really get the food to prepare the meals for us to help with this new resolution.

I know that I have SO much going on right now, especially with this major uncertainty with DH's health, but I'm just so friggin' overwhelmed I feel like my head is spinning. And so I'm just asking, if it's possible, let's just stop the world for just a couple days, maybe just let me say FREEZE and stop everyone and everything right where they are, let me get caught up with the house and the paperwork and my show and the food and cleaning out the fridge (maybe that's where that funky smell is coming from), maybe even get caught up on my sleep too, and then we can start everything up again. That's all I need. Not too much to ask, right.

So . . . .


Sunday, July 13, 2008

The Last Few Days

That was really scary.

Thursday night, I finally got the kids in bed and staying there, poured myself a bowl of cereal, and the phone rang. DH, sounding out of breath, telling me that's he's driving home and is having a lot of chest pain and it's shooting down his left arm and making is fingers tingly. And HE'S DRIVING! All I could picture was him crashing into a telephone pole and me trying to tell the ambulance where they can find him. I, as calmly as I can, find out where he is (he happened to be pretty close to his parents'), and tell him to drive there so they can drive him to the ER. I would be there as soon as I could.

I must admit, I pride myself in keeping calm in an emergency. But this was a little much for me. I did feel panic creeping in as I called everyone that lived near by to come sit with the kids so I could go. No one was home. I went next door and, trying to keep calm, relayed what I knew to my neighbors and they told me to go, they would sit with the kids. I went back in the house and felt like I was going around in circles. I got DH a book and one for me (we've done ER trips for the kids MANY times and know how long they normally last) and then found myself straightening up the house. Like it mattered. But I did.

Then I left the door open (one neighbor was coming over right then) and began driving to the hospital. I called him and started talking to him on his cell (he still sounded really bad) and soon realized that I was right behind his mom's car following them. We parked at the ER and he was able to get out of the car himself, though he was somewhat hunched over and grabbing his chest. We got to the counter, which DH needed to lean on to hold himself up, and I heard myself say in a low, tight voice I did not recognize to the woman whose back was towards us, "He's having chest pain." She took one glance at him and whipped a wheelchair around for him. She wheeled him to the room right behind her and had me stay to register him. Since he's in the computer (yeah, we're ALL in the computer there) it didn't take long, maybe two minutes, but by the time I got back to him the EKG was almost finished. It was normal, but his pain was still extreme.

The nurse left and others soon filed in - blood tests, more registration info (that's right, when it's bad enough, they come to you), a PA to take more info. All this time, the sharp stabbing pain directly above his heart was coming every minute or so, the amount of pain deemed a "10" on the pain scale by DH. He was losing feeling in his left hand so much that he was no longer able to squeeze as strongly as he could with his right. If he moved the pain escalated. Or laughed. Or turned his head. Or took a somewhat deep breath. It got to the point that I was reminding him how to find a focal point and focus on his breathing, the tricks I learned in preparing for natural childbirth.

They moved him to another room down the hall and started treating him as if he was having a heart attack, giving him four baby aspirins and a nitroglycerin tablet under his tongue. Apparently just about anyone with severe chest pain is treated this way, just in case. They wheeled him off for some test, and by the time he came back the pain was better, down to an "8". Another tablet, more relief. After the third tablet under his tongue, the pain was down to a "1". That sure seemed significant to me! The nurse said that he would definitely be admitted. The doctor came in and told him that if he were a betting man, he would say this is NOT cardiac related (all the tests were coming back clean, including the blood test looking for excess cardiac enzymes), but he was staying just in case. Apparently the fact that this was Thursday night and that we would still have a day in the hospital for them to run tests was good. They gave him a nitro patch (that would give him a steady amount of nitroglycerin) and admitted him. And I drove home.

I was so tempted to pick up one of the kids and bring them to bed with me so I could have a warm body next to me, but didn't want to wake any of them, so I didn't. It worked out since J came in around 4 in the morning and was then amazed because I didn't make her go back to bed, instead told her to go get her "Mine" and come back in bed with me. She did, no questions asked. DH called around 6:15 or so, to tell me that the pain came back during the night, though not as bad as it had been, and that a doctor and a PA were in already to tell him they would be running all kinds of tests today and would not discharge him until they got to the bottom of it. By 7 all three of them were in bed with me (I guess they woke, saw J not there, and figured out where she must be) though I don't really remember the boys joining us, and I took a breath and started to tell them what as going on.

I explained that last night Daddy's heart starting hurting him so we took him to the hospital and the doctors are helping him feel better. B, who has a hero worship thing going on with his Daddy, teared up immediately asking if the doctors gave him a shot that made him go to sleep. I had to think for a moment before I realized he was asking if the doctors gave him anastesia so they could operate on him. For some reason the idea of being put to sleep like that (no, we don't have a pet and he has never heard of an animal being "put to sleep") terrifies him. I assured him that Daddy is being given medicine so his heart doesn't hurt right now but he is wide awake. I didn't want to tell him that Daddy won't be having an operation because at that point I really didn't know. The other two asked questions, but didn't seem as upset. I explained to them what our day would be like today since it was changing (and that's really hard for A). We had planned to see Peter Pan that day as a family (a local children's theater camp performs different kids' shows each week) so of course we had to do that (couldn't change things THAT much - it had been on the kids' calendar all week). My sister agreed to take the kids after that and keep them overnight, so I told them the order of the day: we would eat breakfast, go visit Daddy, see Peter Pan, and then go to Aunt J's for lunch and to have a sleepover, and I kept repeating it as the day progressed so all of them (A) would remember it.

DH called me twice while I was getting the kids ready to leave the house. Once to tell me that a doctor had just been there and told him that he would be going home a little later that morning (?!!) despite that fact that he still had significant pain and they hadn't figured out what was causing it and then again to tell me they just gave him something for the pain and that he wasn't sure when he would be going home and he didn't really care anymore. Yeah, they gave him some good stuff, but at least then I knew he wasn't really going home any time soon - they wouldn't have given him something so strong if he was going home.

I finally go them out the door and to the hospital. Major miscalculation - I forgot to prep them for how DH would look. He was hooked up to all kinds of monitors, had an Oxygen tube in his nose, and was receiving saline through an IV. B kept looking everywhere but DH, asking him questions all the time (especially about the needle they used to give him the IV and whether or not they gave him something to make him go to sleep - apparently Mommy's word was not enough). A was excited about all the electronics he saw around DH and had to find out what each number and line meant. J was the first to agree to go up and give DH a hug, which made something start beeping, which caused A so much panic that he couldn't even look at DH. I encouraged him to give Daddy a hug (if he wanted) and he approached Daddy so tentatively, hands flapping, that I reasurred him that he didn't have to hug him if he didn't want to, to which he replied, "Okay!" and backed away completely. My MIL was there and volunteered to take the kids for a walk so DH and I could talk. She found some monitors in the hallway that were not hooked up to anything and let the kids touch them some so they could see that they were not so scary. I went out in the hallway and tracked down DH's nurse to find out if his perception that he would be released soon was accurate (of course it wasn't) and gave him some more info that she needed. As soon as I went back in the room, DH was laughing at me that I had to go "rat him out." Hey, just doing what I had to do!

And with that, I took the kids to see Peter Pan, again reminding them of the new schedule a few times as we drove. We sat down and watched the AMAZING production - professional quality entertainment all performed by KIDS! A was definitely off through most of the show, needing to sit on my lap about 1/4 of the way through (he often craves pressure so seeks out hugs a lot), at times turning in to me for a tight hug, at times turning to the show but staying on my lap. J, not to lose her Mommy's lap, insisted on sitting on my lap too (luckily I have two knees and lots of experience sharing my lap), cuddling into me to rest. B sat with his hands over his ears (two years ago we had attempted to watch another production of Peter Pan and B had gotten two scared about the idea of the crocodile eating Captain Hook's hand so we had to leave) pressed up against my right side. When the show was over and I repeated the schedule for the rest of the day (go out and meet the characters, go to Aunt J's for lunch and then for a sleepover while Mommy went back to see Daddy) A broke down completely, sobbing that he thought we were having lunch at home (see why I repeat the schedule so often, even though it still didn't work this time?). Luckily we were in the absolute top row so I was able to pull him onto my lap and rock him as he cried. The other two, almost oblivious to A's hysteria, began pestering me to go out so we could see Peter Pan and Tinkerbell, anxious we would miss them. It got to the point that I started looking around the auditorium, desparately searching for anyone else that I knew who could help. Never mind all the people we saw before the show started that we knew, I couldn't find anyone now. I finally was able to get A to verbalize WHY he wanted to have lunch at home (yes, I'm so grateful he is verbal) and then reasssured him that he could have his electronic time on Aunt J's computer just like he does at home, but not if he kept crying. That stopped him quickly enough, and we went out to say hi to the various characters. I then drove them to J's, went home to get a couple things for DH, pack the kids' stuff for their sleepover, and put together some things for me to do while waiting in his room, and then drove back to the hospital.

Part two will come later - my time is up and I have to get home so I can join everyone at my IL's for dinner. I am so behind in paperwork (which I was planning to be doing this afternoon) but writing seems to help me process things, so that's what I chose to do instead, and I think that did help.

Friday, July 11, 2008

DH's update

Just left the hospital. DH seems to be virtually pain free at this point, but they're keeping him overnight again for observation. The doctors plan to discharge him in the morning. We still don't know what caused the pain, but they did a ton of tests which ruled out life-threatening stuff. I will be talking with his doctor tomorrow morning to find out what we do next. I have more to say, but I'm tired and need to go to bed.

Just had to note how incredible my neighbors are:
One neighbor came over no questions asked last night to sit with the kids so I could meet DH at the ER.
While I was at the hospital all day, two of my other neighbors came over and weeded and weedwhacked the yard.
Aren't they amazing?!!

Useful knowledge

Wanna know the quickest way to be seen when you go to the ER? Just mention "chest pain." Yup, they wisked DH back so fast by the time I finished with the very fast registration they already had him hooked up to the EKG machine.

His pain responded to the nitro tablets they put under his tongue, so they decided to admit him to run more tests. He's there now. All the tests are showing no cardiac problems, but the chest pain has come back (just not to the same extent). He just called me to say the last doctor to come in made it seem like he was going to be discharged this morning, which really surprises me since he's STILL IN PAIN and they DON'T KNOW WHY!

Tuesday, July 01, 2008

Food Choices

I don't think the way we lose weight is really fair.

I understand how it all works - burn off more calories then you take in. But I really think the food choices you make should really count a whole lot more than they do. For example, J and I were at Starbucks tonight (the boys are taking a drama class from 6-8 so it's easiest for J and I to hang out instead of going home and coming back out). I was hungry, and quite tempted by all the incredible pastries they still had in the display case. But I was good and selected the fruit and yogurt parfait they had.

This morning I had a bowl of Curves cereal - one bowl of a good cereal, not two or three with lots of added sugar. I had half a Coke at lunch time (wasn't really hungry and decided not to eat just because it was lunch time) and then a nonfat yogurt and some grapes around 3 when I was hungry - instead of buying the kids and I snacks at the pool snack bar we were visiting. I had a homemade "steak sandwhich" (toast, low fat salad dressing, leftover steak sliced up - now you see why, as someone living so close to Philly, I had to write the name of my sandwhich in quotations) for dinner - instead of driving thru McDonalds like I really wanted. All those great food choices, I should be dropping the pounds so easily.

I guess that big bowl of ice cream after I put the kids to bed didn't help too much, huh.