Hospital Update #2

Meagan's MRI went well yesterday.  She handled the sedation well and while she took a little longer than usual to wake up, she did wake up fine.  The first thing she said when she woke up is "Go to bed!!"  She has started to say this referring to her hospital bed.  She knows when she is in her hospital bed, she is basically resting.  She knows when she leaves her bed, it's for some sort of test.  Smart kid.

When we got back to our room last night following the MRI, there was a technical problem in the room, so we were informed we had to move next door.  Meagan was an absolute mess.  By. the time we had walked up she was in complete meltdown mode.  As we moved rooms she became inconsolable.  The bad day she had, the MRI, the sedation and just feeling "blah" all culminated in an epic meltdown.  We were very lucky to have a tech and Nurse who know Meagan really well so once the new room got settled, they advised everyone else to just exit and let Meagan be with me alone to calm down.  (Love nurses like that!) Even doing that it took me a good 20-30 minutes to calm her down.  She was flailing, arching her back, and almost throwing herself off the bed.  After a big bear hug by mommy to keep her safe, and lots and lots of talking and trying to redirect, she did start to calm and soon she was snuggling in my arms.

The first floor nurses are so amazing with Meagan.  Many of them know her well, but even the new trainees seem to be following in the pattern of being good with her.  They even took Olaf's blood pressure (zero!) and temperature (freezing!) to help Meagan be more calm when getting her vitals done.

We decided to go ahead and try another feed at a slow rate to get her some food and see if she could handle it overnight.  The first part of the night was a bit crazy.  She was calmer as far as screaming, etc... but she was extremely restless.  She seemed like she just couldn't get comfortable.  She held her eyes a lot, not crying, but just wincing and squeezing her forehead like she had a headache.  Luckily later on, daddy stopped by which always helps.  Meagan is SUCH a daddy's girl.  Even if she's feeling badly, when daddy comes in, she lights up and just wants to snuggle him.  He stayed and snuggled for a few hours.  It was helpful to have him here to give her some love and also sit with her while I went out front to meet my mom and the girls.  They had driven down to bring me some fresh clothes and so I could have a quick visit with the older girls.  I'm so thankful my mom rearranged things at work to drive down from DC a few days ago so we didn't have to rely (and pay for) babysitters.  It helps to keep things so much calmer at home.  My mommy heart strings were tugged at, though,  last night for sure when I saw the older girls.  I reached in the car to give each one a hug and when I got to Reilly, she just buried her hands in her face and cried.  I reached in and grabbed her and just put my arms around her and told her I loved her and missed her.  Being the oldest is hard sometimes (I know, I'm an oldest child too) because so much is expected from you.  As the oldest typically you are "wiser beyond your years" in many ways... but in those tough instances when you are supposed to be that way, you just want to be little and have hugs and kisses and support from mom.  I knew Reilly was feeling this yesterday.  I comforted her, but then she was such a big girl and said she knows I needed support, not another "baby" as we already had Meagan to be concerned about.  She's a little toughie.  So much to balance and process for a 9 year old - but I am so so proud of her.  I told her she can have hugs whenever she needs to and to be strong and help Nanny (my mom) with the other girls and all the special things I normally do at home.  She dried her eyes and was ok when they left.

Brian left as it got later in the night so he could get home to be with the older girls and help.  Meagan continued to be restless through much of the night, tossing and turning, and finally around 1am she did fall asleep.  I was glad because as selfish as I think it sounds, I was exhausted too! We both snuggled and slept until about 4am.  Meagan woke up and was upset and restless again, and then again, she fell back asleep until about 7am.  At that time, the resident NSG came in and talked things over with me and said Dr. R would be by shortly.   When Dr. R came by, we talked about Meagan's MRI.  For the most part, her MRI was stable.  There are a few changes here and there, but nothing he wants to rush in to surgery for considering everything she just went through in June.  Moreso, the surgery most likely needed (Chiari again) is quite dangerous at her size and we want to buy as much time as possible before that becomes necessary.  Of course we don't want her hurting, but, to be honest, if we have to deal with a bit of fussiness and some bumps in the road, and  if we can help manage that with her new shunt system to at least provide temporary relief, I'm all for that to help her get even bigger and stronger before a surgery like that happens. Of course we don't want her feeling badly but if we can improve it through managing her pressures, I'm on board with that.  If over time she becomes so bad she is miserable daily, or we see a big dip in major skills or basic functions, or an increase in seizures, of course we will revisit that conversation.  Dr. R then turned Meagan's programmable valve up pretty high and said the plan for today is to wait and watch.  If she can handle her feeds and her mood improves, he is willing to possibly let her go home tonight.  He said she has to have improved behavior though and be able to sit up for a prolonged time and be happy/play like her usual self.

Meanwhile, we saw GI - they concluded that Meagan definitely does not have any GI issue as a "primary problem".. .in other words, no "thing" we are missing that needs to be diagnosed or treated.  GI's conclusion is that all her GI issues are always a symptom of neuro problems or her issues with pressure changes.  They did decide to keep her on the Nexium (she has been getting it through IV here) at home just to protect her esophagus if she gets sick when she has pressure issues again, but that's the only change they are making.  As of now she is on slow feeds - only about 50-60 an hour to help her absorb more nutrition. (Originally she was on bottles, boluses, and the occasional pump feed at home).  GI recommended continuing this until she is really settled in to the new pressure setting Dr. R set so her neuro issues can really settle out and then if she's doing better over the next few weeks, gradually increase her feed rate as we feel necessary.  He said it may be that she will always struggle with GI complications when having brain pressure issues just since she is so extremely sensitive, but that they will work together with us and NSG to make sure she is handled the best way possible for her GI health.  I was very happy with the conversation and am thankful she has such good GI doctors who really vet the situation before slapping on new diagnoses or medications unnecessarily.

So today we will see how she does at this new setting and hope for improvement as the day goes on.  I'm hopeful as she seemed to tolerate her slow feed overnight and we have seen no more seizures since Wednesday. She still won't take her bottles which is odd because it's really been her main comfort for almost three years, so I'm hoping as we get more settled we will see her want the bottle again.  Fingers crossed! Again thanks for all the thoughts and prayers.  Meagan is very lucky to have such special family and friends.  We will keep you posted if she can head home later tonight!

Meagan had a very special visitor yesterday...Olaf!

 The perfect gift from Ms. Lori, who has been by Meagan's side since birth... 

Olaf  even took a second to grab a selfie with Megs :)