Monday, August 30, 2010

New Jumping Toy


video
Ten months: Gili is holding her head up and using both hands in her new toy!  I hope this jumper helps her strengthen her spine and reach for things.  Thank you Aunt N!

Sunday, August 29, 2010

Progress with Improvised Exercises

Over the last couple days I've seen Gili get up on her knees a few times.  Not quite the pre-crawling rocking back and forth I would hope for by this age, but very briefly getting up on her knees and shoulders or knees and elbows.  Maybe it is pre-scooting.  Either way, it is very exciting because it seems like she has come a long way in the last week with the little exercises I'm doing with her.  She also has begun rolling in the other direction.  Oy, she just threw up a little.

Unfortunately, I've noticed two worrisome things.  (Leave it to me to find things to worry about!)  Her eyes seem to be getting worse.  Before they were just cute cross-eyes, and a slight feeling that they lacked alignment.  But today one of her eyes seemed to wander more noticeably and it's a little creepy.

I also noticed that her left arm seemed a little stiff, but after gently playing with her a little I was able to get her to straighten it a few times.  I think I will continue to do some gentle stretching with her arms and legs and pay more attention to her flexibility.

She still seems sick.  I'm constantly suctioning yellowish mucus from her nose.  But she hasn't had a fever in at least a week and  half and she seems happy today.

The Medical System in Israel

Medicine is one of the most integrated professions, with Arab Israelis, Jews, and Russians all working side by side.  My primary care physician is a Dr. Riyan Jihad, and he took off for the beginning of Ramadan.  I'm pathetically unaware of who's Jewish, etc, so I can't tell you if I would have chosen a different doctor in the beginning, but I always come home saying, "Wow, he's so nice." (Not, because he's Muslim, because he's nice compare to other doctors.)  The radiologist who administers Gili's BERA" is a Muslim women and I look forward the seeing the fun colored outfits she wears, though I don't know how she can stand the heat of the hospital in her thick head-to-toe garments.  Many of the nurses are Muslim, especially on the Sabbath.  The patient rooms are also mixed and if you want to see many different cultures all being treated with the utmost care and respect, the hospital is the place to be.  The only reason I care is because I only speak English, and less Arabs and Russians do.  It gets lonely when there are three patients to a room with all their visitors and no one I can talk to.  When we were first admitted I was blessed to be stationed next to a wonderful English speaking family from our city.  I was very new in town and they introduced me to many of the friends I have today.  We still keep in touch.

Even though it is socialized medicine, you can still pay for upgrades in your plan or private insurance.  You usually don't have to wait as long to see a doctor as in the U.S. and paying for private insurance doesn't really change that.  It's more about the perks than the quality of care.  If I need to see a specialist in a hospital or outside our plan, it costs me about $7 for a “Form 17”, but we already reached our max of around $30, so we don't have to pay.  I filled out a form with my credit card and now they will fax the forms wherever and whenever I need them.  The receptionists in Israel are not like the gatekeepers of American doctors.  They are friendly and helpful.  They make appointments and help with paperwork, but they don’t have anything to do with keeping you from seeing or talking to the doctor.  If I call and say, “Dr. Finkleshtien please,” I get to talk to her.  They have been unbelievably helpful through all that we have been through.  Anytime I say I had trouble making an appointment because of my lack of Hebrew or anything, they help me.  

In Israel you sit directly outside your doctor’s door within the “kupot cholim” health clinic and just have to convince the other patients when it’s your turn.  There is no receptionist or nurse who calls you.  There is a list of appointments, but there are always people who try to get in without an appointment.  They eventually get in by convincing another patient of the severity of their illness or of the briefness of their request, “I JUST need…” At the pediatrician I can leave my boxing gloves at home, but I still need to sit as close as possible to the door and be ready to shove my stroller in as soon as it’s our turn. 

Doctors don’t have separate offices for examining patients and giving patients bad news.  The exam table is in the office and you don’t have to take of all your clothes and lay down for every little thing.  Usually the doctor will just walk around the desk and look in your throat.  You enter and give the doctor your “magnetic card.”  They slide it through the slot next to their keyboard and can pull up all your medical records, labs, and even see upcoming appointments in the hospital or with specialists.  I can see the same information if I log in from home, or take my card to a self-serve kiosk in the kupat cholim.  They look like self-serve movie or plane ticked stations. 

Many doctors, including my physician and doctors in the hospital go by their first names.  The workweek is Sunday-Thursday or Friday morning, but don’t try to get anything done in a hospital on Thursday, because people are already getting into a Friday mindset. 

Israeli’s don’t have the same respect for administrators and “gatekeepers” (secretaries and other people who keep you from where you want to be or who you want to talk to.)  We’re one big family and people will argue with a pharmacist or clerk like your worst argument with a brother or sister, but they can be laughing together a minute later.  It is hard to handle, because I am more sensitive to what feel like evil looks or criticism.  And because everyone feels like family, I have lots of “friendly” advice to look forward to as Gili’s developmental delays become more noticeable. 


Saturday, August 28, 2010

Ganciclovir Treatment Decision

I've been reading more stories on StopCMV.org and I haven't seen any stories of children treated with Ganciclovir, so I wanted to share what our doctor told us and our experience with it.

First, I don't know when I got CMV and Gili couldn't get a definitive diagnosis of congenital CMV because she was tested at 5 weeks of age.  I was hospitalized with the H1N1 flu at the beginning of my 3rd trimester and given Tamiflu.  I suspect there may be a link between that and the CMV.  In a previous ultrasound they said my fetus measured in the 95th percentile.  After the flu I was measuring smaller, even though I hadn't lost weight.  I didn't believe my midwife when she thought my baby would be around 6 lbs, because my other kids were around 7.5 lbs.

The diagnosis was made in Schneider Children's Hospital in Israel when she was 2.5 months.  (I will post all about the Israeli health system in my next post.)  It was based on the positive 5 week urine culture and other symptoms, including enlarged liver and spleen, brain cysts, and a scar in her left eye, suggesting a virus in-utero.  This was at the end of a whole day of testing that I originally thought would only be a brief consultation with a doctor.  (Luckily, I was still trying to nurse at the time, so I only ran out of diapers at the end of the day!)  The tests were orchestrated by Dr. Haimi, an infectious disease specialist.  (I think that's his first name, common even with doctors for adults.)  He was so nice and considerate, and only spoke English to the other staff when I was in his office.  I went back to his office between all Gili's tests, then finally met with Dr. Haimi and Professor Amir together.  Prof. Jacob Amir is either the head of the Infectious Disease department or Pediatrics, I'm not sure.  He does a lot of research with CMV and told us about the range of treatment time frames.  He said that with the evidence we should treat for congenital CMV, even though we could never be sure.  We still didn't have the results from the BERA (hearing test).

Prof. Amir said that he has seen the best results from treating for a full year.  He continues to remind me that he has never seen hearing deterioration after beginning treatment.  Gili began comparatively late, but I tell her, "Don't be special."  I probably should have been shocked and devastated by the weight of the day, but I think the most shocking thing at the moment was, "Get some sleep, I'll see you at 8 am tomorrow."  So I went home, loaded up my MP3 player, prayed for WiFi in the hospital, showered, and otherwise prepared for at least a week in the hospital.  All I really new about the treatment, was that before Gili was tested, her pediatrician in America said that it was not an easy treatment and if it was positive we would meet with a specialist to decide whether to treat.  I asked Prof. Amir a lot of questions but I couldn't uncover any major risks.  He didn't seem to be posing any choices to me.  It was like, if she hears now, we want to keep it that way, this is what we will do.  I never posed the option of not treating.

Gili would have blood tests every week and we could lower the dose if it was hurting her.  I use laymen's terms because I don't know exactly what to worry about.  Now Gli's dose is lower and she only gets her finger pricked once a month.  I check her results online and Prof. Amir explained what I need to look for.  On the line that says "NEUT.abs" the number should be above 1.  If it's between 0.5-1, I need to have another test a week later, if it's below 0.5, I call him.  Lately it's been over 3.  I still don't completely understand the risks, and I don't know if the treatment had anything to do with her bronchiolitus and pneumonia two weeks into treatment, but I hope with blog will be a story of Ganciclovir success.

When we got into the hospital she didn't actually get treatment until 8 p.m. because it takes a while to get the medication.  We were told we would be there at least a week, but it was aggravating, because we were only waiting until the anesthesiologist had time to put her PICC line in.  There were several days we were told "maybe tomorrow" or "maybe today" but they never came to tell me what time she needed to stop eating.  It wasn't until the morning of the procedure that the nurse said, "good luck" in a way like she needed it and I started to worry.  She said it was hard to put a pick line in a tiny baby.  Gili finally got the PICC line after we were there about a week, I was so happy and relieved to be with her as she was waking up.  We had to wait to get all the papers in order for her home treatment (see picture in second post).  A nurse came to the hospital to train us to use the PICC line.  I had to "pass" in order to be sent home.  It was a lot to take in, but the nurse was very nice, passed me, and gave me her cell phone number and e-mail address in case we had questions.

If you're interested, this is what I remember of the procedure:  Take ganciclovir out of the fridge about an hour ahead.  Wash hands, put on mask, open sterile field (blue paper), open tubes and gauze onto it without touching, squirt alcohol on gauze.  Put on gloves (there's a special sterile way to do this.)  Wipe all the places where something opens 3 times, each time with a different piece of gauze.  Hook up the lines, valves and saline.  Slowly push through saline.  Hook up ganciclovir syringe and put syringe in battery operated devise.  Set devise to deliver Ganciclovir over 1 hour.  Remove mask and gloves and take a deep breath and wait.  Then repeat sterilization to remove ganciclovir syringe, slowly push through heparin, and close everything up.

We had to do this twice a day at specific time intervals.  Once I got good, I could do it in almost any clean place.  I could leave the tube attached so she could stay asleep in her stroller and the sterile field could be a meter away on a table.  The battery devise also allowed us to go out, for instance if she had an appointment during the time I needed to give her the medication.

The intravenous treatment lasted 6 weeks and she needed her dressing changed in the hospital every week.  Finally her PICC line was taken out as soon as our pharmacy secured the oral Valcyte - valganciclovire.  She started with two doses a day at specific times.  Now she takes one dose every morning.  We have to put in in her bottle with a little formula because she gags on anything that doesn't come from a NUK nipple.

This post is purely our story, and every case is different.  However, I don't understand why American doctors don't treat more often before children loose their hearing.  I hope I will read more stories in the future of Ganciclovir success.

Friday, August 27, 2010

Gili and Her Family


Before we go any further I think I should tell you more about Gili's state right now.  As I mentioned, she was born 2.7 kg/6lb 1 oz, head 32.5 cm/12.75 in.  Now, at 10 months, she weighs 7.25 kg/16 lb, head 41.5 cm/16.3 in.  Within her first week of life our pediatrician in America felt that her spleen was enlarged and/or too low.  That began a series of ultrasounds, x-rays, and eventually testing for toxoplasmosis and CMV. Before we moved to Israel the doctor told me they needed to check the urinalysis again to make sure it is really negative.  After we moved to Israel we found out it was positive.  At that point I still figured it was no big deal because she seemed like a healthy baby.  

Today Gili enjoys rolling across the carpet.  She rolls to one end and I flip her over and she rolls the other way.  Always in the same direction.  She is starting to roll once or twice onto her less favored side.  She giggles when I flip her over.  Yesterday I thought I saw her start to push up onto her knees.  From her stomach, she can push up on her arms to look in front of her, but she can't hold her head stable in a sitting position and she is no where near crawling.  I think she is hypotonic.  She has a small head (microcephaly), but not noticeably small, and an enlarged liver and spleen.  Her original BERA (hearing test) at 2.5 months was normal, but she had fluid in her ears at the last check.  She has a scar in the center of vision in her left eye.  I don't think she focuses well.  She often goes cross eyed and sometimes it just looks like her eyes are not in perfect alignment.  I also noticed that the blue of her eyes jiggles or "shivers".  She enjoys seeing my face and other people, but she doesn't hold eye contact.  She can't hold objects with both hands, or pick things up.  She only drinks from a NUK bottle.  I think that sums up what I know now.  

The first week in September we have appointments in the hospital with the CMV doctor, Professor Jacob Amir, and also with an audiologist and ophthalmologist.  We're also waiting for an intake appointment with the physical therapist in the hospital.  We had an appointment with the PT in our neighborhood, but both therapists are pregnant so it is against their policy to handle babies with CMV.

Gili's Big Sis is 5 years old and Big Bro is 3.5.  My husband and I are both in our mid-late 20's.  I have a background in art and design, but I completed my education in accounting and finished my CPA certificate around the time Gili was born.  My husband is an information specialist currently working from the dining room table of our 2.5 bedroom apartment.  I spend a lot of my day on the couch with my lap top feeding Gili or getting up every minute to "reset" her when she gets to the edge of the carpet.  I also do little exercises with Gili, trying to help her hold a crawling position, sit, or bounce on a ball.  I enjoy taking my kids on walking trips around the neighborhood, window shopping, and just talking with them while we walk or sit on benches.  I also enjoy doing beads and other art projects with them.  We don't have a car and I love having one less thing to worry about.  I love to cook, but I don't bake much because I don't use recipes or measuring.  

This is the first time in my life that I'm going to be a real stay at home mom.  Until now I was always studying, working a little, or sick and pregnant, so my husband picked up A LOT of the slack.  Now it's my turn to do bed times, shopping, vacuuming.  House stuff.  Until recently I felt very strongly that I just could not find this life fulfilling, and when we moved to Israel we expected that my husband would eventually be a stay at home dad.  Thank G-d, he found work quickly with odesk.com and he has had enough to keep him VERY busy.  I admired moms who put all their effort into making a good home, but I didn't think I was up for the task.  I wanted to put my brain to work.  Last week my outlook changed, my mind changed, and I decided that my children needed me at home to provide them with a stable, consistent, and low stress home life.  Now I need to get back to the laundry!

Thursday, August 26, 2010

How our CMV story begins

Gili is almost ten months old and I have just begun to find websites with information about real people with congenital CMV.  (Like http://www.stopcmv.org/stories.php.)  I wonder if these are common outcomes of symptomatic CMV or if I'm only finding the "interesting" (dramatic) stories.  PLEASE G-d let my baby be uninteresting!  Until yesterday I only found a lot of the same information with statistics, how to prevent it, but not much information about what it’s really like to have a child born with CMV.  I don’t know why I couldn’t find this information on my previous searches (I even searched TORCH disease), but maybe now was the right time for the truth to start setting in.  Did Google know I wasn’t ready to see the real pictures of children disabled from CMV?  

Until recently my friends and neighbors who knew we were hospitalized would ask how Gili was doing and I didn't have any answers.  When she began treatment she had no symptoms I could see.  I didn't know how to measure her spleen and her head looked perfect to me.  But her little lacks of development began adding up.  She couldn't nurse well and didn't gain much weight her first couple months.  We were in the process of moving to Israel so she wasn't being weighed regularly.  She was hospitalized in Schneider Children's hospital in Petach Tikva, Israel the day after she was diagnosed with congenital CMV.  She was almost three months old.  We were there a week and a half while she received intravenous ganciclovir and waited for a PICC line.  She continued the treatment at home for a total of six weeks, followed by oral valganciclovir/Valcyte.  She is now down to one dose a day and we should be done when she turns one year old.  We were home from the hospital for one week and then Gili was hospitalized again with bronchiolitus and signs of pneumonia, and general trouble breathing.  We spent a very scary week trying to keep her oxygen saturation normal.  It was very different being in the hospital with an outwardly healthy baby waiting for a PICC line and being there with a very sick baby who could barely eat and breathe.  It was at that time that I gave up pumping milk for her and completely switched to formula.  She had no interest in nursing.  She still has no interest in anything besides bottles.  She acts like I'm trying to torture her if I try to let her taste some banana or sweet potato.


Gili was a surprisingly content baby, even through blood tests and examinations.  She slept a lot her first few months.  She smiled and laughed ahead of schedule and still seems to laugh hysterically for no apparent reason, like when I suction her nose or clean her ears.  She seems sick and stuffy often, but that could have more to do with our genes or with her older brother and sister bringing germs home.  (Big Siss just asked my husband, "How did I get pink eye?  No one has pink eye except me."  Let's keep it that way!)   People remind me to cherish these moments because they grow up so fast.  Well Gili doesn't.  I remember thinking with my other kids how I loved each new stage and missed the last one a little at the same time.  With Gili, I think, "Shouldn't she be growing out of these 3 month clothes?" or "Shouldn't she be holding her head up, or starting to sit, or holding small toys?"  The most exciting recent developments here are Gili's first two teeth.  She's not so happy about them, but I think they're adorable and it's so exciting to see real evidence that she's growing up.

I think I have the sweetest most beautiful baby in the world.  I'm not sure if the "devastating" news of Gili's CMV is yet to hit me, or if I just don't think that way.  At this stage she still looks normal and the developmental gap between her and her peers is just beginning to become noticeable to people besides my husband and I.  I imagine we will have to start telling people soon, when friends try to have our kids play together... their baby is cruising and playing and mine is laying in her stroller and can't even hold a toy.  I want to be able to tell my friends what's going on, but I don't need sympathy.  I feel like Gili is a little miracle and she is a bundle of mysteries.  As she grows we will discover more about what she can or can't do.  I don't let things surprise me.  If she can hear, I'll be thrilled.  If she needs glasses and still can't see well, it will be an interesting challenge, nothing devastating.  As long as she's not upset by the situation, why should I be?  I am grateful that we moved to a country with excellent medical care and no co-pays every time one of my kids sees a doctor (several times a week and growing).  I don't know what the future will bring for any of my children.  I believe that G-d gave me Gili with CMV.  She's a package deal.  If she didn't have CMV, would she have the other things I love about her?  Her sweet personality, her super soft cheeks, her sparkling blue eyes, her incredible laugh, her delicate feminine arms and hands, her breath, her dimples, the smell of dried drool on her cheeks, the pink of her lips, the way she breathes deeper when I tell her how much I love her?  I want to give my baby the world, and I pray with all my heart that she will grow up and have a fulfilling life, but I wouldn't change her for the world either.

Introduction

Gili was diagnosed with congenital CMV (Cytomegalovirus) around 2.5 months.  She was tested before then, but we were in between doctors and that is when we got the news.  She was treated with intravenous ganciclovir for 6 weeks, followed by Valcyte, which she will take orally until she is one.

Approximately 90% of babies with congenital CMV show no signs in the beginning of their life.  It is becoming clear that our sweet girl is in the other 10%.  I decided to start this blog when I found very little information about what can be expected of this 10%.  I'm not writing this blog to supply information or any consistent flow of news or support.  This is just a journal of one CMV story.

In the next couple weeks I would like to introduce you to Gili, our family, and our life.  Over the next couple years I hope to paint a picture of what growing up with congenital CMV might be like.  I have many questions and I look forward to sharing the answers with you as I learn from experience, doctors, or you, my readers and commenters.  Please comment if you can answer my pondering, or if you have questions of your own.

Things I wonder:
- Will Gili be able to be in a regular class when she starts grade school?
- Will strangers be able to tell she's "special" from her face? (I don't mean her sparkling blue eyes and infectious smile.)
- Do CMV babies live as long as other people?
- How often will I be taking her to physical therapy and other types of therapy?
- Will teachers or parents worry about her or my other children being contagious?  Should they worry?
- Will she get married and have a normal life?  Will potential suiters consider her defective?
- Will she "catch up", we'll forget she ever had CMV, and this blog will be abandoned into the cyberspace abyss?

UPDATE: Two years later, here are my answers.