The First Week

1 week down....5 to go!

I may have shared this idea before, but it's come up again: Everyone should have really hard trials so they can feel what it's like to be lifted up through prayer, to be given God's power to do hard things, and to see God working through the earthly angels around you. I keep feeling so happy by all the service being done to us but then I feel guilty being given so much when I know that other moms could use this service too. Maybe the message is we should all serve each other more even if our kids haven't just had surgery. The receiving end of service feels so good.

Day 1 post-op was ok. Evan woke up well, but was still groggy all day. People would come in to check on him and he would say, "I'm going to have surgery and then I'll be in a wheelchair." They would look confused and I would clarify to Evan--You already HAD surgery. That's why you have those casts... He was kept well-stocked with pain meds and didn't have much of an appetite. He seemed to be most bothered by having to keep his legs elevated. He kept scrunching them up near his chest which would push the pillows away and put pressure on his heels. Getting comfortable was tough. He really wanted to be in his wheelchair (which he didn't even have yet). We watched shows, tried (unsuccessfully) to nap, talked to a lot of doctors and nurses, ordered dinner, gave him leg rubs with lotion. Seth had a really hard time being in the room without destroying something or doing something dangerous, so we kept rotating which parent would take him for a walk or go play downstairs while the other stayed with Evan. I don't remember what happened at night to set Evan off, but he was mad and grumpy and uncomfortable and exhausted. Isaiah managed to find a wagon and Evan got to take a quick ride around the floor before bed. Isaiah drew the short straw and stayed with Evan through the night. Seth and I slept like angels. Isaiah sent me videos of Evan singing along to Moana, a little bit happier than when I had left him.

Day 2 I got a 5 am text to bring food quick! Mr. HANGRY pants was awake. Seth and I quickly dressed and ran up with a banana, cereal, and a yogurt. Apparently Evan could not wait for the 8 am chocolate chip pancakes we ordered. Isaiah left with Seth to go take a nap downstairs after a less-than-restful night. He said Evan had slept in one-hour stretches. Poor stomach sleeper being forced to stay on his back, not to mention the bi-hourly medicine interruptions. The nurses said pain management was more important than sleep over the first 24 hours as the anesthesia was wearing off and his actual pain level was becoming apparent. I got Evan dressed to help him feel a little more normal (the nurses thought it was hilarious that he picked a "fancy" shirt to wear). He took a short nap. Next we just needed to start crossing things off the list to be discharged.

Note that any smile pictures for the first 48 hours were forced. He was most likely mad before and after the picture was taken.

1. Blood draw. This was the worst. Evan was not prepared and was panicking and screaming. The first nurse missed his vein so they left and said they'd let him calm down and try again in 15 minutes. During that time I had a heart to heart with Evan about how much I'm scared of needles but I had to have a lot of IVs when I was pregnant with him. We cried together about how hard his situation was and how crummy it is to have surgery and have all these people bother you. I told him they had to check his blood before we could go home, and if he did everything he needed to, we could go home today and sleep in his own bed and not have anyone wake him up. When the second nurse came in, she let me sit by him in bed. He squirmed and squeezed my hand but I don't think he even cried the second time. Check!

2. Remove the drain bags from his legs. After surgery, the injury swells. To ease the swelling, in addition to elevating the legs, the doctor put a little hole in the skin above his incisions and placed a catheter-type tube inside, with a pouch at the end. These pouches were collecting blood that would otherwise be pooling around the incision. It was disgusting, actually, because the bags were just hanging outside of his casts. In the morning the doctor came in and simply pulled the tubes out. They had done their job. Check!

3. We were initially told Evan needed to meet with PT/OT before leaving, but the doctor said they would basically be useless and he didn't need that. Thank you! Check!

4. Get a wheelchair. With having surgery scheduled for over a month, you'd think that getting a rental wheelchair would have already been arranged, right? This was UCSF's error. They didn't reach out to a wheelchair rental place until the day before surgery, which is not enough time to get one delivered to our house. We hoped, then, that they would send us home with a hospital wheelchair. Turns out they didn't have one his size. They better thank their lucky stars that I brought a stroller, anticipating that might happen. Check!

5. Remove IV. Pack up. Head out! We were out of there at 11 am. Earliest discharge we've ever experienced. While I was grateful for this, it did make me start to feel like, "Wait, are you sure you don't need to keep him on monitors a little longer? Are you sure we can take care of him on our own?!"

Seth fell asleep in the car before we pulled out of the UCSF parking lot. Evan took a short nap, but as his pain medicine wore off he started complaining that his legs hurt. It was a bit of a rough drive after that, trying to distract him from the pain. He was mad. He was hurting. And we didn't have anything to give him until we got home. I started thinking, "What did we get ourselves into?!" At home we quickly gave him Tylenol, then picked up Oxycodone at the pharmacy and gave him that as well. Someone from our ward brought dinner that night and we rented Coco. Evan slept like a baby on a trundle bed next to ours.

On Sunday he was a new person. Honestly, if we had a wheelchair I would have taken him to church. We started spacing out his pain meds as needed. We all napped. Someone brought dinner again.

On Monday someone watched the boys so I could go grocery shopping. Our friends came to our house for play group since we couldn't go out without a wheelchair. We started giving Evan short moments without his legs elevated. He laid on the floor and experimented with crawling. I'm starting to get used to this whole people bringing us dinner thing.

On Tuesday someone babysat Seth so he wouldn't get to stir-crazy and so I could spend one-on-one time with Evan. He is still taking daily naps and eating like a bird at this point but he said he's not in pain and so he stopped taking all pain medicine. I was surprised when I went out to check the mail and found a wheelchair delivery truck in front of my house. Finally!!

Wed, Thurs, Fri brought the new experiences of taking the wheelchair to a store, library story time, grocery shopping (I don't recommend doing this without a second adult), a park, and a restaurant.

So far, one week in, things have been overall easier than expected. I think some reasons why are: 1) The casts are below the knee, 2) He is not experiencing pain--at most he says his legs are tickly, 3) Friends have brought crafts, books, activity bags, food, letters, and 4) Fasting and prayer. As far as life in a wheelchair goes, I think it's easier when we know it's temporary, when I can still easily carry Evan in and out of his chair, and when his chair is small enough to pack up and carry on my own. Also, people are really kind and often offer to help.

Surgery #4

Tibial Osteotomy

We went to San Francisco on Monday to meet with anesthesia and the orthopedic surgeon one last time and sign consent. There was a child life specialist who met with Evan and went through a whole role play of what to expect on Friday. They had little doctor dolls with masks and hair nets, and they had a little doll with a hospital gown. They had a miniature operating table, a tiny IV and a little mouthpiece for anesthesia. She let Evan control the scene and told him everything that would happen. Then she gave Evan his actual breathing mouthpiece and let him choose a scent to put in it for comfort. He chose chocolate.

We had a check-in time of 5:30 am for a 7:30 start on Friday. We were SO blessed to get a room in the Ronald McDonald House on the 1st floor of the hospital. We were able to stay there Thursday night to avoid such an early drive on Friday. A miracle happened Thursday night. We all got into our room, laid down in bed, turned off the lights, and... SILENCE. Seth--who typically jumps in bed, cries, plays with toys, leaves his room a million times, and takes two hours to fall asleep--was SILENT, and went right to bed. I was amazed.

In the morning, Evan and I went up to the 2nd floor at 5:30. We watched the Minion movie in the waiting room. The child life lady was there with Evan's mask. She brought him into a room to decorate it with stickers and rub the chocolate scent in it. Isaiah and Seth came and joined us. Then we went back to the pre-op room. There was a tablet where Evan played a donut game. Seth did lap after lap around the floor in the wagon and cozy coupe taxi. We pointed out all the animal decals on the walls. I kept waiting for the point where Evan would get scared. Maybe once we were in pre-op? Maybe once he had his hospital gown on? Maybe once they started wheeling him to the OR? Maybe when they started anesthesia? It never happened. He was so calm. His only crying that morning was prior to going up to the waiting room when he was so eager to leave that he wouldn't let Isaiah give him a blessing.

I went back to the OR with Evan. One of the doctors said she has a 20-year old son with spina bifida, and another said that Evan already had a special place in all of their hearts for that reason. They scooted him onto the operating table, he breathed through his chocolate mask for about a minute while we talked about chocolate brownies and chocolate syrup, and then his eyes fluttered closed. I gave him a kiss, (cried a little), and left. The doctors told me they'd take good care of him.

We received text updates about every hour letting us know, "The procedure is in progress.", "The patient is doing well.", "The procedure is going well." We took a walk outside, played on the grass hill, and bought Evan a "Get Whale Soon" balloon. I was again so grateful to have a room in the Ronald McDonald House so we could relax and Seth could nap. About 1 or 2 o'clock we got the message to go to the waiting room. Isaiah went up and got the report from the doctor that things went well. After a little while he was able to go back and see Evan, whose first request was to play the donut game again.

The thing I was most nervous about with the surgery was him waking up afterwards (or rather, not waking up). This is a fairly basic surgery with limited risks, but it was almost exactly 3 years ago when Evan had his shunt surgery (also pretty standard) and didn't wake up when he should have, leaving us wondering if he was brain dead. Even though I was receiving positive texts about this osteotomy, I was not relieved until I knew Evan was awake and responding afterwards. Thankfully that happened much, much faster this time around.

About the osteotomy: Evan's feet pointed in. In looking at his legs, you could see he had some turn in from the hip to the knee, but the majority of rotation was from the knee to the ankle. From what she described (obviously I can't see it yet), the surgeon made a two inch vertical incision at each ankle. They opened things up, put protection around the bone to avoid injuring the soft tissue, and then cut both the tibia and fibula. At that point they rotate the foot and basically eyeball his foot to line it up with his knee. Then they put in a plate and screws which holds everything in place until the bone can heal. They cut at the bottom of the tibia because it's a good place for healing. They cut the fibula also to avoid straining the ankle after the rotation. I still don't entirely understand how it works, but I know his legs are now straight for the first time in his life.

Prior to surgery we thought he would be put in casts up to his mid-thigh. The surgeon said she had never performed this surgery on someone as young as Evan so she wasn't sure if there was a plate that would fit him. She said they would try to use a plate and screws because it is the most secure, but if it was looking too big and awkward then they would do pins. The pins are not as secure so they would have needed to cast higher up for stability. We were super relieved that the plate worked and his casts go to just below the knee. I'm glad Evan was okay with the length. I'd only told him a thousand times exactly where his casts would go up to on his legs. He also had memorized the spiel, "I'm going to have surgery and then I'm going to be in a wheelchair." After surgery he kept repeating that. I told him he already had surgery...that's why he had casts on. He was extremely confused why he wasn't in a wheelchair yet. "Where's the wheelchair?" "When am I going to be in a wheelchair?"