Rest and Recovery (again)

It has been a while since our last update, and to cover everything since then seems a little overwhelming! Instead I figured I would give an overview of the high points :)

Bounce Back

In our last update, we were praying that Linden would recover quickly, and be back to her old self in no time... mission accomplished. Linden was drinking clear liquids the night of her surgery and eating solid food by the next morning. She was off her morphine pump by the end of the next day and has since been totally weaned off of any pain meds.

The physical therapist and occupational therapists came by on Friday to see Linden and challenged her to sit up in her bed. Much to our surprise, she sat right up, and started playing with her toys in bed! She didn't sit for long, but now that we knew she was able to do so, we starting sitting her down on the floor mat they gave us and playing with her. Linden is back to scooting around on the floor, ripping up Kleenex tissues, playing with and throwing toys, all the fun stuff that she did before surgery and we couldn't be happier to see her personality and spunk back and stronger than ever :)

Linden's Personal Nurses

The doctors were very pleased with her progress and recovery and immediately put Laura and I on transitional care duty. This means that all of Linden's meds get switched to pill form or liquid form so that we can give them to her outside of the hospital. They then have nurses watch you for a few days while you give meds to make sure that you are doing everything correctly before sending you home and trusting that you can do it by yourself. Thankfully this isn't our first rodeo. Laura has been tracking Linden's myriad of meds since her first surgery at 10 weeks old and is a veteran of sorts when it comes to dosing and giving meds.

As long as we completed the transitional care aspect of things over the weekend, chances were good that we would be discharged on Monday! The one hitch was figuring out where we would be staying after discharge. The original plan was to stay at the Ronald McDonald House (RMDH) across the street from the hospital, but even applying almost a week and a half ahead of time, the waiting list looked to be too long. We were informed that we would need to find alternative options for housing until we could get off the list and into a room. Thankfully, we have been blessed recently when it comes to lists :) They called Saturday and let us know that they had a room for us!

We also had a good friend Tiffany Spies (Auntie Tiff) come visit over the weekend which was awesome :) She helped to keep Laura sane for another weekend and took Laura out for dinner on Saturday for some much needed girl time. As hard as I try, I just can't talk about The Bachelor for more than a minute and a half at a time but I'm pretty sure that Tiff knows the first and last name of each person on the show. No wonder these two get along so well.

The weekend went well, we passed the transitional care stuff, learned to change caps and dressing on Linden's central line, got some practice in with giving all 9 meds a day, and were discharged on Monday! We headed over to the RMDH as a happy little family and checked into our room... ahhhh...

Our New Normal

Each day seems a little more normal as we continue to stay here at RMDH. There are a few caveats to this new normal however. The first is that in order for Linden to stay healthy and keep the body from rejecting her new organ, the doctors have placed her on a medicine that suppresses her immune system. It is a tricky balance between preventing rejection, and insulating from infection. These go hand in hand as you can imagine. By suppressing the immune system, the body won't fight against the new foreign object in Linden's body, but that also means it can't fight off many of the other infection and sickness causing bacteria the rest of our bodies shrug off as minor inconveniences. Because of this, we have to be extremely careful about germs.

To help protect Linden, anyone that is sick or has been within the last 24 hours can't be around her. Of course you can't always guarantee this germ free utopia, especially when in public, so we are on strict instructions to keep her out of \"crowded spaces\" for the first 3 months post-transplant. In addition, any time Linden is out in the wild, she has to be wearing a mask, OR be inside a covered stroller unless she is in an area with free flowing air (a.k.a. outside). At first Linden didn't mind her mask too much, as long as it was only on for a while. She did beautifully on her first trip outside as you can see below.

Unfortunately, wearing a mask gets old really quickly. Linden started biting them and ripping them off her face and crumpling them up after about half a day. We needed another option... thankfully we had a family friend contact us and let us know that she wanted to purchase a stroller for Linden that would allow us to cart the princess around without a mask on :) This was a huge blessing! Since then, we have been happily pushing Linden around in this pretty little pink buggy.

Busy Week

The stroller has seen quite a bit of action this week as we have had visitors nearly every day.

Jordon and Rebecca Brill visited us on Monday and Tuesday this week. While here we made a little trip to Ault Park, went to Five Guys to grab some amazing burgers, then capped off the two day fun fest at the Melting Pot, courtesy of my awesome employer Wilber. Yes a beet juice cleanse is on the list for when we arrive home.

Wednesday was Linden's first appointment which went extremely well — all numbers are now normal or trending downwards! Praise God. After that, Graham and I headed to the Cinci Zoo while Laura and Lindy headed back to the RMDH for naps. It was a perfect day with perfect weather and the zoo was packed to the gills! After returning from the zoo, we entertained ourselves until the moment Graham had been waiting all day for finally arrived... Ronald McDonald came for a visit! He had a great time playing hide and seek and Simon says with Ronald and the rest of the kids here at the house for an hour before Ronald loaded back up in his fry-mobile and drove back to hamburger land.

Thursday Laura's parents came back down to visit for the afternoon and evening. We headed to the Montgomery Inn Boathouse restaurant right on the Ohio river and enjoyed some amazing ribs followed by some walking on the boardwalk and Graham running around without a shirt on, imitating the runners he saw. Crazy kid :)

Friday was grocery shopping, and another appointment, again with minimal changes and all thumbs up from the doctors. Usually the plan is to stay for 4 to 6 weeks post-transplant to level out all the meds and make sure the patient is doing well, however if there is one thing we have learned with Linden, it is to always expect the exceptions, good or bad :) In this case, its looking like it might be good. The doctor we have been seeing while our primary doctor is away is telling us that we may be able to go home as early as next week which would be AMAZING! In the meantime, we continue to stay busy and bide our time until we can be back in the comfort of our own home!

Thank You

There are many of you that will read this that have been a blessing to our family! While I do plan on sending out actual thank you cards of some sort, I wanted to say here first, THANK YOU SO MUCH! Letters of encouragement, texts letting us know you are praying for us, gifts, snacks, food, gift cards for food, the ten pounds I have gained because of that food, all of it... thank you! Even if we don't get a chance to say it immediately, we hope to be able to say it to you face to face eventually and will also say it here, we love you!

Lastly we want to acknowledge how humbling it is to be one of the families to have a child who is doing as well as Linden is. There are so many families here at the RMDH whose children have cancer, or who have a 14 week old going into his 7th surgery, or who have a life long condition that requires constant assistance and care. It is impossible for us to complain about any of our circumstances for long when we look into the realm of what could have been, then look back at our beautiful healthy baby and the heaps of miracles and grace that has been poured out on our family to make that a reality.

I will praise you forever for what you have done; in your name I will hope, for your name is good. I will praise you in the presence of your saints.

— Psalm 52:9

Jake Bennett