Faith Building Experiences

When Tyler got burned, it kind of felt like the whole world got turned upside down. Our lives were placed on hold and replaced with 7-hour round trip doctor appointments and bandage changes and pain meds and comforting our sweet baby. We were also trying to give our other children attention and trying to keep the house semi-clean and get ready for Christmas.

We are home now and I was hoping that we would pick up where we left off, but life is different now. Tyler's care is still taking up much of my day. We do physical therapy three times a day, play therapy three times a day, minor wound care where the dry skin is cracking open, lots of moisturizing, massaging the scar tissue, putting the glove on, taking it off and putting the splint on and vice versa (they are both really tricky to get on just right,) hand washing all of the bandages and pads and the glove and hang drying them. We also go to PT twice a week. Healing Tyler's hand has become my whole existence. Just as Caden's autism and Cierra's epilepsy did. But trying to find the balance between all four kids is rough. They all want and need my attention. As does Erick and the house. There is laundry to be washed and dishes to be done and meals to be cooked. Plus I am taking an online class and so I am losing quite a bit of sleep staying up late trying to stay caught up on the homework. I feel like I am being pulled in every direction possible.

The point of the preceding is that I am stressed. To my maximum. Yesterday was no exception. Tyler screamed all day. ALL DAY. Screamed and screamed and screamed. I put him in his crib and shut the door multiple times throughout the day because I couldn't handle it anymore. I gave him motrin and codeine. I changed his diaper. I offered him food. And he just screamed some more. He screamed so long and so hard that I was contemplating taking him to the ER because he has never acted this way before. I was worried that I was missing something. Erick has been working nights all week, so he sleeps all day and is gone all night, so I've been 100% on my own. Tyler was calm for a few minutes, so I called my mom. I needed to vent and talk to someone. I was at a breaking point and didn't know how much more I could handle. This was about 8pm. We talked for a few minutes and I told her that I wasn't doing well. I was at a point that I don't think I've ever been at. I felt so alone and so overwhelmed and I just didn't know what to do.

Then there was a knock at my door and I almost didn't answer it because it was dark and we weren't expecting anyone. I was a mess and the house was a mess. But Caden ran to the door and threw it open. It was someone from my ward. He had his youth companion with him and they had been out doing their home teaching and felt like they should stop and by and see how we were doing. I let them in and he asked how I was doing and I promptly started crying. I told him how overwhelmed I was and about the day I had had. I was embarrassed because I don't really know either of them, but the words and the tears just spilled out. He asked me if I wanted a blessing and I said yes. In the blessing I was reminded of many simple truths that I hadn't been thinking about lately. They left soon after that and Tyler started screaming again, Caden demanded all of my attention and it was a battle to get everyone to bed. Life went right back to normal.

But I went to bed last night with a better sense of the love that my Heavenly Father has for me and a deeper appreciation for personal revelation. This brother from my ward is not my home teacher and had no obligation to check on us. Before last night, I had only spoken to him once when he came over with the bishop to give Tyler a blessing when he was first injured. But he listened to a prompting to check on us and I am grateful that he did. When I felt alone and desperate, He sent someone to remind me that I am not alone. I am NEVER alone. He is always with me and knows my needs and knows what is best for me. I am grateful for the knowledge that I have of the gospel and I am grateful for a gracious and loving Heavenly Father that is always there for me.

Our Trip to Utah and the latest on Tyler

We left for Utah on January 2nd. Well, we attempted to leave anyway. Vivienne took the bus over from El Paso to help me drive up and when we got in the car to leave, it wouldn't start. Finally got it to jump start and took it to Walmart to get a new battery, but when we got there, they said that the battery was fine and they suspected the alternator. So we then drove over to Auto Zone and had it checked and it was indeed a bad alternator. Lucky for us, one of the employees had a friend who does mechanic work on the side and he came to our rescue and came to Auto Zone and fixed my van in the parking lot, on a Sunday for only $40. We only made it to Albuquerque the first night because of the late start to our day. I woke up Monday morning feeling really sick, so Viv did the majority of the driving from Albuquerque to Sandy. We arrived safe and sound, despite the snow packed roads between Cortez and Monticello. Oh yeah, and we almost hit a deer in Spanish Fork Canyon. Lucky for us (and the deer) he jumped out of the way just in time.

I woke up Tuesday morning really, really sick and running a high temp (105). I got up and went to a walk-in clinic and my rapid strep came back positive. They gave me steroids and antibiotics and I was feeling much, much better 24 hours later.

Wednesday we went to the Burn Clinic and I all ready posted all the details about that visit (see next post down.) I was so impressed with the care he got at the U vs the care he was getting in Lubbock. All of the BTICU docs are really great and so willing to spend extra time with you and make sure that everything is taken care of.

Since Tyler's graft surgery was cancelled, I decided to see if I could get Cierra into the neuro while we were in town. They had a cancellation the same day that I called, so we went and saw the neuro's PA (Shari.) She is super concerned that Cierra is still having so many seizures and she thinks that Cierra doesn't seem like herself (and she doesn't a lot of the time.) When Cierra had her MRI done 2.5 years ago, they found a cyst in her brain and at the time, they didn't think it had anything to do with her seizures. But now that she has failed two medications and is still having daily seizures, they started reviewing everything. The neuro and the PA both said that they see a thickening in her brain in the area around the cyst (this is all in her left temporal lobe.) Not really a good thing. They want to do a surgical work-up on her when we are back in town and that will include staying inpatient for 7 days and having a continuous EEG done and have another MRI done with higher clarity and having some other tests done. If they can pin point an area where the seizures are orginating from, she might be a candidate for having that portion of her brain removed or having a VNS implanted. Scary stuff. If her seizures get better or stay the same, we can wait to do this until school gets out, but if her seizures get worse or change, they want us back up to Utah ASAP so they can monitor her and see if they can figure out what's going on. Not exactly the news I was expecting to hear on a routine med check. It made the trip a little more stressful. It sure takes a lot out of me watching these kids struggle. I wish I could just take it all for them.

We spent the rest of the trip going to PT and Burn Clinic appointments with Tyler and doing some shopping and spending lots of time with family and friends. We picked up his glove last Wednesday and also saw another BTICU surgeon. This surgeon said that he wants to see Tyler back in about 6 weeks, so we might be flying up to Utah at the beginning of March. He seems more concerned about Ty's hand then the PT's do, so it will be interesting to see how it does. The PT thinks that Tyler might only need to wear the glove for 4-5 months and then be done with everything, but the surgeon said that it is "highly probable" that Tyler will need surgery to remove scar tissue and have grafting done in the very near future and that he will need to stay in the glove for closer to 18 months. He also said that he will most likely need surgery more than once, like the other surgeon told us. Only time will tell, but I am sure hoping and praying that his little hand will keep healing itself and that he will avoid surgery.

Tyler's splint. He has to wear this at naptime and nighttime. He pretty much hates it.

Eating a sucker that he got from one of the nurses. Once he discovered that they had a whole basket full of them, we had to walk out to the front desk over and over again so that he could get another one, take the wrapper off, take one lick, and then throw it in the garbage.

I have been trying to get a good picture of Tyler's glove since we got it, but well, he moves a lot, so this is the best pic I have of it. It's actually kind of cute. You get to choose all the colors and a design for it. We have two more ordered and headed our way shortly.

We stayed at Nana and Bubba's house, but we also spent a lot of time at Grandma's house.
Tyler getting aquainted with the new kitty at Grandma's house, Hiccup.

Kenz and Grandma




We went to Chuck E Cheese.
Ty eating some pizza and using both hands :)

Caden and Tanner

Kenz and Cierra trying to scare away all the little kids that were there that day.


Taking a bath in Nana's sink :)
I ended up having to drive myself and the kids back to Carlsbad alone. It was a long, long drive and I am still exhausted from it. We made it to Gallup the first night and stayed at a hotel. The kids were loopy and tired by the time we got there. It took us an extra hour to get there because the GPS sent us in the wrong direction. My kids are such good travelers, so even though it was a rough 900 miles home, overall, it went pretty well. My biggest complaint? The undetected and scentless diarhhea that Tyler kept having. He had one sore bottom by the time we made it home.

TyTy's Hand Update

We met with the surgeon at the U of U Burn Center last Wednesday and she decided to wait on the skin grafting because Tyler's hand looked like it was finally starting to heal on it's own. We are glad that she decided to wait because his hand has made great progress in the last week. We are at day #23 today and he still has a few open wounds, but most of his hand and fingers are now covered with new, pink skin and lots of thick scar tissue. We are still doing daily bandage changes, but they have gotten much less painful for Tyler. We are also doing PT three times a day and play therapy three times a day. He doesn't like either of those, but he tolerates them for the most part. He was fitted for a glove on Monday that he will be wearing for the next 12-18 months. That should be ready on Tuesday and then the kids and I will start driving back to Carlsbad on Wednesday. He will actually have 3-4 gloves at a time and they will have to be replaced every 3-4 months, but they only rush ordered one for now and then they will ship us the rest. We also found a PT in Carlsbad that can take over Tyler's care when we get back in town, so we are happy about that. He's not a burn expert, but he has treated some burns and feels confident that he can help Tyler regain full function of his hand. We will not know for several months or even close to a year if Tyler will need surgery to remove scar tissue and release contractures. They told us that he will most likely need surgery several times in his life to make sure that his hand has full function. As he goes through growth spurts, his bones will grow faster than the scar tissue can stretch and so often times they have to have surgery a few months after it happens, and then again at age 5 or 6, and then again when they go through puberty. But only time will tell what his little hand is going to do. Thank you all for your prayers and fasting. I know that it played a role in Tyler's healing process thus far. We are so grateful for all of the love and support that we have received. We feel certain that we made the right decision in transferring his care to the burn center at the U. It was not an easy decision to make, but it was made prayerfully and we know that it has been the best thing Tyler. We will be seeing the surgeon again at the end of May when school gets out and we head back to Utah. We will also be doing some medical things for Cierra at the same time, but that is another post for another time.
Day #11

Day #20

"The beginning of hardship is like the first taste of bitter food--it seems for a moment unbearable; yet, if there is nothing else to satisfy our hunger, we take another bite and find it possible to go on."

I heard this quote today and I feel like it perfectly describes so many experiences in my life, but I feel it is especially describes the experience we are having with Tyler right now. I always knew that burns were painful. Especially third degree burns and the cleaning and scrubbing that go along with healing them. And the grafting and physical therapy, and so on. But I really had no idea the kind of pain it involved until last week. Now I know because I inflict it on Tyler ever day.



Once a day, I spend about 15 minutes getting new dressing and different creams ready and then I run a bath. Tyler used to LOVE the bath. It was by far his favorite thing to do. Now when he hears the water running, he runs and screams and does everything in his power to get away from me. But, I always win and I drag him kicking and screaming into the bathroom. Once in there, I undress him and very slowly cut his coban off. This is when the real screaming starts. I then put him in the tub and put his little hand under water before I slowly try taking the adaptic off. Once his hand is exposed, I have to clean it and scrub all the dead skin off. I can't even describe what happens when I do this. The screaming that I thought couldn't get any worse, does just that and his whole body shakes uncontrollably. When I'm done cleaning it, I rinse it gently under the faucet and then I get him out. And then I cry with him. Every single day. By the time we're done, the water is no longer clear, but tinted red. After the bath, I have to pat it dry and then put new pieces of adaptic on each finger and then wrap them individually and then put adaptic on his palm and wrap the rest of his hand up. After this, he usually cries for another 10-15 minutes before he passes out in my arms. We time the bandage changes so that both of his pain meds are in full effect, but it seems to have little affect on his overall pain level. But, I wouldn't want to try it without the pain meds. I can't even begin to imagine.



Everyday when I start cleaning his wound, I hesitate and think that I can't do it. I can't hurt him one more time. But then I realize that there is no alternative and I take a deep breath and do what needs to be done. It kills me a little everytime, but I keep eating the bitter food because it's all I have. And then all of the sudden, it's done for the day and we have both survived. The first bandage change I did on my own was at my sister-in-laws house and I kept saying "I can't do this. I really can't do this." And she reminded that I could do it. I can do hard things. Hard things are, unfortunately, a very necassary part of life.



My sweet baby boy-I am so, so sorry that you are going through this very painful time in your life. I would give anything to trade places with you. Please remember that I love you and I'm praying for you, along with many other people. We have to go to Utah tomorrow and the next few weeks are going to be very painful, much more than the last two have been. But you are strong and soon this will all be behind you. I love you more than life itself and I hope that someday you'll learn to trust me again.-Mom