Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Saturday, April 6, 2013


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


  1. I am sorry to hear she has to have a Chiari decompression. I had one when I was 9, while it wasn't the most pleasant surgery(what is a "pleasant" surgery though)it was not the hardest. I am praying that this surgery give her the relief she needs. your family is in my prayers!

  2. Meagan id such a strong little girl she reminds me a lot of my son they are almost the same age. I will keep her in my prayers I hope everything goes well with her surgery.