Well, that was fun!

Thank you to everyone who prayed for and sent well wishes to Avery these last couple of days.  It's been chaotic and difficult, but I'm glad to say we're home after just one night in the hospital and Avery is well again.

When we woke up Tuesday morning to the sound of Avery getting sick, neither John or I imagined where we'd end up by the end of the day.  She's had these intermittent episodes since January - it is why we scheduled the shunt surgery on June 12th - but her body had it's own agenda, as usual.  I feel guilty that we didn't schedule her surgery sooner, or that I didn't take her into the hospital right away yesterday, but we see this kind of "episode" so often lately, that we sometimes second-guess whether it's going to pass.  Unfortunately, yesterday's was the most serious since December 2011, when she first had to have her shunt placed.  When the pressure from extra fluid builds up, she gets extremely lethargic, cannot lift her head off the pillow, is very irritable and sensitive to any movement.  If she does try to move a lot or take a drink of water, she vomits.  For anyone that knows Avery, she's never down and out like this, so it's unsettling to see.  This typically goes on for 3-5 hours, and then she magically snaps out of it and is back to normal.  Her body usually just needs to regulate the fluid that built up in her head, and get rid of the massive headache that it causes.  This time, her shunt had completely stopped working (which we found out later), so she did not recover.  A few weeks ago, her doctor warned us of this happening, but there was no way to tell how soon it would, so scheduling surgery for June wasn't that odd.
By 2:00pm, there was no improvement, and I called the doctor's office and was told to bring her down to Children's.  Luckily, my mom had just come over to help me out, and John would have to meet us down at the hospital.  I instinctively packed an overnight bag because I knew where this was going.  When we got down to the hospital, neurosurgery had anticipated the inevitable as well, and sent us for a CT scan and some x-rays to get current images of her brain.  She threw up twice in the process of getting these, which panicked me even more.  She hadn't kept any fluid down yet, which is totally unnerving for any mom.  I was so thankful my mom had come, because someone was there to hold her hand while she got her scans - my pregnant self had to wait outside the door, listening to Avery cry.  She was so miserable and it broke my heart.  This, and the fact that both the x-ray tech and the CT tech asked me, "when was her last shunt revision?" as if I'm a pro at these.  And the sad thing is, they are used to asking shunt patients this question because multiple shunt revisions on one child are so common.  The aforementioned "club" I was dreading.

Then, followed the worst test ever.  It's one we've experienced three previous times, but it's always awful to watch.  They have to draw fluid off the valve (to test the pressure, and to get rid of some of the fluid and provide relief) and they do so by inserting a needle right into her head with tubing and a syringe attached.  The first time she had this procedure, it was a spinal tap when she was a newborn, being diagnosed with meningitis.  I wasn't in a good place at that time and couldn't watch, so I left John to do it alone, which is something I've always regretted.  The first time I witnessed this test was a little over a year ago, before her shunt was placed and she was just as sick as she was yesterday.  It's quite upsetting, but we know it's the only option.  This is when you have to put your big girl pants on, hold your daughter's hand and calmly talk her through it.  What upset me just as much as seeing my child screaming on that table, was knowing my own mom was sitting right behind me, watching this for the first time.  My mom is aware of all Avery goes through and there for us all the way, but normally doesn't see the really bad stuff firsthand.  And I know she worries about me, so I was sad that she had to see that.

They were not successful in drawing any fluid off her valve, which meant it was not functioning.  So, they called her neurosurgeon and boarded Avery for surgery in the next hour, at 6:30pm.  They are an amazing team there, and they always make us feel very confident in them taking care of her, despite how quickly the decision had to be made.  They know of our past experience with Avery's first brain surgeon and her horrible infection, so they do what they can to reassure us, but they still have to say, "with any surgery, there's a chance for infection."  The PA told us we have every right to be scared.  This is brain surgery.  Although we've gone through it many times, it's still hard to wrap your head (no pun intended) around the fact that your baby will have their brain operated on, and be safely handed back to you afterward.  This one was the most rushed too, so we had to make sure we explained her most recent eye precautions to the rest of the OR team checking us in.  The surgery was very quick.  Just as he suspected, scar tissue had formed around the tubing that drains fluid from her ventricles, so he removed it and replaced it with new tubing.  This is the sucky part.  Every time this is done, your body treats the new part as a new foreign object, and basically wants to attack it.  Great for a cut or common cold, but bad for shunts.  Then the thing clogs again, and you're back getting another shunt revision, and so on, and so on....
He did explain to us that there's another possible option if this keeps happening.  It's a different kind of shunt, and the risk of failure is much lower.  The problem is, she has to be a little bit older (closer to 4), and they have to do some tests to see if she would be a candidate.  And even then, it still is not guaranteed to work.  Nothing is, I suppose.  But it's an option, and we'll cross that bridge when we get there.  We went up to her room (private, thanks to being a squeaky...annoying...begging wheel), and waited for our little trooper to come out.  Remarkably, considering the pain associated with this surgery, she had a pretty great night, only getting up a couple times.  I think she was more annoyed with the IV, bandages and wires all over her.  I always dread staying overnight at the hospital, and even though John insisted I go home and sleep while he stayed with her, I couldn't leave my baby.  She is now old enough for a 'big girl hospital bed,' so I was able to sleep right in the bed with her.  Although the constant interruptions from nurses and beeping of her monitors sucks, I have to admit it was one of the easier times I've had staying.

By 3 am, she was trying to talk and get up.  She slowly but surely came "back to Avery," a sleepier version of Avery, but nothing like the day before.  There is nothing that makes us happier than seeing this transformation.  (See pics below - she also was fascinated by the little red light on the pulse monitor attached to her toe, and kept looking at it, saying, "off," as in "turn off the light").  They needed to monitor her numbers for awhile today, but she was good to be discharged by 3:30pm.  When neurosurgery went over the instructions for her incision, it was the most upset I felt for two days.  The memory of what we went through with her first surgery's infection will stay with me forever, and I'm so scared of it happening again.  It's hard to believe they let you take home this raw, brand new head incision, and wash it and lay it on stuff that's not sterile, and it freaks me out to no end.  But, they assured us it was okay and reminded us of what to watch out for.  The incision is bigger than we expected, and they took off more hair than they expected, but it is what it is.

So, we're back at home and trying to recover.  I have to admit, this all would probably be easier if I weren't pregnant, but I am!  A thought kept popping into my head (rather, it kicked me in the tummy) over the last two days: "you have a second one coming." You will soon be doing all of this with two.  Again, cross that bridge later...I just hope and pray that we are not back for her brain anytime soon... And hey, now we can cross this surgery off our list from June and maybe have an easier summer.  Hopefully.

"Make your mess your message"

It is always easier to have perspective when things are going well, at least for me.  I wish I could keep my perspective 24/7, but it does slip away when the bad news piles on.  I think it would for any parent.  We had a positive report at Avery's surgery this week, and during our time in the hospital Thursday, I experienced ups and downs as far as my perspective.

When we arrived, I was sitting next to a mother in the waiting room who was accompanied by a social worker.  Through some "casual eavesdropping," we figured out that her daughter was in for surgery, and she and the father were arguing over who was taking her home.  It got so bad at one point, that the police were called into the recovery area of the OR.  I thought how lucky I am to be in a healthy, loving marriage instead of that situation.  If John and I didn't work as a team and support each other during all of this, how much worse would life be?

Every time we take Avery down to Children's, I can't help but look around at all the other patients and their parents.  Seeing a sick child who is obviously going through chemotherapy is enough to make you forget all of your own troubles.  This sure gives me my perspective back.  For as much as Avery has gone through, nothing compares to a terminal illness and the fear of losing your child... or to actually lose your child.  Nothing.  That is the most awful human experience, and every trial and tribulation I go through should pale in comparison.  We only saw a glimpse of this once, when Avery had meningitis, and I never want that feeling again.  Yesterday, I thought about how I look, jealously, at the families in pre-op who are there for pretty simple procedures, such as ear tubes.  This is a very common surgery for kids, and in most cases you can tell this is their first surgery.  And probably their last.  They look terrified as the anesthesia doctor explains how they will put their child to sleep, and they fumble as they try to put the hospital gown on their child for the first time.  They have an entourage of 10 family members outside (because this isn't routine for them), waiting to give the child balloons, flowers and new toys.  I always think, "I wish that was my situation."  But, I remind myself (or John reminds me) that for them, this is the worst, scary thing they've gone through.  And, more importantly, we are an "ear tube surgery" for those families dealing with cancer.  I bet there have been times when a mom has looked at me and thought, "I wish that was my situation," as I deal with eye surgery and she deals with chemotherapy or a bone marrow transplant.  It is never easy to see your child go through pain, but there are varying degrees of that pain.  For the lucky ones, the worst is comforting a sad child who didn't make the soccer team.  For others, it's hearing that they've been diagnosed with a serious illness.

I tried to take this perspective with me as we were called back into pre-op, but my mind started going to the bad place as Avery's mood went from content to super cranky.  I have found that her mood directly impacts mine, and seeing her cry from being hungry and aggravated was too much for me at that moment.  Normally, she does so well with surgery days.  Her doctor isn't able to do surgery before 1pm, so she has to fast all day, but never gets too upset.  Sure, she hates having her blood pressure taken, and doesn't like the doctor listening to her heart, but we've always been happy that the crying is at a minimum.  Yesterday, though, she was really upset, and it broke my heart.  I usually carry her into the OR, but since I've had a bad cold, John went this time.  I stayed back and cried a little, worried about what the doctor would find with the right transplant, and if her pressures would be elevated.

Shortly after she went back, a nurse came out and told us that we had to sign another consent form because Dr. Dunn needed to do a (surprise) schleral patch graft, due to an "opening" in her right eye.  Huh?  This was definitely out of left field, and the nurse had little information, so we signed the paper because we trust him.  I just stared into space, pissed off, and waited for the surgery to finish.  It took almost two hours, which was extremely unnerving.  He came out and explained what happened.  It was much less serious than that nurse made it to be.  To make a long story short, a glaucoma tube she has had in her left eye for years was poking through the surface of her eye and he had to put a graft over it.  Not ideal, but certainly fixable.  He also decided to do the lid closure on the right himself (without the plastic surgeon).  Both of her pressures were good, which is fantastic, and the rough, dry patch from last week even looked better.  He said it left behind a slight haze, which may or may not go away, but it's not going to fail the graft at this point.  Her Ophthalmologist also was there, and everything looked healthy from his end too.  Overall, this is a great report.  Although she had procedures done in both eyes, the big picture is positive.
When we got her in recovery, both of her eyes were bleeding pretty bad, which isn't something we've seen very often.  It's normal, though.  Within a few hours, she was home and back to Avery - happy to eat a PB&J.  It was nice to call our parents with good news - mainly her good pressures and the surface healing on the right transplant.

This morning, right after I fought Avery to get drops in her swollen, sore eyes, I saw a story on the news that really touched me.  It was about a mother whose (while she was pregnant with her second baby) 2-year-old daughter was diagnosed with leukemia.  She was so shocked at the news that she went into pre-term labor.  However, she dedicated herself to healing her daughter, and saw her through a bone marrow transplant last year.  This is the type of situation that makes me very grateful for what I have.  I took away the best line from that mom; "make your mess your message."

That's it for now.  I didn't intend on writing an entry every week, it's just worked out that way lately!  As always, thank you for the love and support!!

It's always something

The last thing I feel like doing right now is writing a blog entry, but I promised myself that I'd write things when they are fresh in my mind so I can look back on this years from now and know how I really felt.  If I was telling someone this stuff in person, I'd probably sugar-coat the situation so they wouldn't think I was being negative mommy, or too pessimistic about it.  I've learned that some people don't want to hear how I really feel about this stuff...maybe because they don't know how to respond.  Or maybe it's me, and I don't want to seem too negative.  But that's what this blog is for.  To be real!

I just shared that Avery has to have a shunt revision, and we scheduled that for June 12th.  I am still dealing with all that comes with that surgery - shaving her beautiful blonde hair, recovery, her missing the last day of pre-school, and how it could potentially open a can of worms for new issues.  So, to add insult to injury, last night, John had noticed a discolored patch on her right cornea transplant, and I was so scared to look.  Maybe if I don't look, it won't exist.  So this morning, we had our weekly appointment with her cornea doctor and her 3-year well visit at the pediatrician.  I brought it up to Dr. Dunn, and unfortunately, it does exist.  It is a dry, rough patch right in the middle of her newest transplant.  We've had these on previous transplants, and in the past, this has led to scarring of the graft and inevitably, failure.  These patches form because Avery doesn't close her eyes all the way when she sleeps, and she rarely blinks.  To combat this, he puts in those tarsorophies (partially sewing her eye lids closed), and at home, we have to pay attention to them opening up.  Which they always do... So then we have to put in gobs of ointment to keep the surface of her eye moist.  Apparently this wasn't enough and within a week, this dry patch formed.

I know this doctor very well by now.  We've known him for three years and he sees Avery every week.  So I know when he's really concerned and disappointed.  I've seen this on his face too many times - disappointment.  He told me that he wants to get an Ocular Plastic Surgeon to more permanently fuse her eye lids together, and soon.  It's my understanding she'd still have a small opening to see out of, but this is another awful procedure that puts a giant pit in my stomach.  Having someone fuse my child's lids shut, when they've already been sewn closed so many times makes me worry how beat up her lids will be after all of this.  And will it even work?  If this dry patch persists, that graft will fail.  And then what?  We start to talk about final options, or worse, give up?  We are getting closer and closer to the end of the road each time something bad happens to her eyes.

So, like always, this new development causes scheduling problems.  She's currently scheduled to have an EUA on March 23 with both Dr. Dunn and her main ophthalmologist, Dr. Roarty (getting these two in the same OR at the same time is not an easy task, so we were looking forward to this).  If her pressure is still up (glaucoma), Dr. Roarty would be best to advise us on what to do.  As of this morning, Dr. Dunn wants to see her under anesthesia sooner, because he's also worried she may have some stitches loose in her transplant.  So, we are going under next week, and probably not with Dr. Roarty joining him.  And when the hell are we supposed to do the plastic surgery with this new guy?  It's not like we've never faced multiple surgeries in one month, but that doesn't make it easier.  As I leave the office, it feels like an elephant is on my shoulders.  There is so much to think about and process, and get in order.  I call John first and cry.  "I can't do this anymore."  I then drove across town to her pediatrician visit.  I caught myself glaring at another mom across the waiting room.  She had two little boys with her, and I assumed that they are totally healthy and only there for silly shots.  "Does she realize how lucky she is???"  Ok, she's probably a nice mom, so stop that, Ann.  We are called back and find out Avery doesn't need shots today (yea!), and that she's finally on the curve for weight (3rd percentile)... but still not even on the curve for height.  But she "appears to be well-fed," so no worries.  I can't really worry about how petite Avery is right now.

It's one of those days when I feel afraid of my own life.  This is the first day in awhile when I'm pretty hopeless.  How can I keep going on hope alone, when barriers like this keep coming up and making success with anything seem out of reach?  I'm so sad for Avery and the challenges she's up against.  How real it is that she may not have vision someday, and she may endure surgery after surgery for her whole life.  There.is.no.end.in.sight.  Like I've explained before, this isn't the type of situation (with her eyes or her brain) when surgery "fixes" the problem for long.  There is always something that could easily go wrong and ruin everything that we've worked so hard for.  And I can't help but feel like we dropped the ball, didn't do enough, didn't take good enough care of her.  

It's hard to feel part of the spinning world as a parent of a child with medical problems or special needs, so I'm very lonely.  Very few people "get" me, so I confide in very few people.  These days, it's my fellow Peter's Anomaly moms (or my therapist...).  This is my choice, so not asking anyone to feel bad for me.  It just makes sense for me and is easier to talk to someone who has been in my shoes.  Even if I've never met them in person.  I feel so awful after hearing bad news, and I can't expect anyone to stop their lives and get that.  I'm very grateful to have met good friends who have kids with Peter's.  I don't know how I'd get through this without them.

I apologize for the downer entry, but this is the point of a blog, not to sugar-coat, so I'm laying it out there.  Thank you for your support... I got such a moving response from people after my first two entries, and I really appreciate that.