Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, May 20, 2016

Problem Solved

Before I get into details, I want to say that this blog post is being written from my living room - yep, my nice comfy home sweet home living room (yay!). We got home late last night and frankly, we all passed out before I could update anything so here we go.

Meagan's new blood work yesterday morning was ok...but not 'great.'  Her white counts and CRP fell again (which is good), but not by as much as Dr. Shore (infectious disease) would have liked.  In addition, her sed rate (another inflammation marker) jumped by 20 points.  Dr. Shore was glad things were creeping down, but with the other number jumping up, and Meagan STILL holding fever, he was not comfortable discharging her without more aggressive treatment plan.  A big goal is to not go back to the hospital.... as much as we love our specialists and nurses, we don't want to be there to see them .  (They know exactly what I mean when I say this), so when Dr. Shore explained his plan I was completely on board. We did not want to rebound at home and return with another infection or worse. 

Dr. Shore ordered IV steroids that Meagan would get through the day, and then he ordered a completely different antibiotic.  He said hitting her hard with the Vanc was protocol - you don't wait around to see if a brain patient's brain is infected - you treat it.  But he said now that her CSF was clear for the 72 hours,  his discovery of what was going on, and with her inflammation numbers and fever, he wanted to add a more targeted antibiotic in addition to the steroid.  He said typically if he hits it with this combination, especially at this point in the game, he sees fairly quick results or reactions from the body. Dr. Shore said he would recheck her in the evening, and if his suspicions were correct and she did respond quickly, we were on a promising path and he would talk going home to continue recovery.

Cara was over it too...and ready to get home!

The IV meds were started and so we waited.  The steroid of course made her crazy.  It was good to see energy, but, it was "false" energy.  She was a handful to watch on the steroids because of course she felt she could do things that she could not - she was just completely restless.  I held her a bit in my lap to try and contain it all, and then at one point she looked at me and said "put me in my bed."  So I did, and she fell right asleep.

Cara helping Megs through her meds...her IV was so sore.

As the day went on, she rested and her fever started to come down.  By early afternoon we were finally at 100.  It was a great sign.  After her last dose of antibiotic, she asked to sit in the "blue chair."  The blue chair is the chair that is in every room - Meagan knows this chair because typically, as she starts to feel better during stays, it's her next step to going home - to sit in the "blue chair."  Naturally, I agreed and put her in the blue chair.  She just chilled.  She looked outside and was talking about the clouds and trees she saw. It was nice to see her just be relaxed and enjoy all the activity going on outside her window.

Meanwhile, in the midst of all this, Dr. Reisner and Blaire came by to check on Megs.  She was due to have her stitches out anyway the previous day from her surgery, so they decided to just do it then.  One problem was that Meagan had major 'hospital head,' as we call it.  The whole back of her hair was literally a huge knotted ball.  Blaire asked us to wash it and try to comb it out so they could get to her stitches and then they would return to remove them.  When I looked at the back of Meagan's head, I knew no amount of conditioner was going to help it.  I asked the nurse to discreetly give me a pair of scissors because that was the only way we were reaching the stitches.  We bathed Meagan in her bed, and I put a ton of conditioner on her hair.  I then cut through the middle of the knot and started to comb.  I took each half of the knot, slowly worked the tangles out, and finally we had clean combed hair and an easy path to her stitches.  Blaire returned with Dr. Reisner later that day and removed the stitches.  Dr. Reisner also told me he had consulted with Dr. Shore and agreed with his conclusions and plan, so that made me feel better as well.  We said our goodbyes and I told them hopefully we don't see them for a year....and of course we sent Dr. Reisner off with a Hershey bar.  Can't break tradition.  (If you are unfamiliar with why Hershey bars are a "thing" between us, read HERE).

Later that afternoon, Dr. Shore came back to check on us and Meagan was smiling.  Although still very pale, she wasn't as "grey" as she had been, and he felt a lot more comfortable about our plan to go home.  He said he couldn't let her go without a heavy course of steroids and antibiotics to continue at home, and of course we were ok with that.  He also said that in Meagan's case, she harbored so much bacteria there that once she is all better, we need to consult with ENT and schedule to have Meagan's tonsils removed.  Dr. Shore said that there was no way to know for sure, but between the intubation for the surgery irritating her throat, and it being a perfect opportunity for germs to enter, she had a lot going on that all came together perfectly to create this whole mess this week.   I thanked him for all his help and excellent investigative work. I told him I liked that he was a problem solver.  He acknowledged that without his consult from Dr. Reisner, we could have been there for weeks more and still been searching for the cause.  Without the correct course of steroids and targeted medicines, it would have been a circus and probably a lot longer hospital stay....not to mention, a much sicker Meagan.  He gave me his information so we have access to him for future consults if Meagan is ever down again and it's not the shunt - especially if it happens out of town.  I was very thankful to have that - another phone number for peace of mind and another amazing specialist on Meagan's team.

Once we got home, Meagan was beyond excited to see her sisters and Bentley.  She did try to walk a little but it was virtually impossible.  She couldn't hold herself up at all and fell hard.  She wanted so badly to be with her sisters though, so for the rest of the time she was awake, she scooted around the floor.  She's also a problem solver.  I like that. The meds - I don't like them too much. :)  Of course I like they are making her better.  But Meagan on steroids is no fun.  She is hyper beyond belief one second, and in complete tears the next.  She is emotional and laughing and crying and nutty.  It's funny and tiring and annoying all in the same moment. I just keep telling myself it's helping her - and maybe she's helping prepare me for a houseful of 6 teenage daughters.  Ha.

Sometimes problems with Meagan are clear cut.  And often times they are not.  If you have followed the blog from her birth or before, you know that many times we have had to go with the 'non answer' answer.  So any time we actually get a firm answer on things, it is a breath of fresh air.  Even Meagan's nurses rejoiced when Dr. Shore got to the root of the problem.  They have been there through it all and have seen all too often Meagan and her doctors struggle with answers when things don't make sense.

We see Dr. Shore again next week and then will move on to ENT to schedule her surgery.  It stinks she needs another surgery, but comparatively, this one should be pretty "easy." And it helps solve another problem that could really affect Meagan negatively down the road if we don't do it.  So we are happy for preventative care as well - problems solved before they start are always ok by us!

Thanks to everyone for all the thoughts, prayers, meals, help, and kind words.  Weeks like this can be very hard on the family, namely the other girls, and every little token of kindness was felt and appreciated.

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

Tuesday, May 17, 2016


Meagan slept last night for a few good stretches.  She got a pre-op wipe down (just in case), and another dose of her heavy antibiotic.  Unfortunately, her IV also went bad - it never looked great from the ER anyway to be honest so I wasn't surprised.  Luckily, one of our favorite people to redo IV's was here.  Ms. C, as we will call her, was excellent as usual, and got another IV in Meagan's hand with minimal fuss and pain.  She was able to take the old one out and let her arm rest.  We saw glimpses of Meagan's stubborn self when she was getting her new IV - telling Ms. C she needed to put a band aid on it, she was getting a 'boo boo,' and then finally telling her and our nurse that they could go home.  Oy.  Needless to say, despite her being bossy, all of us were happy to hear it because that is more like the Meagan we know - so I thank them for taking Meagan's "insults" with grace and indulging in some humor about the whole thing.  Any glimpse of Meagan's personality is a good thing!

So first for the good news - her CSF cultures are still negative, and we are past the 24 hour mark.  Now I don't want to jinx anything by saying this, but, I would honestly be shocked if we saw any bacterial growth at this point.  Yes it can happen up to 48 and even 72 hours, but, I feel pretty comfortable saying that her CSF, thankfully, is not what is holding the bacteria.  That would have meant removing her entire shunt, waiting for infection to clear, and redoing the shunt.  So, I am VERY happy her CSF is still showing no growth.  The other good news is that although she's unhappy at times or has, um, 'attitude' (the nicest way to write it), we are happy to see that.  She has been really lethargic since Saturday, so to see that is a good thing.  She will stay awake for a little bit and watch Disney Junior, or will talk to me for a few seconds..etc.  She is still feverish and still wants to sleep a lot, but these awake times are a good thing.  AND the last good thing today - we got a smile out of Meagan.  It wasn't any grand effort - her nurse simply walked in and Meagan smiled.  We love love love her nurse today - well, we love a lot of nurses on first floor - but Nurse P was with us through almost all of Meagan's very difficult lengthy stays 2 and 3 years ago, so to see her walk in made Meagan smile.  I love that Meagan reacted this way - with everything going on, it's nice to see she actually has joy at who is coming to care for her.

Now for the "eh" news - I won't say bad because I do believe with Meagan's personality improvements we have to be moving in the right direction.  But, it's still "eh" mostly because of the unknown.  So if there is no bacteria in her CSF, the logical question is...where is it? Well the most honest answer is - who knows.  What we do know is that her white blood count and CRP were very high, she keeps rebounding with a high fever, and she's still (more than normal) sleepy/weak.  So there is obviously infection happening somewhere - as I said previously they have been hitting her hard with two antibiotics that really should cover us with any infectious situation. 

So the plan from here is - continue to watch Meagan's CSF (to ensure no new bacterial growth), look at Meagan's blood cultures as well (to also make sure no bacterial growth), and if those stay clean, hopefully her blood work from today shows her white counts and crp levels have dropped.  Although not an exact "you have *this* type of infection" answer, what that will tell us is that the meds ARE working and we keep on keeping on until she's back to baseline and infections are gone. 

That's basically where we are now.  Dr. R and Blaire said they could get Infectious Disease involved, but, until we see her numbers there is no point because it will just make it a lot more difficult (and probably painful) for Meagan.... so as long as her numbers come back trending the right way, we can chill with neurosurgery and keep killing off whatever is bugging our girl.

It's all about the numbers today! So let's hope we see them going the direction we want! We will keep everyone posted of course and hopefully have some of those answers for you tomorrow.  Thanks again for all the prayers and well wishes!

Monday, May 16, 2016

The Perfect Storm

Since Meagan's surgery 11 days ago, she has been doing well. She was back to her normal "go get em" self, and even gave herself a black eye trying to walk around her second day home. She went back to school last week (which she loves) and seemed to be doing well. In hindsight I should have known *something* was up because throughout the week she wasn't eating as she normally does. But, she had also been through her first surgery in a year and I attributed it to recovery. By the end of the week, Meagan's mood was turning slightly whiny, but again, i attributed it to recovery. Saturday was a crazy day - I taught dance lessons all morning, went home to shower and get my music and flute and then went on to my symphony rehearsal and performance. I didn't see Megs (or any of the kids) much that day, and Brian had mentioned that Meagan had been "eh." When he says that I know something is up because typically she's not just "eh," especially on a day with daddy.

Today we woke up like any other day. The girls had Irish dance workshops all day long and we had planned for us to split the driving duties so by the day's end, we were all together at dance and then would go to evening Mass together. Needless to say that did not happen. 

Meagan was rather lethargic all day. She was still talkative but didn't want to move from Brian's chair. Remember, this is the kid who wanted to walk so badly after surgery, that she did so, and gave herself a black eye for trying. So something wasn't right. As the day went on she just looked "grey."  That's the best way I can describe it. Then the heat. I could feel the heat a few inches away from her. I got the thermometer and Yep. 104 temp. 

Now you may say "kids get sick" etc. Well yea. They do. And even kids like Megs get "normal" kid stuff. But my mama gut red flags were just screaming at me. We were 10 days post op. And suddenly my kid was laying across the chair. Grey. Lethargic. And high temp. In these situations you are literally praying for some other symptom to show. A stuffy nose. Cough. Anything to be just a "normal" kid thing. But as the hours went on, I could tell she was not well. After discussing my concerns with the Pediatrician, we both decided Meagan needed to go in. 

We arrived at CHOA in the evening. Because of her symptoms they were very quick at getting us back to a room. The plan was to run a viral panel and blood work. One or the other was going to give us a direction. I was hoping for a virus. Again, one of those weird prayers you pray as a hydro parent when your kid is down. 

After a few hours we did get some results. Her blood work came back showing her white counts (infection markers) over 25,000. Her CRP (inflammation markers) was 9.5. Crap. Sorry but that's the first word that came to mind. Neurosurgery was paged. One of Dr. R's  colleagues came in and did a shunt tap. He couldn't pull much fluid from her shunt, but was able to get enough for a culture. The first cultures should be ready in the morning. If her CSF shows growth then unfortunately it means back to the OR to externalize Meagans shunt.  If the CSF doesn't show any growth, we treat her anyway and recheck the 24 hour cultures. Infection in spinal fluid is not anything you mess around with. Luckily Dr. R's colleague agreed and wasn't going to wait for cultures to start hitting hard with meds. Unfortunately Meagan reacts to the ideal medicine to treat such infections, but with close monitoring and allergy meds she made it through most of the dose. After that, they started her immediately on another medicine to help her body keep fighting the infection while we await the cultures. 

People have said its the perfect storm - the timing post op, the blood counts, the fever - for a raging infection to be showing itself. Unfortunately my gut feeling shares that sentiment. However, this isn't Meagan's first storm. So I have faith that with more answers tomorrow and continuing aggressive treatment by her doctors we will hopefully have caught this early and see her turn around. The funny thing about storms is that they do end and the sun always comes out. But in this case, I'm lucky to have light through the storm - and that's Meagan. She is sunshine to everyone that knows her and loves her and we can't wait to see her sweet self feeling better soon! 

We will keep everyone posted as we know updates.