Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, May 31, 2013

The Value of a Dime

Last week started out pretty typical.  End of school stuff for my older girls.  Therapies and happy mornings for Meagan.  And the day to day household chores and "to do" list that never seems to end.  Monday night I noticed Meagan seemed a little fussy, but, she is also getting some teeth so I chalked it up to that lovely stage of infancy...gave her some Motrin...called it a night.  But Meagan had different plans.

She didn't sleep that well that night.  And when I picked her up to hold her, her hands felt burning hot to me. Ugh. I knew what that meant - fever, and usually a high one.  With Meagan, her head is always hot (perhaps a clue of her personality?) ;)  But her hands are always cool.  When her hands get hot, I know she has fever. It's just one of those things I've learned along the way as one of her "tells."  I took, her temperature, and sure enough - pushing 102. I figured considering her mood the night before and the new fever, I should get her checked in the morning.

Something was off in my baby girl

I called the Pediatrician in the morning and they worked her in quickly.  We got to the office and she was increasingly miserable.  My happy girl had awoken screaming and crying...and had. not. stopped. all. morning.  She screamed and cried through our car ride....through our wait at the office....through the whole appointment.  I thought for sure it was ears.  Everytime Meagan has had fever and been miserable, it's been ears.  But nope! Her ears were fine.  Matter of fact, her Pediatrician said they looked better than ever.  Well darn.  Bit by bit, we checked all the "common" illnesses off the list - ears, strep, congestion, sinus, head cold, flu, etc..etc.  We were left with nothing but a screaming baby, a fever that was even stubborn to Motrin and no clue what was wrong.

The Pediatrician decided to go ahead and do a CBC in the office to see if anything showed up in her blood to give more of a clue as to what was going on.  Results came back - her white count was off. the. charts. high.  Dr. B suggested we take her in to Children's since she had fever, an extremely high white count, and to that point had been comletely inconsolable. I agreed because this was not my Meagan.  Not even last year when she had been so sick with a virus had she acted this way.  So off to Children's we went.

Meagan got checked into the ER and triaged by the nurse. We didn't even have to wait.  She immediately put Meagan in a room, and from there we immediately to an ER room and got settled.    And Meagan at this point? Yes. Still screaming. Inconsolable.  The doctors and nurses came in to see her - did the usual stuff to double check Dr. B's findings - and they came up with the same results.  Nothing "common" checking out, extremely high white count (which at this point had risen even further), stubborn fever, and now her CRP (c-reactive protein) was also high.  And... she was still screaming (and now it was about 6 in the evening).


Since all typical problems came back ok but the rising fever, blood counts and crp were suggesting definite infection, her CSF had to be tested.  They decided to test it through a lumbar puncture so they could culture it out over several days and see if anything showed up.  The ER doctor commented how surprised he was at my calm demeanor.  He said he has dealt with so many parents freaking out.  I can totally understand that - when it comes to our babies, we all "freak out" in our own way... and maybe I was on the inside - but it's just not me to be that way outwardly.  Meagan would have to be sedated for her lumbar puncture because she was so miserable - I was actually fine with that because I knew it would be better for her, and also would give her a moment's rest in a day full of crying and screaming.  She would have to be taken to another room to have the procedure done because of the sedation. I asked the doctor if I could go with her - he seemed rather taken aback by my question, but  I'm guessing he read my face pretty easily... which obviously said "I'm going with my daughter everywhere so just get used to it."  Ha... I may not be a freak out parent, but, I'm positive my body language and facial expressions are always clear that Meagan and I aren't to be seperated. So off we all went to sedation.

Once all the testing was done, of course, they decided to admit her.  Honestly, I was ok with that.  Typically I would fight admission for what I truly felt was a viral issue - but this time, I just knew it wasn't.  And Meagan was telling me that.  Except for the 20 minutes she was medically sedated, her behavior STILL had not calmed down.  She was still screaming, crying and just miserable. They even tried to give her some Versed to take the edge off.  Now Versed for those who don't know is a drug they often give just before surgery.  It makes you feel immediately loopy, happy and basically really drugged.  Meagan has had it before her surgeries - and even when she has been upset, within seconds, we see a happily sedated Meagan in a much calmer state and doing much better.  Well this time, that did not happen.  She was still screaming and miserable even after the Versed.  I was honestly shocked because historically, this is a medicine that really does calm her quickly.  They decided to try a bit more and push the dosage - and still NO relief.  At this point she was rolling and flailing her head into the sides of the crib, hitting her head, and was just a huge mess.  I had to physically hold her in the middle of the crib until she finally passed out around 2am to prevent her from hurting herself.  It was quite the night.

Finally passed out under 4 blankets

They had started treating her empirically for infection when we were still down in the ER.  They knew there was infection but just couldn't find the source.  There was the possibility of shunt, there was possibility of g-tube (which looked pretty bad actually) and there was the possibility she had picked up something in her 4 hospital stays and 2 surgeries she'd gone through in the previous month.  When Meagan awoke the second morning, she was still miserable - but - her fever had broken.  24 hours after IV antibiotics, I saw the first "glimpse" of "normal" Meagan.  At least without the fever, she wasn't as hot anymore.  The doctors still saw nothing growing in the cultures (which frankly, I was glad about because who wants a blood or spinal fluid infection??!!) but it still was annoying we had no "clear" answer.  They decided to recheck her white counts - they were still high so they decided to keep the IV antibiotics going through the day.  By the end of the second day, Meagan seemed calmer.  She was obviously miserable and tired but she was FINALLY not screaming all the time.  I knew the meds had kicked in and luckily had stopped whatever infection was starting.  Upon the next blood check late that night, her whites had started to fall...a great sign attacking with antibiotics was a good course of action.

Awake - not totally better but at least not crying

Day 3 Meagan woke up much happier.  Matter of fact, she woke up, looked around and said "Dada. Dada."  This is how she typically wakes up... so I knew we'd finally turned the corner.  We saw Meagan's NSG, her GI and the general Peds who were on call at that time.  All concluded she had picked up some sort of post surgical staph infection, but, because I was so on top of bringing her in, they feel they kicked the infection before it spread into her blood or csf.  They said because she was doing so much better, and her white count had dropped again, along with her crp finally coming down, she could go home.  But she would be sent home on a 14 day heavy antibiotic to make sure we knocked off whatever was left of the infection.  I was fine with that!

Finally calm and getting discharged

So needless to say, once we got home, I kinda of chuckled.  I had just posted about Meagan doing so well and how she wakes up so happy.  And then bam, we were back in the hospital.  Just goes to show you how things can change on a dime.  One minute I was enjoying my smiling little girl, and the next, she was screaming and hot in my arms.  A dime can't get you much these days.  Not even a stick of gum! But I must say, after experiencing how quickly things can change, I see the value of that dime much better now.  Things can change in an instant with these kids - and sometimes people (especially those not dealing with this stuff) forget that.  As quickly as things can go bad, though, these kids return to good. And so quickly.  They are rockstars. So that's what we are focusing on.  Those happy smiles.  Thanking God we caught infection early.  And having a whole new view on the value of a dime....let's keep it on the good side for a while!

Recovering at home

Monday, May 20, 2013

Even on my worst day .....

I am not a morning person.  Anyone who knows me.. knows this.  I am a night owl. I love to stay up late. Read. Write. Clean.Until the wee hours of the morning.  But by default, I "have" to also be an early morning person.  With kids, one doesn't get a choice.  Even if I'm a night owl at heart, I am forced to get up in the mornings.  I don't like it and often I'm half asleep and grumpy.  Then there's Meagan.

She has been through so much, and yet each morning, the first thing she does is smile. Or laugh. Or look  in wonder at the world around her.

So I was thinking....even on my worst days, I should try to be more like Meagan.  Just wake up. Smile. And take the God given gift of a new day to try again and do better.

Tuesday, May 14, 2013

Life is Good

I just realized it has been a little while since I posted an update on Meagan.  That's truly how busy we have been!! The household never stops - it's our way of life.  But I'm happy to say that the latest busy times have been all for good reasons. We have had recovery times at home with Meagan, First Holy Communion of our oldest daughter, expected and surprise family visits, the school year winding down, our third daughter graduating preschool, and Irish dancing craziness with competitions and classes.  Meagan is a trooper through it all - she just tags along to whatever we do and so far seems to enjoy it.   I hope this means things are on the upswing for Meagan and for us as a family.

End of soccer!

Irish Dancing winners!

First Holy Communion for Reilly!

Preschool Graduation for Anna!

Meagan hanging out at the graduation party

Enjoying a visit from Nanny

Ever since Meagan's Chiari surgery she has been a new little girl, as I posted before.  But we have seen this again following her g-tube surgery.  I know now her little body was definitely needing some more nutrition - within 5 days of getting her tube placed, Meagan gained a whole pound. A POUND.  That is crazy.  She had barely gained a few ounces in over a year.  What was more amazing than the number on the scale is the immediate strength and "fulfillment" I have seen in Meagan since then.  She just seems better all around.  Happier.  More content. Stronger. Chunkier :)  It's amazing what a little nutrition can do.  I'm so glad we decided to put the tube in -  I have seen the amazing changes in her body and attitude from the added calories and nutrients.... a part of the puzzle I think we often overlook when worrying about our child's development.

Enjoying a "spa" treatment from her big sisters

Meagan got back to her therapies just a few weeks ago.  We waited a bit because of all the surgeries and hospital stays - and because of her PEG tube.  While doing well with it, it was extremely tender for a few weeks after, so it made most of her work at PT basically useless since all of it seemed to hurt her belly.  I was in no rush to push her back into therapies because my first goal was for her to feel well and get better.  Once I started seeing her personality coming back and all the good changes, I knew it was ok to get back to her PT and OT.

Her first few sessions back, she was of course miserable.  She wasn't used to working for an hour anymore, and also was just tired from being out of her routine.  We figured it was going to be a gradual road getting back to where she was pre-surgery and we were fine with that.  We work on "Meagan time" not on any other schedule when it comes to her therapies and development, so we just sat back and let her take her own path.  Well apparently, Meagan had other ideas about her "timeline."  Literally in the last few days, she has started to try and sit up.  Yep. It's been that sudden.

 Typically, Brian and I try to have some down time when the kids are asleep and watch tv or something similar while finishing up some laundry or other chores.  Meagan will lay in her nap nanny and start her bedtime routine and I will hook up her feed and get it going.  She will generally play with her tube line or even chew on it (silly girl) and then tries to flip every which way in her nap nanny, but will finally drift off to sleep.

Typical Meagan when falling asleep.......

Out of nowhere the other night, I turned to look at her and she was sitting forward in her nap nanny playing with her toes.  I had to rub my eyes to check again and yep! There she was. Just pulling herself upwards like it was 'old hat' or something.  I could not believe it! Since that time a few days ago, if propped up in a sitting position on her blanket, Meagan can hold a one-minute sit on her own before she topples over! I think for sure this summer, we are going to have an independent sitter on our hands which is really exciting. But first we have to get her using her arms and hands.  She still REFUSES to put much weight through her arms for the most part.  So while it is exciting seeing her try and sit, we have a lot of work to do with her arms.  We have to also be careful to balance out her desire to pull up with more tummy time or back exercise.  Her little tummy is getting very strong, but, her back is weak which is making her lower back start to curve.  So we will definitely have to find a balance of strength there while continuing to encourage her to do the things she wants to do.  I think as soon as she realizes she can use her arms to help her sit up, or to stay sitting once in a seated position, she will be do it without hesitation.

Ummmm.. ok!

Cognitively, she is a complete ham.  Meagan has always had a "funny" side to her, but it has exploded especially in the last week.  She is copying everything her sisters or I do.  She always loved observing people, but, now she literally tries to mimic everything she sees. It's hilarious to watch because sometimes the signals into the brain don't always match what comes out in her action.  At times you can almost see herself looking at her hands or arms like "Why did you do that? I didn't tell you to do that!"  It's something I am always amazed by.  Watching the process.  Something I missed with my older kids.  Not because I didn't pay attention, but, simply because they just "do" the next thing they are supposed to do.  With Meagan it has been quite interesting to actually see the process unfold for each of her movements or gestures.  You can literally see the messaging going into her head - her thinking about it - and then an action resulting from that thought.  It is amazing.

Meagan's newest "tricks":

"No no no!"

"oh my" (and she also fell asleep like this)

"Where's your ear Meagan?"


She did have a little bit of leakage coming from her tube site this last week.  The typical "ooze" was ok - but we actually started having blood...and then more blood.  Luckily she had her GI follow up yesterday.  Dr. B said that he would just go ahead and cauterize the skin right there in the office to take care of the bleeding so it didn't lead to any worsening problems or infection.  It took about 2 seconds to do and the skin is all better now. No more oozing or bleeding and her site looks great.  He was very happy with her weight gain and her recent developments, so now we just keep on what we are doing and she will get her MicKey button put in around the second week in August.

 This is Meagan with her sweet cousin who is always looking out for her. They are so funny to watch together!

Overall we have had a calm and happy few weeks with Meagan and all our girls.  We are so thankful for a few great weeks in a row (what's that??) considering how awful the last few months has been.  Of course we will always have hits coming.  Medical bills are starting to trickle in from the last few months ....and our lovely air conditioner that has now decided to quit before summer (I mean, really!?) ... but who ever really gets out of the fight? That's life.   With all the good happening right now, it is my choice to ignore all the stress and focus on the fun things that are going on.  Life is a process...just like Meagan's learning is a process.  It's an amazing thing to watch and the moment we forget that is the moment we forget to live.  Can't wait to see what's in store these next few months for our whole family.  One thing is for sure - we will certainly be doing a lot of living...and loving every second of it!

 Totally wiped!

Best Mother's Day with my girls!