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Thursday, September 19, 2013

Thankful Thursday

Lately we've been very overwhelmed by life in general.  Learning to be parents while also dealing with an infant with a medical condition has been by far the most stressful thing we've ever been though.  After 8 days, Megatron came home from the hospital after his surgery.  We are still in a "wait and see" period as to if the surgery was a success but he is doing really well.  We are cautiously optimistic.

We've also been incredibly thankful.  That thankfulness is something I'm trying to focus on.  It helps me stay focused on the positive rather than the overwhelming stress.  And as a list maker, I made a list to help me stay focused.

So thankful for (in no particular order):
  1. Nationwide Children's Hospital and the amazing staff.  Especially the PICU nurses.  The overnight nurse never left our room.  Megatron was his only patient and he walked us through everything and reassured us each step of the way.  We're also very thankful to have a world class children's hospital right in our backyard.
  2. Our pediatrician.  While Megatron's surgery and GI issues are being addressed by specialists, our pediatrician was the one who stayed on top of the lab results those first couple weeks of his life and made the call to send us to a specialist.  She also showed up at the hospital while Megatron was in surgery and waited with us.  She was there when the surgeon spoke with us (and then translated the medical mumbojumbo for us) and she stayed with us while Megatron was taken from surgery down to the PICU.  She explained what we would expect when we saw him for the first time which definitely made it a lot less scary.  And did I mention that this was all after she worked a full day?  I'm sure it was after 10 pm when she left the hospital.
  3. Our families.  They have been with us each step of the way since Megatron's early arrival.  Both sets of our parents were with us most of the day while Megatron was in surgery.  My brother was there also.  My sister-in-law was with my niece and nephew so my brother could be with us.  My niece and nephew made cards for Megatron to cheer him up after surgery.  I think we both would have cracked under the pressure without their support.
  4. Our friends.  I cannot even begin to explain how touched I am by our friends.  They stepped up in ways that have often left me speechless.  They have dropped off meals, snacks, hospital care bags, even gift cards to use at the cafeteria in the hospital (8 days of meals in a hospital can add up!).  They helped feed our cats, take in the mail and bring the trash cans back to the house.  They sent cards and emails full of encouragement.  They texted and sent Facebook love.  They added us to prayer lists.  They visited us in the hospital.  I will never be able to repay them for everything they have done (and I'm sure will continue to do as we go through the recovery process).
  5. A 12-week maternity leave.  I'm still on maternity leave.  Not having to even think about trying to work through all of this has been priceless.  I don't think I could have done it!  It has allowed me to be with Megatron through all of this without even thinking about working around a work schedule.
  6. FMLA.  The Pilot took 6 weeks of leave after Megatron was born.  We decided to have him take an extended leave, even though it was unpaid, because his job is so unique.  It's one thing if he went to work and came back each night.  I wouldn't have the luxury of getting a break each evening if he worked a normal 9-5 job.  The Pilot going back to work could mean me being on my own with Megatron for days at a time.  So to help us all figure out the learning curve, he stayed home for 6 weeks.  Then Megatron needed surgery.  The Pilot went back to work for a week and now has taken another 2 weeks of FMLA so he could be here for the surgery and recovery.
  7. An emergency fund.  Eight weeks of no income for The Pilot and 12 weeks of reduced income for me and now a mountain of medical bills.  Scary.  I'm so thankful that we have an emergency fund.  Granted we always thought that fund would be used in case The Pilot was furloughed but that back-up plan is keeping us from also having a financial crisis.
  8. Humor and Forgiveness.  I've sometimes wondered how I would react in a crisis and how The Pilot and I would handle a crisis together.  Luckily we haven't lost our sense of humor.  It really is a coping mechanism.  We've done our best to see the fun in an awful situation.  While there was been A LOT of tears over the last couple weeks, and the last 8 days in particular, there have been a lot of laughs.  It's also been important for us to forgive.  You simply cannot hold anything against each other.  Especially for anything that is said or done between the hours of 9 pm and 7 am.  Nights are tough.   It feels like we are reliving the first 2 weeks of Megatron's life again in terms of sleep deprivation.  It's easy to snap at each other in the middle of the night when your baby is screaming and you don't know if its because he's hungry or if he's in pain from the major abdominal surgery.  Once the sun comes up though, all is forgiven/forgotten.  You get to start over.  Ultimately though, I'm thankful for my husband.  We've been a team from the day we got married and we've handled this situation as a team.
  9. Wifi and cell phones.  While The Pilot and I are still living in the stone ages with our "dumb phones," we were able to keep friends and family updated throughout this hospital stay.  We had a laptop with us in the hospital (which had wifi) so we could sort of stay in touch with the "outside" world.  Time seemed to stand still while we were in the hospital so zombies could have taken over the world and we wouldn't have known but at least we were able to send out updates to friends and family.
  10. Quilted toilet paper.  We basically lived in the hospital since the day before surgery.  It's sort of a combination of a bad hotel and a dorm room.  It took us a couple days of using sandpaper for toilet paper before bringing a roll from home.  :)
  11. Microsoft Excel.  I'm a planner.  I like to be organized.  Normally I thrive when it comes to lots of little details.  But for some reason I was completely overwhelmed by the medications Megatron needs.  I've been terrified to mess it up.  Some are once a day.  Some twice a day and then there is one that is every OTHER day.  The doses are all different.  Two of them can be put directly into his bottle.  There is a basket in our kitchen full of dosing syringes and bottles of medications.   I needed a spreadsheet.  I basically made a sheet with each medication and when it needs to be taken so whomever is caring for Megatron can just check off the medications that he has received so none are forgotten.

2 comments:

  1. Thank you for sharing an update. You have a lot to be thankful for. :) I'm so happy to read that Megatron seems to be doing well after his surgery. In October I will be running the Nationwide Children's Hospital 1/2 marathon. I ran it last year too, and the thing I love most about the race is how the spotlight is on the kids who are patients. I will think of your son while I'm there. :) The work they do is truly amazing. And lol about the hours between 9pm and 7am. You hit the nail on the head in describing how tough things can be at that time of night when your baby is crying and you're not sure why. To quote a George Harrison song: "the daylight is good at arriving at the right time." You & your husband are good parents, and it's easy to get the feeling from your posts just how much your son is loved. :)

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  2. Thank you for sharing the update. I am thinking and praying for you all.

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