Hi all, thanks for your patience. I meant to post last Friday when Luke's midline came out.
His last dose through the midline was 3 pm last Friday. The nurse graciously came out at 3:30 to take it out. Luke was really glad he didn't have to wait until Saturday. He couldn't wait to get it out. I wonder if it was just a bad reminder or if it just bugged him being in his right arm...
I filled his prescription at CVS that afternoon. The pharmacist raised her eyebrows on 60 mg of Prednisone in one day for an 80 pound 12 year old. She said it was very aggressive. I agreed and asked her if we could move it down, what would she suggest? She said try 20 mg in the morning and evening, that would be 40 mg.
When I got home, Mark said the 40 mg per day is the highest dose that he ever took with his colitis when he was in flare up... and now I can see the beginnings of the "moon-face" roundness on his face...he just doesn't look like himself...
So much to catch up on...
My mom and dad were here last week. Dad was working on the basement room for the girls. We only have some painting, trim and carpet to finish and they can move in. it has gone fast and we are excited to be this far. And Mom made meals and did 12 loads of wash in one day! Catching up after Luke and I at the hospital so many days...and I had told Luke we wouldn't have maid service at home! We appreciated spending time with both of them and for their labors of love.
Then we left on Sunday for Pokagon Gateway retreat weekend. It was a nice getaway until Tuesday night.
Today Mark & I took Luke to a naturopathic doctor in Spencerville. She identified the trouble areas to be Luke's small and large intestines and his liver. She identified several contributing problems and Luke is beginning a treatment regimen today which over time will include (in my simple understanding): removing the contributing problems, healing the tissues, reprograming the attacking immune system and then building up his immune system again. (Crohn's is an autoimmune disease which means that his immune system is attacking a part of his body--his intestines mostly.)
Part of the treatment includes diet changes--not sure at this point if they are only temporary or will be permanent. They include gluten-free, dairy-free, and low sugar. (One of the findings today was candida, which is systemic yeast overgrowth which feeds on sugar.)
We feel blessed to be able to explore several options and our desire is to get to the root of the problem rather than just attempting to manage the symptoms. So we have an appointment to meet with a pediatrician tomorrow at noon. (We have met with a GI doctor and a surgeon, but we want to be established with a pediatrician who knows Luke and can check his whole body.) We also have a referral into Riley Children's Hospital in Indy. There are only two ped GI doctors in Fort Wayne, and after dealing with one, we asked nurse and doctor friends in this area, and they are all recommending that we get established at Riley and work with GI doctors there if needed.
We so appreciate your continued prayers. We know that whatever any of us decide to pursue for our health, the Great Physician is the one we must ultimately turn to for healing. We continually remind ourselves of this.
We feel your prayers and praise "the God of all Comfort."
Julie
Wednesday, March 7, 2012
Saturday, February 25, 2012
We are Home!
We got home last night...
The gastroenterologist who did the scopes says no surgery. The lump was inflammation and infection in and around the small intestine. He said there is no way to know if there is any permanent stricture until everything is calmed down and that may take a couple of months.
In the meantime, Luke is done with the antibiotics. The midline was put in his upper right arm so that he could come home and still receive the steroids he was getting at the hospital. It is a line that goes into his vein about eight inches or so, up his arm, across his shoulder and ends somewhere by his collarbone. It delivers meds right into his body quickly. They use a midline instead of an IV because an IV must be changed every three days, while the midline can be in much longer. He is going to get steroids like this for 7 days, then switch to oral.
Yesterday, the nurse told me the name of the home health agency that would be sending a nurse out. At that time, I thought they would be coming every day to administer his meds. When I called the agency on the way home from the hospital to let them know we were on the way home, I was exhausted and looking forward to being home. Luke was in good spirits and wanted us all to play a game together. (Steroids are working...)
Then the nurse told me that she would be teaching ME how to administer the medication and that she would be at our house for 2-2 1/2 hours.
She arrived around 8 pm and didn't leave until 10:30. She changed the wrapping around the midline. She showed me the four step process: first give saline flush, then the steroid slowly over 5 minutes, then saline flush, then heparin to clot the line.
She helped me do the first dose at 10:30 last night. Now he will get it at 7 am, 3 pm and 11 pm. This is until next Friday.
Then we have follow up appts with gastroenterologist in the next week which includes small intestine barium contrast. (Yum, Luke's new least favorite thing...) and then decisions on what longterm treatment. Steroids are only good for short term.
Luke's new favorite number is 8787--the number to dial for room service. "Yes, this is Luke in room 341 and I would like to order my dinner. I would like a grilled chicken sandwich with 10 packets of ketchup, steamed carrots, two Activia yogurts peach and strawberry, and angel food cake with strawberries." Ahhhhhh.
As I mentioned though, we are home now. And even though there is no room service, he and I are very glad to be here. Things are good now. He has no pain, just the nuisance of the midline which has to be in the right arm because the line can make a gradual turn up the arm toward the heart.
We are overwhelmed by the love and care and prayers. Luke kept shaking his head whenever we got a text, phone call, email or message of someone who was praying for him. He said, I never knew that many people cared about me. I can't believe they are praying for me.
Luke told me he wants to make sure he is acting how God wants him to act and that God gets the glory for everything. He said he is glad it is him and not his little brother. He knows this is long term and we've had lots of talks about what that means, both physically and spiritually. It is a lot to think about.
We appreciate all of your prayers. We feel them every minute.
Time for the 3 pm dose!
The gastroenterologist who did the scopes says no surgery. The lump was inflammation and infection in and around the small intestine. He said there is no way to know if there is any permanent stricture until everything is calmed down and that may take a couple of months.
In the meantime, Luke is done with the antibiotics. The midline was put in his upper right arm so that he could come home and still receive the steroids he was getting at the hospital. It is a line that goes into his vein about eight inches or so, up his arm, across his shoulder and ends somewhere by his collarbone. It delivers meds right into his body quickly. They use a midline instead of an IV because an IV must be changed every three days, while the midline can be in much longer. He is going to get steroids like this for 7 days, then switch to oral.
Yesterday, the nurse told me the name of the home health agency that would be sending a nurse out. At that time, I thought they would be coming every day to administer his meds. When I called the agency on the way home from the hospital to let them know we were on the way home, I was exhausted and looking forward to being home. Luke was in good spirits and wanted us all to play a game together. (Steroids are working...)
Then the nurse told me that she would be teaching ME how to administer the medication and that she would be at our house for 2-2 1/2 hours.
She arrived around 8 pm and didn't leave until 10:30. She changed the wrapping around the midline. She showed me the four step process: first give saline flush, then the steroid slowly over 5 minutes, then saline flush, then heparin to clot the line.
She helped me do the first dose at 10:30 last night. Now he will get it at 7 am, 3 pm and 11 pm. This is until next Friday.
Then we have follow up appts with gastroenterologist in the next week which includes small intestine barium contrast. (Yum, Luke's new least favorite thing...) and then decisions on what longterm treatment. Steroids are only good for short term.
Luke's new favorite number is 8787--the number to dial for room service. "Yes, this is Luke in room 341 and I would like to order my dinner. I would like a grilled chicken sandwich with 10 packets of ketchup, steamed carrots, two Activia yogurts peach and strawberry, and angel food cake with strawberries." Ahhhhhh.
As I mentioned though, we are home now. And even though there is no room service, he and I are very glad to be here. Things are good now. He has no pain, just the nuisance of the midline which has to be in the right arm because the line can make a gradual turn up the arm toward the heart.
We are overwhelmed by the love and care and prayers. Luke kept shaking his head whenever we got a text, phone call, email or message of someone who was praying for him. He said, I never knew that many people cared about me. I can't believe they are praying for me.
Luke told me he wants to make sure he is acting how God wants him to act and that God gets the glory for everything. He said he is glad it is him and not his little brother. He knows this is long term and we've had lots of talks about what that means, both physically and spiritually. It is a lot to think about.
We appreciate all of your prayers. We feel them every minute.
Time for the 3 pm dose!
Friday, February 24, 2012
Update 5
Luke went in for the scopes around 12:30 on thursday afternoon . He was feeling okay. The painful lump in his abdomen seems to be pretty much gone. He is on two antiboitics and a steriod. We will update again after we talk to the doctor. Thanks for your prayers. Luke has been overwhelmed to see how many people care about him and are praying for him.
Wednesday, February 22, 2012
Update 4
Well the Doctor moved the scope to Thursday at noon. Today they inserted a mid-line catheter in his upper arm so he can get his meds. It is like a more efficient I.V. He should be released after the scopes tomorrow. A home health nurse will come to our house for five days after he is released to administer the medication through the mid-line so he doesn't have to be at the hospital, and after that he will probably be taking oral meds. At the hospital now he just moved to a private room. The doctors are using liquid meds via I.V. to bring down inflamation & infection. Luke says if you're eating supper tonight, whatever you're having, it's got to be better than miralax!
Thanks for the prayers!
~Rachel
Thanks for the prayers!
~Rachel
Tuesday, February 21, 2012
Another update
This is Rachel now. They got the CT scan results back and talked to the Doctor. It looks like he has the classic symptoms of crohn's disease. He will be at the hospital over night and in the morning he will have a colonoscopy and an upper endoscopy. The painful lump in the lower righ abdomen is inflamation and thickening of the intestine. We'll hopefully find out more after the scope about where to go from here. Thanks for all the prayers!
~Rachel
~Rachel
Update
Hey everyone here is another update on Luke. The Drs office called this morning and said that when ever we could show up they would fit Luke in. So my parents and Luke left around 10:00 o'clock this morning. They had to wait almost all morning though before Dr. Smith could see them. When he looked at Luke's charts he said that he wanted another CT scan done with an I.V. contrast. So about a half an hour ago Dad, Mom and Luke headed over to Luthern Children's Hospital for the CT scan. The results are going back to Dr. Smith and he is going to read them. They are probably going in for surgery tonight. If the Dr see anything on the CT scan it is going to be a surgery to fix what ever is wrong. If he cant see anything it is going to be exploratory surgery.
Please pray for Luke. He had to have a CT scan before and when you have a CT scan done you have to drink something called berryium(?). He had a lot of trouble getting it down. So pray that it will be easier this time.
And that our family can just be peaceful with knowing that God is in control.
Miranda
Please pray for Luke. He had to have a CT scan before and when you have a CT scan done you have to drink something called berryium(?). He had a lot of trouble getting it down. So pray that it will be easier this time.
And that our family can just be peaceful with knowing that God is in control.
Miranda
Monday, February 20, 2012
Update on Luke's Health
Hi everyone. Just a quick update on Luke's health. As many of you know, he has been dealing with various infections and stomach aches since around September of 2010 and we just haven't gotten to the bottom of it.
In December of 2011, he had blood work, CT scan of abdomen, ultrasound of groin and liver. All clear. Still dealing with infection and pain in abdomen.
After the ski trip last weekend, Luke showed me where he has been saying it hurts. There is a lump I can feel there now. Then his groin area swelled up again. Our family doctor saw him and said probably a hernia causing pressure in the area and referred us to a pediatric surgeon and called for an ultrasound.
So today, he had an ultrasound. The tech could feel the lump, but does not think it is a hernia. She said the radiologist would read it tonight, send results to the doc and tomorrow morning, we should get a call. Then we see the pediatric surgeon, or he calls for a CT scan first. then possibly exploratory surgery.
Luke is in good spirits but just moving a little slow and is tired. This is not at all normal for this boy, as many of you know...
We appreciate all of your prayers and will try to update tomorrow as soon as we know something.
Julie
In December of 2011, he had blood work, CT scan of abdomen, ultrasound of groin and liver. All clear. Still dealing with infection and pain in abdomen.
After the ski trip last weekend, Luke showed me where he has been saying it hurts. There is a lump I can feel there now. Then his groin area swelled up again. Our family doctor saw him and said probably a hernia causing pressure in the area and referred us to a pediatric surgeon and called for an ultrasound.
So today, he had an ultrasound. The tech could feel the lump, but does not think it is a hernia. She said the radiologist would read it tonight, send results to the doc and tomorrow morning, we should get a call. Then we see the pediatric surgeon, or he calls for a CT scan first. then possibly exploratory surgery.
Luke is in good spirits but just moving a little slow and is tired. This is not at all normal for this boy, as many of you know...
We appreciate all of your prayers and will try to update tomorrow as soon as we know something.
Julie
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