Family May 2012

Happy Birthday Tobie!

Three years ago today, my miracle baby, Tova Lieba (meaning "kind heart" or "loved one"), was born. It was the end of a hellacious pregnancy with the sweetest, most beautiful five pound reward at the end. Every day with her is a joy, which probably means her teen years will be hell. I'm so honoured to be a mother to four amazing children. So very lucky to have been given this fourth chance to be called "Mommy."
My Little Princess, then and now:

Tobie 2010

Tobie 2013
Family May 2012


After my last post, I disappeared again.  This was not by design.  On May 29th, I was supposed to see my gastroenterologist in the afternoon.  Before leaving for my appointment, my home health nurse came to change the dressing on my central line (a Hickman catheter).  When he was here, he was concerned, because it looked like my line was getting infected.  He felt that I needed to go straight to the emergency room.  Knowing how darned difficult it is to get an appointment with my doctor, I went to her first (she and the hospital are about the same distance).  When I checked in with the receptionist, I was quite early and I asked them to check with the doctor to see if she would prefer I proceed to the ER or wait for my appointment.  Dr. S came out to see me and took one look at the site, which by then was red all the way up to my shoulder, and sent me to the ER.  Argh.

Meanwhile, my husband was in California (the other side of the country) and was expected to be there for at least a month or more.

I knew a line infection probably meant 3-5 days in the hospital, so I arranged for extra babysitting and for my mother to spend the night with the kids.  I arranged for people to take the kids for the weekend in case I was still in the hospital then.  And I settled in for several hours in the ER waiting room.  Once I got called back to see a doctor, she confirmed what I already knew: that I needed to be admitted for treatment, and that I could expect to wait 6 to 8 hours for a bed for admission.  Fortunately, Hopkins has a beautiful new ER, so at least it was comfortable-ish.

The next day was a flurry of tests and cultures, etc.  And shocking, but well-timed, news.  My husband's project in California had been overstaffed, so he was sent home after less than a week there, instead of the promised 6 week project.  Well, at least that meant I didn't need to worry about where to put the kids for the weekend. What we didn't realize at the time was how crucial it would turn out that he ended up being home.  Because my expected 3-5 day hospitalization turned out to be a 16 day saga in which I was barely lucid and have very little memory of even today.  Thank heavens he was able to be there for most of the time I was inpatient.

Shortly after I was admitted, it appears that I aspirated something (we're not sure what), and I got pneumonia (right after having gotten the pneumonia vaccine, ironically).  I have no memory of this.  I do remember going to interventional radiology to get a port put in (lower risk of infection with a port than a PICC or Hickman catheter) and being told I had a fever so I couldn't get it that day.  I imagine that was the start of the diagnosis of pneumonia, but from there, my memory is very spotty.  Apparently after I got sick, I became quite delusional, had a psych consult called in, and ended up with a 24/7 babysitter.

Since getting discharged, I have spoken to numerous people who have told me that they talked to me at multiple points during my 16 day hospital stay - I have absolutely NO memory of these phone calls.  Even a call with my grandmother.  I went on a walk of the hospital nearly every day with my husband and I only remember a couple of those walks.  Apparently, we bought a father's day card for my father, which I only vaguely recall.  Also, apparently I'm a smart-ass.  When I finally got cleared to get a port (I don't remember getting it - I just now have this weird thing implanted under my skin now, which I find really disconcerting!), apparently I said to the resident, "Don't take this the wrong way or anything, but what year are you?" "Fifth year," he said.  "Okay then, you're good," I replied. I can totally see THINKING that, but I can't believe I actually said it.

I also received a blood transfusion (2 units of blood) because my hemoglobin level went down to 6.6.  Bad news bears.  Apparently I said to the nurse, "When my daughter was in the NICU and had a blood transfusion, they made me sign a consent form that said she had a 1 in 16,000 chance of getting Hepatitis B and a 1 in 60,000 chance of getting HIV [it might be the other way around], why aren't you having ME sign a consent?"  My husband doesn't remember me getting a satisfying answer to that question.  It must be covered under my general consent for treatment, which I signed upon admission. Frankly, I don't even remember signing the general consent for treatment, so I'm not even sure that's valid since I may not have been lucid at the time that I signed it!

Because of things that were said and done during my delirium, a condition of my discharge was that I see a therapist weekly for cognitive behavioral therapy to help me "cope better" with my illness.  Well, to hell with them.  I already had a perfectly good therapist, and I'd like to see any of the doctors cope as well as I do with not eating solid food for three years.  But whatever.  I will comply with weekly CBT, but not because I'm not coping well, but because I'm literally traumatized by the fact that I lost over a week of my life in my memory.  I keep learning things about my time in the hospital that I have ZERO memory of and it is beyond disturbing.  Not because the things that happened were disturbing in and of themselves, but because I have NO recollection of them whatsoever.  Two rabbis have told me that they spoke to me several times and have reassured me, without prompting, that I said nothing inappropriate.  (It worries me a little that they felt the need to tell me that I said nothing inappropriate when I didn't ask that question...)

Suffice it to say, it's taking a little while to readjust to life on the outside.  I'm seeing a new therapist on Wednesday who was recommended by our developmental pediatrician - I trust him implicitly and he promised me that she wouldn't be offended if I called her a shrinky-dink, which is crucial to our getting along.  I still am recovering from the pneumonia (I'm told by multiple health care providers that it will take at least a month to fully clear - ugh!).  I have a new feeding tube pump which gives 50% formula and 50% water flushes each hour in hopes of keeping me better hydrated without having to resort to IV fluids via my port (to keep my infection risk lower).  And I see my gastroenterologist again on the 28th, so maybe she'll have more answers for me.

Hah.  Hah!
Family May 2012

And He's Off...!

This morning, sethcohen finished packing for his trip, printed out directions from the airport to his hotel and various other places that he needed to go, and headed upstairs to say goodbye to the kids.  He told each one of them that Mommy (that's me) was going to take him to the airport and he was going to get on a plane and go away for a while but that Mommy was coming right back home and that he would be home as soon as he could.  He gave everyone hugs and kisses.  Sam was chewing on a marshmallow when he got his little speech, hugs and kisses, and he had a vacant little smile on his face the whole time.  I knew he wasn't processing a single word Seth said, but Seth insisted (based on the fact that Sam hugged him back) that Sam understood.  Until Sam looked at him and shrugged while saying, "But, if you set a marshmallow on fire, it won't be fluffy anymore!"  and then he scampered off...

Yeah.  Did I mention that my kid's on the spectrum?

We'll miss Seth, but we hope that the next six weeks go by quickly and relatively painlessly.  I've hired an extra babysitter to help me in the evenings and on weekends and I hope that's enough to get me through.  Seth's going to have a very demanding schedule while he's in SoCal, so I don't envy him in the least.

On the health front, I had a Secretin MRI/MRCP earlier this week and the preliminary report showed that my pancreas and pancreatic duct are working, and that my common and bile ducts are enlarged.  Not sure what all that means but I'm seeing my GI doc on Tuesday and will know more then.
Family May 2012

Catching Up and Diving Back In

I haven't posted to Live Journal since June of 2011 - when we lost Julian all together and it looked like we would never see him again.  I'd like to get back to posting, and I've tried several times, but after such a long lapse it always feels like there's too much to catch up on.  So I'm just going to dive right back in with some salient points.

The Kids
The kids are doing great.  Tobie, believe it or not, just turned 2 years old, but she thinks she's a 4 1/2 year old because everyone else is, so why shouldn't she be?  The triplets, as you may have noted, are 4 1/2 and vary between awesome and incredibly annoying.  The girls fight with each other all the freaking time, but they're so cute and lovable that it's hard to hold that against them.  Sam's doing well and his recent IEP meeting revealed that he's doing well enough to move on to an integrated classroom next year (part typically developing kids, part special needs).  We have seen Julian a few times, but his mother has been refusing to return my calls and emails recently, so we haven't seen him in several months.  It's not what we'd like, but my main focus has to be on the children who are IN my house right now.

Seth lost his job at the end of December.  He got a temporary job in January for 13 weeks, but that's over now.  Although he's looked for a permanent job locally, he's been unable to find anything so far.  So, he's accepted a 6 week position in California starting this Friday.  He leaves tomorrow.  He'll be working 6 days a week, twelve hours a day, so he won't be able to come home while he's there and my health isn't good enough to go out and visit him while he's out there (more on that later).  So we'll miss him and he's going to be working his tail off, so it's going to suck all around. But the money won't be bad, so we can't entirely complain.  

My Health
My health has been pretty terrible since Tobie was born.  It hasn't been getting better - it's been getting worse.  This year, I've had three hospitalizations, gotten a G-J feeding tube (which has been replaced twice) and a central line, become septic and almost died, gotten a massive clot from my central line, gotten a new central line, been told by the third best gastroenterology clinic in the country (Johns Hopkins) that I should probably look into other clinics in the country because there's not much else they can do for me, and lost about 40 pounds. Now, I needed to lose those 40 pounds (and need to lose another 40), but not eating isn't the way to lose weight.  But, pretty much whatever I eat the conventional way (via mouth), I throw up.  (Not on purpose - believe me, I'm not a fan of throwing up!).  I've been on a medical leave of absence from work since March 2nd and am slated to be out through July 1st at least (probably longer).  I have little energy for anything most days and spend a lot of time in pain and nauseated.  There's really no end in sight.  My options right now are:  surgery to get a gastric neurostimulator (the surgeon at Hopkins won't do it because he's an ass, which is why my GI doc has suggested I look elsewhere in the country), surgery to have my stomach removed (which I feel is a little drastic at age 36, but is under serious consideration), surgery for a different kind of J-tube (also under serious consideration, but on hold because I was recently septic), or just putting up with the status quo.    I have an appointment at the Cleveland Clinic (#2 Gastroenterology Clinic in the country) in September and I've asked Mayo (#1 in the country) to review my records to see if they'll offer me an appointment.  I'm also trying to get an appointment at Mass General.  Hopefully something will come through.

And that's about it.  More to come, I'm sure, but that's enough for a catch-up post.  I'll leave with a new picture of us:

family icon

Julian - Denouement

This will be the last update you'll receive regarding Julian's status.  As many of you know, our legal guardianship was terminated as of June 7th, 2011.  Seth and I agreed to this despite Sarah having failed to meet all of the stipulations of our prior consent order as we felt that a prolonged battle with Sarah was not in Julian's best interests and it was certainly not in the best interests of our other children.  At that time, Sarah was still bringing Julian to see his therapist, Dr. G, and his developmental pediatrician, Dr. S., and had plans to establish an IEP with Frederick County schools where she plans to send him in the Fall.  So although it wasn't the best case scenario we had hoped for, it was a workable solution for Julian.  Sarah had agreed to a continued relationship between Julian and us - she agreed to us continuing to having Julian every other weekend, Thursday through Monday for the foreseeable future.
Within a week or two of the termination of our guardianship, it came to light that Sarah was no longer making any effort to take him to see his therapist, Dr. G. 
She has also ceased pursuing getting an IEP set up in advance of his start date at school and will not seek the assistance of an educational consultant.  She has full faith and confidence in the Frederick Schools and knows he will do well there without having the IEP.
Finally, earlier this week, we were told that she is no longer taking him to see Dr. S.  She has found another "developmental" pediatrician in Frederick.  I put "developmental" in quotation marks because Dr. S. has never heard of him and believes that he is a general pediatrician who is willing to supervise Julian's medications.  However, Julian is on a complicated regimen of five different medications which took three years to figure out including a series of consults with a specialist at NIH.  He should be followed either by a developmental pediatrician or a child psychiatrist.  Sarah has no desire to transfer records or notes from Dr. S. to the new doctor, so it is my belief that she does not intend to continue his medication therapy over the long term.
Yesterday Seth and I were told that we will no longer be permitted to have Julian overnight.  Although we were supposed to have him this weekend, starting last night, we may not have him.  We may instead, if we wish, see him this Sunday during the day. 
Truthfully, Seth and I had already decided as a family that we could not continue a long-term relationship with Sarah and Julian as it has become detrimental to the health and well being of our other children and to our family as a whole.  Julian's behaviour has deteriorated rapidly since the transition to Sarah's home, his coping mechanisms are minimal, her interference is maximal, her unwillingness to communicate is astounding.  We have two other special needs children, including an autistic son who needs to be priority 1 right now, per his therapists and Dan S.  So we were already planning to ease off on frequency of visits over the course of the summer, but we had not expected an abrupt end to them without any notice.
I expect that there will be another abrupt end to even our Sundays with him, and I anticipate the possibility that this Sunday may be the final time that we see him.
I tell each of you this end to this long journey not because there's anything to be done about it, but because each of you played a role in Julian's life, or in ours, through this journey, and we feel you deserve to hear the closing act.  Time heals many things, and although in my heart Julian will always be my son, I have four other children to focus on now who need me more than ever as they adjust to the new paradigm of our family life.  I want to thank each of you for the help that you offered at the times that we needed it.  I'm sorry that we weren't able to maintain a level of civility and collaboration with Sarah over the years with Julian as we had envisioned, but I believe that requires a level of maturity, self-awareness, and selflessness that she does not yet possess.  Perhaps she'll grow into that someday.  I hope so, for the sake of her children.  (yes, I said childREN....she's pregnant, expecting another baby in September).
We don't regret bringing Julian into our lives - he opened our hearts and our minds to so much and will forever be our first son.  It will take time to adjust to this loss and our family will never be the same without him.  But it is time to move forward and focus on the rest of our children.
With much love, and some hope,
Seth, Karen, Sam, Abby, Ellie, & Tobie

Stupid People Who Make My Life More Aggravating Than It Already Is

 I am getting an ear infection.  My second in two weeks (different ear), which is pretty much how my life goes.  I can't find my ear drops so I needed to get it refilled at the pharmacy.  This involved the unenviable task of speaking with a CVS pharmacy technician.  UGH. 

 After 11 and a half minutes on hold I got an idiot tech who couldn’t even figure out how to use a phone, let alone a computer. And he sure as heck didn’t know how to use “active listening" skills.  Observe:

“Hi, my name is Karen Cohen.  I had an ear drop filled recently, but I can’t remember the name of the medication and I need to refill it.  It is the only ear drop I have had filled in the last couple weeks, so it should be fairly easy to find.”
“I’m sorry, I really can’t hear you.”
“I’m sorry, but it sounds like you have something over the speaker part of the phone.  I can barely hear you.”
“No I scratchyscratchy don’tscratchyanyscratchythephone”
“Really I can’t hear you.  There’s something wrong.”
*something changes in the quality of the phone*  He has clearly taken the phone off his shoulder and actually put it up near his mouth.
“What is your last name?”
Though I am now exasperated that he didn’t bother listening to my name at the beginning of the call, I say, “Cohen, c-o-h-e-n.”
“First name?”
“Karen.  K-a-r-e-n.”
“N!!!!  K-A-R-E-NNNNNN!!!”
“Okay.  Which medication would you like to refill?”
“ *sputter*  Really?  After keeping me on hold for over ten minutes it would have been really nice if you would have at least *tried* to listen to me when I was talking.  I don’t remember the name of the medication, but it is the only ear drop that I have filled recently.”
Stupid tech fumbles around for a *full*  minute or so.
“I don’t see it.”
“I filled it on June 9th or 10th.  It’s the only ear drop I’ve filled recently.”
“Okay.  Yeah.  Let me look.”
Silence.  Fumbling around.  Muttering to himself.  No acknowledgment of me being on the other end of the phone.
“Yeah, I don’t see it.”


“Oh, okay.”

 And then I spoke to Daniel, pharmacist extraordinaire.   Who found it in 10 seconds flat.  And it will be ready tomorrow.


Family May 2012


I now have documented proof that I have a brain!

MRI today went fine and I came away with a CD of the images, all 344 of them.  Unfortunately, I didn't go to medical school so I don't know what any of them mean, but it IS clear that there's a brain in there.  Don't know when I'll get the radiologist's report.  I'm following up with the neuro-ophthalmologist on the 15th, but I may need to call him before that, because I feel like my peripheral vision is shrinking.  Ugh.One day at a time, right?
fraggle rock!

Adventures in Parenting

I started a post a while ago and I'm clearly never going to finish it, so here's the partial post I had put together since I may as well get it out there.

On Sunday, I packed up all the kids and went up to Baltimore to take them to the Aquarium.  My mother met us there, so I had some help, but it was still a lot of work!  Well worth it thouh.  We did not survive the trip completely unscathed, however.  Poor Sam took a tumble on the sidewalk walking from the parking garage to the aquarium.  Oh the screaming.  Let me paint the picture for you:  I was wearing Tobie in a Mei Tai wrap and Julian was walking ahead of me.  The triplets were wearing monkey backpack harnesses (the tail of the monkey is a teather that I can hold onto).  I was already struggling to keep from getting tangled up in the harnesses, keep up with Julian, and keep Tobie from bouncing around too much when Sam tumbled.  Poor Sam was petrified and in a fair bit of pain, too.  He got a big bump on his head and a scratched up nose and wanted to be picked up for comfort.  And everyone around me was just staring at us.  Seriously, people.  You don't have to help me if you see me struggling, but the least you could do is politely look the other way instead of staring at the free freak show in front of you.  I cannot be the first woman to wander the streets of Baltimore with five children in tow.  

Once I calmed Sam down, I put him down and we started to walk again and Julian got hysterical because Sam's nose start bleeding.  Perfect.  More stares, but I got it cleaned up and everyone was okay.  Of course, right after getting Sam all cleaned up, I ran into a fellow board member from my multiples club.  She was out without her kids so she looked calm and relaxed.  I was out by myself with all five of my kids.  I'm sure I did not look calm and relaxed.  Oh well.  If anyone will understand it will be another mom of multiples.