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

Chiari Decompression: Day 2

Today has gone pretty well for Meagan after a rough start.  By pretty well I don't mean she is snuggling, or eating, or even really awake all that much - but she is comfortable...for the most part.  That is always my first  concern after she goes through a procedure, a surgery or a seizure  - comfort.  It seemed like it would be an impossible goal this morning because she was certainly a very unhappy little girl.

Last night Meagan's pain kept her up quite a bit.  We started to have some success, as I wrote about yesterday ... but as the night went on she became increasingly uncomfortable. She also spiked a fever so we had to add Tylenol.  She had hours of whimpering and crying and that heavy almost "walking on eggshells" breathing that happens when one is in pain.  Around 1:30am the nurses were finally able to get her on a good regimen of the valium/morphine rotation again and we had quiet in the room - she was sleeping!  I took advantage of the peace and also slept from 1:30 until about 5am but then awoke to her whimpering again. My poor sweet girl!  She wasn't screaming but just seemed extremely uncomfortable.  I knew coming into day 2 would be hard - it is always that second and third day of recovery that is almost worse than surgery day itself.  The nurses worked hard again to change up some of her meds and once again we had a comfortable, sleeping Meagan.

Boo for fever

Yay for sleep

My mom was able to stop by and visit as she left town.  It was nice to see her and to have her be able to give Meagan some snuggles before she left.  As soon as she leaned over the crib to talk to Meagan, Meagan's eyes turned towards her.  She definitely recognized my mom and slowly she reached one hand up towards my mom's face.  Still not a lot of smiles or activity, but a definite sign she was happy to see my mom and enjoyed her visit.  Soon after she left my friend Lori also stopped by.  She brought Meagan her favorite two things: a stuffed animal and a pack of Pediasure. She knows Meagan well!  Meagan once again reached her hand up towards Lori, showing recognition and also contentment with her visit.  I was happy to see these little glimpses of Meagan's personality.

Nanas make it all better

A sweet gift from Miss Lori

The rest of the day went fairly quickly. Her pain was managed constantly by meds.  The Neurosurgery resident from Dr. R's office stopped by to check on Meagan.  He realized her pain level was high, but, as far as surgery results and recovery went, he was happy with her progress thus far.  He said she was free to have her catheter removed and he put an order in for her to be moved out of the ICU. She had gone through the night and most of the day with steady vitals, so he said there was no reason to keep her in the PICU.  He called in for her to be moved where she may be a little more comfortable and have her pain managed a little more without all the "chaos" that the ICU brings.

Some good news that happened in the afternoon was receiving a callback from Nurse J, Dr. B (GI doctor)'s nurse. She had already spoken with Dr. B and they had gone ahead and scheduled Meagan's g-tube surgery. Yay! She is all set for two weeks from now to have her g-tube placed.  It might sound strange to some, especially those outside the special needs community - but I am beyond excited for her g-tube.  Meagan has struggled so long with weight, it feels awesome to take something else off her plate.  Take another battle away from her and just let her have some peace! She can always eat orally, but now the pressure is finally off.  No more worrying about calories from eating... no more worrying about if she was burning too many calories by trying to eat... no more worrying about losing weight when sick or having surgery.  Meagan gets to eat now just for the joy of eating. And we can take care of the rest (including her meds) through her g-tube.  What a blessing it is to have a way to help her and let her retain the joy she finds in food.  I also feel like we are one step closer to checking another box in the "list of things Meagan needs to do" column which hopefully will lead her to have an uneventful Spring and Summer.

**Warning** Incision picture




Meagan's incision - from the base of her head to the base of her neck between her shoulders.

As we stand tonight, the goal  is simply "staying ahead of the pain."  Her nurses have her morphine and valium set on a really good schedule and hopefully it keeps working.  Her incision was leaking a little bit on her pillow but they are confident it's nothing bad.  If we can manage the pain and keep that incision healthy these next few days I know Meagan will get the rest she needs and will have a much more pleasant recovery experience.  Dr. R did stop by later tonight to check on her personally.  He said although she seems uncomfortable, it was not unexpected.  The nature of the incision and the surgery was intense and invasive in a highly vascular area with a lot of nerves and soft tissue.  So we just need to give her time and let the medication do its job in helping her to relax.  He was hopeful that as long as no surprises arise, he may be able to get her home before the end of the weekend.  He said he would check in on her tomorrow and for now both of us try to rest.


So we can scratch off day 2 of recovery. We were pleasantly surprised, again, to receive a few more gifts for Meagan.  I love how the happy dancing colors of the balloons and the sweet soft feel of the stuffed animals are tangible reminders of just how much our sweet girl is loved. She is (and we are) truly blessed with our dear friends and family.  I'm  happy that Meagan's pain is definitely under control now and that other things, like her g-tube, are falling into place.  I can actually, dare I say it, see an "end in sight" to our crazy few months (I think).  I miss my older girls a lot, but I'm very blessed to have them in good hands so I can be here with Meagan.   Not exactly all roses, but what is? You don't get that beautiful red flower without a few thorns on the stem.

Thank you Aunt Amy and Parker...

...and Audrey Sue and family...

...and all Meagan's wonderful family and friends.

Chiari Decompression Day 1

Meagan's surgery day finally arrived. Some people asked how I was so calm leading up to it, but I honestly was more than calm - I was relieved.  It's a funny thing to "look forward" to a surgery.  It's not something I would ever "choose" for my child, nor want, but when it is a necessity for them to feel better and hopefully move forward with their life, it becomes a rather easy thing to deal with... for me at least.  The waiting was really the hardest in the last few weeks because it seemed like an eternity.  To wake up today and know we were finally taking action to hopefully bring some relief to Meagan felt comforting...and right.

The day started rather early.  Meagan was NPO (no formula/food) starting at midnight.  She typically sleeps through the night, or at least until 5am.  Of course last night she woke up at about 2am, but could not have a bottle since we were past midnight.. she was not a happy camper.  We were told between midnight and 4am she could have some clear liquids, so we attempted some Gatorade in a bottle, but of course she didn't want anything to do with that.  Hence, we had a screaming fussy baby from about 2 o'clock this morning all the way until she was taken back for surgery around 8:45am.

Someone was tired out from crying all morning

Once we arrived at the hospital Meagan was checked in, had vitals taken and was taken down for a CT scan.  Dr. R wanted one last good picture to double check what he was doing and where he needed to work on Meagan.  Once the CT was completed we went back upstairs and waited for the nurse to come in with Meagan's pre-op meds.

Seemingly unamused by the morning cartoons

The nurse came in, went over our questionnaire again, and gave Meagan some Versed to help calm her down before she was taken back.  The change after the Versed was almost instantaneous.  She went from crying, fussy and untrusting to happy, smiley and relaxed. It was nice to have a few moments of smiles, even if goofy, before she had to go for surgery.

Before Versed

After Versed

 Dr. R came in.  He pulled up Meagan's MRI pictures again to go over in detail exactly what he was going to do.  Dr. R told us it would be around 4-5 hours for surgery, give or take.  He said we could walk around the hospital and bring our cell phones with us for a few phone calls from the OR, which would keep us updated on how she was doing. We said our goodbyes to Meagan as Dr. R finished explaining the procedure to us and then the wait began.

Daddy getting some work done while we waited

We took a few walks, got a few bites to eat, caught up with friends and family and also just did a lot of sitting.  And a lot of waiting.  The OR phone calls came and went - all thankfully reporting that things were going well and she was doing ok through the surgery.  Finally just before 1pm we got word she was out and moved to the ICU.  We had to wait a little bit in the waiting area while the nurses got her settled down but in a fairly quick amount of time, we were allowed to go in and see her.

Not feeling well :(

A bear from mommy and daddy for being brave

Overall Meagan looked pretty good but I could definitely tell she was in pain.  She kept waking up out of her semi-sleep and crying out or whimpering.She barely opened her eyes except when the nurses had to check her pupils and even then it was with resistance   She needed more pain meds, but the only issue was her heart rate and respiratory rate.  Hers are naturally on the low side without any meds or trauma, so with any sort of depressant (ie: the pain killer) in her system, it tends to exacerbate this problem.  At the same time, we had to get her settled down because she was obviously uncomfortable and hurting.  The doctors finally figured out a cocktail of Tylenol, Valium, and a hefty dose of Morphine to help calm her down.  For a while they were walking a fine line of medicating her, but also holding back to keep her vitals stable, but finally after a little while, they were able to figure out safe doses to give her leaving a number of minutes in between each push so her body could tolerate the influx of medication.

Dr. R came by to see us later in the afternoon.  He first came in with something that looked like a piece of paper - what I soon realized is that it was a picture of Meagan and all her sisters.  We had given it to him in a Christmas card along with a few pictures of Meagan alone.  Dr. R had grabbed the picture from his office and brought it with him when he came today to "bring Meagan some cheer."  I thought it was very sweet and once again reinforced why we love Dr. R so much!  We set the picture in Meagan's crib so when she starts to wake up, she can see her sisters.

Dr. R went on to explain how things had gone that day.  He said the surgery had gone very smoothly on his end.  He said everything had gone as planned - he was able to remove some of the bone and open up the area enough to give her some relief without having to open up the dura at this time (which is the second part of the surgery too dangerous for her right now).  He said an ultrasound showed the crowding in the area was temporarily alleviated and for the time being the second part of the surgery could be held off until she gained more weight.  He said hopefully this gives her some relief as we move forward with recovery.  There is no guarantee of this,however, as a higher success rate follows doing both parts of the Chiari surgery, so like with anything Meagan, it is a 'watch and see.'

So far, after figuring out her new med cocktail, Meagan seems to be resting comfortably this evening.  She occasionally wakes and whimpers in pain but the nurses are always right there with her next dose of pain medication and administer it promptly.  She will stay in the ICU tonight so we can make sure her vitals don't dip anymore and so she can receive the round the clock care she needs to make it through her first recovery day.  If she seems to stabilize overnight and does well sleeping on her own, and as long as her blood work also comes back ok in the morning, she may be moved to down a Neuro room tomorrow and out of the ICU.

Daddy telling Meagan "It's ok" 

Meagan is still on clear liquids, IV fluids and a catheter, so no bottles of pediasure as of yet. I can't hold her yet either as her incision is still very tender.  They are keeping her positioned carefully so she can stay upright and allow herself to start healing correctly.  I'm hopeful that tomorrow at some point I can hold her, or at least crawl into the crib with her to give her some mommy snuggles.   Meagan certainly came through today brave as ever, but then again, I had no other expectation   She may be tiny but she can pack a punch. We are looking forward to (hopefully) a restful night and we will update tomorrow with how miss Meagan is doing.  If anything, her bravery today and all the sweet gifts she received showed her she is one loved little girl - and reinforced what a gift she is to all of us.

A gift from her hydro buddy Meghan

Finally resting peacefully

Breakthrough

There have been quite a few updates with Meagan in the past few weeks.  First, as you know, we figured out on her hospital stay that her Chiari Malformation was starting to cause her distress.  She was having pain fits (and still is), and was having episodes of discomfort, and throwing her head back.  Since then she also prefers to lay down whereas just weeks before she preferred to be held up in a sitting position.  We have also seen her head puff and sink over and over again in the last week.  So she has a bunch of different things going on probably causing all her discomfort and fussiness.

Severe sinking..yet again...despite being on the same setting as before.

After her three episodes on Easter Sunday, I decided it was time to call back Dr. R.  While I was in agreement about waiting for Meagan to grow for surgery, I was also not ok with just letting her go through these pain fits.  First of all, these episodes are painful for her.  As her mother, and just as a human, I have a problem with that when there is possibly a way to alieviate the pain.  Second of all, on her good days, if we are burning a ton of calories helping her work at PT, then on her bad days where she has these fits, she was burning a ton of calories as well during these episodes.  That's not good for her in general, and especially not with weight gain.  Enduring these pain fits means she is burning calories from both ends, if you will... on her good days and bad days... and that is not good for meeting our weight gain goals.  So I gave a call on Easter Monday asking what to do - if there was possibly a rescue med to have on hand, just like with bad seizures, so when she went into a fit I could calm her down, let her rest and wake up "reset" in a better mood.  It didn't take long for Dr. R to call me back.  Matter of fact, I was very pleased with his response time.  Within just an hour, I got a call back from him and he spent a good 30 minutes on the phone with me talking about possible solutions.

What our Easter Sunday looked like:

We came to the conclusion that the best way to try and tackle these pain fits was to attempt at least part of the Chiari decompression surgery.  He said the surgery was basically two parts.  First where they work at opening up the area by shaving the bone and possibly removing some of the top vertebrae.  Secondly, where they open up the dura (bottom part of the brain) and allow more fluid back into the area being crowded.  Dr. R said very bluntly he would not attempt the second part of the surgery now.  He said with Meagan's small size, there was an extremely high risk of her bleeding out and/or leaking spinal fluid...both things we did not want to chance.  I agreed.  He did say, however, the first part of the surgery should be no more risky now than later, and possibly by opening up that one part and shaving the bone, we could give her some temporary relief buying us time for her to grow bigger and stronger for the second part of the surgery.  We discussed some final details and within a few days, Dr. R's scheduler called me.  Pre-op was set for Monday and surgery Tuesday morning.  Surgery would be about 3 1/2 hours long with a 3-5 day hospital stay.



Another development in the last week has to do with Meagan's GI doctor.  As you know, the whole debacle of trying to see a new doctor at her GI practice has been quite a feat.  We finally got an appointment for late March, and we were all set to go.  However, just a week before that the kids had fallen ill again - some with the usual "creeping crud" viruses and then 3 of the girls developed Strep.  Maura seemed particularly bad for some reason.  I couldn't figure out why she seemed so terrible especially since she had started on her med and been resting.  However as the afternoon went on, I knew something was terribly wrong.  She was the true sense of lethargic.  Not very responsive. Was "passing out" standing up.  Then as she was laying on the couch that evening I took her temperature - 106.  I double checked with another thermometer - 106.4.  I knew I had to take her into the hospital.  I called Brian who left work immediately and came to meet me so I could take her in.

Something was terribly wrong

Once we got there, the nurses checked us in.  They listened to her and then asked me if she'd been having trouble breathing.  I hadn't remembered any particular time, but now that they mentioned it, in hindsight, I did notice her working a little harder at night if she crawled into bed with us.  Apparently she sounded so bad, it got us a fast track to the ER doctor (who was incredibly nice) and a chest x-ray.  Just as the ER doctor suspected, Maura had full blown pneumonia.  What? I was completely shocked.  We had been so distracted by her bad case of strep, it just wasn't apparent to us.  But now it all made sense.  Needless to say, she was admitted to the hospital on fluids, IV antibiotics, and other medicines.  Ironically the respiratory floor was ful, so we ended up on the Neuro floor.  The plus side was I knew a lot of the nurses already.  The down side was...yep... you guessed it.  That next morning? Meagan's long awaited GI appointment.

She was definitely staying. She could not keep her sats above 79 :(

Day 3 - Starting to be more alert

I had no choice but to call and cancel to reschedule.  Maura was so sick and I couldn't leave her.  The office manager on the phone said I would have to reschedule for the end of April.  Excuse me? I explained the situation - Meagan having lost weight over a long time, all efforts exhausted, and us needing a weight plan for her upcoming surgeries... nonetheless, the manager was still incredibly rude and obstructionist (in my good friend Amy's words) and she refused to give us an earlier appointment.  The ultimate insult was when she stated "I had my chance with my appointment I cancelled."  Wow, I thought. I'm sorry. I hadn't planned on one of my healthy children being in the hospital with pneumonia . I explained to her that Meagan really needed to be seen much sooner than another month.  She had lost a pound in a week and we were at the point where we needed GI intervention.  The office manager ignored my requests and told me I would have to wait. It wasn't an emergency.  At that point, I felt a bit helpless. Here I was with one child sick, and the other who desperately needed her GI appointment stuck without one.  I knew the office manager was not taking me seriously and probably had not even consulted with the doctor about our case and what had happened causing us to miss the appointment.

Meagan had lost a pound in a week..back down to 15 pounds at almost 19 months old.  

She needed to be seen.

Fast forward to the end of the week - after decidedly being the "squeaky wheel," and enlisting the help of a few dear friends who also see the same doctor we were supposed to see, the office manager called back a few days later.  She had "magically" found an appointment open for the very next Wednesday. She didn't sound too pleased on the phone. (ha)... but sometimes it pays off to keep pushing (and have a few good friends pushing right along with you on your side).  We were all set for a Wednesday morning appointment and I was very glad.

We got into the office early on Wednesday.  We met the new GI, Dr. B, for the first time who was incredibly nice.  We went through Meagans history from the beginning....her birth, her eating troubles, what we have done over the last year and a half to help her, and what our goals were for her future.  He was very thorough and talked about two options for Meagan in his opinion.  First would be placing another NG tube (the tube that goes through the nose) to try and bolus her feedings.  Basically, whatever she didn't finish in her bottles, we could bolus through her tube.  The second option was to go straight to a gtube.  (tube that goes directly to the stomach).  We talked thorugh the pros and cons of both options, and he asked my opinion.  I told him I really had no opinion for or against either - my only worry with the NG would be she would grab it out.  It is a blessing that she is able to grab now and use her hands - but - it makes things like this tricky.  I just had a feeling she would not tolerate it.  He suggested we try - and if she pulls it out, then we know we need to go to a gtube. He said instead of waiting around why not come back the next morning for a nurse's visit - since Meagan had already been on an NG tube as a baby, he felt no need to admit us to the hospital to place it.  He said the nurses could do it the next morning and then give me a quick refresher course on how to care for it.  I agreed and we left the office.

The next morning I returned bright and early with Meagan.  We met Dr B's nurse and she took us back to a room to get the tube placed.  I knew almost immediately this was probably going to be a no go.  Meagan fought and fought the whole time and did not want anything to do with the NG tube.  I really don't blame her.  She hadn't had one since 8 weeks old, so why would she tolerate it now at almost 19 months old.  But, nonetheless, we tried.  We wanted to see if I could get her distracted and even asleep for a little bit if she would grow to tolerate it.

So defeated. Poor sweet girl!

Once the tube was placed, we left the office.  I had to hold down Meagan's hands almost the entire time to keep her from pulling at the tube.  Dr. B had recommended we buy a scale to keep track of her weight at home since Children's was a drive and our Ped's office would require copays.  We stopped on the way home at the store to get the scale.  Enter: the first time Meagan pulled out her NG.  I put it back in and we continued on our way.  We got the scale, and checked out.  I had to go get Anna from preschool so we drove to the school.  I had Meagan out for a little bit while waiting....enter: the second time Meagan pulled out her NG.  I placed it back in and went to get Anna.  I was able to get Meagan to sleep and luckily she stayed asleep as we got back into the car.  About 5 minutes from the house, I heard a choking/coughing sound from the back.  I looked in the mirror and saw Meagan had pulled off all the tape from under her nose and around her cheek.  She had pulled the tube almost all the way out but the end was stuck on the tape and she was gagging.  I quickly reached around to her seat and grabbed the end of the tube and pulled it the rest of the way out.  I knew at that point...and NG was not going to work. At all.

I did get one good smile out of her as soon as she woke up......

....but that didn't last long and she pulled the tube out... again.

As soon as we pulled into the driveway, I called the Dr. B's nurse. I explained what had happened and how Meagan had pulled her tube three times, the last time almost choking on it.  I told her at that point, we were skipping this step.  It was quite obvious she wasn't going to tolerate it.  We were comfortable with moving on and talking about placing a gtube.  She agreed and said she would have Dr. B call Dr. R to see if by chance they could coordinate surgery on Tuesday.  Dr. B said it probably wouldn't happen, but he would ask anyway, which I appreciated.  Dr. B called us back yesterday and said as he suspected, he could not coordinate surgeries with Dr. R.  He said the Chiari surgery is too invasive and lengthy for Dr. R to feel comfortable coordinating another surgery with a child Meagan's size.  I completely understood and wans't disappointed.  It would ahve been nice, but, Dr. R knows best.  Dr. B said to call back after Meagan's Chiari surgery and we would schedule her gtube surgery shortly after.  So that's where we stand with GI.

I'm so glad we finally got in with Dr. B.  He truly shows he cares for his patients and takes the time to listen to the full story and see what the best path is for the child.  He tried the least non invasive path first, and when it was apparent it wouldn't work, he moved right on to helping us schedule gtube surgery.  I wish the NG would have worked, at least for a while - just to give us a chance to bolus more feeds for Meagan.  But, the goal of weight gain is to improve her quality of life.  There is no way her constantly pulling at a tube, and crying because it was in was an improvement in her quality of life.  We want to help her gain to do more - not make her miserable.  So on to a gtube we go.  At this point, I honestly feel relief for it.

Nana comforting Meagan after a rough evening

So quite a lot going on for miss Meagan in the next few weeks.  We are hopeful that the Chiari surgery holds some relief for her with her pain episodes and re-motivates her to start sitting up more often again with more comfort.  Also, a side effect of relieving some of her Chiari malformation could be an improvement in her eating ability, maybe making a gtube a short term tool she needs until she builds strength.  And of course, hopefully a lessening of her apnea and low heart rate alarms.  All things that will be great improvements for Meagan, and truly help her keep going towards the better quality of life goal we want for her.   Hopefully, at the completion of this next chapter, we see the breakthrough Meagan has been needing. So we wait anxiously for Tuesday.  We are confident that God will once again put His healing hands over Meagan and his protective heart along side hers to give her the strength she needs to pull through once again.

"........the LORD'S promise is tried and true; he is a shield for all who trust in him..."  PS 18:31

Expect the Unexpected - Part 3: Surgery

Well after switching surgeons and waiting for what seemed like eternity, my surgery date finally arrived yesterday.  It couldn't have happened at a better time, it turns out.

Just for a brief summary:  I had found a small bump behind my right ear.  I forgot about it, and then rediscovered it after Christmas-time.  It seemed larger so I had it checked by my primary care doctor, who referred me to an ENT.  The first ENT I saw did the ultrasound and saw a tumor sized just under 1cm. They also did a fine needle biopsy which showed certain salivary cells but was inconclusive.  They said most of the time these were benign so we could just watch it. Upon my own research though, I also found that #1. These particular types of mixed cells have a high occurrence of degenerating into malignancies if left alone, and #2. These particular type of tumors, even if benign, can continue to grow and increasingly threaten facial nerve bundles that run right through the same area.  I had asked about having it out and the ENT was ok with that but I wasn't comfortable with how they would do the surgery and where, so I went to a second opinion.

The second ENT surgeon I saw was amazing.  To recap, he said he wouldn't watch it, but definitely have it removed (for the reasons I stated above), and he also would try to remove it a different way so he could completely avoid my facial nerves, something important for my musicianship, and also just to me as a person.  He was booked and then out of town so we had to wait until this past Friday to have the surgery.  But boy am I glad I waited for him.

Fast forward to this past week.  I went to my pre-op Tuesday.  Dr. P went through all the usual paperwork and talk-through about surgery, what it would entail, and the possible outcomes.  He was confident everything would go well. Based on the scans the tumor looked relatively small and easy to navigate.  I got a call later that day that surgery would be Friday morning so to arrive early to the hospital.  I was told to pack a bag because he may want to keep me overnight depending on how things went.

My in laws had been helping me the entire first part of the week to help me with all my pre-op obligations, and so I could easily pop in and out of Meagan's GI appointments..etc...We had a mini birthday celebration on Wednesday night since they would be leaving the next day.  My father in law cooked Fajitas and my sister in law made the most incredible Margaritas.  My mother in law helped with the kids and we had a great night of fun, talking, eating and spending time together. I got some nice gifts and some good family time.  Overall it was a really nice night.

Birthday celebration #1.....

My parents came in on Thursday to trade off with my in laws.  My in laws left and I spent most of Thursday prepping by doing laundry, cleaning and organizing, packing my bag and getting things ready for the weekend while my parents held down the fort with the kids.  Of course we had another smaller birthday celebration that night since it was my actual birthday.  I didn't want to eat much the night before surgery but my parents had brought a small cake for me. Brian lit the candles, the family sang to me and we had fun opening a few presents and eating a little bit of cake.

Birthday cake with Brian and my parents...

Hello 33!

The next morning came quickly, which I was glad about.  We drove to the hospital and checked into the outpatient center.  The pre-op nurses were so incredibly nice.  I must say it felt very strange to be laying there and have something about to happen to me - I was so used to being the support as something was about to happen to Meagan. A very strange feeling indeed.  Once all the pre-op signing and testing was finished I got my IV.  Like mother like daughter - I also needed the IV team to come and find a vein. I guess some of Meagan's tendency of being a hard stick is genetic :)  Anesthesia came in and talked to me about how it would all go - I was listening to him closely as I had never been under before. He told me I may have a sore throat for a few days from the breathing tube and warned me of the nausea possible when waking up.  Next another doctor came in to talk to me about nerve monitoring.  He explained that they would be putting needles all over the right side of my face to monitor my nerve function in real time during surgery.  If Dr. P got close to any facial nerves, the needles would send off immediate signals that would tell him he was near nerve centers and it would help them to preserve nerve function.  Pretty amazing stuff!

Pretty nervous about the anesthesia

Finally I got wheeled down to the OR.  The nurses asked me my name and what I was having done, and then that's the last thing I remember.  Next thing I knew I was waking up in my recovery room.  I kept hearing my alarms go off and nurses would come in and shake me, or Brian would reach over and push on my shoulders.  Apparently I was forgetting to breath as I was coming out of the anesthesia so they kept having to stimulate me somehow until I woke up a little more.  Once I was more awake the pain definitely set in.  I could feel the whole right side of my neck, face jawline just throbbing with pain.  I had a small drain also coming out from that side and my ear was numb.  ( I was warned about having a numb ear before the surgery as a nerve in my neck had to be severed).  Finally Dr. P came in to talk to me about surgery and what they found.

He said once they got me opened up, he knew it would be a longer surgery.  He said the tumor was actually quite a bit larger than they had anticipated.  They were expecting a mass under 1cm, and instead found a tumor that was over 2.5cm large.  He said it also had uneven borders on the back and was growing aggressively into my surrounding lymph nodes and tissues.  He said the initial frozen section did come back benign, but, because of the way the tumor looked and its aggressive growth pattern, he decided to not only take the tumor out, but also some lymph nodes, and a large margin of surrounding tissue. He also ended up taking about a third of my entire gland.  Dr. P said we should have full and final results in 5 days but he was hopeful since the frozen section was benign the rest of it would be too. That's the way I'm feeling as well - I'm just glad he did what he did in the OR.  The type of tumor it was, although mostly benign, have the highest rate of degenerating into malignancy, and also the way it was growing it would have soon impacted my facial nerves.  I'm so happy I went with a surgeon who was not only experienced, but who also made the best split second decision for me and my long term health when faced with a little different scenario than anticipated in the OR.  He said because of the large margin he is sure he got all of the tumor, and for a tumor that has a normal recurrent rate of 20-40% he feels my recurrent rate has been cut to 4-7%.  All good things to hear when you come out of surgery, especially considering what the consequences could have been if I had stayed with the first surgeon who wanted to "watch and see."

My lovely drain

Incision site 

Because of my little breathing issues, I had to stay until 5pm surgery day, but once my vitals stabilized, Dr. P said I could go ahead and go home.  He said that I would be pretty sore from the surgery as it was more invasive than they originally thought so to make sure and take my pain medication.  He also said my throat would be sore from the breathing tube and that my face may start to feel bruised over the next few days from all the nerve monitoring needles they inserted.  He also gave me instructions on how to care for and empty my drain and said I can come back on Monday to have the drain removed. Dr. P said I was to be on a two week liquid diet.  He wants to minimize to eliminate any chewing because it will stimulate saliva production which could lead to cysts being formed as my surgical site is trying to heal.  The nurse then wheeled me out to the car we headed out.  Of course in true "Molly" fashion, Brian and I made a stop at Walgreens for some cold drinks and my medication.  Anyone who knows me knows I have a big problem with just laying around in bed for prolonged periods of time. :)

Maybe a liquid diet won't be so bad?

Since being home things have gone 'ok.'  I feel bad complaining as I know there are things MUCH worse people go through, including all our Hydro kids who endure so much.  However that said, I think I earned a little bit of a right to whine a little bit. My jawline is definitely painful and really hard to move.  There is no way I can chew anything - matter of fact I've probably even been talking too much over the last day because today my incision site is absolutely on fire with pain.  My throat is still a bit sore and face still bruised feeling, but the most sore area is the site behind my ear where he had to dig for the tumor.  I can feel pain from the back of my jaw all the way deep inside my inner ear area and back out to my face.  I know it will get better with time, but for now it is really annoying.  I'm trying my best to stay on top of the pain and rest because Meagan has surgery coming up in 3 days so I want to make sure I'm strong enough to be there for her.

I am so so thankful I decided to listen to friends' and family's advice and go get a second opinion. Dr. P truly knew what he was doing, and knew in that instant what he needed to do to protect me from the tumor doing any further damage down the road.  I will feel completely at peace in a few days once I have those final results in hand, but, for now I feel pretty good that no matter what he did a great job and we are rid of that awful thing.  It is still so random this happened, but, I am better for it. If I could tell anyone a lesson from this it would be to know your body - and if something doesn't seem right, by all means get it checked.  Further, if you aren't comfortable with one doctor's answer, go to another until you have your answers. It could very well save your life.

 Now I look forward to healing, some final good news from pathology, and turning my focus back to Meagan where she will need me most.  Thank you all for the prayers, support and love.

 My favorite place to recover

Glimpses

After a very rough week for Meagan and a lot of new information to digest we have had a lot of well wishers and prayers offered. We are thankful for every one of those and appreciate all the love and prayers. I was asked a several times by friends how I manage with the 5 girls, household obligations, and balancing that with Meagan's good and bad days alike. When she is having a rough patch, how do I do it?

I can't speak for any parent but myself. And the answer for me is ... I just do. I tend to worry or seek out information with a few in my trusted close circle of friends (non hydro parents and hydro parents alike). I have my core group of confidants with whom I can vent or seek advice. But outside of that group, I just "go." I'm pretty sure I've always been like this whether it was school, a project I was working on, or a job...my parents can definitely attest to that.  When things happen with Meagan, that innate sense in me to turn on the afterburners, so to speak, just kicks in. Especially with the unexpected things, I just live in the moment. I tend to be more defensive and on the "attack" than worrisome. My worry usually comes after the event. I guess this is a gift from God so He allows me to focus all my energy on Meagan at the times she needs help.

Coming back home from unexpected hospital stays is always a relief. Not just that Meagan is ok and we are home, but that I am back with my other girls too. This is so hard on them at times when I have to be away with Meagan. And while Meagan requires extra special attention and care, my other girls need me too...in so many ways.  They are just incredible little human beings, so coming home to them is always a joy.

Yesterday, I was getting ready to teach some lessons and the girls were going upstairs with Brian.  Reilly approached me on her way upstairs and told me she had written me a note and wanted to read it to me. This is what it said:

"Dear Mommy, you are the best mom in the world. I am so glad that you are my mom. I just couldn't do anything without you. Love, your mommy girl, Reilly"

Her sentiment was so sweet and genuine. It was definitely a note I will be keeping.

So besides all the normal parent stuff and the unconditional love and the pride in being able to help them or comfort them ... Moments like that are really what gets me through the trying times.  The glimpses I see showing me our girls are turning into good people. Loving people. Prayerful people. Grateful people. Those are the glimpses that keep me going and make even the toughest days oh so bright.