We are now one day post op and Miss Riley has been doing great so far! Her heart rate and oxygen stats are the best they have been!
She's been on a rotation of morphine, tylenol and something similar to ativan the last 24 hours. One of the ENT doctor's that did her surgery checked on her this morning and her incision site and placement all look good.
Her tummy button is also looking good. The GI doctor stopped by while Dave was ready to leave tonight and changed the dressing and told us a little about the care the site will get over the next few days. Hopefully, Riley can get a bath again in 3-4 days!
Today was spent keeping her comfy and making sure we started to learn how to suction her trach and the care that goes in to it. We've been observing and will jump in to practicing the suctioning tomorrow. It will be a full week before the first tube change and until then we just need to watch and learn and get in as much as we can so we can help take care of Riley once we're home. It's not as scary as I think we both had imagined it to be and looks like a small white tube on the end of her neck. I feel like after we get trained on Riley's care we'll be one step away from being RN's. I'm kidding. I know there is a LOT more to being an RN!
I figured we'd recap how yesterday went and give you some of the interesting details we received. We left the PICU floor just after 11:30 am and headed over the the outpatient surgery department which happens to be on the St. Joseph's side of the hospital. It's quite a trek and one we've done a few times as MRI's and CT scans are also done at St. Joseph's. It was an emotional walk with our little miss and yet one we knew we needed to do.
We were checked in to a holding area and spoke with the anesthesiologist and met with the GI doctor real fast. We signed some paperwork reviewed the procedure and then they took Riley off the the OR. They showed us the waiting area and we had intended on heading out for some fresh air when the nurse asked us to wait for Dr. Ahouja (ENT) as he wanted to talk to us before he went in to the OR. Well we sat down waiting for him and not 10 minutes later the GI doctor was back out with detailed pictures of Riley's tummy and announced she was done with her part. We were shocked at how fast that had gone. She told us today that Riley was quite feisty in the OR and the anesthesiologist actually had to give her more to knock her out because the usual muscle relaxer they use couldn't be used due to the trach and need to see muscle strength etc. in the neck during the surgery. Basically, if she'd had it her way the procedure would have been even faster.
At this point we had seen the ENT doctor walk by in to the OR and began our long wait for the surgery to be over. We played Yahtzee a few times and then started getting antsy when the clock was at 1 1/2 and then 2 hours. I actually dosed off for a few minutes but, according to Dave it was a total of 2 hours and 15 minutes after the GI doctor came in until they got us for the recovery room.
Walking down the hall to see her was scary. We were prepared to be overwhelmed with what we'd see and we actually were both relieved once we saw her. She was peaceful and with the recovery nurse so we left our cell numbers with the nurse and tried to run downstairs to grab something to eat. Well, we got lost and ended up back outside which worked out well because the nurse called and Dr. Ahouja wanted to talk to us.
Back in recovery he went over the procedure, how well Riley had done and showed us another set of amazing pictures of her throat, esophagus, chambers to her lungs etc. She had TONS of swelling and visible signs of agitation from the secretions. He even opened up one of the swollen areas as he thought it may have been a cyst. It wasn't. We asked if he'd seen a "floppy" airway and from what he saw he didn't believe so. The pictures reaffirmed that Riley needed this procedure and that she will be so much more comfortable while she recoups and strengthens her airway. He then sent us back out to eat as Riley was still resting well. After grabbing something in the cafeteria of St. Joseph's and nearly having a heart attack when they called us back to the recovery room over the loud speaker we headed back with Riley to her room.
We headed back with Riley to CHOC and ran in to the respiratory therapist that was on call to help if Riley needed to go back on a vent and she was happy as were that she didn't need the assistance. It's nice to "know" some of the people caring for Riley and see how excited they are when she hits a milestone or beats expectations.
Riley came back in her room and was able to get back in her big girl bed and has been doing well since.
To say it was a relief to be done with yesterday is an understatement.
This morning Riley was fitted for heel orthotics which will help keep her feet in a more natural position as she over extends her feet when upset. She should have her new boots tomorrow.
I was at home with the boys this morning when Mason started to do an odd cough that had us worried he might have RSV. I was able to call and get Mason in today to his pediatrician (he's RSV free) and my mom was also able to run him over to the Children's Hospital outpatient facility in Arcadia for blood work. He'll have a whole panel run to make sure he doesn't share any of the same immune issues as Riley. They are fraternal twins so they shouldn't but, we're just being cautious. We pray he doesn't and really that Riley truly doesn't as well.
If we didn't have my mom (and many other family helpers) I don't think anything would ever get done. My mom has always been the type to go go go but, Grammie has been in energizer bunny mode since this all started. If I am home I literally need to ask her to sit down because she starts to drive me crazy (in a good way). I don't think we would be able to feel as relaxed or able to do the schedule we do if we didn't have the help we are getting. Grammie drives Logan to school, does our laundry, grocery shopping etc. She literally has cleaned our entire house a million times (even when we have someone clean once a week) and has probably done 200 loads of laundry. She's also cleaned our backyard and of course "gardened". Between board meetings and teaching Pa Doug entertains the boys, helps Grammie with dinner and bath and reminds me when my bills are due (kidding dad but, now I'll know how thoroughly you read my posts), Grandpa and Grandma Hopper spend the night, come over last minute when we need them to help with the boys, play with them, feed them, put them to bed and help wherever and whenever they are needed. Uncle Scott and Aunt Becky have had Logan over to their house for the weekend and even braved a weekend at our house to give the grandparents some time off. Jen Jen (Fer Fer) has now become part of our rotation and usually stays with me once a week and watches the boys for a few hours on the weekends to give others a break. Our darling nanny Hannah is still watching Mason and sometimes Logan for us part time during the week all while still going to school full time! It truly takes a village for us to manage the crazy schedule we're living right now. So, thank you to each of you for the part you are playing in helping keep us sane! We know we are lucky and hope to one day be able to thank everyone in some way for being there for our family.
Shirts have been arriving so if you get them and would like to send us a picture we'd love to see them! I'll even share my horrible selfie to get things started!
Tomorrow marks day 30 here at CHOC. It is also our nephew Tobin's birthday. We had to miss his birthday celebration last weekend and it made all of us sad. But, we know we'll be able to help him celebrate in some other way in the near future! Happy Birthday Tobin! We love you and are so proud of the little man you are becoming! Thanks for always being such a great cousin to Logan, Mason and Riley but, especially taking Logan under your wings and giving him the extra attention he's needed the last few weeks! xoxoxoxo
Dave, Megan, Logan, Mason and Courageous Riley!