Sunday, November 25, 2012

Meredith's Birthday!

Today was Meredith's birthday, and Raul and I joined the family for dinner, cake, and presents. Both Teddy and Raul were sad that the wrapping paper wasn't for them, but Raul was satisfied with tearing up a piece of tissue paper. He scooted all over the living room, rode in his baby walker, and rode the rocking elephant. He was being very stubborn in the beginning about pictures, but finally smiles for some at the end! The cake was very yummy, but apparently Raul doesn't like chocolate, as he didn't enjoy me giving him a finger-full of frosting!


Friday, November 23, 2012


Yesterday was our first Thanksgiving all together at my grandparents house (last year Raul and I were still out in Denver). Raul had a lot of fun scooting around and exploring their house, and after seeing my grandfathers tractor, he "talked" about it the rest of the night! He was so good playing and exploring while we ate. We spent both Wednesday and Thursday nights at my parents house, and Raul seemed to really like being there.

Raul scratched his eye in his sleep a few nights ago, but was still able to go to school Tuesday and Wednesday. He did well, and Wednesday came home with a turkey craft project which was very cute! He is doing so well with his manual wheelchair, and now we are sending his power chair next week for them to work on with him! 

Thanksgiving last year at the Ronald McDonald House. I am thankful that all our friends you see here were also home this year to celebrate!

Saturday, November 17, 2012

Busy Two Weeks

The last two weeks have been crazy for us. Wednesday the 7th, I was just about to get Raul up for school when I heard gagging. I jumped up to get to him since he hadn't gagged since before his surgery in Cincinnati, and when I got there he threw up a large amount of formula. A few seconds later he started throwing up straight blood. It was like a horror movie, bubbling up out of his mouth and ending up all over his crib and the floor. Along with the blood he lost about 8 inches of esophageal lining. It came out as a full tube, and we brought it to the hospital in a bag with us for them to see (no one there had ever seen that happen before). I panicked, and called my mom who came right over. We knew we would have to take him to the ER, but at that point decided we needed to call 911 as we didn't feel comfortable trying to drive him ourselves. By the time they arrived, it had stopped, but he was still gagging on mucus so they had to suction him and give some blow by oxygen. Raul was actually pretty excited when we went outside and he saw the firetruck and ambulance with lights flashing! It still took a while to get to the hospital due to rush hour traffic, but much faster than if we had driven. Raul liked how the driver got to honk and use the siren!

When we got to the hospital he was quickly taken to an acute bed, and assessed. They did an abdominal and chest x-ray, and placed an IV (after a few tries). We were up to the PICU very quickly after that. There he was mostly monitored, and we only had to stay one night. They did an upper GI study then, which showed a new esophageal stricture, only three weeks after his last surgery. He was acting really lethargic when we were going to be discharged, so they decided to keep him a few hours longer, but then he perked back up and we went home. The next day he had a temp. of 103 and we were sent back to the ER. This time they didn't even run labs, just said he looked okay and sent us home (after a few hours of waiting).

Resting in the PICU
He did okay through the weekend, but was starting to gag a lot again like before he had his first esophageal dilatation. I was having to suction him frequently through the night and morning. Monday morning he had another 103 temperature, and I called his doctors saying something needed to be done, as his gagging and choking was getting so severe and dangerous. We were sent back to the ER to consult with pediatric surgery this time. Surgery decided to admit him to monitor his airway until they could do a dilatation for his esophagus. They did another x-ray to make sure he had not gotten aspiration pneumonia after all the gagging (which would explain the fevers). That was clear, and his blood work was mostly normal. He had low sodium though so they added a sodium IV and sodium tablets.

Getting ready to head down to surgery

We were admitted to the regular floor this time, and they monitored him over night. The next day he had his dilatation late morning. They were surprised to find that he was not actually as tight as the upper GI had shown or his symptoms indicated, but they did dilate his full esophagus to see if it would help. He had a horrible time waking up from anesthesia this time, and was screaming, hitting, and flailing for a long time even after receiving multiple medications. He did have some gagging that day, and the next morning, but hasn't since, which is great!

In the OR holding room

Later that evening he spiked a temp. of 104, and his HR was in the 200's for a good amount of time, as high as 226. This worried everyone, and they took a blood culture and more labs. He got tylenol, but still cannot have motrin due to the GI bleed. He was also put on multiple antibiotics. He was so hot, I got hot just standing next to him. We were supposed to be discharged the next morning, but this fever bought us another day/night in the hospital. He continued to have some lower grade fevers, but was fever free when discharged and luckily still is now. They did a viral panel, urine culture, and blood culture, but we still don't really know what made him so sick. His skin was looking really good, but before discharge they did a couple cultures just to make sure he still has the same bacteria and that the antibiotics will work if it were a skin infection.

Watching TV while he had his high fever. You can't tell in the pictures, but he turned really red from being so hot.

We came home Thursday afternoon, and are so happy to be out of the hospital! Raul went to school Friday since he had been fever free, and apparently was very happy to be back there too. His teacher said he did well during circle time, paid attention to the other kids, and even matched his picture to a shape like they do for attendance. He has been happily playing at home, and seems to be feeling a lot better, other than the antibiotics giving him some stomach trouble. Hopefully this will be the end of the medical saga for a while, and we can get back to our normal routine!

Playing this morning

Sunday, November 4, 2012

Thursday, November 1, 2012

Halloween and First Day of School!

Last night we took Raul trick or treating for the first time! He LOVED it! He laughed hysterically every time we went up to the houses. Then after a couple he caught on and would take a piece of candy to put in our bag, but then try to shut the door on the people haha. He did blow kisses to some people, and especially liked the houses with dogs! One family even let their dog come outside to see him. Then on the way home we saw that the fire station had their door open and they were handing out candy, so of course we had to go in! Raul was getting tired by that point, but still loved seeing the fire truck.


 Then today was Raul's first day of school! He was eligible to start on his birthday, but got delayed by going to Cincinnati, dealing with the registration office, and then the hurricane! Today I got to go with him for his first day to observe and to train the teachers/therapists/aide on how to lift him and change his diaper. He has a one on one aide who he seems to really like, which is great! We started the day by going to the PT room and they worked on lifting him. Raul got bored with that, and got a bit fussy, but then we got to head down to the classroom to play. The other kids still had not arrived yet on their buses, but soon arrived. 

They had a while of free play on the floor, and Raul found lots of cars to play with. He tried to steal the fire truck from another boy a few times, but they are working on teaching him that he can't do that! His class has eight children, all with moderate to severe special needs, and they are all adorable! After free play was circle time. Raul sat in one of the tiny chairs, and didn't even cry when they clapped and said hi to each child! After a while of circle time he went with two girls from the class for speech therapy. The speech room is small, so I stayed in the classroom with the other kids and watched them finish circle time and have snack. Apparently Raul did really well in Speech, and they even let him play a car game on the iPad!

Next up was OT for Raul and one other boy from his class. Raul cried in the beginning because he didn't want to string beads, but then amazingly did TWO puzzles! One had a magnetic fishing pole that you used to "fish" for cars, and he loved that one. The other had animals and made animal noises. He actually did really well, and even put all the pieces back in (usually he gets bored and refuses). Then we headed to the nurses office to do an example of a diaper change so they would be prepared should they need to do one. Raul screamed as he always does with diapers, but recovered quickly. After going out to the playground for a few minutes with the other kids it was already 11:40, which is his dismissal time! His class runs until 2:30, but he will only be going in the morning, as he still needs his naps! Starting tomorrow he will be taking a bus!