Thursday, September 24, 2009

Discharge Day, HORRAY !!!

I just tucked Luke back into his hospital bed after waking him up from a sound sleep to take his pills. Have you ever had to wake up a five year old to do anything ? let alone take pills...yikes. He has been very upset about the pill taking thing, but yesterday and this morning he took them just like a grown-up, big improvement. I guess I should have had the nurses give them to him early tonight , he has been up walking around the room and standing up to play on the computer today, it doesn't take much to wear him out. Mike is on his way to the hospital. We should be discharged tomorrow afternoon (Just in time for Friday traffic out of the city :( ) Luke is having his picc line put in. This is a substitute for his broviac he had removed a couple of days ago (they were worried it may have been the place the mold was hiding) The picc-line is a I.V that can stay in for about 3 months. Mike and I are also going to learn how administer home hydration and to draw blood from Luke's line.

UPDATE ...The follow-up C.T. scan showed the Fungal Pneumonia was still present so...this means going to Sacramento FIVE days a week for FOUR weeks to have a special medication that will run into his line for about an hour. Then they will check again with another C.T to see our progress. I called Luke's pediatrician in Jackson to see if we could work out something closer to home (waiting for a call back).

I am amazed how time heals. God is so good, Luke hardly remembers how sick he was. His blood-shot eyes are clearing up, mouth almost completely better, and he is only vomiting once or maybe twice a day. He ate a half a banana today (that made me jump for joy..I had to take a picture and text it to Daddy, I was so excited). He has also been snacking on some pretzels and pirate booty. I keep joking with the nurses that we will have to rent a u-haul to move out of here. I am so thankful for all the cards and gifts you all sent. During the time Luke was barely talking he was so sick, we had to move into a new room, I took down all the cards and packed up all our things. Luke looked around and said "I wanna move to our new room looks empty in here". He has really enjoyed all the love you all have shared, the musical cards, the pop-ups, the cute fuzzy animals, the toys and books...he may have forgotten the pain but he will always remember how many people love him...Isn't that cool?

Monday, September 21, 2009

Fundraiser Dinner Oct. 3rd

Come out and join us on October 3rd for great food, tons of prizes, and live music at Preston Castle. If you have not bought your tickets yet, make sure you get them soon, they are going fast! See you all there!

Tuesday, September 15, 2009

In God's waiting room again...

The good news is the transplant of Luke's stem-cells worked !! The new cells en-graphed into his bone marrow and are making an abundance of new good guys. We are praising God Lukas has made it through the worst part of his treatment. He is slowly feeling a bit better, awake more watching some t.v. and today built some Legos! (that's a big deal). His fever is gone! yay! but he is still vomiting, having diarrhea and he has developed a cough. His mouth and lips are healing pretty fast and he has only had two small doses of pain medication today.

The bad news is during the time he was having fevers two of his blood cultures grew a type of slow growing mold. I guess we breath in mold spores all the time but our bodies fight them off, but when your immune suppressed they flourish. They took Luke down to have a C.T scan of his lungs a couple nights ago and they do see some stuff in there. The ear,nose and throat doctors put a camera up his nose twice (not fun), and tomorrow he will have a MRI to examine his sinuses. He is on a couple different anti-fungal meds. and a team of specialists are trying to figure out this whole mold thing, they say they haven't ever seen this before... Hearing doctors say "We haven't ever seen this before...this is extremely rare" is getting pretty common for us. I'm trying not get worried, the doctor said treating this can take several months of IV medication 5 days a week or even surgery to remove it. That made me feel a little sick to my stomach. Lord please have mercy on my baby...I'm praying he does well for his MRI (he will be awake) and that his sinuses are clear and healthy and that the Lord will intervene into the doctors conversations and give them wisdom to see what this really is and how to deal with it.

Friday, September 11, 2009

Mommy's back on duty

I had a great time at home this week loving on my kids. I also got in some cleaning therapy...that always makes me feel better some how. Luke's eyes look terrible (broken blood vessels) but the doctor said that always looks worse than it is. They took an ultrasound of his liver because his bilirubin count is elevated and they said it looks like it is doing okay so far. His gall bladder is a bit mucked up at this point, so they will continue to keep a close eye on him. Lukas has had and continues to have really bad nose bleeds lasting an hour or more at times, usually while he is sitting on the potty. Mike is an amazing Daddy...he was pinching off Lukes bloody nose, cleaning up potty mess and suctioning out his mouth when I got here today...and he had it all under control. Luke was extra brave for Dad this week.
The room is looking"festive"...I guess you might say. We have all the cards you have all sent hanging on the walls, paper chains, snowflakes, paper spiral things Mike made, balloons, it's crazy cool. The child life lady brought in this giant bubble machine today too. It has a projector that shines on the celing colorful moving patterns and the machine itself is a four foot tall plexy glass tube filled with water, floating balls and beads. A pump pushes air bubbles through and lights fade from red to blue to green and then yellow. Pretty phycodelic when your on moraphine I bet!

P.S. A big thank-you to all for the fun mail that has been sent to the hospital (Luke loves it) and to Olivia Crocker for feeding our family so many times...I didnt even have to go grocery shopping while I was home this week! You are all such a blessing to our family :) God is so good to us. ~Love Erica

Tuesday, September 8, 2009

Trading Places

Mike came to switch places with me so I could get some much needed sleep and time spent with Joe,Grace and Peter. 12 days sleeping in a plastic hospital sleep-chair is getting hard on my back. I have talked on the phone with Mike like five times since I have been home. Luke is still having horrible pain in his throat,chest and tummy. He has been utilizing a suction tool to clear mucus and saliva so he doesn't have to swallow (he loves that...really). He has been having platelet transfusions everyday and today he had two because of a nose bleed that lasted over an hour. He is still running a high fever, I guess that is one of the reasons he is going through his platelets so fast. Tomorrow is day 7 since transplant! They say it takes about 7-14 days for new cells to start growing and once that does happen all the owies clear up fast. I hope to see the light at the end of this tunnel soon, it has been a rough ride. Luke has remained sweet through all of this, he knows this is all part of the battle "we're killin' the bad guys" he says. I am so proud of him....Mike just sent me a picture on my cell phone of Luke sitting on the potty with the suction in his mouth...oh, my baby... Lord, get him better fast... this hurts soo bad.

Fundraiser Dinner

Saturday, September 5, 2009

Tuff Stuff

I can't believe it's almost 4 already, the day is going by fast. Luke is sleeping all wrapped up in towels after his bath. I have classical music on the radio, the nurse said its soothing. We had a scary episode earlier, Luke sat up and started coughing and his whole body shook, he stopped breathing for a second and then threw up the lining of his esophagus...of which I know now but at the time I was pushing the nurse button wondering what on earth was coming out of his body. Yucky, sorry if this is too much info, but if you ever have a stem-cell transplant at least you will know what to expect...maybe it's still to much info...well I could go on with more yucky stuff but I won't. For now we are getting one of those push button pain medication things so Luke won't have to wait in pain for a nurse to get him medication. Oh, he just woke up. Better go ~ Erica

Tuesday, September 1, 2009

Luke's Favorites

It's 5:20pm and Mike just called to ask what I needed him to bring tomorrow when he comes with the kids. Luke and I were both taking a I'm awake...but Luke is still sleeping. Luke has been feeling pretty okay. He is on IV nutrition but still is managing to eat some dry frosted flakes...I guess it has paid off depriving my kids of sugar cereal, he was excited I would LET him eat it! They say it helps decrease the soars in the mouth and throat if he continues to eat and drink a little. He is still throwing-up a few times a day...well I think twice today...seems to be getting better, but now it's coming out the other end, if you know what I mean. He has watched 4 Star Wars movies and has been sitting up at times playing on the computer. One of the child life specialist gave him a "About Me" page to fill out and hang up in his room, he answered all the questions without any prompting from anyone. I thought you might like to learn more about Luke too.

My Name is Lukas
I am Five years old
I am in Kindergarten
My favorite movie is, Indiana Jones and Star Wars.
My favorite food is, egg sandwiches.
My favorite type of music is, break dancing music.
My favorite things to do are, playing with my brothers and sister and cousins and playing my game boy DS and Computer.
If I could go anywhere in the world, I would go to New York City or Disneyland or Lego land.
It bothers me when people, don't leave me alone when I want to be left alone.
When I am upset, My Family, helps me to feel better.
Other things I want you to know about me are, I want to tell people about Jesus because he helps me.

Pretty cute... Tomorrow is transplant day !! At about 11am Luke will get back the stem-cells they harvested from him. They will hook him up to the monitors and check his vitals every 5 minutes for about 4 hours, while the cells are infusing. Pray they make their way back to his marrow quickly and start reproducing new healthy cells quickly! They say it takes about 10-14 days for counts to recover during that time most patients need round the clock pain meds. I'm also praying this will not be the case for Luke, I know God has the power, can't hurt to ask. Thank you for reading this and for all your support in prayer and encouragement through the mail. Luke is loving his mail. I will update again soon~Love Erica