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Tuesday, January 24, 2012

Update on Carter

So Carter was in the hospital for 18 days, including surgery recovery.  Holy cow!!  For those that didn't know, after Carter had his tonsils and adenoids taken out he came home for the weekend and cried constantly.  We tried Tylenol and Loritab and nothing seemed to help him.  He literally cried day and night when he was awake.  Nothing comforted or helped him.  By Monday morning we were both so exhausted and frustrated, we took him into the ER to see what we could figure out.  The ENT docs came and looked at his throat, and said it looked like it was healing fine and he shouldn't still be having that much pain from it.  They tried a dose or two of morphine and it helped him calm down a little that he could nap.  They ended up admitting us after an xray showed that he was very constipated.  They started a bowel clean out that Monday evening, along with enemas and suppositories.  By Tuesday afternoon he was pretty much cleaned out, which another xray showed.  Still Carter was crying and very fussy, which is super unlike him.

Over the next week or so, the doctors tried various tests to see what was going on with him.  They did an ultrasound of his stomach to see if things were twisted inside out, a scan of his brain, they tested him for kidney stones, they tried morphine and Tylenol for pain, they tried Ativan for anxiety, etc etc.  Wednesday he was pretty bad and cried a lot, so by Thursday I took the day off from the hospital and let parents take their turns.  Most of the nights there at the hospital, they either had to wheel him in a wagon all night long to get him to sleep, or he woke up multiple times crying.  I was discouraged to hear and see he wasn't getting much better.  Everyday showed little improvements, but he was still not like my Carter.  My Carter generally slept through the night, napped here and there, was very happy and chill and relaxed.  We could go to the stores, pretty much anywhere and he was pretty good.  We did have the occasional mishap with church and such, but when he cried it was always manageable and contained within 30-40 min.  He never cried just to cry, on and on for no apparent reason.

By Sunday I was pretty frustrated, depressed, and devastated to see my little boy changing so much and I had no idea why.  The doctors had no medical reason to explain this change in him.  We saw so many different specialists I can't even remember.  I even emailed a doctor in Cincinnati that has dealt with numerous 1p36 patients to see what he thought, and he made some suggestions.  I did research online, I asked my 1p36 family on Facebook for ideas, I prayed, I cried, he received blessings, his name went on the prayer roll multiple times....on Sunday they started him on a low dose of Neurontin.  It is a medicine that is supposed to help calm nerves down and make them able to deal with their environment and surroundings more easily.  It takes 5 days to even see if the dose is working, which was frustrating to hear.  The doctors started to mention discharge almost everyday to get us ready to go home.  I was not ready yet.  Over the 2-3 weeks since his surgery and this change in him, I had entered a dark place.  I was experiencing depression all over again, similar to post partum.  I was no longer confident in my abilities as a parent, I was scared of Carter and of being around him, scared of his crying/fussing.  I was not sleeping well, I was stressed and not doing well.

On Wednesday they discharged us, because they had no medical reason to keep him there.  We met with Dr. Nancy Murphy that morning before we left and took a tour of the South Davis Community Hospital.  We now had two options- go home, or have Carter enter this hospital until he was completely better.  After taking the tour, I felt even more depressed and felt impressed that he should come home and see what happened.  I was so nervous to bring him home, I literally was shaking and crying a lot of the time.  It might sound dramatic, and I'm sure being pregnant had a part in my emotions, but I was terrified.  It was like bringing a newborn baby home, feeling like we were starting all over again.  Not knowing what to expect.  I have had my Carter for 2 years and he was never like this.  It was scary.  My mom came over the first two nights he was home to help me get him in bed.  Each night he cried to go to sleep, but it got less with each day.  He seemed scared of his crib which was weird. 

He has been home 6 days now, and things have improved but are still not back to "normal".  I feel like I've had to re-introduce him to our apartment and his home.  I've had to re-teach him to go to sleep in his crib, to self soothe, to try and get back on schedule, to take naps again, to go places and run errands, be around people etc.  Everything has been kind of like trial and error since bringing him home.  I was scared the first time I vacuumed, the first time I used the blender, the first time I laid him down for a nap, the first time we went to the store,etc.  Might sound silly, but I was literally walking on eggshells.  I keep saying knock on wood, but he is sleeping better at night.  He will go down about 7:30-8 and will fuss for a bit, then falls asleep on his own.  I now use a nightlight to help him feel more comfortable.  He will wake up once or twice to cry but self soothes himself.  I don't go in at all.  He is waking up more happy, whereas the first few mornings he seemed grumpy and disoriented.  I am still working with him on naps- he still resists them and won't do it for very long.  Then he is tired all day and rubbing his eyes.  By 4 pm he is pretty grumpy the rest of the evening, which is hard.  He needs more entertainment, scenery changes, attention and coddling.  While I know that things are much improved, I want my old Carter back.

We increased his Neurontin last Friday and may do so again if we continue to see it helps.  The other thing I've always wondered in the back of my mind, is that this ketogenic diet he started in November affected him.  We don't really see seizures anymore which is fabulous, but maybe because of that new awareness he is getting sensory overload and isn't able to handle his environment as well anymore.  He is more sensitive and touchy- if things don't get better we may consider taking him off the diet.  That would be a last option though, because he has made more improvements.  He is more aware, he looks at people more and tracks them, he smiles and laughs a lot.  These are all great, but then you have the increased fussiness in the evening and the no naps and the occasional rough night.  The doctors seem to think he is experiencing some kind of neuro stress, which really is not a great explanation because who knows how the brain works?

I am trying really hard to remain positive, focused and patient.  I am trying to put myself in Carter's shoes and to really comfort and be there for him.  It has been hard because I am emotionally drained, still depressed and scared, and big pregnant.  I feel like I haven't taken good care of myself, I don't eat or drink enough and I haven't gained any weight with this pregnancy.  I am 26 weeks and still 5 lbs less than when I began.  I find that I am always anxious, not sleeping well, and very antsy.  I hope with time this will get much better.  If it weren't for my husband, I am sure I would have thrown in the towel by now.  He has been amazing.  My family has also been very supportive.  It's hard for me to have a special needs child that I can't talk or reason with, and now feeling like he has a completely different personality--I feel pretty overwhelmed.  Take it one day at a time right?  Please keep praying for Carter's continued rest and well being, and my emotions to even out again.  I want to feel happy and hopeful again, but it feels far off still.  I don't think anyone can really understand unless they've been through it too.  I will try to keep the blog updated, and hopefully the next post or two will be much more positive.


  1. What a trial. Sorry you guys are going through this. We'll be praying for Carter, but even more for you. Your experiences are unique and no one can completely understand what you're going through but I know that things will definitely get better. And, personally, I think you're handling the situation very well!

  2. We have gone through tough periods like this with Zoe. I usually retreat and I don't talk to many people about it which only makes it feel more lonely and tough. I think it is great that you are able to talk about what you are going through and to get strength from the people in your life. As I write this Zoe is screaming in her has been a rough month. So I will think of you and while I do not know what it is like to be Carter's mom, I do know how heartbreaking it is when you look into your child's eyes and wonder where did they go and will they come back?

  3. You're completely right, I can't even imagine what you're going through. I can understand being in a dark place. This post-partum period has been the hardest I've gone through. I so admire you being able to talk about your feelings and your struggles, because we all have them to some degree. I think being able to admit when you're having a hard time shows such maturity. Hang in there.

  4. wow this sounds really hard for you. I am so sorry to hear about carter. i also had a quick question and was wondering if you'd be able to help me. i am looking for a Dr. to see a child who was just diagnosed with 1p36 deletion syndrome. i am looking for someone who specializes in that area. i am having a very hard time finding that. if you know of any names it would be greatly appreciated. thank you so much, and best of luck to you and your family.

  5. I can't even imagine going through all of that, Heather. I don't think you're dramatic at all! I get so much anxiety over my kids health and well being as well. My first had severe colic for the first 6 months.. crying all day, waking up all night.. I started feeling pretty delirious and depressed and not sure I was doing anything right. Most the time I just cried too. You guys have been through so much. I truly hope Carter gets feeling all the way better, and I hope you and Chris can get some rest too.

  6. Perry- I don't know about a 1p36 doctor as most don't specialize in that area or even know what it's about. Plus i'm not sure where you are from. We got the diagnosis on my son Carter from a metabolic geneticist. Every other doctor Carter sees never has a clue about 1p36 deletion syndrome. Unfortunately there are no experts, the parents are. There is a group on Facebook you could join.

  7. thank you so much! i think your are amazing!! good luck!