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

 

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.

http://www.youtube.com/watch?v=6dZpDB_GTBg&list=HL1369057341&feature=mh_lolz

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.

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":

"ahhhhh"

"No no no!"

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

"Where's your ear Meagan?"

"Shhhhh"

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!

Oh G

Today Meagan got her g-tube! It might seem crazy to be excited about something like a feeding tube - but I really am.  As our GI doctor said - sometimes feeding tubes have such a negative connotnation, like it's a defeat or a disappointment.  Actually I have learned it's quite the opposite.

I'm not going to lie.  It was a little bittersweet - not because I thought it was ever the wrong decision - simply because it would be a change to how little Meagan looked.  It was changing that cute belly I have snuggled for so many months.  I knew what I was feeling was normal - even when we do what needs to be done, sometimes it can make us feel a little twinge of emotion over what may seem like silly things to others - but actually have a lot of meaning to the parents in that particular situation.  I took a few "last pictures" of Meagan's bare little tummy and then got the kids settled with my sister in law who was nice enough to fly in and help (Thanks Aunt C!).  Then off to Children's we went!

Playing while waiting

Not so happy anymore - needed Daddy snuggles!

We  checked in and got Meagan all prepped for surgery.  Dr. B (the GI doctor) and Dr. P (a general pediatric surgeon) came to get Meagan and off they went.  It was about an hour total time, but only 20 minutes of that was the time needed to actually place her tube! Not that any surgery is "easy"... but compared to what Meagan has been through, a short tube placement sounded like heaven compared to a 5 or 7 hour brain surgery.

A few last bare belly pics

We saw Meagan up in her recovery room where we will stay for the next few days. The nurses showed me Meagan's stomach   It is definitely changed as the tube is now there, but it's just as cute.  They talked to us about the supplies we would need at home, caring for the PEG (what her g-tube is called), and also different circumstances that could arise and what to watch out for.  Before I could even ask, the medical supply company was on the phone with me and said they would actually send someone out tonight to drop off all Meagan's supplies, complete the paperwork, and go through the training of how to use all the different equipment and pump.

Meagan is such a joyful child.  She actually loves food.  Anyone who knows her sees her reach for food, and willingly try almost anything you give her.  However, they also see her chew on the one piece for the entire meal.  Or chew on it for several minutes and then take it out of her mouth.  Meagan is so innately happy and has such an interest and love for food, I am so relieved we have her g-tube now so she can simply eat for what it is to her - joy.  If Meagan wants to eat part of a pizza crust for an entire dinnertime now, there's no stress. We just put her calories through her tube.  If Meagan eats great one day but is short the calories she needs to keep growing stronger..it's no stress.  Just feed her through the tube. If Meagan still doesn't drink out of a cup for hydration - no big deal.  We hydrate her through her g-tube.

One other aspect that is going to be great is giving meds.  Meagan has always been a trooper with her meds, but it is very apparent she doesn't "like" to take them.  Many times I'm using all kinds of tactics with the syringes to make sure she gets the full doses by mouth each day and night.  Now with her tube, we can take all that negativity away from her mouth.  Tonight the nurse helped us give Meagan her meds for the first time through her tube.  It was so easy and we didn't have to upset her at all from her rest.

Didn't even have to wake her for her seizure meds

Meagan will have her PEG for three months.  After that we will come back to get a MicKey button which is a much smaller little cap she can keep easier for long term.  When we go home, she will start on pumped continuous feeds to hopefully minimize any reflux or vomiting that could occur as her stomach heals and gets used to the tube feeds.  If she tolerates those ok, then we will move towards bolus feeds (where we feed her whatever she didn't eat orally through her tube).

Overall today was a great day and another positive step for Meagan.  I'm looking forward to seeing how strong she gets now that we have this "safety net" for her eating.  I know it's early, but I know this g-tube is going to be such a blessing for her.   Thank you to all the helpful "tubie" families who guided us through this process and gave us all the perspective we needed to know this was the right thing for Meagan.

20/20

We are almost two weeks post op for miss Meagan.  So far, except for a few little bumps in the road, everything seems to be going well.  Pain management has been a huge part of our time over the last 13 days. As you can imagine, the incision down the back of Meagan's head into her shoulder area was not only extremely tender, but also very painful whenever she tried to move.  For a long while, she wouldn't even move her head to the side to look around.  If she heard my voice in a room, I would just see the slightest movement from her little eyes looking toward my direction - but ask her to move that neck, oh, no way!  I don't blame her... she handles everything so much more gracefully than I would!

Early in her recovery, Meagan started to spike fevers .  I also noticed her incision go from pink to an angry red.  I sought the opinions of my expert Hydro parents and we all agreed it didn't look right.  I didn't *think* it looked infected, but just "mad."  Mad is really the best word I can use to describe it.  I did have the Pediatrician take a peek at it and she agreed that it didn't look infected, but, it also didn't look very good.  She said in a few days if it didn't clear up to call Dr. R.  Sure enough a few days later it wasn't cleared up.  Matter of fact, it was worse and a few spots along her incision started to open up here and there letting blood escape.  On my gut feeling, the doctors' advice, and the hunch of my hydro friends, I decided a quick call in to Dr. R wouldn't hurt.  His nurse was very receptive and looked at an email of Meagan's head.  She said of course Dr. R wanted to see Meagan right away if we could make it down to Children's.  I agreed and luckily my sister in law was here to watch the kids for me so I could leave right away. (Thank you K!)

Dr. R was in his lunch hour, but, he stayed behind to see Meagan.  (which I thought was very nice because we would have gladly waited until after lunch knowing he was squeezing her in).  He was puzzled by her incision because he said it didn't look *too* much like it was getting infected, however, he could not firmly say it wasn't on its way to infection.  Knowing how close that area is to her shunt, and knowing she had g-tube surgery coming up, he decided to go ahead and treat her empirically for infection with a hefty two week dose of Keflex.  I was in agreement because especially with infection, and especially with Meagan, I'm always of a "better safe than sorry" mindset.  He told us to come back in two weeks and let him know if it got worse at all or if anything else came up in the mean time.

Two surgeries in two weeks? Who does that mom!

We started Meagan on the Keflex that Wednesday.  For several days the incision looked the same or even worse.  Then by about Friday night I noticed it started to look better.  More dark pink instead of angry red and less oozing.  I was relieved things seemed to be on the upswing.  But then Sunday, as the day went on, I noticed her incision looking quite red again.  What caught my attention this time was the redness spreading.  It didn't just "hug" the incision as it had done in the past....this time it was moving.  But only to the right side.  That made me uneasy because on that right side is Meagan's shunt valve.  And directly on top of that valve is where the redness was spreading.  Not to the left at all.  It really made me uncomfortable how the redness returned and how it seemed focal on her shunt side, but, she was also still extremely happy and playful, so I didn't see a need to panic.  I talked it over with Brian and a few close friends and decided a call in to Dr. R today might be a good idea just to let him know what's going on.  Again, I really don't think it's infection, but, with redness returning and focusing so strongly on that right side, it can't hurt to have him look at it again.  The last thing we want are any complications with recovery - but most especially a shunt infection.  Those are nasty, dangerous, and take quite a long time to rid from the body.  We have her g-tube surgery coming up this Friday, so we want to make sure everything is going as smoothly as possible beforehand, so we will see what Dr. R says today.

Redness spreading out from incision and creeping up towards Meagan's valve

It took about 5 or so days for Meagan to return to her playful self.  She still would not move her upper body or neck, but, her smile, laugh and overall silly attitude returned and it was a great sign of recovery.  Since then, I would say between about day 10-11 of recovery, Meagan suddenly has started to move her neck again.  She will move it side to side to look around, she will attempt to pull her head forward and hold it up just like she did pre-surgery, and she will even roll to her side when laying on the floor with a toy.  I would say Meagan is just about back to herself as far as attitude and mood.  She is extremely happy and just has a zest for life I can't possibly transfer into written word.

It's kind of funny how hindsight works.  Many times, we talk with our friends and family about how we "should have, would have, or could have" done something better, differently, or in another way.  Hindsight is always 20/20.. and that's a good thing so we can learn and continue on with less mistakes.  But sometimes we get a nice surprise.  Sometimes looking back actually gives us comfort, and doesn't have any regrets.  Sometimes we get that 20/20 view of a tough decision we made that turned out to be the answer we needed.  

So content watching her sisters' Irish Dance show

That's how Brian and I feel about Meagan's recent Chiari surgery.  It was a tough decision - a very invasive surgery and everything that went along with it.  But to 'let' her exist with her pain episodes when we knew there was a chance this could help - it just made the decision that much easier.  Nonetheless, as parents we always want to do right by our kids.  It may not be the painless path, and it may not be an easy one, but we always want to do what's right by them...what is best for their life.  Weeks after such a surgery we were still holding on to that little "what if" questioning our decision to go ahead with helping relieve the Chiari.  Now at this point I can confidently say it was for sure the right choice.

Meagan has had no pain episodes since surgery. None. Yep, you read that right. ZERO incidents of throwing her head back in discomfort, crying in pain, and pounding her head with her fists.  She has also had a huge decrease in her apnea alarms.  She actually went with NO alarms for almost two weeks until two nights ago when she had four in a row.  She is also congested though, and I think that is affecting her a lot especially when sleeping.  So removing that from the situation, it means healthy Meagan has had ZERO alarms.

Such a happy girl!

Anyone who knows Meagan well and in person knows above all she is a happy little girl.  She is joyful and smiley and always loves people.  Pain episodes aside, if you had told me Meagan could be an even happier girl, I wouldn't have believed you.  But, she is.  Amazingly since surgery, Meagan's mood and emotional state are even brighter and more joyful than prior to surgery.  It's one of those situations where you didn't realize how bad she may have been feeling until we see the Meagan of today.  Now being afforded that comparison, she is undeniably more comfortable, more silly, laughing and smiling more, and has even picked up a few new tricks.  Her "copying" ability has suddenly gone through the roof in the last week.

Meagan attempting "peek - a - boo"

Got it!

Meagan's other new trick - crossing her arms.

Meagan's newest mimic as of last night - beeping her nose.

20/20 vision is not always available when making tough decisions about the future.  But hindsight being 20/20 is a good tool on which to gauge such decisions.  To look back even just 3-4 weeks ago and clearly see the huge positive change this surgery has suddenly brought to Meagan, we can certainly say with confidence it was needed.  We see with full and clear vision the new improved quality it has added to Meagan's life - and that is what truly matters.  We can't wait to see what other surprises she holds in store for us.

Chiari Decompression: Day 4 - HOME!

Meagan slept really well all night.  Once she awakened in the morning, she didn't immediately start whimpering like the previous day.  She even waved at me, and gave a "gritted teeth" smile. It was almost like she was saying "I don't really want to smile but I will so here ya go!"  It was the cutest thing! Her nurse came in and said since she had done well all night she would ask Dr R if Meagan could possibly go home by the evening.  I was completely fine with that because I noticed a change in Meagan - as long as she wasn't moved, she was content. Of course when moved, she cried out, but, as expected, that will happen for a few weeks.  As long as she had contentment when laying once positioned, I was happy to take her home and let her finish recovering there.

Dr. R called around 10am.  He was busy but wanted to call and make sure he was in touch with me because I had been down the hall getting coffee when he had quickly stopped by Meagan's room.  He said he was also happy with her. Fever was gone. Meagan was eating. She was sleeping back on her usual nap schedule.  And as long as we felt the oral pain medication gave her enough relief, he was fine weaning her off the IV that day and sending her on her way.  I was in agreement.  He apologized for missing me that morning and said he would stop by in the afternoon to make sure we touched base before leaving. Then we hung up.

As the day went on, the nurses were good about staying on top of Meagan's oral meds.  They made sure to stagger medications for her because even one little lapse meant she was uncomfortable.  Because of that Meagan was able to sleep a lot, and when she was awake, she was content giving me waves, blowing raspberries and for the first time in 4 days, making noises.

Ready to get home! Drinking more, off the fluids, and perking up!

I called Brian and told him to head our way from work.  He was excited to come and take Meagan home.  Towards the mid-afternoon, Dr. R ended up stopping in again.  He said hi to Meagan and got a wave back.  He told me he was still fine with letting her go home ... he said to call and make an appointment to come see him in two weeks so he could recheck her incision site and make sure all was ok.

Meagan's nurse came in after Dr. R left.  She said Meagan was due for her take home oral med right then, but also could have another valium in about an hour.  She said what she could do is give her med on schedule but then wait to officially give out discharge papers until after Meagan's next valium dose.  That way she'd be a little more comfortable being shuffled around, put in the stroller, put in the carseat, and be able to tolerate the bumpy ride home much better.  I was completely fine (and very appreciative) of that! So we waited around about an hour for Meagan to get her Valium.  Once it was administered, we gathered up her things.  With the nurses help, we carefully sat Meagan upright so we could work her shirt over her head.  My heart skipped as Meagan cringed in obvious pain, but then leapt for her after the shirt was on and she gave me her "gritty smile."  She is truly one strong and amazing girl!

We got her set up in her stroller and the nurses helped prop her head with pillow cases.  We said goodbye to all the wonderful staff and medical team who had helped us all week.  Meagan gave them one last "gritty smile" and we left!

Meagan decided we should have a movie night for her first night home

The ride home went pretty well. We got to the house and of course all the girls were so excited to see us.  Well, Meagan I should say. :)  The parade of little ones (my older kids and their little cousins who are here to help)  went right past me and straight to give Meagan the biggest hugs and kisses.....as it should be.   There was lots of  "Mom can I see her stitches " .... "Hey mom, she doesn't look any different!?" ... and of course the girls correcting each other with "Let me see her first!" .... "Be careful of her head!"

After I put the big girls to bed, Brian cooked an amazing dinner for our "welcome home."  We were able to hang out, talk, and visit with Brian's sister who is here to help.  The food was definitely needed.. I think my body is about sick of liquids! And the good company was so great after a crazy few weeks.

Brian's yummy homemade salmon dinner (he should have been a chef).....

....and a little celebratory dessert too!

While dinner was being cleaned up, I had to change Meagan's diaper.  As I lifted her legs to put the new diaper underneath, her eyes winced... but then she gave me a smile.  I laid her on her own blanket and put some toys around.  By the time I was back from throwing out the diaper, Meagan had completely passed out asleep. She was exhausted! Recovery will go smoothly I'm sure, and we will slowly work Meagan back up to what she was doing before.  Hopefully, we see her having much more comfort in what she does because of this surgery.  Best of all, though, is knowing she is home.  We feel this is the best place for her to continue to recover and start to thrive again.   It was great to see all my girls together again... and of course watch the big ones fawn over their baby sister.  She is truly the glue in this family ... the last piece of the puzzle God knew we needed to make our picture perfect.  And I'm pretty sure Meagan agrees.

Chiari Decompression: Day 3

Day 3 started off pretty rocky.  Around 1am when Meagan was due for one of her meds, the nurse came in to check on her and administer her next pain med.  She looked at her IV and thought it looked a little puffy.  I hadn't noticed but upon looking at Meagan's foot agreed.  The nurse said that sometimes on the little tiny ones the tape can cause puffiness so she would release some of it and see if Meagan's skin bounced back.  As soon as she started to undo some of the tape, we could see it was much worse than a little tape pressure.  Even though the IV was still functional, her foot was getting infiltrated by the fluids from the IV somehow and the nurse said before it got rock hard, we had to pull the IV.  I hated to pull a perfectly functional IV, as Meagan is a really hard stick, but, leaving it in wasn't an option because it was going bad fast.  The nurses took it out carefully and got some warm packs to put on her foot.  They also put some blanket rolls under her foot to keep it somewhat elevated.

Notice a difference? Um, yea

Luckily, the head nurse on that night was the same male nurse we knew from her previous stay for her MRI. He has been pretty good at getting successful IV's in Meagan so we called for him.  It took him about an hour to find a decent spot to try, but, once he did, he got a new IV in on the first try.  We got her all settled down again and she finally went back to sleep.  I was very glad the nurse was on top of things and noticed Meagan's foot before it turned into a really bad problem.

Meagan woke up pretty good that morning considering her crazy night.  She seemed more content and didn't immediately whimper upon waking.  We decided to go ahead and try to get her off of the IV medication and see how she handled oral pain killers.  The nurse didn't want to take her from morphine and Valium straight down to Tylenol - she felt it would be cruel to submit Meagan to that kind of pain so suddenly, and I agreed.  She said we would ask Dr. Reisner about stepping down to an oral pain medication that would be a good middle ground between IV meds and Tylenol to help ease her through the recovery.

Starting to keep an eye on everyone

We got a nice surprise visit from one of Meagan's little hydro buddies, James. And also another visit from her other hydro buddy, Jack. It was really nice of her friends to stop by and visit.  We also got a few more gifts in the mail and a sweet note from one of her hydro friends in California.  We really appreciate everyone's thoughts, prayers, cards and balloons/gifts for Meagan.  She surely feels very loved and we feel very lucky for all her sweet friends.

As the day went on I was feeling increasingly bad.  Not sick but just "off."  I had felt dizzy and short of breath for a few days but basically ignored it to concentrate on Meagan.  But yesterday it all seemed to culminate with me feeling very bad by the evening.  I asked Meagan's nurse to do a quick check on me being so close to post-op.  My immediate vitals looked ok but I still felt extremely uncomfortable.  I was dizzy, shaky, my hands were tingling.  I decided to go across the street to get checked out at the local hospital.  The nurses assured me Meagan was in good hands and I left.

Once at the ER the doctor talked to me about my symptoms.  He looked at my incision just in case there was any sign of infection but said it looked great.  He said being so close to surgery he wanted to do a chest x-ray to rule out a post op clot and some blood work.  I was fine with that.  Thankfully the x-ray came back normal.  My blood work however was all over.  My electrolytes were low, my sugars were off and overall my body was out of whack.  The doctor said with my recent surgery and then going from eating a really well balanced diet to strict liquids along with fatigue probably set my body into a tailspin and it finally hit me last night.  He told me to ditch the water and stick to Gatorade/powerade to keep my electrolytes up, try to eat more soft foods that may have more nutritional value, and also ordered two bags of fluids before I left as I was pretty dehydrated.  I felt much better after leaving and was rejuvenated to focus on Meagan and getting her home.

The nurses took such good care of Meagan for me

The nurses taking care of Meagan were absolutely wonderful.  I can't say enough good things about them.  I will certainly be writing a letter to Children's about the care they have shown her, but also the care they showed me when I wasn't feeling right.  Meagan's nurses arranged rides for me, called me every hour I was gone to give me updates on Meagan and check on me, and upon returning made an effort to make sure I always had a cold Gatorade/powerade in my room and was feeling ok.  They have been great this whole week but last night proved just how awesome they truly are.  I am very thankful to have such good care for Meagan and to also know that their genuine concern for patients has no boundaries.

Overall day 3 was definitely a step in the right direction.  Meagan started to tolerate some of the oral medications well.  She still seemed to be comfortable from her pain but was more alert.  She had more instances of opening her eyes.  She even started waving, to Dr Reisner of course. And as long as the nurses talk to her first, she even gave them a few waves. (though she still keeps a suspicious eye on them whenever they enter the room).   She started to take an ounce at a time from her bottles.  I think Meagan definitely has started to hit the curve - her alertness and willingness to show bits of her personality are great signs.

Starting to take a few ounces here and there

I'm hopeful that day 4 will bring more good news and positive strides from Meagan..  Yes, she still has a lot of pain if moved or re-positioned, but that is expected.  Our goal for her to be discharged is at least to be content once laying still and showing signs of appetite and being herself.  I think we made good progress with that on day 3.   If she keeps on the path of showing contentment, keeps taking her oral meds well, and continues her improvement, I'm even hopeful (dare I say) that we may be able to go home by Friday night. (shhh!)

Did I say personality?

Feeling so loved with her sweet cards and gifts