Here are pictures showing Devin's battle wounds. It's hard to tell exactly, but he probably had 8 or more IVs in both hands and feet.
Monday, February 25, 2013
Devin Comes Home!
Devin went to the playroom a couple times on Monday afternoon with Morian and then again on Tuesday with me. Devin did a lot of painting, practicing writing (he was super excited to "learn" how to write our names!), racing cars, and building train tracks. He met with the speech therapist again so she could examine his swallowing while eating; he ate a couple bites of "harder" food. He still had his feeding tube, though it got clogged Tuesday night and they weren't able to flush it, so it came out Wednesday morning. I got him to sit up in his chair and play Bingo (they broadcast it on a hospital channel) and he was having so much fun and doing a great job of "x"-ing off the boxes himself! He ate almost a whole bowl of frosted flakes, which was fantastic! We got the news that Devin would be coming home on Thursday, but we didn't know when, so I didn't go trade places with Morian. Turns out it wasn't until 4 pm. He got another echo done and a lot of blood drawn. :(
He had fun playing with these "bendy guys," as he calls them, that he would get with his food.
He Starts Getting Better!
On Monday, Devin was in a really good mood, probably b/c he actually got almost a full night's sleep!
He spent the morning playing with toys,
watching TV,
and playing with more toys! He got this Superhero book from the Primary President when she came to visit on Sunday and he loves it!
A New Diagnosis?
Saturday definitely found Devin feeling more like himself. He actually wanted to do things, other than sleep or watch TV!
We were told that in the last echo they did Friday morning finally showed swelling of the coronary arteries. They now knew they were dealing with an arterial disease, but because his body hadn't been responding to the Kawasaki treatments, they had to consider another alternative. The other possible disease they came up with was called Polyarteritis Nodosa (PAN). We were told Devin would have an MRI done on Monday to see if he had arterial swelling anywhere besides his heart.
Out of ICU
Most of the Friday was the same as Thursday- he was in the ICU and trying to get his energy back. They finally took him off the oxygen completely and he did well breathing on his own. They removed the catheter and he was able to pee on his own again. They kept the feeding tube in, but he was allowed to drink, and even eat, if he wanted, though he didn't have much beyond a few sips of Sprite.
He's Awake!
This is the scene that greeted me when I got the hospital Wednesday morning! What a difference from how I left him! Awake and sitting up watching TV!
He was still pretty miserable though. :(
Intubated
The rest of Sunday and in to Monday Devin was stable and full of morphine! At one point Devin had a pretty high fever but they weren't giving him medicine for that (I can't remember why not) and so the nurse and Morian put wet wash cloths on Devin's exposed body parts to help cool him down.
Sunday, February 24, 2013
Scariest Day of My Life
Sunday, February 3, started like any other day Devin had in the hospital. He was sleeping, getting medicine, getting poked. I took this picture around 4 am or so. He woke up around 4:45 with a coughing fit. I went and sat with him on his bed while he coughed. It seemed worse than his usual coughs. Suddenly, he stopped breathing. It probably only lasted like a second and he caught his breath again pretty quick, but still, it was scary, as he was flailing his arms around. I pushed the nurse call button and and when the nurse came in, I told her what happened. Devin started coughing again and again, stopped breathing. The nurse was right there to give him a little bit of oxygen and called a respiratory therapist. See, they were nervous about sucking anything out because of his swollen neck so she wanted to ask him what he thought. He agreed to try sucking a little out his nose. Before they did it though, the doctor showed up, just to check on things. While she was there, Devin coughed and again, stopped breathing (each time he was able to quickly regain his breath on his own). They all agreed trying to suck some of whatever was obstructing his airways was the best choice. They got quite a bit out through his nose, but could then see it pooling a little in the back of his throat. So they planned to do a quick little suction in his throat. At one point it kind of gagged him and he started coughing again, but it was a really weak cough, and then he stopped breathing again. I helped him lean forward and waited for him to catch his breath. He was flailing his arms but the breath he needed wasn't coming. I saw how scared he was as he lost the energy to move his arms. He paled quickly, his eyes rolled back, and his body fell back to the bed. I was crying and telling him to breathe. I will be forever grateful that the nurse, doctor, and respiratory therapist were all in there with us! They had an oxygen mask all ready for him. You could tell though, that at first, nothing much was getting through, as he was arching his back and still trying to breath. They had to call a Code Blue and that is something you never want to hear, especially relating to your child.
Kawasaki Disease
I left Devin Wednesday afternoon around 2 pm. He made it upstairs but he didn't last there long (I think he was there through the night). His blood pressure was very low so they were pumping him full of fluids to help and it wasn't really doing much and they determined he needed a little extra care that they couldn't give him up there, so they sent him down to the Pediatric Intensive Care Unit (PICU) where he could be monitored a little more closely. When I got to him Thursday morning, he was asleep. He looked completely different! He was so swollen and puffy everywhere! And his rash was gone. He was now hooked up to monitors for his heart rate (which was way too high, around 150-160), his respiratory rate (also high, around 50-60), and his oxygen intake (that was good, right around 98 or so).
Devin gets sick
On Sunday, January 27, Devin woke up and said he had a tummy ache and that he needed to throw up. (He never did, but Mackenzie did; go figure!) We stayed home from church and lazed around all day. Once he ate, he felt better, but he was feeling sick again by dinner time. Devin had a fever of about 101-102, so I gave him some medicine and sent him to bed. He went right to sleep, but he woke up a bunch during the night.
Monday morning he woke up feeling sick again and complained of a sore neck. I could tell that it was pretty swollen, especially on the right side. He would cry when I would just touch it and he could barely move his head, either side to side or up and down. His eyes were blood shot. He hardly ate anything all day. He had a fever again. I would give him medicine and the fever went down a little, but it never went below 101 degrees. Monday night he hardly slept at all. Morian spent most of the night with him, trying to get him to sleep, but he just hurt and felt yucky.
Tuesday morning, I decided we should take him in to the doctor. Of course, we had to wait until the doctor's office actually opened to even call and make an appointment! When I went to take Devin's temperature, I noticed a red rash all over his back. We got an appointment for 9:30 and Morian took him in. The doctor was nervous about his swollen lymph node, suspecting that it might be an abscess. So he told them to go up to Primary Children's Medical Center so they could do some tests and figure out what was up. When I got that phone call from Morian, I was so scared for Devin! Morian updated me throughout the day, saying they were doing tests, tests, and more tests trying to figure out what was wrong. They did decide that he did not have an abscess (good news!) but they would keep him overnight to give him some IV antibiotics for a suspected infection in his neck lymph node. Since Morian didn't get much sleep the night before, I went up to the hospital to spend the night with Devin so Morian could go home and sleep. That first night he was down in the Rapid Treatment Unit.
This is how I found Devin at 7 pm; eating pizza and watching TV!
IV #1
Friday, February 15, 2013
Dance Party
On Saturday, January 26, Maren called and asked if we wanted to hang out with her. So she came and got us around noon and took us over to her house (me and the kids). Maren has a keyboard and the kids had fun playing it and dancing! Then later after dinner we played some Dance Dance.
Kenzie eating a pepper
A Hair Cut...Finally!
So, enough random people called Devin a girl that we decided it was time to chop off the locks!
Sleeping Kenzie
Kenzie was never one of those babies who would immediately fall asleep in the car and or on the floor. She needed to be in her crib. Well, since she decided to give up naps around the the end of November/beginning of December, she's much more prone to falling asleep....wherever!
Now, if we happen to be driving around in the afternoon, it's almost a guarantee that she will fall asleep. Which pushes bedtime way back, but what can you do?!
Planet Play
For Morian's birthday, we were all gonna go bowling. Only there was a 3 hour wait at the bowling alley b/c like half of their lanes weren't working. So we put our names on the waiting list but then left to find something else to do in the meantime. Someone was wanting ice cream and someone else was wanting pizza and both kids wanted to play. So we thought, Hey! We can do all 3 at Planet Play! So away we went!
Kenzie riding the snail
More Christmas!
We were supposed to go over to Morian's mom's house the day after Christmas to do "Christmas" there, but a few of them were sick, so we waited a few days and got together on the 31st. We spent the day there eating lots of food and opening presents, laughing at the kids and playing.
Kenzie with her newest Wells Fargo horse
Monday, February 11, 2013
Thanksgiving Point Dinosaur Museum
We had a coupon for admission to the dinosaur museum at Thanksgiving Point so we finally took the kids!
Sunday, February 10, 2013
Christmas Eve
Morian had to work Christmas Eve from 12:30-11 pm and Christmas Day from 7-7. Because of that, we decided we would do "Christmas" at home on Christmas Eve morning before Morian went to work and then the kids and I would spend the night at my parents' house to do Christmas with them. Morian would then come pick us up after he got off work at 7 and take us all home.
Our Christmas Tree
Devin admiring the presents
Kenzie and the tree
Monday, February 4, 2013
Playing in the Snow
We got some snow at the beginning of December and the kids actually wanted to go out and play in it! So I bundled them up before heading out!
Decorating the Tree
In years past we have had real trees. This year we just bought a fake one (that conveniently came with lights attached!). We put it up and decorated on December 5.
Cecilia's Mission Call
Morian's sister, Cecilia, recently submitter paperwork to go on a mission. When she got her call in the mail, we headed over to the house to be there when she opened it.
Getting in the Christmas Mood
On the first of December, we busted out the Christmas music to help get us in the mood for the season. The kids had fun dancing!
Free Zoo Day
When Morian had his interview at The University of Chicago, my mom came and stayed with us so she could be with the kids while I took Morian to the airport. That day also happened to be a free day at the zoo, so we all decided to go. We prepared for it to be super cold and it was actually quite nice!
Our first stop was the gorillas.
Mackenzie's Owie
When we clean the kitchen floor, we put the chairs and stools in the living room. Kenzie likes to walk from chair to chair and in between them while they are all so close together. One time, she was sitting on one chair and playing with some toys on another chair. She ended up falling off the chair and hitting her face on a third chair. Of course, she would let me comfort her. But she was crying and holding her mouth. When she finally let me take a look, I could see blood! Once I got her cleaned up, I could see a half-moon shaped cut right below her lip.
Happy Thanksgiving!
This year for Thanksgiving, we went to my parents' house. Kayley, Paul, and Glenn were in town (staying at my parents' house), but they were having dinner with his family. They were still at the house when we showed up. To pass the time until they left, we played Reverse Charades. That means, instead of one person acting out a word and everyone guessing, one person would guess while everyone else acted. It was fun! We played guys vs. girls.
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