Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, May 19, 2016

To The Moon And Back

Meagan had a fairly uneventful night last night.  She crashed fairly early and slept well.  Her fever still hovered in the 103 range and she was still very tired.  Around 4am she woke up, and was just "up."  I think she had fallen asleep so early she just couldn't go back anymore with waking up so early.  I snuggled her for a bit and then labs came to draw blood.  The results came back promising - Meagan's CRP had fallen again - her white count had gone up a little, but with the falling CRP Dr. R was happy we could be headed in the right direction. 
Still, the fevers were puzzling so far into the process and both of us were worried we were missing something.  Dr. R decided to call in a colleague - an Infectious Disease doctor - to look Meagan over and make sure nothing else had manifested. 
The ID doctor was very nice - he talked with me about Meagan's history, the reasons she had been admitted this time, and what we had done so far.  He had a suspicion and asked if I could help him hold Meagan so he could get a good look.  She wasn't happy about it, but I knew it was for a good reason.  Upon his exam he found that way deep down, Meagan was harboring puss in her throat and that the insides looked pretty horrible. It was crazy because on Sunday, her throat was completely clear - but these things can be brewing and that's probably what was happening in her case.   He said that the infected throat could easily give Meagan the fevers and lethargy she had been experiencing - not to mention a few days before we came to the hospital she had lost her voice.  He also said her loss of appetite and fluctuating white counts make sense as her body tries to fight off the germs. 
Meagan also had been holding the back of her neck more frequently as if it's bothering her - this is the one symptom I'm unsure of - sure, it could have had to do with her throat and referred pain, but after reviewing some of Meagan's latest scans it could also have to do with her Chiari Malformation, especially considering her balance lately and not wanting to sit up as much.  Laying down for her is more comfortable and that's typically a red flag with Megs.  We will see with time - if the behavior stops, then we know it was acute.  If it doesn't, then we will have lots more questions for Dr. R about what this means for Meagan since she would be showing symptoms again.  But for now, we are focused on getting her better from this illness before looking in to what may be lurking again in her brain.
Overall Meagan also had a much better day.  The positives were she was talking, and interacting again with people.  Child Life brought her something to color and we helped her color a page or two.  She had a few of her teachers stop in to wish her well and bring her some love, and her favorite nurse was here again and able to bring some smiles out of Megs.  Probably one of the funniest things ever was when Nurse P was asking Meagan how she had been..  She asked Meagan about walking and her sisters and Bentley and said she looked like she had a very busy and fun year. Nurse P then asked "soooo, what have you been up to?"  Meagan thought for a moment and then said "well my cat is in heaven."  Ha. Really? After a whole year and a half that is the one thing she chose to tell Nurse P.  It gave us all a good laugh and a good hunch that hopefully our Megs was waking up on the inside and starting to win the fight.
As afternoon rolled around, Dr. R rounded again and we talked with the ID doctor.  The ID doctor was not comfortable letting Meagan go home today because she was still harboring high fever, and her labs while promising, hadn't exactly fallen as we had hoped.  Knowing about her infected throat, he also was wary of sending her home with fever in case an abscess was forming - something that if it happened, would bring us right back to CHOA in another serious situation.  So as a team, we decided to wait out her fevers tonight.  We agreed to continue to monitor her and do another round of labs in the morning.  If her blood counts were much much lower and her fevers subsided, we would assume we got it all with her four days of rotating medications and feel good talking about going home.  If her new labs are not lower, or her fevers persisted, then he said he would want to try to give her a boost with a targeted steroid to help her body finish off the infected throat.  At a very last resort, he said he could do a focused CT scan of Meagan's neck to for sure rule out any abscess, however, since she has already had countless CT's and x-rays, and since we haven't seen her new blood counts yet, the scan probably will not happen. 
As the evening went on, Meagan became very tired again.  I would be too with such a long week of fever and pain.  She went back to sleep fairly well tonight -  She was still uncomfortable but sleeping.  I got Cara ready for bed and cleaned up our room a little bit.  Then I went to say goodnight to Meagan - before I even touched her I could see her hair was sweaty.  Could this possibly be the start of her fever breaking? I sure do hope so. But I won't *really* say it out loud just in case....

I was really starting to worry about Meagan this week.  She just didn't look right and we didn't have *the* answer .... she looked grey and pale and wouldn't stir for so long.  I'm so glad that today we have seen her personality start to come through and hopefully we can get some color back in her tomorrow.  We should have labs drawn fairly early so we are hoping for a much more drastic drop in numbers to reassure us that we did in fact get everything and no bugs are lingering in her system.  As for the remainder of the throat, that will heal over time and hopefully she got enough antibiotics in her system to cover her fully and ward off any lingering infection.

Weeks like this can get very crazy for our household - we have school, dance, work, everyday chores, financial obligations, Bentley, and the list goes on.  It gets a little tough to "divde and conquer" with Brian to make sure all our bases are covered, but we just do.  I haven't seen my girls since Sunday morning (barring a quick visit to Reilly for her school awards on Monday morning), I haven't been home to keep Bentley in his routine, and I haven't been home to have down time with Brian and discuss our days, plans, and thoughts. Knowing all this, however - the time away, the expense, the hospital annoyances, the pain Meagan and all of us endure - would never change my choice to do it all over again.  When you say you love someone to the moon and back, you mean it - and that means that sometimes you have to feel like you actually travel to the moon and back to show that love.  This is just one of those journeys  and right now I feel like maybe we are almost on the home stretch from it all...this time..  Laying here with Meagan I am happy and peaceful.  It isn't a chore - it's a gift.  And I will cherish that gift to the moon and back.....and back again....and back again.....and......

Love you Meggy and we are hoping for some awesome numbers in the morning.  <3


  1. Praying for awesome numbers this morning! Glad she was perking up a bit yesterday. What you said is true about trying to coordinate/divide and conquer. Our 11 year old has a really hard time dealing with Ellie's hospitalizations and it usually leads to fall out after everything is over. Its so hard when you can't be there for everyone at the same time.

  2. God Bless the wee Lass and all your family….

  3. Good luck with everything. I know exactly what you are going through as my son, Gabriel Rhys was also born with a severe congenital hydrocephalus. Unfortunately, he is no longer in this world as he passed away at the age of 11 months 23 days. We were told it wasn't the hydrocephalus that ended his life, but the infections he got including the one during his first shunt surgery. If you'd like to see some of his life, I have been uploaded his lifestory to youtube here (his playlist entitled Gabriel's Hydrocephalus Journey..starting with his Memorial Video):


    I am currently working another video of his life. So far half of his videos are done.

    If you ever need a shoulder to lean on through this, don't hesitate to contact me with any questions you may have @ momoschnauzer1@yahoo.com