Back To School

Here are some quick bullets for those that don't want to read my very long post, but want to know what is going on with Luke.

• His function fell below 50%, and then came back up to 50%.  He is down 40% since March.

• Luke will get a kidney transplant once he reaches 30%. We have no idea when this will be. He will be tested monthly.

• His kidneys are making it hard for him to keep potassium and vitamin D levels where they should be.  He is taking supplements for this.

• His kidneys are not assisting in the production of blood like they should, so he is still anemic.

            Luke started 1st grade about three and a half weeks ago.  On the first day of school he felt sick in the morning and threw up right before walking in to class.  We assumed it was nerves because he felt fine afterward and went to school the rest of the day.  The next morning he woke up and wouldn't eat breakfast because his stomach hurt and he was afraid to throw up at school again.  This continued for the next week and a half and he threw up just about every other day.  I then found out he had thrown up at school but didn't tell anyone because he felt better afterward, and didn't want to go home, and didn't want me to call the doctor.

          Well....I called the doctor.  Luke's nephrologist wanted to see him that same day, so to Luke's dismay I pulled him out of school and took him to the hospital to see his kidney doctor.  He got a full set of labs and the neph said he would call me that evening.  Luke got to go back and finish his day of school.  After school he went to karate class.  I found out that evening that Luke's kidneys were failing to do several of the jobs they are responsible for.  Luke was "near depletion" of potassium and vitamin D.  He is still quite anemic, and his function had dropped below 50%.  When his function was tested in March it was around 90%.  This was all very shocking to us for a couple of reasons.  First off he had a great summer.  Never got sick, and only swelled up once.  Also, aside from the random vomiting he felt great, he had just went to karate class!!  He loves school and wants to be there, he has energy and a good appetite.  The neph seemed concerned and said we should test him in a week, after pumping him full of potassium and vitamin D, to see if the function would come up.  Luke has gone from 50% back up to 90% in the past and so we were hopeful that he would pull off this miracle once more.  The neph said that if we test again in a week and the function is still below 50%, or lower, then we would need to start the process of getting Luke a kidney transplant.

         In the mean time Luke could not take any diuretics, so he had been watching his salt intake, and sleeping in an almost sitting position, to try and slow the inevitable swelling that we knew would come when being off diuretics for so long. He made it about two weeks before he woke up and could barely open his eyes.  A week later we went for labs again.  A week after being under 50% luke is now right at 50%.  This is good and bad news.  Good news because we do not have to start looking for a donor right now. Bad news because he dropped 40% in about 6 months. His potassium only slightly went up, and his vitamin D really didn't budge, but the doctor said that vitamin D takes longer to go up.

The plan for now is to test Luke monthly.  When his function gets near 30% we will start looking for a match and get him a new kidney.  We have no idea when this will be.  We had originally hoped he would hold on to at least half the function till he was a teen or older, but that doesn't seem possible any more.  The kidneys are responsible for some very important jobs in the body, and his are in fact failing at their jobs.  If this were an employee they would most definitely have been replaced by now, and this is how I feel about his kidneys. A transplant would be scary for sure, but Luke deserves a new start.  He worries about stuff that most 6 year olds have never even heard of.

Luke is tough, though.  Tough enough to go to karate class with barely any protein, potassium, or vitamin D (he did look pale, but I had no idea!).   Tough enough to walk into his 1st grade class, while it is already in progress, with big, swollen eyes (he said his class was much better about this than they were in kindergarten).  Tough enough to endure the needles that he truly fears (he totally head butted me this last time when they stuck him, good thing I am just as tough as he is), and tough enough to put up with the random pain in his legs and tingling in his hands and feet. And tough enough to eat fruit and plain noodles while everyone else is eating pizza and cheeseburgers (to Luke this may be the worst part!!).

Please pray that Luke continues to breeze through whatever may come next.

Hoping To Go Home By Thursday

I took Luke to the ER on Saturday evening because of stomach pain and trouble breathing. After an ultrasound of all his organs, a chest xray, and blood tests Luke was taken by ambulance downtown to Children's Memorial. The doctors wanted him to be close to his team of kidney doctors. It turns out he has a serious infection in his intestines and in his blood. This is common in kids with Nephrotic syndrome. They carry extra fluid in their bellies, and the fluid is a perfect place for bacteria to thrive. The infection really knocked him out. His kidney function is down, his potassium and calcium are low, and his blood count was so low they were considering a transfusion. As of today his blood count is back up and his other numbers are slowly coming up as well. In the morning he will undergo a procedure to put a PICC line into his arm.  This will allow me to give him medication through an IV at home. I think we will get to go home on Thursday, but no one is telling me for sure yet. I am thinking he won't be back to school until Monday.  He can attend school with the PICC line in. It will be wrapped up and out of sight, and should not be a problem. I will also be having home healthcare professionals coming to the house to help me care for the PICC line.

Luke's spirits are up today, and we are both eager to get home and see our Lexi-girl, Dad, and sleep in our own beds!

Please pray for Luke to continue to be strong and breeze through whatever may come next.

BIG news...New Hope

                                               








 On Monday Luke went in for what I promised him would be the last blood draw for at least two months.  It is always a struggle when he needs to give blood, and I always feel like the bad guy holding him down and making him do it.  Well, I feel guilty no more... The blood draw from Monday showed that Luke got "almost all of his function back," and "his function is at almost 100%."  We are looking at this as just short of a miracle.  We knew it was possible after we wiped out the C.diff for his function to come back, but given his history we did not have much hope.  Luke was definitely knocked down, but as his Aunt Katie said, "Wow, he is such a little fighter!"

Luke is still spilling protein, and we are still using diuretics to manage his swelling, but he is pretty much drug free.  Luke feels great.  Luke looks great.  We will still test his function every couple

months, and his Nephrologist is still meeting with other specialists to figure out if we are doing everything we can.  I will post again if the plan changes and I am hoping that post comes well after the holidays.

     

The pictures are what happens when your very smart six-year-old figures out how to use Photo Booth and has a sister that loves the spotlight...

                                                                                                                                                                                           

 Please continue to pray that Luke is strong and breezes through whatever may come next.

Halloween in the Hospital

My guy Luke has had a rough couple weeks. He has been having fever and vomiting off and on for a week, and diarhea for much longer. A stomach bug definitely made its way through our house last week. Alexa, Sean, and myself were all affected at varying degrees.  Luke got hit hard. I took him to the ER Monday morning for dehydration and dangerously low albumin (protein) levels. 4 days later and we are still here. Last night we found out that Luke has C.diff. This is a germ, or bacteria that lives in the colon that is known as flora, or gut flora. It turns to C.diff and becomes toxic when the flora becomes over grown from antibiotics. This made sense to us because about a month ago Luke was on antibiotics for about 10 days and that is when his bathroom issues began. We stopped other medications hoping they were causing the problem, but they weren't and his problems continued. So, we are still admitted and he is now being treated for C.diff (Clostridium Difficile Toxin).

We've learned more about Luke's kidney disease since we have been here. We found out on Monday that Luke no longer has 100% function in his kidneys. Through this whole journey since age 2 Luke has always had 100% function. Even after finding out that 50%of his kidneys were scarred, we still had that silver lining.  He was still functioning at 100%. On Monday he was only at 50%. After treating his dehydration his function went up a bit, but we are not expecting it to return to 100%.  And taking into account all the other factors, such as the scarring, and the fact that he has been relapsing for months, and that he is steroid resistant, the nephrologist is assuming that it will decline further. Luke's kidney function could stay where it is for some time, or it could go down slowly, or it could decline quickly, we have no way of knowing. What we do know is that once the function gets to 30% we will start the process of finding a donor and getting him a transplant.  Like I said, it could be months, it could be years. If we start the process at 30% then we can do an elective transplant with a living donor. He won't have to wait on a list or wait till his function is so low that other organs begin to fail. We will avoid dialysis, and get him a new kidney.

So, here's the plan. Get rid of the C.diff. No more cell cept. It hasn't worked yet and it has had him so weak that he is constantly sick. Luke will only take his Ace Inhibitor, which is believed to stop the progression, and diuretics to manage the swelling. We will test his function every couple months and move forward as the tests suggest.

For now we just want to go home. Luke misses school and his sister.  Alexa has pretty much moved in with Nee and Pa. They watch Dancing With the Stars together and Alexa is running her own hospital for stuffed animals out of their family room. We are so thankful for the flexibility at Nee's job. A big thank you to her bosses for letting her do so much from home! And Thank you to Nee Jojo for hanging with Luke so I could take Alexa Trick or Treating.  Thank you to everyone who has reached out. Our family, friends, and the families at St. Irene. It really means a lot to us to know that we have so much back up and support.

Please pray that Luke will continue to be strong and breeze through whatever may come next.

We're Home!

Luke was released from the hospital yesterday.  He was thrilled to go straight to Nee's (Grandma's) House  to see his cousin, Nicholas, who is in town from California.  What a great way to forget about the hospital and just play and have fun!

His belly went way down an his knees and ankles are completely free of any swelling or bloating.  His eyes were still pretty swollen when we left the hospital, but we are continuing the diuretic treatments at home, and have already seen some improvement in his eyes this morning.

Luke is still relapsing, but we are giving the Cell Cept a good 6 month trial, so we may be dealing with swelling and bloating for a while, as we pray that the Cell Cept will put Luke into remission.  We will be following up with the Nephrologist on Wednesday, and I will post again at that time.

Luke is so happy to be home, and we are hoping that any future swelling will not land us back in the hospital and can be dealt with at home.

Please pray that Luke will continue to be strong and breeze through whatever may come next.

Diuretics at the Hospital

After a couple weeks of carrying around extra fluid the oral diuretics that we started using on Friday did not work.  Luke woke up this morning with eyes swollen shut.  I called the Nephrologist and told him Luke needed something else, he is on day 6 of taking 3 different diuretics and he is still waking up like this.  The Neph explained that when you are as bloated as Luke, sometimes it is hard for the intestine walls to absorb an oral medication.  Luke was admitted into Central DuPage Hospital early this morning and is getting diuretics through an IV.  We will definitely be here over night.  The Neph is planning 2 doses and they need to be 6 hours apart.  Hopefully the 2 doses are enough, but we will see after the second one if the weight has come off.  Let's all pray that 2 is enough because Luke is very upset to be sleeping here tonight, and has asked repeatedly to go home.  He took a nap from about 12 to 2 and when he woke up he asked if he had slept for a night yet, because then he could go home.

Please pray that Luke continues to be strong and breeze through whatever may come next.

The Latest on Luke

Good News: Luke has started Kindergarten and loves it!! He has his moments when he misses mommy (and mommy misses him too!) but for the most part he loves it and looks forward to going each day.

Bad News: Luke already missed a day. Friday morning he woke up and vomited. His eyes were nearly swollen shut, and his belly was so swollen that no pants or shorts were comfortable on him.  He has gradually swelled up from 60 pounds to 75 pounds in the past week.  He is relapsing pretty bad and spilling as much protein as our test strips will test for.  After getting in touch with the Nephrologist it was decided that Luke would take diuretics to release the extra fluid he is retaining. We started the diuretics last night and we are hoping for some signs of relief for him soon.  If the diuretics are not working by late afternoon we will need to admit him to the hospital to get the diuretics in an IV. So, we are praying that the oral medication works and Luke is feeling better soon.  If you refer back to my posts "The Difference a Diuretic Makes" and "My Eyes Aren't Workin" you will see that we have not used diuretics since Luke was 2.  They worked well then and we are hoping they work well now.

Luke is still on antibiotics, and we restarted the Cell Cept a couple of days ago. I am realizing now that the antibiotics are not the magic cure I thought they would be.  It seems to me that it is actually the onset of antibiotics that usually puts Luke into remission.  The antibiotics are done in a couple of days and my prediction is that the next time Luke needs them, whether it be an ear infection, or pink eye, or whatever normal childhood illness he picks up, they will give him an antibiotic. The onset of it will put him into remission and then the remission will fade into a relapse, unless the Cell Cept starts to work.  We shall see.

Please pray that Luke continues to be strong and breezes through whatever may come next.