He's home!!!!

Merry Christmas!!!
We have been very busy. A funny thing happened on my way to the hospital yesterday, I called to talk to Luie's dad and he gave me the great news that Luie might be coming home. I had to do all I could to keep from crying since the weather was so crappy. When I reached the hospital, sure enough the surgeon gave the go ahead that Luie could go home. Alelujah! Señor tu eres bueno!!! That means Lord you are good. My baby left the hospital December 23rd at about 6-6:30. He went to his dad's, as planned to spend Christmas with him, his step mom, his sister and his brother. I saw him this morning and spoke to him just a bit ago, he's doing good.

Luie was able to drink and hold it down with no nausea, and he was able to eat and hold it down. This is why they decided to send him home yesterday versus today. Lu's family came over to celebrate Christmas and visit with Luie. We will follow up with the surgeon on Wednesday, and perhaps will discuss the surgeries that we still have to have done.

Thank you all for your prayers, encouragement and kind words.

Day 10

I'm doing really good and the goal is to be outta here by Christmas Eve. I read your messages and think wow everyone really is worried. I walk a lot and when someone comes to visit we usually play a game. I had a hard time sleeping lastnight but I think tonight going to be different. Thanks for all your get well messages I like them and I know to remember they lift my spirits and everyone writing them will help me get through this.

Luie

Day 9

Prayers worked!! No fever, but I should have asked everyone to pray for no pain. Luie actually had pain caused by gas. A lot of it. Neither of us got much sleep. We finally figured out what helped. Luie had to sleep almost sitting up. He started feeling better almost instantly. At about 4am, we slept until about 10. Even though the night pretty much sucked, today was a pretty good day. I was a bit worried that it would not be good because they lowered Luie's meds again by half from 40 to 20, but he barely used it today. Then Luisito walked 3 times today once with me, his cousins and his dad, other mom and grandma. Since the hospital lifted the under 18 yo restriction and Luie's cousins Marissa, Mario and Meagan plus his Titi Sandra and Tio Louie came to visit today. They played bingo and Apples to Apples in the Brown Life center. Luie did really well. We came back to the room, and shortly after Lu appeared with Cherie to surprise Luie. Margie, his grandma, came later and we went for a little walk again. He had some gas pain but we worked it out. Tylenol seems to help with the pain. I thought here we go again, but he seems to be ok. He doesn't want to go to sleep now. For the good news. Initially that plan was for us to go home by today. Well because of the stuff in his stomach coming out too dark, among other things, it prolonged our time here. We were really scared that we would be here for Christmas. I maintain my faith that God will have us home. The surgeon told us the stomach fluids are much clearer and they might remove the tube from his nose tomorrow and start him clear liquids. Then Wednesday they will start him on food and if God's willing we go home for Christmas Eve. He will spend it with his dad, Cherie, Joey and Molly and not in the hospital.
So tonight I pray for no pain, clearer stomach fluids, sleep and home by Christmas Eve.

Summary... no details...pray for no fever & fast healing

• Day 1 Checked in to the hospital to prep for surgery, tube in nose, yuk, liquid given to clean out system
• Day 2 Monday, 4 hour surgery. Mom, Dad and Big Justin were here, Titi Sandra came later. All went as planned, Mom spent the night.
• Day 3 Tuesday, recovery, slept a lot, Grandma and cousin spent the day with Luie, mom came back after break which included shower, and spent the night
• Day 4 Wednesday, walked to the teen lounge, met with friend Brett, cousins Meagan and Michael visited. Mom spent the night.
• Day 5 Thursday, doing good, catheter removed, walked twice, uncle and papi visited. Tio Louie spent the night. Small fever.
• Day 6 Friday, Big Justin spent the day with Lil Lu and they walked, papi took over and spent the night, Lu made dad and step dad play apples to apples all together, good thing they get along, or the game could have been a little rough. very competitive!!! Still small fever.
• Day 7 Saturday, Fever kicking his little behind. Not feeling very well. No walk today. Slept a lot.
• Day 8 Sunday, No sign of fever for 24 hours, woo hoo, pain med was lowered by half, Luie had a sponge bath, Big Justin visited, Luie made us play Scrabble, we suck!! Then titi Sandra visited, Luie kicked our behinds. Went for 2 walks today, promised me a third! Movie time now.

Tank Busters

I'm Luie's dad (Big Lu) and I have a story I'd like to share. I have a friend at work who I've known for a long time. His name is Joe. I've known Joe longer than Luie has been alive so he knows all about my little guy. When Joe heard about what Luie is going thru he told me this story about when he was in the Italian Army during the late 70's when he was in a unit called The Tank Busters.

The Tank Busters were a special forces unit. Because of the dangers involved in tankbusting, only soldiers who volunteered were in it. Only the bravest and/or craziest soldiers volunteered because The Tank Busters were required to position themselves, undetected, alongside tanks as they drove by. Then just as they were out of the view of the tank driver, they had to run and lay down directly in front of the tank and as it drove over them, they attached a bomb to the underside of it. When the tank passed them they'd get up run and detonate the bomb blowing up the tank. However, if the tank driver was to see them, it would be pancake time for the soldier. Get what I mean? That's why it was so dangerous and only a select few volunteered. Anyway, when you became part of the Tank Busters unit you got a pin with the insignia of the Tank Buster unit, which was a sword with a circle behind it and flames running up the blade of the sword. The sword represented the unit. The circle represented the bomb and the flames represented the bomb exploding. When other units in the Italian Army saw you wearing your pin, they knew that you were not to be messed with because you were one of the Tank Busters and you had to be nuts. Obviously Joe was extremely proud of being part of the Tank Busters. Joe had saved his Tank Busters pin for 30 years! After telling me the story, Joe handed me the pin and told me to give it to Luie. He said that Luie is a soldier and to tell Luie that Uncle Joe would be proud to have him in his unit anyday. That Little Lu is a true Tank Buster! One of the elite.

I had the honor of telling this story to Luie and giving him the pin which he has worn proudly since. Luie is a trooper and the bravest kid I know. I'm very proud of him and how he's dealt with his adversity. I love you Luie. God bless you. Keep on getting better and you'll be home before you know it.

Love,
Your Papi

I wanted to say...

Im doing good today and had many visitors. The people that came were my uncle Louie who slepped over yesterday, when he left my step dad big Justin came, then my grandma came. I took a nap and when I woke up my grandma was gone and my uncle Lance was there. Uncle Lance left and when my papi came him big justin and I played apples to apples. Later big Justin left my Titi Tati and cousin Alex came. Titi Tati got me over 200 get well letters from students from her school because she is a nurse. My papi is sleeping over with me today and right now im just hanging out with him. Other then all this good stuff I woke up with a lot of pain this morning. Also the tube up my nose is making it hard to talk(it hurts). I took another walk and today played battleship with big Justin, I beat him 2 times he beat me 1 time. I'll type another blog tomorrow on how im doing and feeling.

A busy day

Last night was pretty mellow. Luie woke up a few times but went right back to sleep. He woke up at 6am and started watching TV. I was not waking up. I finally woke up at 9:30 and he fell asleep. It works out, I tend to stay up late to watch over his pain and he gets up early to control his pain. Another tube was removed today, so he was able to get up to use the bathroom. It made walking so much easier too. THE MAYOR was in the hospital today. The nurses invited Luie to come meet the Mayor but he had just fallen asleep so he said he was not waking up. They did add another IV for a feeding tube, but he's not eating foods yet so they have to feed him. Plus it's not as uncomfortable as the one he had. He went for 2 walks today. First we went to the teen lounge just to play games and get a board game. He wanted to be ready for when his dad and Tio Scottie come to visit. He was up and ready to go when they came. He wanted to go for a walk with his Papi and Tio Scottie. Then they came back and played Chinese Checkers and Apples to Apples. By the time I came back and it was time for them to leave at 7:30, Luie was exhausted.
I must say, our team of nurses has been fantastic. I have to go find that fish bowl where we are supposed to leave comments. We have our favorites but we won't name names. We do want to say thank you to Lynette, Tobin, Danielle, Lindsey, Juliette, and in the picture, Ally and Rosa. If I forgot someone, I'm so sorry. But thank you all for taking care of my little Lu. Tonight his uncle Louie is coming to spend the night with him and then he gets to spend the day with Big Justin and the evening with his dad Lu and bonus, his dad is spending the night. I will be back Saturday. I'm having anxiety thinking I won't be here for that long but I know between his family and nurses he'll be in good hands.

Visitors

We had a few visitors today!! Brett Weber one of Luie's good friends from the neighborhood and school, who is familiar with CMH himself. Kids under the age of 18 aren't allowed to visit, but other patients, is a bit of a loop hole. He is an out patient but we went and met him in the teen center, so no rules broken and Luie got to visit with a friend, and it was a great motivation for him to walk. He did get a little tired, the walk was a bit long so he boosted his painkillers so it wouldn't hurt.
We also had elves visit with gifts. Notice his Cubs hat? Apparently there was a patient here before during Christmas that felt sad that kids did not get presents here during Christmas so he comes back with elves and tons of gifts for kids of all ages.

Luie walked back to his room from his visit with Brett and found Meagan, his cousin and Michael another cousin, waiting for us. Together we all played Pictionary. We tried The game of Life, but it was complicated, so we switched. He loved having so many special people around him. He just wants to know who is next?

He's sleeping now. He had a very busy afternoon. Walking, bathing, sitting, playing games, and practicing his breathing. I think I need a nap.

ZZzzzz......

A message from Lu

I'm still in the hospital and i'll be here for a little while more. I've got a billion things connected to me and they are getting annoying, I'm pretty sure i'll be home by Christmas. I have to get up and walk later on soon. Yesterday when I stood up I felt like i was going to faint. Tomorrow my dad is going to sleep over and we're going to do a bunch of stuff together. I have movies to watch and video games to play. I get visitors almost everyday and my mom sleeps over everyday. I can't wait to get out of here, I can't wait till Christmas and I can't wait till i'm better. Hopefully see you soon, pray and happy holidays.

He likes the attention

I got yelled at for not posting, so I apologize. Yesterday was a pretty good day. They were giving Luie another med that is like Motrin, through his IV. It doesn't control fever but it did seem to help with his pain levels yesterday. He had a small fever in the morning, but not the rest of the day. He slept for the most part although his grandma and cousin stayed with him, and that was great. For both of us. Thank you Margie and Monica. Dad came he kept him awake and they played games together. He even smiled several times. You can see it in the picture. He had the labtop most of the night so I didn't update because of him. I got to go home shower, eat, and slept the best hour ever, and I got to see the other kids and had dinner with my husband. Sure it was pizza slices from Falco's but we loved the time together. They all miss Luie so much. For as much as they fight, he is in most ways their little leader and they miss him. He received some balloons yesterday and the cutest bear, thanks to the Ciccone's, he was very happy. It was very heart warming to me. No tears, no tears....He's loving the messges, so don't stop. He likes the kids messages and teachers specially. Not that he doesn't like my friends, he says those are for me. Which I love.

Tonight things went better then the night before. He woke up a couple of times, but went right back to sleep. I had a small fight with him because he wanted to stay up at 3:45 in the morning and watch TV, but he doesn't remember it. He's sleeping now, and I'm having the nurses come in to check on him. He looked a little pale and then we saw blood in the tube that keeps his stomach empty. Oh yeah, he won't be eating for another few days. They said it was pretty common, but they would check with his surgeon. They are going to wash him up now so I will update as soon as I know more.

Oh, thanks to our neighbors that made and signed his get well card. We appreciate it.

Another day

He was talking a lot more this morning, but still very tired. They gave him some goals. He is to sit in a chair today and work on breathing. They adjusted his medication and so far it seems to be working better. He's sleeping now and will be spending time with his Nana so I can go shower and visit with my other kids. I will be back here tonight. Feel free to leave messages, he likes when I read them to him. He wasn't to happy about my posting his intestines on the internet, but was glad everyone liked seeing them.

Thank you all for your messages, support, and prayers they mean a lot to whole family.

Sleep...pain...

Woke up at 4:30. Luie slept for about 4 hours straight without boosting his pain medication. Not a good idea. I fell asleep, not a good idea, and he woke up crying in pain. It took him about 3-4 pushes of the button to get him comfortable. He just told me "I'm sleepy, keep pushing my button." It hurt to tell him I can't do that. To prevent over dosing he has to be awake and push the button or ask. Right now his pain is under control, and I watch the clock. Every 6 minutes, I tell him he can push the button. He does, but now it's making him sick to his stomach. I don't think I will be sleeping much. I think I will wait 12 minutes before I tell him again. Night, night. Please excuse the typos.

Managing the pain

Well it's been several hours since Lu has been out of surgery. Since then we have been spending time with him and controlling his pain. His dad Lu, and his step-dad Big Justin, also his Titi Sandra and I were with him once he returned to his room. They left one by one once Luie gave them permission to leave. I was lucky they were here and I had a chance to get something to eat. Luie, really wanted them here and anytime he awoke he would ask for the one he couldn't see. His pain levels are pretty bad and he really seems to have taken to his button that releases the pain med. He's been sleeping for the most part, waking up now and then because of the pain and pushing that button. He liked listening to me read the blogs but I only read so many before he fell asleep again. He did say to thank everyone for your thoughts and prayers. All his parents thank you as well. Lu, Big Justin, his step-mom Cherie and I.

Surgery is Over

His inside now outside.

They're done!!! Dr Barsness just came to see us and gave us the good news. All is done and it all went well. They removed the large intestine and even brought us a picture to keep, yuk! Interesting but yuk!!! We will be able to see him in 15 mins and then in 1/2 hour he will be in his room.

Almost....

The surgeons nurse just called us and said all is fine and the bowel is almost out. Then they will work on his Ileostomy. So I'm assuming another hour. It's really nice that they can just call us on our cell phone to update us. I'm getting a little jealous that they call his dad's cell phone and mine!!! I'm ready to move to another room, or just walk around. I hate being anxious.

In Surgery

Last night was not easy. Not much sleep and many trips to the bathroom. Many! The nurse told us they would come get us about 9:30. Now we are waiting. Luie went into surgery at 11:05 and they told us it would be about 3 hours from there. We had to say goodbye to him about 45 minutes before that. He said he was a little nervous but seem to be ok. They gave him something to sleep while we were with him and it was pretty funny. He couldn't keep track of what he was trying to say. He couldn't keep track of what I was saying. Before we knew it he was out. So we've been waiting in waiting rooms. Justin, Lu and I. Anxious, we keep moving from room to room. Cafeteria and back to another waiting room. Now we're about 1/2 hour away from finding out if they are done and really just trying to keep busy. His pain levels could be high but he will have his own little pain medication drip button. Well to wait some more.

First day in the hospital

This morning we took Luie for breakfast with his
whole family. His dad, step-dad, step-mom, all his siblings and I. Today he was to be in the hospital by noon to get ready for surgery tomorrow. He's been a trooper, even when they put the tube down his nose. (He's covering it in the picture) The tube feeds him this clear liquid, that cleans out his intestines to prep him for surgery. This will be an interesting night. I was worried about the 6 hour surgery and how was I going to get through the anxiety of it. I asked the docs if I can be put under for the 6 hours. But with this liquid stuff that they are giving him, he will be going to the bathroom all night and will need my help. So I see myself sleeping for those 6 hours of surgery. Solves that problem. Luie is supposed to be here 5-7 days after the surgery so he will be home with his Dad and family for Christmas. I have faith in the Lord that he will be in that operating room, that he will be guiding the surgeons hands over my son. The Lord brought us to this and he will get us through it. I have faith in that. Amen. They've told us that his surgery is scheduled for 9:30am so we are excited that we don't have to wait all day like we were told. Well we will update tomorrow.






A Little History
My son has been sick for the last year
and a half. He was diagnosed with ulcerative colitis, (a disease of the intestine, specifically the large intestine or colon, that includes characteristic ulcers, or open sores, in the colon)
after his first flare happened in May of 2008. His symptoms started with abdominal pain, blood in his stool and diarrhea. About 2 weeks after his 12th birthday. He was hospitalized with dehydration and anemia, and after so many test, and speculations of what he might have, and hours of Internet research, he was diagnosed with UC, as we call it. They put him on prednisone, a steroid that controls the swelling, and Asacol, 6 tablets a day he would take for the rest of his life. He went home about 5 days later, with a food restriction he was not happy with at all. In July while we were in Disney world he flared again. We came home and went straight to the emergency room. He was hospitalized again. His UC was controlled and 5 days later he went home. He was doing well eating whatever he wanted and with no symptoms. Taking his medications as directed, we even got him one of those little pill boxes to make sure he didn't forget to take his pills and I can keep track. January 27 we ended up in the hospital again. His blood count was extremely low. Oddly enough he had not lost much blood that we'd noticed and his energy level was high until that week. They started with the same routine, the prednisone and IV and it wasn't working. They had to up the dose and give him a transfusion because his blood levels were still going down. He was improving, so they sent him home only to end up in the hospital again, 3 weeks later after having had a colonoscopy done. At that point it was decided that the Asacol was not working so they put him on the next med, 6MP. It takes 3 - 6 months for that med to work so he had to be put on prednisone for 3 months again. At the end of 3 months he flared so they left him on the prednisone for 3 more months. He flared again. 6MP didn't work. The doctors decided to put him on the next medication, remacaid. A med I was not comfortable with it since it can cause cancer. 4 weeks after being on remacaid, he flared again. He should have been healthy for at least 6 weeks. Remecaid was not working either. Luie was hospitalized in November and it was time to consider surgery. We left the hospital after 5 days again, this time with some serious thinking. Luie's dad, step-dad, step-mom and I all discussed it, Luie too, and decided this would be the best thing for him. December 14th they will preform the first of three surgeries. In surgery 1 they remove his large intestine. In surgery 2 they create a J pouch out of his small intestine, and in surgery 3 they attach the J pouch to his exit. The second surgery is done 3 months after the first and the 3rd, 6 weeks after the second. Our goal is he be done by the time he gets to high school.