Thursday, May 15, 2014

A memorable Easter

Bonnie had a rough week around Easter.  She's doing *great* now, and if you want the abbreviated version of this story (which, thank you Jesus, has a happy ending), skip to the end.  Otherwise, hang on tight for the play-by-play.

Friday, April 18th: 
It was Good Friday, so daycare was closed.  I had the kids with me at home for the day, and it was pretty uneventful until dinnertime.  Bonnie was eating and did a little gag/cough maneuver that ended in some vomiting.  Nothing major, and she does that on occasion, so no big deal.  After that, though, she started acting like she didn't feel great, so I put her to bed early. 
About 15 minutes later, she was throwing up in her bed.  I thought, "Oh great, here with we go with another stomach virus."  Changed her clothes, sheets, etc.  Back to bed.  Another 15-20 minutes later, throwing up again. Change sheets, clothes, etc., and back to bed.  Repeat every 20-30 minutes for the next 3 hours.  Jonathan and I discussed taking her to the ER but decided to see how she did overnight. 
She's had a couple stomach bugs recently, and every time she starts vomiting, I worry that it's a bowel obstruction (a relatively common complication for CDH kids due to scar tissue from having their guts manipulated during repair surgery).  The thought definitely crossed my mind that night, but she had had a normal bowel movement earlier in the day, so I figured the likelihood of bowel obstruction was probably low.
She slept okay-ish through the night, but would cry and whimper occasionally. 

Saturday, April 19th:
She woke up around 6:30 and wanted something to drink.  She only ever drinks 5-15 ccs (less than half an ounce) at a time, so she had a tiny bit of water by mouth.  She seemed really sleepy still, so I rocked her for a little bit and gave her small amounts of water through her tube while she drifted back to sleep.  About 30 minutes and 3 ounces of water later, I tried to lay her back down in her bed.  All the water came back up.
Went to the pediatrician and said, "I just need you to tell me this isn't a bowel obstruction."   She felt like it was just a stomach virus (based on how suddenly it came on), but said if she started acting more lethargic or started vomiting bile (bright green), to take her to the ER.
The rest of the day, she just wanted me to hold her, and she slept a good bit of the time.  She had no interest in eating, but I gave her 5 ccs of water every so often just to keep her hydrated, and she didn't throw up for a good chunk of the day.  By mid-afternoon, I thought it would be safe to give her 5 ccs of water every 5 minutes (that's two ounces an hour).  I was holding her and she was in and out of sleep, but this genius plan of rehydration went well for about an hour.  Around that time, Henry and Jonathan got home.  When she heard their voices, she perked up and hopped out of my lap to see them.  And then she threw up. Bright green.
So off to the ER we went.  Everybody who worked there got my spiel about her history of CDH, how she's at higher risk for bowel obstruction, etc etc, and how we weren't leaving until somebody proved to me that it wasn't that.  The ER doc checked her out and mashed on her belly, which didn't seem to be painful, and on that basis he felt like it wasn't an obstruction.  He gave her some IV fluids and they did an X-ray.  It came back somewhere between "reassuring" and "inconclusive," depending on who you were talking to.  At some point during our ER visit, she threw up (bright green) again.  She got a dose of Zofran (anti-nausea drug), which seemed to help her rest a little bit.  Around 11:00 p.m., ER doc decided she needed to stay overnight for observation.

Sweet girl getting fluids in the ER

Sunday, April 20th:
She got admitted to the pediatric floor right at midnight.  Refused to let me put her down, so she slept next to me on the little pull-out chair/bed thing that's exactly as comfortable as you would expect.  I'm pretty sure I didn't sleep at all that night, because she was squirmy and crying in her sleep, and around 3 a.m. threw up again.  When the sun came up I made a mental note of the fact that it was Easter Sunday and probably a lot of people around town were up and going to sunrise services right at that moment...there was some strange comfort in that.
Around 7 a.m. the surgery resident came in and said he noticed a couple things on the x-ray that he was concerned about.  My thought was that of course her x-ray is screwy, since her guts were all rearranged when her diaphragm was repaired.  But all her old x-rays are three hours away in the hospital where she was born, so he wouldn't have been able to see them to compare.  Anyway, he said he'd check with the attending surgeon and we'd go from there.  Meanwhile, Bonnie throws up (again, bile) a couple more times and is generally acting like she feels terrible.  The general consensus at this point is that it's a stomach virus, which can cause decreased motility of the intestines...which then leads to stomach not emptying, which leads to  vomiting.  Interesting thing is that she hadn't had anything to eat or drink by mouth (or tube) in about 18 hours, but she continued to throw up.  Her IV fluids were running at a good solid rate, but she wasn't peeing either.  I asked the surgeon about this later, and he said that when your GI tract is inflamed, it will steal water from your veins (basically).  Hence the ongoing vomiting and lack of pee.
At some point in the late morning they took her down for an upper GI (give her some contrast liquid via gtube and watch on x-ray to see where it goes).  During that procedure, the radiologist seemed to think things were moving along fairly well.  At hour intervals afterwards, they took another x-ray to see how things were moving.
I suspected something was up because the surgeon came in a few times and would just watch Bonnie for a few minutes at a time.  But I *knew* things weren't going great when he came in, sat down in a chair, and asked the nurse to turn the TV off.  He had talked with the surgeon on call in Charleston and compared notes on previous x-rays versus today's. "We think she reherniated."  Wait wait wait WHAT?! Tears. Losing it. "I hope I'm wrong. We're going to get one more x-ray to be sure.  But we might be looking at a transfer to MUSC."  (To review, we live 3 hours away from where Bonnie was born and had her initial repair surgery. The thinking here is that it would be better for her original surgeon to do a second repair.)

Not doing well.
So that "one more x-ray" came back and confirmed that she did indeed reherniate.  A few loops of intestine had gone through the hole in her diaphragm and gotten stuck, causing a bowel obstruction. (Stomach virus theory was now abandoned.)  It's never good when body parts get trapped.  Blood supply can get cut off, tissue can die.  In the case of intestines, if a part dies, it can rupture, and then you're *really* in trouble.
The question of whether or not to transport to Charleston was resolved when the surgeon decided (based on increasing lethargy and little to no urine output) that Bonnie wasn't stable enough to transport. I.e., she needed to get to surgery as soon as possible and would lose too much time in the transport process.  She was *sick*.
She went back to surgery around 4 p.m., and we were told it could take awhile. We got updates every 45 minutes or so, and by 9 p.m., she was in recovery and we were chatting with the surgeon about how everything went as well as it could have.  None of the scary complications he had warned us about.  The incision was technically in her chest (as opposed to her abdomen), but from a lay person's perspective, it's more on her side--wraps around from the back to the front.  He was able to get her bowel back where it was supposed to be and stitch her diaphragm back up.
When we got to see her in PICU, it was about 11 p.m., and she looked like this:

It wasn't super fun to see her with all this medical paraphernalia again, but unlike her NICU days, this was a recover-from-surgery situation versus a fight-for-your-life situation.  Plus, she actually looked better to me at this point than she had prior to surgery.  Her color was better, and she seemed so much more peaceful.  A lot of that might have been the propofol (happy sleep drug), but whatever.

Monday, April 21st:
Chick slept all day. Thank you happy sleep drugs.  The original plan was to extubate her and let her wake up, but they decided to let her heal and rest for one more day.

Tuesday, April 22nd:
Wake up day!  The surgery resident (who, surprisingly, I really liked) pulled her chest tube in the morning, and around lunchtime they took her off the sleepy drugs, extubated her, and let her wake up.  Here's a picture of Mama snuggles when she was still pretty groggy:

A couple hours after the above picture was taken, our amazing child decided she wanted to go for a walk:

And check out the aquarium:

Later that afternoon she got moved from PICU to the pediatric surgery floor, and big brother Henry came to visit:

Unfortunately, she didn't sleep very much that night. Like maybe 3 hours.

Wednesday, April 23rd:
And she didn't nap on this day.  By bedtime, she was a zombie. It was actually a little scary.  Thankfully, she passed out at bedtime and slept reeeeally well.

Thursday, April 24th:
Woke up to this precious face.

And in even better news, the surgeon said she could eat! What better way to break a 6 day fast than with hospital peas? Yummy.

Okay, seriously? How cute is she??

Friday, April 25th:
Wasn't expecting it, but mid-afternoon, her surgeon came in and asked if we wanted to go home. Yes indeed!  Here we are all set to bust out.

From then til now:
It took until about ten days post-op for her to get off the pain meds, but after that, chick was totally back to her old self.  Eating really well, even drinking more.  Climbing on and jumping off furniture. Her recovery has been amazing.

Some more thoughts:
We could not have loved Bonnie's surgeon more. Dr. Jimmy Green. If you're in Greenville (and a kid, and need surgery), he's your man.  He prayed with us before and after surgery, and he took *such* good care of her.  Even though it was scary how sick she got (which kept her from being transported to MUSC), we were so blessed by having Dr. Green as her surgeon.

A few people have commented how it was unfortunate that all this went down on Easter Sunday.  But really, it was probably the best day for it to happen.  If God raised His son from the dead, He was certainly going to watch out for Bonnie.

If you're on Facebook, you already lived through this with us.  But I want to say another thank you to everyone who loved Bonnie and us so well.  Local CDH mama friends (love y'all!), church folks, coworkers, friends. Thank you for your visits, prayers, snacks, dinners, and gifts.  It was all so very appreciated.

****And the short version, as promised.  Bonnie's diaphragm reherniated, causing a bowel obstruction.  She had to have repair surgery on Easter Sunday. By that Friday, she was well enough to go home. Glory to God.****

Sunday, February 2, 2014

Another February 2nd

February 2nd has been an important day to me for two years now.  It's the day in 2012 that Bonnie was diagnosed with CDH, when she looked something like this:

She's been through a thing or two since then, and has now become my crazy post-nap hair, cracker-eating sofa companion.  These are from today. 

She's been doing pretty well since my last post, with a cold or ear infection thrown in here and there.  That's one side effect of being in daycare, but she's handled her illnesses like a champ (i.e. no need for extra oxygen or hospitalization) and is learning a ton, so I think it's worth it.  

On a daily basis, she reminds us why we've nicknamed her the Villain.  She's a climber and gets into everything (loves to knock the clock off the TV stand to where we can't reach it, if you want one example), and when we try to correct her or tell her no, she starts giggling about it. 100% villain behavior.  Not real sure how that's going to work when she's a teenager, but we'll cross that bridge when we get to it.  She's also got a temper and can throw a *serious* tantrum.  She's still a little behind on her language skills, which causes frustration, which leads to a lot of screaming and stomping when we can't figure out what she wants.  She's in speech therapy and is making some good progress, so hopefully her frustration will decrease as her language increases.

Having said all that, she is so much fun.  She loves animals and making animal sounds.  Her favorite seems to be cats--"mao! mao!" (as in Chairman).  My personal favorite is her snake sound--"tssss!"  She also loves to dance.  She wants to do anything her brother is doing.  Four seconds ago, for example, she was bonking me on the head with a piece of cardboard because she had just seen him do it.  She loves books, loves her blanket, and is a champion sleeper.

Here are a few more recent photos.

Henry was in time out for some infraction against Bonnie.  She came over to visit.

Helping out with the Christmas lights.

Bonnie and Zander.

Mama and Bonnie.

Furious baby.

Happy baby with a book!

Doing some reading.
Hard to tell with a still shot, but she's dancing here.

So, happy February 2nd, everybody!  We have lots to be thankful for.