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.

5 comments:

  1. We love u Meagan .. always praying for you

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  2. We love u Meagan .. always praying for you

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  3. Yayy!! So glad you are home all together and you got to the bottom of it! The pictures of Cara and Meagan are so cute.

    I love reading your stories so much. I can relate to so many of them. I don't know anyone in real life that can understand so its nice. For example, when Ellie is feeling better she wants to sit on the bench and look outside. Its always a good sign. Also, after her last surgery she had such a horrible knot in the back of her hair. I'm not sure what the surgeon did, but wow! Ellie's hair is so pretty and almost down to her butt and if I had to cut it out, she would have had a boy haircut. This was the straw that broke the camel's back for me and I called my husband sobbing uncontrollably (it sounds silly, it was all cumulative really). He ended up arranging a sitter for my other kids and driving out to the hospital where he spent 2 hours calmly combing out the knot. He only had to cut a small bit of it. It meant so much to me that he would do that.

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    1. Aw! Yea Meagan's hair hasn't grown "much" so it was luckily easy to just cut through the knot and then work out both sides of it separately. I love that our NSG doesn't shave heads - but then yea, it is always interesting working out the post op hair. lol!

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