Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, May 18, 2012

A Kiss and a Curse

I want to preface this post by saying I'm of course very thankful for Meagan, for her being here, for God's gift of her life, and for all the surgeons, doctors, nurses, and technology that allows us to keep her here with us. I honestly wouldn't change a thing.  She is who she is meant to be and God has a reason for all He gives us.  But sometimes, as a Hydro parent, I just need a good honest vent.

These last 10 days have been rough for Meggy. It all started a week ago Tuesday when out of nowhere, she became lethargic and grumpy.  Within an hour, she had a 103 fever. I gave her Tylenol because she was obviously uncomfortable.  When it jumped to 103.8 two hours later, I started to panic a little bit.  She had NO other symptoms - no sniffly nose, not even a sneeze.  I called her Pediatrician and she said to bring her in.

Not herself

After a thorough check up and some blood work, our Pediatrician said we would have to go to Children's.  She said Meagan checked out fine everywhere as far as ears, nose, throat....and she gave her a Strep test "just in case" (because she's really "too young" to get Strep)...and even that was negative.  They did a quick CBC (blood count) and her white count came back high.  She said it would be best to go to Children's, where they could do more extensive blood work.  I agreed because with such a high fever, and her being out of it, and NO other symptoms, of course automatically one thinks "shunt." ... and the last thing we'd want is a shunt infection.

So we went off to Children's ... she was still "blah" (don't you love my technical terminology) and still feverish.  She was whimpering and obviously not herself.  They drew blood and sent it off to culture and also for another quick blood count to look deeper.  They wanted to see what the underlying cells were reading with her white count being high.  After a bit, the doctor came back in and said though her white count was elevated, the underlying factors were all normal.  They would watch the cultures, but as far as he was concerned, she could go home. The good news was no apparent shunt infection.. but the bad news was we had the "non-answer" answer.

Waiting at the Pediatrician

I took Meagan home.  She was miserable.  Her fever eventually went down to 101 and then kept popping up and down for the next 6 days.  She wouldn't smile... her eyes seemed sensitive to light and she became VERY fussy when I would change her position from laying down to sitting up, or vice versa.  She also was sensitive at times to me touching her head - something that has NEVER bothered her.  On Monday, when I was holding her one time, I leaned over to kiss her forehead and she screamed like I had pinched her.  With these happenings, fevers still going up and down and still NO other symptoms, I decided to call the Neurosurgeon.  He said to come in and we'd do a CT scan to make sure her ventricles still looked good and this wasn't a shunt functioning problem.   This had crossed my mind because of all her head sensitivity and her eyes being so squinty, so I was anxious to get to the appointment.

Tears in her sleep

Obviously in discomfort

Wednesday came quickly and we went down to Children's for Meagan's scan.  She did wonderfully through the scan, in large part because she didnt' feel well so she just laid there for the whole thing.  We walked across the street to Dr. R's (Neurosurgeon) office and waited to see him.  Once we got back to the room, Dr. R could clearly see something was off with Meagan.  Her eyes were glassy and wouldn't open fully.  She just looked like she was miserable, in pain, or not herself.  He looked at her scan and actually did a little jump and clapped.  He said as far as her ventricles and brain looked, he didn't think anything on the inside was causing her discomfort, at least visibly.  He said her ventricles looked good - the fluid levels had continued to decrease, and so the shunt was still working properly. He was sorry he didn't have more answers for us, but who does in Hydro honestly.  So we headed home. 

Of course, later that day, I heard Meagan cough a few times.  I didnt' think anything of it.. but then that evening she REALLY coughed.  When she woke up, I noticed she couldn't open her eyes because they were "glued" shut with green and yellow goop and she just looked like a mess.  The cough continued to worsen and I felt so badly she was so miserable! She still had fevers cropping up daily and was obviously still not feeling well.  I decided to take her in to the Pediatrician to just double check her lungs.  Her lungs checked out clear at the Pediatrician's office, so we went home.

It is pretty sad when your child finally develops a nasty cough and gross eyes... and you are actually happy about it.  But I'd honestly take almost anything else over a shunt infection or malfunction.  Both are serious issues and require brain surgery. Again.  So while I was upset at not having "THE" answer as to why she has been so uncomfortable, I am also happy it is not her shunt.  The best explanation I can come up with in hindsight based on all her symptoms, the fevers, and the eye/head sensitivity is either some sort of random headaches associated with a virus she's fighting, or some sort of lingering sinus infection, thereby making her head and light sensitive and cropping up fevers while her body fights it.

So head and light sensitive

These last 10 days have definitely brought me back to the reality of Meagan's situation.  Hearing of other Hydro children losing the battle and dealing with miserable Meagan with all the "what ifs" going through my head.....  Everything with Hydro, it seems, is a "non-answer" answer.  Everything is a guessing game.  And every time your child gets a sniffle, a cold, a fever, or just starts acting "off" or miserable, you never again blow it off as a virus or just an off day.  You never again are OK with "waiting things out."  Every time something happens, your mind immediately jumps to "Please let it not be her shunt."

 It may seem silly to some, but I know my fellow Hydro moms and dads know exactly what I'm talking about. There is literally 6 feet of plastic catheter tubing in Meagan... keeping her alive.  ALIVE.  This is often something I don't think about, nor focus on.  But with the events of the last few weeks, hearing of other children losing the fight, and having others, while well intentioned, telling me "at least the worst is over.....she had the surgery so she's fine..etc... all of these things have really made me remember just exactly what we are dealing with here.  So when Meagan gets sick and the danger of shunt infection crosses my mind... .or she starts acting off or doing poorly at therapy and the thought of a shunt malfunction crosses my mind... it is very real.  It's not "over-worrying".... and not being crazy overzealous parent. It is what it is when your child, very literally, relies on a small unreliable man made device to live everyday.

It's a very strange and unnatural relationship I have with Meagan's shunt.  I want to preface by saying I am not at all ungrateful...for without it she would not be here. I am thankful there is a way to keep her here with us but I feel the need to vent for the reality that it is or I wouldn't be being honest with myself.  It is definitely a strange existence.

 Each day, I curse that thing - the pain and discomfort it can cause her... the high failure rate.... the lack of a better treatment (yes, I said  treatment... Hydrocephalus is INCURABLE) .... I just want to tell it off sometimes, like during these last 10 days when Meagan has been miserable and shunt worries were high on the list.  Then, almost instantaneously, I do a complete 180 and kiss it.  Yes, kiss it. Literally lean over to the side of Meagan's head, and kiss that shunt valve.  For without it, I know she would have no shot at life... she wouldn't be here at all. 

Yep, that squigly thing along the side of Meagan's head behind her ear is where I kiss that shunt.

And so, here's hoping my Meagan is more herself this weekend and gets out of this 'funk' the best she can.  She will continue on...... this journey she so bravely endures.  And I will be right there... I'm sure there will be more days I have a kiss and a curse for that shunt.  But... because I love Meagan so much, and am so grateful for the gift of her being here, I will try to minimize my curses...... and give mostly kisses to the most awful and beautiful 6 feet of plastic I've ever encountered.

Miserable Eyes


  1. She does look so sad and miserable! I hope she feels better soon. Prayers for all of you!

  2. Aww poor baby, I will keep her in my prayers. I hope she starts feeling better. I can relate to exactly what you wrote my son has 2 shunts and im always worrying about them when I see him not feeling or acting himself. I really hate it but we have to be strong for them and keep our head held high.

    <3 Julianna

  3. I feel your pain on this one, and I wish I could tell you that it goes away as they get older and start talking, but I don't think it ever goes away!! That worry, every time they get sick... is it the shunt???! I once laughed out loud when Avery was given a diagnosis of pneumonia because I was SO RELIEVED!!! JUST pneumonia, thank Heavens!!!!!! I hope she is feeling better now, and I am SO glad that her shunt is fine :)

  4. For me, this is absolutely the worst part of the hydro for me. I can deal with delays, therapies, 8 million dr appointments, and all the other unique issues...but the worry over her every little discomfort is TOUGH. Ellie has enough language to let me know something is bothering her but not enough to tell me what. It has been a very rough year for us as she was sick so much and just generally irritable alot of the time. Sometimes I can get very discouraged just thinking that I will have to deal with this worry for the rest of my life.