Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, September 11, 2016

It's Complicated....part 2

I'm sure if you're like me, whenever something doesn't go as planned you always wonder about the "what ifs".... leaving later than planned, taking a different flight, or having something delay you leaving somewhere that proves to be beneficial.  In hindsight, that's exactly what went through my head about what happened on Saturday.
As I said, there was a delay finalizing Meagan's new rescue medication.  I decided to go ahead and get Meagan dressed.  I realized it had been several hours and she was still sleeping so getting her dressed would be good prep for going home.  Typically even if she's tired or loopy after a hospital event, she realizes regular clothes mean "going home" and will perk up a bit.  When I lifted her off her pillow to put her shirt on, she didn't even wake up.  Matter of fact, she was really dead weight.  I thought she was super tired so I continued to dress her and then packed up a few more things.  It was at this point that I noticed her monitors going off every now and then.  It was saying she was having momentary apneas (stopping breathing).  It caught my attention, but, I have had enough hospital stays with her to know that the monitors are also super sensitive and sometimes they do not always pick up the proper signal or breaths etc.  Nonetheless, it was odd she still wasn't waking with more energy, so I went over to see her.  Her open defects were huge.  Full and hard like she had a fully closed skull.  Now my alarms went off - something was not right.  She also looked so pale she was almost a greenish color.  Luckily, three nurses who have helped us with Meagan since she was 8 weeks old happened to be on that day and right outside our room at the nurses station.  Our nurse was wonderful but she had only worked with Meagan that one day.  I grabbed our three nurse friends and asked them to look at Meagan.  It didn't take more than one peek in the room for them to immediately realize she was not herself.  At this point, she was having longer apnea spells and was not breathing in again unless her back was vigorously rubbed.  Her heart rate was also dropping to 60 and not recovering well.  Her head was still hard - she was under severe pressure.  The nurses immediately called the rapid response team who came to assess Meagan.  Before I knew it she was being rushed up to the PICU.  I had Cara with me still (since she is still nursing, she has just stayed with me if Megs is in hospital).. but siblings cannot stay in the ICU so I had to call Brian to come back and get her to take her home.  Luckily one of our close nurse friends was there and instead of making me wait to see Megs, took Cara with her back to first floor to hang out with the nurses and wait for Brian so I could go ahead and get to Meagan.
When I walked in, there were a lot of people in her room of course.  Her heart rate was now in the 50's and she was still having frequent apnea and would not rouse.  Her head was the same and so neurosurgery was called. The on call came in and assessed the situation.  The resident had done a tap of the shunt (where they pull fluid) and it didn't come easily.... there was high suspicion that she would need surgery but the on call insisted on trying to turn down her shunt setting first (faster flow).  I agreed because of course if possible, I want to avoid surgery.  But in my gut I just knew we were headed there.
 After her shunt was turned down, I waited for improvement.  Typically with Meagan, you see a severe and rapid reaction.  She will immediately show you if it's going to help or not.  Sometimes we give 1-2 hours to see how things go, which is fair, and then if things improve, we move on.  If they don't, she goes to the OR.  This time, we waited.  And waited.   And waited.  1, 2, 3, and 4 hours passed.  Meagan was still having apnea and bradycardia...and then she started to writhe in her bed.  She wouldn't take a breath unless I or a nurse vigorously rubbed her back, legs, and torso to jostle her in to breathing.  She would roll and get puffy cheeks - I knew that meant she was going to vomit.  Pressure puke, as we so "professionally" call it.  And sure enough within mintues, she did.  Everywhere.
By this time, Brian had made it back to the hospital thanks to a friend staying with the kids at home.  Meagan continued to projectile vomit, this time it was a TON.  The nurses rushed in and were wonderful to clean her up.  They even wiped her down with pre-surgical wipes because it was obvious to them she would need to go to the OR.  They also continued to  monitor her vitals which were now deteriorating again.  Her heart rate was between 48 and 55.... she was continuing to have apnea, and now she was vomiting.  Her head? Still hard as a rock.  I was getting very concerned and finally asked the nurse to please call the on call NSG (neurosurgeon) again.  Word came back that he was in surgery with another case.  The hours Meagan had sat in her condition started to wear on me - I felt he did not realize how bad she had been all evening....because if he did, I don't see how anyone with surgical knowledge or a heart could leave this child in this condition for hours on end.  In all my years with her, in all my hospital stays and surgery needs, I had never seen her this badly ... I had never seen her in such a state with no relief to need the OR.  It sounds strange, right? Praying for someone you are frustrated with to take your daughter to surgery.. let alone brain surgery.  But she needed it badly.  I knew it and it really needed to happen soon. 
Finally,  the on call came down to look at Meagan... still the same but deteriorating and still vomiting.  She had so much pain - she was moaning and writhing in her bed still as if she was trying to get away from something or the pain and would press her head against the side of her bed.  He agreed she needed to go to surgery...FINALLY.   Meagan was prepped for surgery and taken to the OR.  1am.  It was about darn time.  Brian and I walked with the PICU nurses as they rushed her in, we signed the papers, and off she went.  Then, we waited.
A few hours later, the on call walked in to our room.  He explained that her top valve, the high pressure valve, had a rip in it and was not working correctly.  He told us he replaced the top valve and that hopefully she would start to feel better. Shortly after, the OR nurses brought Meagan back to the room.  She was rough, but, stable.  Once all the vitals and checks and notes were finished, I crawled in to bed with her and snuggled.  Her hair was matted with three sets of incisions and staples and gooey medicine, her body was weak from the anesthesia and her coloring was faded....but she was there.  She had come back to fight another day and I just hugged her and thanked God for my sweet baby girl.
The next day we already saw improvements.  Meagan's vitals were stable (for the most part), she was starting to talk again and her coloring was coming back.  We decided it was safe enough to move her down to the neuro floor that afternoon.  Her heart rate continued to dip a little lower than desired....but if my body had been under the pressure she had endured those 10 hours, I would be the same way. They decided to watch her overnight and if all was ok, she could be discharged the next day. I was glad because that meant 1. We would feel a lot safer taking her home...and 2. Dr. R would be back the next day so I could discuss with him the events of the weekend and concerns I had going forward.
Tuesday morning, Meagan didn't really want to get up.  I knew she was tired, but I wanted to be sure she was ok to go home.  I tried to wake her up, her favorite nurses came to visit and I tried to bribe her with going to the hospital store.  All she would say is "I want to sleep." I finally decided I needed to make her get in the wheelchair and go walk around for a little bit. While the nurse was seeking out a wheelchair, Dr. R and Blaire came by.  We chatted about what had happened and I got to speak bluntly about my concerns and how things had been handled the previous day - I will leave all of the details between Dr. R and me, as it should be.  But know a serious conversation was had - and I think, or at least hope, we came to a mutual agreement and understanding on Meagan and the "status quo" when it comes to her treatment, especially regarding the hours she sat under pressure.  We were able to share perspectives, and I pray that eyes were opened a bit more to what we as the actual parents go through and have to endure .......and why it is SO imperative for our medical team to trust our instincts when it comes to these amazing kiddos. No one knows Meagan better than I do.  And when something is wrong, that trust has to be between the surgical staff and me there so I can get her the help she needs efficiently and quickly.   We will return in a few weeks to get Meagan's staples out, so I will ask any more unresolved questions at that point.

This past Thursday, I was driving the girls to dance class - instead of our usual back and forth about school, or talking about something irrelevant, or singing loudly to music on the radio, there was an eerie hesitance in my car.  The girls were randomly mentioning what they remembered from the week before.  As I drove by the highway connector, I saw the very spot I was with Meagan laying on the ground vomiting and seizing while we desperately waited for an ambulance that never came.  I saw the exits pass and remembered how each mile seemed to crawl by when I was driving.  Then I happened to look in my rear view mirror.  Meagan was smiling and laughing at something silly Maura was doing.  She was singing along to the songs on the radio, and she was beaming. She had once again, defied a precarious situation, and come out strong and ready to take on life again.

Meagan's latest episodes seem to have a 4 week pattern... I'm hoping with this valve fix, that we have solved the stress on her body which seemed to precede or trigger these events.  I will definitely be holding my breath until the end of September passes with no major events.  Of course, even if it does, I don't think we will all ever be the same.  These last few episodes Meagan has had greatly impacted our family and our security in her stability.  We always promised Megs happiness, love, and life experiences.  We will continue to do our best to ensure our promises stay fulfilled.  But even if the next four weeks pass and we avoid another catastrophic event, I don't think I will ever be the same.  The best I can say to that is....... it's complicated.

We love you Meagan and are thank God everyday that He pulled you through these last few months.  We cannot wait to celebrate your big milestone of turning FIVE in the next few weeks!


  1. So scary! I'm glad she is OK for now. I hope this resolves the issue for a good long time.

    We went through something similar last spring. We thought Ellie just had strep throat like her sister so we held off going to the hospital. When I couldn't wake her at all a few hours later we ended up in the PICU with her HR staying in the 50's. It was really scary. They also waited until morning to do surgery. It is frightening how quickly things change. Just the night before she was 100% completely fine.

    1. Yea, I was NOT happy about them waiting over 9 hours to take her to the OR.... >:/

  2. I can imagine. Meagan seemed to be in much more distress than Ellie, I would have been pitching a fit as well. Thankfully, Ellie just slept (what appeared to be) comfortably. Almost as if she was unconscious. She didn't even flinch when they put in the IV (and she normally freaks out). They drew fluid out of her shunt manually with a syringe and booked her for first thing in the morning. The worst part about the whole ordeal was that she quit talking or responding to people afterward. She would stare right through everyone as if they didn't exist. It was so scary, we thought she lost the ability to talk. About 12 hours after surgery I walked back into her room after getting some food and she looked up and said "Mama" in the sweetest voice. I cried. After that she would talk to me, but would continue her blank stare when any staff would try to talk to her. I guess she was over it (she had just had a revision the week before this whole incident).

  3. she is very blessed to have you so on top of things you could have lost her so fast hope she is doing better!