Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, December 31, 2014

Snowball: Post Op News

The night before surgery was challenging.  Dr. B wanted to clamp Meagan's EVD (meaning he would stop it from draining) as much as she would allow.  He was going to let her reach a pressure of 20 for five minutes before the nurse would come in, drain off some fluid to give her relief, and then clamp it all over again.  When the nurse told me the plan, I did laugh.  Not because it's silly - I get what they were trying to do.  Meagan has slit ventricles, so they were trying to puff up her vent overnight with more fluid to make catheter placement safer and more successful.  I laughed though because Meagan produces a ton of fluid - the poor nurse would be in our room every ten minutes letting the poor kid drain off.  I was pretty close with my projection.  Meagan would creep up to 20 over 10-15 minutes... and then suddenly would shoot up to 25, 28, 32, 49.. you get the pattern.  The nurse would run in, drain her off, get her more comfy and stable, and then we would start the whole process all over again.  It was definitely a very tiring night!

Surgery was scheduled early, thankfully.  Meagan did well with the anesthesia and Dr. B was able to give us a report afterwards.  Of course he tried to get the catheter in the larger fluid space towards the back of Meagan's right ventricle so it would be most successful.  He flushed her distal end and it needed to be cleaned out.  Then he flushed the proximal he had just placed and it worked ok.  He was about to close her up when he noticed pools of fluid coming back at him.  He was shocked as he had just tested the catheters so he tested the valves.  The valve in Meagan's head was a bit finicky so he replaced that one.  However fluid was still pooling.  Upon closer investigation, he realized the tiny bit of catheter between the two valves (that connects them in succession) had a hole in it.  Fluid was pouring out - or in his words, squirting.  He took that part out, replaced it with a new catheter and closed her up.  Because of the catheter hole, Meagan had to have another small incision in her neck.  I know it's necessary but I just hate that because it's such a sensitive and pliable area that it cannot feel good at all.  I was glad Dr. B had found some of the problems to fix and from then on we knew we would have to wait and see how the catheter placement panned out.

Relieving pressure - a constant battle all night

Meagan did pretty well through the first post op night.The neck incision is so sensitive and has now been opened three or four times, so I did ask the nurse to call the neurosurgeon for one dose of a heavier pain medication.  Typically post op, I let them switch her immediately to Motrin so we don't have any of the heavier stuff, but with that neck, I know it is incredibly sensitive and painful. I didn't need her to have morphine but I did want something in between to bridge the transition from surgical meds to Motrin. The on call prescribed one dose of Lortab to take the edge off. The nurse and I decided the evening would probably be the best time to give it so she could rest comfortably as the surgical meds wore off.  Meagan got her seizure meds and her Lortab and slept comfortably.  I could definitely tell her neck was bugging her - she didn't want to move it or roll on that side, but at least she had appropriate pain control for the night.

As the day went on, she continued to sleep.  Dr. B came by and was happy with her incisions and the result of the surgery so far so we agreed to watch her and let her rest.  She slept and slept and slept. Throughout the day her nurse and I tried to wake her up.  She would either yell, get upset, or sometimes would say, "No wake up! Say goodnight!"  It was kind of hard not to giggle at that response   I was honestly just happy to hear her speaking fairly well even if she was mad.   Finally around 1700 she woke up for a little bit on her own.  She was calm and happy.  She asked to look at my eyes, touch my hair, hold my hand... then she asked me the color of my hair, the color of her hair, eyes, etc...the typical Meagan "20 questions."  After about 15 minutes, she grabbed her blanket again and put her pacifier in and started to doze off asleep.

Typically, sleeping this much (two days now practically) after surgery isn't normal for her - especially with shunt revisions.  Her last revision she was down the hall at the hospital music therapy class within 15 hours of her surgery.  But I do have to remember this time was quite different.  She's not only had 3 surgeries since a week ago Saturday, but this past Saturday night was quite an ordeal for her.  I'm sure her little body is just tired and really needs the extra rest. She was comfortably resting until about an hour ago.  She was trying to talk to Brian on the phone and I noticed her speech was becoming slurred again.  Her eyes were shaky again.  She still had head control, so I was relieved.  But we will be watching her closely tonight to make sure this isn't Saturday night repeating all over again.  Ugh.

She is scheduled to get two more IV doses of antibiotics and we will talk to the neurosurgeons in the morning to talk about a timeline for going home.  I'm hopeful that it can be sooner than later as long as she wakes up tomorrow happy and comfortable.

Of course as we sit here, Meagan is yet again spending another holiday/celebration/birthday in the hospital.  My husband and I were almost laughing about it the other day - going over the last year, we realized that Meagan has had emergencies or surgeries on our 10 year Anniversary, our summer vacation, her own 3rd birthday, the week before Thanksgiving, the week before Christmas, Christmas Day, Brian's birthday, and now heading in to New Years Day.  We joked that maybe we shouldn't tell Meagan of any special celebrations, birthdays or holidays anymore! She seems to have a knack for keeping those on her 'radar' when she's about to have a problem manifest.

At home, things are going well.  The girls are fairly well distracted and keeping busy.  Brian finally got to go out for his birthday dinner at our usual Mexican restaurant.  (He had waited to see if Meagan would come home in time to go).  The girls got to go on a silly shopping trip with Daddy where they all got to pick out "just for fun" glasses.... Brian texted me their pic with the caption "sass"... Uh, yea.  I think he's spot on.  haha

Celebrating Daddy's birthday dinner - finally.

Silly and sassy.. 

It's not ideal of course to be sitting here on New Years Eve.  I would of course much rather be at home with my whole family together.  I know Brian has made an awesome array of appetizers for everyone and we would be watching Xavier basketball and New Years Eve celebrations on TV.  It would be fun to stay up with my all of my kids and watch the ball drop and to visit one last night with my parents while they are here.  It would have been fun to make it to Florida to visit Brian's family and spend time with them as well.  But I know they are all having a good time together and that Meagan is in the best place here.  The joy of an iPhone is that I get to see what's going on even if I can't be there, so I can still somehow feel involved.

Brian's an amazing cook - he had ribs smoking outside for dinner! Yum.

We are hoping Meagan perks up more tomorrow and we can start moving forward.  2014 has been quite a year - a lot of trials and tough times both physically, mentally, emotionally and financially. A lot of tough decisions.  A lot of shocking news. A lot of trials for the family.  Some of those struggles are over, some are not. Some are but may have lingering effects. There were a lot of great moments and memories too, for which I'm thankful.  I'm ready for a new year and a new start - and hopefully a lot less hospital stays/surgeries for miss Meagan! But I also am grateful for 2014 - all of it - because nothing that happened, no matter how challenging it was, is regrettable.  Every event and trial led us to where we are now and gave us the strength to go into tomorrow with a smile on our face.

Happy New Year's Eve to our family, friends, and Meagan's followers.  We hope everyone is having a wonderful and joyful time with their own families. Hopefully we have good news tomorrow about getting Meagan home.

Reilly being such a big girl - helping Nanny and 
Pop Pop make pancakes for the crew!

 When you're bored in the hospital... you take funny pictures and caption them.

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