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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.

Thursday, January 5, 2012

Tonsillectomy from Hell

So I have been needing to vent about this surgery for quite some time, but gave it a few more days to see how things progressed.  Carter had a tonsillectomy and also had his adenoids removed last Thursday- a week ago.  He has been in the hospital ever since- yes, a week.  We decided to go forward with this surgery because we heard it helped other 1p36 kids with sleep and not needing oxygen anymore.  This was our big hope, because at home Carter will rip out his oxygen and just freak out.  I finally got to the point where I said no more, it's not worth it.  He isn't on very much, so we stopped putting it on him at night because the fight just wasn't worth it.  So we decided since we weren't putting the oxygen on him, that we better do something.  The ENT doctor made it sound like surgery was the only other option.  We picked a day that worked for us, especially since Chris was home from work for a bit and could be there to help.  We knew Carter would have to stay one night, but 7 so far??

Carter has had anaesthesia a few times before, and usually woke up fine within a few hours and a little cranky but not bad.  Well, I guess as soon as he started coming to following the surgery, he kept crying, holding his breath and was turning completely blue.  He does these breath holding spells at home occasionally, but it sounded pretty bad.  The nurses were all pretty scared so they sent him to the PICU for further care and observation.  Usually the parent can go see the child pretty soon after surgery in the recovery room and then follows them to their assigned room.  Well, we weren't able to see him for an hour or so and then it was in the PICU.  They are able to give a higher flow of oxygen there, as well as more personal care.  He looked pretty beat up when we saw him, his lips were swollen and bloody in the corners.  So what has happened since?  Well, Carter was in the PICU, with one night on a bi-pat machine, until Monday morning when they transferred him upstairs onto the floor.  After 2 days there, they worried about his work of breathing and tiring out, so they sent him back to the PICU for another night.  Today he was sent back up to the third floor, but nothing is really progressing.

Carter has pretty much been asleep 24/7 since the surgery- he will wake up time to time but not very long.  His work of breathing looks better not as fast, but he still seems to need some oxygen to keep his stats up.  My frustrations have mounted over this week because no one has any idea what is wrong, why he is taking so long to recover, why he is so sleepy, and on and on.  I have liked being in the PICU because the nurses are really there the entire time, their patient load is usually just 1 or 2 patients, and they seem to position him better, suction him when needed, and overall take great care of him.  On the floor, the nurses only come in if he needs to be fed, changed or medications.  I have been frustrated because we are constantly asked the same questions over and over; Carter has been the same for days and isn't progressing or necessarily getting worse, and we are just plain sick and tired of being at the hospital.  Fortunately, we do go home at night to sleep, but being pregnant is always a laughing game when it comes to sleep anyway. I am going crazy being there 12 hours a day.  We have taken some breaks here and there, but I don't even feel like going up anymore unless he is coming home.  I'm not helping any, the nurses are there to take care of him.

His x rays have showed some fluid, which at first they thought was pneumonia.  Now they think it's post obstructive edema, meaning his lungs reacted to the surgery by filling up with fluid.  They have given him stuff to help flush that fluid out, but unfortunately, since the surgery was in his throat, he can't handle the new secretions that are there.  They have to suction him to help him clear his airway.  This really makes him mad, as I'm sure it would anyone.  It's just been really hard to see Carter suffer, when we thought this would be something helpful to him.  We thought it would help him sleep better, not need oxygen, and overall have more room in his airway.  But if anything, everything looks so much worse.  The swelling should be down by now, it has been a week.  I just don't get what is going on.  I want to come home, even if we have to do oxygen at home, but the nurses seem to being careful.  It's just a long waiting game, and is starting to remind me of his time in the NICU as a newborn.  Super stressful and frustrating.  I feel like as a parent we should have some say in his care, which we do have some, but it seems like nothing is happening.  Even if we came home with oxygen I know Carter is just going to rip it out constantly.  Tonight up on the floor he seemed to be waking up more, and was back to his crying spells, freaking out and not wanting to be touched.  It's so frustrating to not be able to help your child or touch them.

I just feel like we made a horrible decision by doing this....I don't know if it will pay off one day, but I am sure super frustrated.  I have lost my patience with all the different nurses and all their questions, which are the same day in day out.  I am tired of eating cafeteria food, of driving up there everyday, of not seeing the sunlight.....I could go on and on.  (my parents did take over for me last evening so I could go home and get things done, and we've run some errands but I hate feeling trapped.)  I know there are worse things out there, much worse, but I sure don't feel positive at all right now.  We have been up at the hospital the last 3 months in a row for almost a week each time, each month.  So you can see why I'm starting to hate this place.  It's just funny how doctors don't really ever have the answers, especially when it comes to a complicated kid like Carter.  People tell me to be positive, but they have no idea what it's like.  All these things we have been doing have been to help Carter and his quality of life-- but sometimes it feels like it really sucks everything out of me.  I had to vent, I hope it makes me feel better after, just a little.  Hopefully we can come home soon, and without any oxygen.  And I also hope Carter's mysterious crying fits/blue spells and not wanting to be held go away.  We need answers.