This has been the week of extra lunch money. After weeks of racking up tolltag expenditures and multiple swipes of the debit card through the parking garages at TCH, our bank account is finally regulating. Of course, we would have continued it for as long as needed, but it's been so nice not to have to jump on the highways to make the trek down there. I could drive it my sleep by now - and scarily enough, probably almost did at some points. : )
Of course the main bonus is having our little girl home. And not only is she home but she continues to improve daily. THIS is what recovery looks like. Everyday she's a little bit stronger and more like herself. It's been so heart-warming to watch and experience. Maybe that's why I haven't really blogged in the past few days --- it's been almost impossible to put into words my gratefulness and joy.
I was so nervous to have them by myself this week (Matt needed to return to work on Tuesday), given our last experience. But everything could not have gone more smoothly. Quinn was understandably more clingy on Tuesday and part of Wednesday but by Thursday she had found her groove and was back playing with Ryan almost at full tilt. I've never been so happy to see toys scattered all around the living room and to hear their squeals of laughter as they double-teamed to pat Max or destroy a magazine. Before Quinn was walking much on Tuesday and would just sit by me on the floor, Ryan played his own game of patting his sister gently on the head and then would run away laughing. Then he would return, pat again and run away again. He must have done it at least 20 times. I was laughing so hard I had tears running down my face. I think he was hoping it would encourage her to get up and chase him like he was used to - and by Thursday, she was pretty much up for it.
Her strength continues to improve and every day her walking becomes stronger and less of an awkward limp. She tires a bit more easily still, but she never cries from pain. She is now just on one dose of regular Tylenol per day and we will probably drop that today. That is just crazy to me! She says a new word every day and is just precious in the way she mimicks us. Her eating is almost back to normal and she is drinking almost as much milk as her brother.
On Thursday, I took her to the pediatrician just to have him look at her and make sure he thought everything was going well. To be honest, I almost cancelled the appointment because it seemed pointless, but I also wanted him to see her just being happy and back to Quinn. Last time he saw her in his office, she was a hot mess and in so much pain, moaning and crying the entire time. Then he saw her a couple of days post surgery when she was pretty out of it - so it was nice for him to see her up and going. She did not disappoint - she flashed all sorts of toothy grins and babbles and even gave him a hug. From a medical standpoint, she looks fantastic too. Her pulse ox levels are 99s and 100s again (whoo hoo!), her breath sounds were perfect (meaning he couldn't hear any effusions in her lungs), and her coloring great. The only concern now is putting back on the weight she lost during her 5 week stint in and out of the hospital. It will take some time but we'll get there. For now, most of her jeans and pants just fall off of her - wish her clothes from last winter were readily accessable because she would probably fit perfectly in her 6-12 month jeans. But soon enough, I'm sure she'll be rocking her 12-18 months again (oh and btw, Old Navy has the greatest skinny jeans for little girls --- seriously, I never thought skinny jeans would be cute on a toddler but they are beyond precious!)
On Monday we will head back down to the med center for a check up with the cardiologist. For once, I can't wait because I just know everything is going to be fine. I am not worried in the least like I was last time. It's such a good feeling and I feel like a 100lb weight has been lifted off of our shoulders. Maybe now my hair can start growing back (it started falling off in clumps during this process) and have clearer skin again - small price to pay but I'd like to get rid of my bald spot that descended directly on my part :)
So basically, you can probably hear it in my voice that we are just beyond relieved and overjoyed on how this recovery is going. You know how when you have the flu and you can't breathe, you feel crummy, and everything hurts. And then just one day, you wake up and you can breathe again and your head doesn't pound with every movement? You almost feel high because you just feel GOOD again. In some sort of way that's how I feel now - just high and happy after such a long venture. We are still recovering emotionally and spending a lot of time trying to catch up on sleep, but all in all, we are on our way to "normal". Whatever "normal" with twin toddlers is anyway :)
Ryan has adjusted so well to Quinn being back home. I was worried he would feel neglected and act out, but he's been a super champ this entire week. He laughs almost all of the time and just cracks us up with his antics. We try to carve out special Ryan time for him, especially since we are kind of stuck at home for the next 4 weeks or so while Quinn recovers more (we can't be in the general pop for at least 4-6 weeks post surgery so she doesn't get an infection. It's a scary time of year too, with flu already going around and colds abound). So we try and make sure we take him to his Little Gym class every Saturday - it's our special time with him and he gets such a kick out of it. He, too, has grown stronger over the weeks, and is "all boy" there. It makes my heart proud to see him running around, following directions (most of the time), and just laughing and dancing. I was thrilled this past Saturday to take him and find that my favorite instructor was subbing for the Saturday class. I hadn't seen her since prior to Q's surgery but she has followed our journey and has been such an encouragement with her words to us. To be able to hug her and thank her for all of her support made me want to cry. Like most things these days, I guess. Except they are happy tears.
So this is a long update but I wanted to bring y'all up to speed. We remain incredibly grateful to you all for your continued prayers.
The following is just something I needed to write down because I don't want to forget the dates of the surgeries, hospitilizations, time at home, etc. So this is for my own records. Feel free to skip through :)
Sept. 19th - Catheter procedure & "coiling off" of Quinn's collateral vessel. 6 hour procedure, 6 hours in recovery, 16 hour day. Whew.
Sept. 21st - Original surgery date. Rescheduled for Sept. 27th
Sept. 26th - Check in at 8am for pre-op work ups. Did not get a room on the 15 floor until 5pm. Quinn missed both naps, didn't want to eat and was on her way to being a hot mess.
Night of Sept. 26th - Quinn up all night with Mommy & Daddy. We all slept maybe a combined 2 hours.
Sept. 27th - Surgery at 7am. Out of surgery by 3:30pm. Saw Quinn around 5pm. All reports were good.
Sept. 29th - Still in CVICU - chest tube stuck on the top wire of Quinn's sternum. Dr. Heinle had to reopen Q's chest under general anesthesia and remove the tube.
Sept. 30th - Move to 15th recovery floor.
Oct. 2nd - First proposed "going home date". I said no.
Oct. 3rd - Finally decided we were ok with going home. We didn't know what recovery was supposed to look like, so we assumed she would recover better at home.
Oct. 3rd - Oct. 9th - Quinn home but not improving.
Oct. 9th - Check in at TCH's ER - admitted back to 15th floor.
Oct. 9th - 12th - Only 15th floor "recovering" from pleural effusion and gastritis. Released on October 12th.
Oct. 12th - 17th - back home. Not improving. Mutliple calls to doctors.
Oct. 18th - Appt with pediatrician. Took an xray, sees massive pleural effusion. Immediately calls our cardiolgoist and sends us back to the ER.
Oct. 18th - 21st - Back on 15th floor while the doctors try to determine what's wrong. Finally an echo shows the patch is leaking, and not only does she have the effusion in her lungs, but she has a good amount of fluid around her heart, plus her liver is down about 2 inches lower than it should be and enlarged. We are told on the 21st the only way to fix it is another open heart surgery. Devestation.
Oct. 22nd - "Emergency" surgery on a Saturday. Pretty unusual for them. Back in surgery at 8am, out by 3ish. Saw Quinn again at 4:30 or 5:00pm. Still looked like our beautiful girl. Surgery was a success!
Oct. 22nd - 27th - In CVICU. On the 26th, they had to put in a chest tube to drain the rest of the effusion that the other tube wasn't reaching. Got out almost a liter of fluid. Whew. All went well. Moved to 15 the next day.
Oct. 27th - Oct. 31st - On 15 AGAIN. This time recovery is PERFECT. Smiling, happy, laughing, attempting walking, eating but not drinking. The drinking thing concerned the doctors but she was eating about 6 yogurts per day and her electrolytes were completely in balance. Released us happily on the 31st. Quinn came HOME and immediately drank a ton of milk. Take that ;)
Oct. 31st - present. Quinn home and doing just great. And looking at the above, this child's strength is a wonder for everything she has been through. And no wonder we are tired.
Love you all!!!!!!!!