Expect the Unexpected

Another post from Children's.  I thought we'd be home by now, but, of course, that is not the case. 

They have been trying to get Meagan in for an MRI since Thursday now... I was ok with the waiting because she had to have her 2 day EEG anyway..... so today her MRI finally got scheduled.  They told me to not nurse her after 2am so she could be sedated and go for her scan. So I set my alarm for 1:30am.  I woke up, changed Meagan, and nursed her.  She went back to sleep nicely (Daddy brought her bouncy seat down to the hospital thank goodness!) and I woke up at around 5am to get in the shower. The nurses had said that MRI would probably be calling up around 6am so I wanted to be ready for the day.

Around 6:30am, the nurses came in - they actually had to draw more labs because yesterday, Meagan's bloodwork results got messed up by the lab.  Her doctor actually told us the lab had messed up about 4 kids results! So all those poor kids, including Meagan, had to get stuck again for new labs.  I asked about the MRI and they still hadn't heard. 

A little while later, lab showed up AGAIN.  My goodness, what this time.  Turns out... her previous draw that morning had clotted... so she had to get stuck. Again.  I asked about MRI again and no answer yet.

Finally around 8am the nurse came in - she said that they were ready for Meagan downstairs.  When I asked about sedation, she said actually if I could nurse her when we got downstairs and then they'd wrap her really tight, they'd just do the MRI that way so she didnt have to be sedated.  So once we got downstairs and settled in, the tech came in and told me they were ready for Meagan ... so to go ahead and feed her.  Then once she was nice and full they'd wrap her tightly and get her MRI started.

She ate really well and fell into that "full belly" sleep.  I burped her and she was nice and full and fatigued.  The tech came in and bundled her really tight and then gave her back to me and we waited.  And waited.  And waited.  45 minutes later, they came to get us.  I KNEW this wasn't going to work - they had waited too long.. Meagan was going to not tolerate the noises and bumps of the MRI this far into her sleep.  Sure enough, she woke up about 5-10 minutes in to it ... and started to scream.  They could not complete the scan because she had to be extremely still - so back we went to the room - for another 4 hour fast - so they could bring her back down in the afternoon for sedation.

Meanwhile, I was asking about the MRI results - could we get the results tonight or would they call us..etc.  The nurse came back in and said actually since the MRI got moved to the afternoon, we'd probably get the results in the morning because they had no one to come reprogram her shunt during the night.

We were finally called down for her sedation at 1pm.  We got downstairs and the nurse went to flush Meagan's IV.  No go.  She looked at it - and somehow, (how I do not know because it was wrapped and padded SO well)....her IV had become bent and came out of Meagan's hand. She needed to have another one placed, which was heart wrenching to me.  Meagan has very tiny squiggly veins - she was a hard stick in the NICU.. and she has been ever since.  It always takes nurses several attempts to get a good line in - and I hate seeing her stuck all over the place.  The nurse decided to call someone from the PIC team - they deal with hard sticks all the time and so perhaps it would be easier on Megs.  The PIC team nurse did get a line in Megs on only the second attempt .. so I was very glad for that. 

Next the sedation doctor came in and talked to me about what would go on - and then they got started.  I carried Meagan into the MRI room, laid her on the table and then as they started the sedation the doctor told me to give her a kiss and they'd get me when she was finished. 

I hadn't eaten yet all day.. so I went downstairs to grab some lunch.  I called Brian to update him on what was going on and then headed back to her room in Radiology.  When I walked in, Meagan had just been brought back to the room.  She was still out from the sedation and on the monitors.  The nurse was concerned because she said Meagan's oxygen levels had gone down quite a bit a few times until she put oxygen on her.  Meagan's heartrate was also dipping down into the high 70s and 80s and staying there.  She normally wont' go below about 115.  So this was all new for her.  The nurse called the doctor in because this pattern continued for well over an hour.  The doctor was a bit concerned that she wasn't recovering her numbers and keeping them stable so he called our Neurologist and asked him to order Meagan on the monitors for the night. Honestly, I was fine with that.  If you'd seen how she looked... it was pretty awful.  I knew I'd sleep better too if she was being monitored - and we're here another night anyway, so why not.

We got back up to our room - Meagan did nurse a little and then I put her in bed to rest.  She looks and feels just utterly exhausted.  She had another seizure cluster this afternoon - including two in front of nurses.  So I'm trying to be patient and gave myself a "goal date" of the first week in February to see if I notice a decrease in the seizures.  During one, the nurse was doing Meagan's vitals and even flashed a light in her eyes. No response.  Her head went side to side and her eyes rolled.  After about 2 minutes she focused on the nurse again and stopped moving her head. Since 9am today she's had 12 seizures, including the clusters this afternoon. UGH!  It hurts my heart to see her like that.  I'm really hoping this new med kicks in during these next few weeks and I see improvement.

So now we are settled in for another night.  Meagan is on the monitors... she is quite a bit fussy, but I'm sure it's because of her shunt.  No one can reprogram it until tomorrow morning... and her shunt site is already pretty poofy and tense.  I'm sure she's having discomfort and head pressure, so hopefully morning comes quickly.  We should also find out the MRI results tomorrow.. I'm anxious and excited.... anxious there might be something there we haven't seen before or that her extra cyst hasn't shrunk ... but excited to see how much lovely brain tissue has decided to fluff out.

   Meagan wouldn't stop seizing tonight unfortunately... so after she had over 6 in less than 2 hours, the Neuro ordered some rescue meds for her.  Once the nurse gave her the Ativan, she calmed down over about 30 minutes... she did nurse a little then, and fell asleep.  She is now resting comfortably. 


MRI fail, IV getting pulled out, IV put back in, MRI redo, three lab draws, not recovering well from the sedation, no one here to reprogram her shunt, repetitive seizures.... it was quite an awful day.  But at the end of the day, I have to say I'm thankful Meagan is snuggling here with me and that she has pulled through yet another set of challenges.  She is a pretty awesome kid.

One of the nurses brought a light toy while Meagan had her long wait.

Daddy visits and gives the best snuggles

Such a long trying day... and such a trooper she is!