Burn

What Happened

Right before we left for the Clegg Family Reunion, our family was invited to a barbecue with some other families. Mark was working and it had been a day – if you know what I mean. I had been busy trying to do laundry, clean the house, get meals prepped to take, etc. and we ended up being over an hour late to the barbecue. My mind was going lots of places but we all wanted to go and so, even though it had been a crazy day, we went.

And it was a HOT day! Lydia really doesn’t like the heat, which was one of the reasons I chose to go to the barbecue later – hoping that that would mean less time in the heat. We got to our friend’s home, and I decided to put Lydia in our wagon. Our wagon is large and I put Lydia on one side and then piled up all of our beach towels on the other {our friend’s have a pool}. I had brought a casserole dish of baked beans to the barbecue and I put it on the towels to wheel it over to where the group was.

As we were walking over, Lydia started to whimper a little and I just thought she was upset because of the heat and so I was just trying to get her into the shade. Luckily, Sarah was walking alongside and noticed that the baked beans had spilled and some had fallen onto Lydia’s foot.

I immediately stopped and wiped the beans off of her foot and asked my friend if we could rinse her foot off inside. Luckily, she had some burn cream and we were able to put some of that on as well. Lydia was so amazing throughout it all, but I was pretty torn up inside with guilt. The beans had a lid on them and we weren’t walking far and I just didn’t see it coming. I’ve replayed it over and over and over in my head. I have to be extra careful with Lydia in all things, and I just felt like I had really let her down. It was a difficult rest of the day for both of us.

The Beginnings

I have essentially no experience with burns. Other than some minor burns that we all get from time to time, I was very unaware of what to do for them. I questioned whether or not I should take her to the doctor, but in the end, Mark and I both thought it was manageable at home.

We put burn cream on during the day and wrapped it lightly with some vaseline gauze to keep it protected during the day, and then would put neosporin on at night and leave it open so it could get some air. At the reunion, we changed the dressing twice a day and made sure to keep her out of the water to avoid infection.

Again, we knew it wasn’t good, but we thought it was manageable.

A Turn

About a week and a half after the accident, I took Lydie to an orthopedics visit at the Children’s Hospital (at the north campus). The doctor asked about Lydia’s foot and when I showed it to him, he was a little concerned – and not very kind – and told us we needed to go down to the main campus of the Children’s Hospital in Aurora and see the burn team there.

Driving down there was really hard. I had a fresh new surge of guilt and was questioning how I had managed things. I was hoping the orthopedic doctor was just being really cautious and that the burn team could maybe just give us some advice and that would be the end of it.

It was not.

Infection

The nurses at the burn clinic were incredibly kind. They told us we had done the best we could at home but that Lydia’s foot had the beginning signs of an infection. I was devastated. We had tried so hard to avoid that.

They examined Lydia’s foot further and we came up with a plan. They thought that most of the burn was a second degree burn, but one section looked like it could be a third degree. The top of Lydia’s foot had what looked like a giant scab of sorts and they said that that was a problem for infection. The scab creates a breeding ground for infection and they also could not tell how deep the burn was while the scab was on.

So this was the plan: first, to get the infection under control. Second, remove the scab. Third, determine if surgery for a skin graft was needed.

So they put Lydia on some medication and gave us some wound cleaner and instructions on what to do at home. We were told to come back in two days to see how the infections was looking.

Lydia continued to be such a trooper. A blessing for Lydia is that she has a very high pain tolerance. It is a strange trait among children with Rett Syndrome that they are not sure why, but seems to be present. Lydia wouldn’t even flinch when applying creams to her foot. It is strange, but a blessing for her, particularly in this situation.

After two days we went back down to the burn clinic. Sadly, though getting better, Lydia’s infection was not cleared as much as they would’ve liked. So they didn’t feel like they could remove the “scab” yet. They also believed, after further examination, that the entire burn was a third degree burn. They said that Lydia would need to have a skin graft surgery. They explained to me that if not performed, her foot would essentially be deformed. Also, the biggest reason to do it, was that because of the severity of the burn, her body would just not be able to create skin fast enough to keep infection out.

It was devastating news. They scheduled the surgery, we were given more instructions, and sent home. We sent follow up pictures every couple days with the team to make sure things were looking okay for surgery.

That day was a very bad day. A lot of negative emotions. I never imagined that this would be the course Lydia’s burn would take. I had been taking pictures of Lydia’s foot since the day it happened and when I look back on them, I still can’t believe it. It was really hard news to hear. I felt horrible to make Lydia go through all of the pain of surgery and the aftermath. And it was really hard to tell Mark the news as well.

Surgery

Once we found out that Lydia needed surgery, I let my parents know what was going on. My Mom said that she would fly out so that she could support us during that time. I am so grateful for her coming. It made me feel so much better to have her here. Plus, my Mom could really empathize with how I was feeling – when I was eight months old I had drunk ant poison and so my Mom understood all of my mamma hard feelings.

However, in the week leading up to Lydia’s surgery I had to make some time to just reflect and forgive myself a little. It was hard but I needed to just be there for Lydia and stop letting my own feelings of guilt get to me. It was still hard at times, but I think and hope Lydia forgives me too.

So with my Mom watching the older kids, Mark, Lydia, and I made an early trek down to Denver. We thought we had given ourselves PLENTY of time, but apparently the 6:00 hour traffic was way more severe then we knew! We were at a complete standstill, with NO exits to take. I tried to call the hospital but the operator told me none of the clinics were open yet.

We were a bundle of stress. I was so worried they were going to cancel our surgery because we were late. Mark pulled us into the front and dropped Lydia and I off, and we ran inside. We were 31 minutes past our check in time – and no one said a thing! We were so pleasantly surprised.

We made our way to surgery and Lydia was so happy. She is a living angel on earth. I love her so much and am so grateful for her. She was giggling and just making everyone so happy to see her. She got all prepped and we met a whole lot of people that were going to be a part of the surgery in different capacities.

As I mentioned earlier, anesthesia is a little tricky for Lydia. This was her fourth time though and so we knew more what to expect and could explain all of that to her team. The surgeon was late though and Lydia fell asleep waiting for it to start. Ha!

The only down side to Lydia falling asleep was that she woke up as they started wheeling her away and we could tell she was very confused. That was hard.

The Children’s Hospital was so very wonderful to us. They gave us a private room to wait in during her surgery, which was really helpful. Her surgery went a lot faster than planned and everything went really well. What a blessing.

Recovery

They took a skin graft from Lydia’s lower abdomen. It’s basically in the same place as a c-section scar would be. To protect her foot, her foot and lower leg were placed in a soft cast.

They brought us back to Lydia and she was AWAKE! We were shocked! She was so sweet, and a little loopy, but very quickly fell back asleep. She was in recovery for a long time because her oxygen kept going down. They put oxygen on her and she would immediately recover but couldn’t stop dropping down when on her own. They eventually moved us down to a room in the recovering area and her oxygen continued to go up and down. We expected this and so we weren’t overly concerned. Anesthesia just really knocks Lydia out plus with her obstructed sleep apnea, I think being in that really deep sleep just makes it harder for her to keep her oxygen up.

The nurses were fantastic and never rushed Lydia at all. And after awhile, Lydia woke up and her oxygen stayed where it needed to be. After meeting with our anesthesiologist twice, she okayed Lydia to go home.

Lydia conked back out pretty much as soon as we put her in her wheelchair. Luckily, her wheelchair has amazing tilt and so we could put her almost completely horizontal – and that way her head wasn’t flopping around.

I sat in the back with her in the car to make sure her airway stayed open and good and we made our way home. We were so grateful that we had a relatively short drive home – especially compared to our years in Wyoming when the drive home was always just brutal.

Lydia has done so well. Her cast on her foot is a like a giant club. At first, we thought she would not lift it at all, but that girl has more muscle than we think! When she hits you with that – you feel it!

Follow Up

Yesterday, Lydia had her first follow up after surgery. I was really nervous about how her foot would look. I had no idea what to expect, but also knew I definitely didn’t want to look up skin grafts on google. I felt like I was holding my breath the whole time they were taking off her cast. I was so pleasantly surprised! It looks so good. Lydia’s graft has 100% “taken” and is looking perfect. She was in such good hands {her surgeon was the director of both the burn clinic and the trauma clinic at the hospital}. When I compare her current picture to the last one we took before surgery, I can’t believe the improvement in just ten days. It is such a blessing and I am so happy for her.

We will go back next week and they will make a mold of her foot. Then they will make her a unique compression sock that she will have to wear for the next year. I was surprised how long the recovery is but grateful that Lydia is in such good hands and that she doesn’t appear to be in any discomfort.

We are thankful for the amazing doctors and professionals, family, and friends, that have helped and supported Lydia throughout all of this. We have felt the love and prayers of so many as we’ve navigated it all and continue to pray for Lydia’s recovery.