Sunday, December 25, 2011

Merry Christmas!

Merry Christmas to everyone!  Since the Prednisone decrease, Jacob's mood is slowly lifting.  Praise the Lord!  He is smiling more and not as grumpy.  This is a good Christmas indeed!

Wednesday, December 21, 2011

Clinic update

Tuesday was another clinic appointment. 

The doctor saw us out in the waiting room and came out to see us before we were called back.  Jacob was not amused at his jokes.  The doctor asked if he was as sad as he looked. Jacob nodded and Joe and I agreed that he was really depressed. He said we would discuss that when we got back to the room.

While getting his vital signs done (normal, yay!!), one of the nurses walked by and recognized Jacob and saw Joe with us this time.  She always checks up on Jacob to see how he is doing. She saw Joe and came up and asked how the turkey and stuffing turned out and if they were going to cook together on Christmas. I had already told Joe about the nurse or else it would have been funny to see his reaction on how some strange lady knew about his and Jacob's cooking.  You see before Thanksgiving, Jacob and her discussed how Jake was going to help Joe with the turkey and stuffing.  She checked to see how the stuffing went on the next clinic appointment and at this appointment she asked if Jacob was going to help with Christmas dinner.  We shall see.

So, after we get back to the room, the doc comes in and says that his urine is still showing "some activity".  It is showing protein still.  Possibly blood too.  I have to verify that.  We did not want to start on any antidepressant and the doctor did not want to either. Since Jacob is now on the full dose of the CellCept, he is going to start tapering the Prednisone even more.  He thinks, and I totally agree, that by lowering the Prednisone dose, that Jacob's mood will improve.  So we started on 20mg today and on the 26th we will get down to 10mg and then five days after that we will be at 5mg.  We will stay there until the next clinic appointment.  I really hope his mood starts to improve.  It is so hard to see your child so sad. 

I also think that some of his mood is based on all the carbs he is consuming.  We have been lucky to find some more low sodium foods and he has been enjoying them.  Possibly enjoying them too much as he also gained some weight.  No biggie though, the weight will come off.

The doctor called today and said Jacob's labs are improving still.  I was half asleep so I did not think to ask what any values are though.  I work at the hospital so I am going to try to get a medical record release so that I can access his labs and clinic notes when I want to without getting in trouble.  I have yet to access them as I really want to keep my job....darn that HIPPA!  haha!

So that is our update.  He gets the Prednisone tapered a lot over the next 10 days and hopefully (keeping fingers, toes, and eyes crossed) his mood will improve!

Thursday, December 15, 2011

How heartbreaking!

We have been telling the kids that we want a Christmas list from them.  The only kid who created one was Jacob...AND we just got it.  I happened to glance at it hanging on the fridge but never really got to read it.  I did notice that he put "good tasting 0mg sodium bread".  I thought, "how sad".  Well, I am so glad I did not continue to read it.  Joe texted me while at work to see if I read the list.  I had told him I hadn't.  Well it turns out Jacob continued his list and towards the bottom he wrote, "better kidney".  That about broke my heart to read that text!  Joe agreed that it was sad to read.  I guess Joe gave him some reassurance that he has many people who love him and are praying for him and we will get through this together! 

On a good note, it got Joe motivated.  He came up with an almost no sodium BBQ sauce recipe.  I guess Jacob was hesitant to try it, but from what I have read on Facebook, it turned out pretty darn good!  I will have Joe post the recipe soon!!

Meds are yuck!

Poor kid!  He has never mentioned it before, but I guess his stomach cramps up some when he eats.  I am almost sure this is due to one of the medications.  I restarted the Prevacid but at half the dose he was taking to see if it would help.  I have not noticed him saying his stomach hurts so maybe it is working.  We were supposed to increase the CellCept to 1000mg from 500mg twice a day this past Monday but with the stomach cramping I decided against it.  I am going to see how he does the rest of the week and then go from there. 

Friday, December 9, 2011

More meds?!? (a clinic update)

(Since it is now December and I am finally sitting down to write all of this down, I am pretty much just cutting and pasting from my facebook page for these updates until I get caught up.  I hope to add clinic appointments and misc. items as they occur from now on.)

So this is probably the last one I will have to cut and paste from my facebook wall.  It is only a few days old.  Here is the update on the last clinic appointment.

BP was the best it has been 105/65. Creatinine is normal now. He still has too much protein in the urine. We are doing some major medication changes now. He can stop the water pill (HCTZ) and the Prevacid (will trial him off for a few days to see if it can really be stopped). The prednisone is down to 30mg a day. His Lisinopril is now doubled to 20mg a day. He will be started on CellCept. This is a med that is usually used for transplant patients to help prevent rejection of the organ. However, studies have shown that in 25-30% of patients with IgA Nephritis it works. I am still investigating it, but so far he still is spilling too much protein and if there is a chance this may help, then we are going to try it. He will be on it for about three months to see if he is in the 25-30%. Prayers and keeping fingers crossed. Also, he now has high cholesterol so he will be started on Zocor now too. Overall...not a horribly bad update, but could of done without the cholesterol news! At least his kidneys arent getting worse!

Update: The day after his clinic appointment, his doc called to say that there is less protein in the urine!  Praise the Lord! Is it the fish oil working?? No clue, but maybe it is!  The studies say 3000-4000mg of fish oil a day is recommended.  I only give him 1 tsp which is about 1200mg. I think it may be helping, but that is just my opinion.  Of course now that we have started the CellCept we may not know if it is that med or the fish oil, but thats long as he continues to improve!
I also have been noticing that his face is getting fuller.  This is a common side effect of Prednisone use.  I got the same side effect when I was on it as a child for rheumatoid arthritis.  "Cushing syndrome" is it called.  I pray Jacob doesnt get teased like I did.  I am an adult and still cringe when I think of the teasing I got because of my "moonface".  So far he has not mentioned being teased.  I have not mentioned his face to him and do not plan on it. Maybe he doesnt notice?? He is very sensitive to things.  He misperceives what we are telling him and thinks we are mad or yelling at him sometimes so I am not going to add this to it just for him to think we are teasing him! No thank you!

Medication list:
Prednisone 30mg every morning
Zocor 10mg every evening
Lisinopril 20mg every night.
Fish oil 1 tsp every evening
Cellcept 500mg every morning and every night

Our mentality

So far all these updates have pretty much just been about clinic appointments and his sodium intake that I have cut and pasted from my facebook page.  This one, however, is about how we are all dealing with his disease mentally.  It is not easy.  I have been looking back at facebook entries and can see myself getting a little weary as the days progress.  I know I have seen Jacob struggle too with irritability and some depression.  Now, I know some of it is attributed to the medication, but come on, what 13 year old boy wouldnt naturally feel a little down when his world has just been turned upside down?  He went from a healthy teen to one that takes medication three times a day and monitoring his BP and sodium intake.  What a bummer that is! 
The rest of the family is showing some frustration too.  The oldest at college is a little removed from the situation, but she still texts just to check up on her little brother.  In fact, when he was in the hospital that first night, she was in a panic trying to find a ride back home to be with him.  I convinced her to stay at school.  Five hours is a long drive to make and what could she have done?

My middle girl is normally moody, but her mood swings are a little more frequent lately.  I noticed she is always tired and also has been complaning about body aches more frequently. We will probably be getting her checked out soon, but my guess is that all of this adjustment to the family is just wearing her out.  I pray it is nothing more serious than that! 

Joe is also showing some frustration.  He is a middle school teacher and this year has been especially challenging.  He can tell you about that if he chooses.

It is not just the disease though that is stressing our family, I have to admit.  We also are moving across town.  What was supposed to be a stress free move has been nothing but stressful.  Here it is almost a month later and we STILL are not completely out of the other house AND there are boxes and bins everywhere here and in the garage to be sorted and arranged.

And we have gotten the first of the medical bills.  Wow!  Shocker to say the least!  For one night at the first hospital, we owe about $2000.  The bills from the physicians havent even reached us yet.  I am afraid to see what the bill is going to look like from the other know, the one we stayed at for seven days!  Oh well, it is what it is...

Oh and did I mention that I am not only working full time, but also a part time graduate student?  This is my first semester and let's just say it has not been fun trying to juggle all of the above with school added in. 

Yesterday, I think we all reached our point.  I cried off and on all evening.  What was the last straw was that there was a mix up with something for next semester of school and that was it.  I had reached my point.  I could not take it anymore.  I do not know what the other four's breaking point, but that was mine.  Joe is tired of living out of two houses.  He is done.  Our daughter had a fight with her best friend. She was close to tears all night.  Jacob is having to adjust to two new medications (which will be discussed in the next post) and is tired of the low sodium diet. 

We were done. 

But do you know what I love about my family?  Most times we bicker and argue, but last night, we just kept hugging.  Random hugs were given to all by all and frequently during the night.  We just comforted each other.  I love them.

Today, I decided that it needed to be a stress free evening. When I picked up the kids I announced that we needed a stress free evening, away from the boxes, away from the diet, away from it all, even just for a few hours.  Tonight we went bowling for 90 minutes.  Tonight we ate pizza that we did not make ourselves.  Tonight we laughed at our ridiculously low bowling scores.  Tonight we bickered and argued and smiled....until the bowling alley started filling up and Joe got worried that he may see a student who would come up to him and start talking...and he did NOT want that.  So maybe the last 10 minutes were not so stress free for Joe, but the rest of it...we did not feel stressed....and it was good.

Thanksgiving! (and a clinic apt)

(Since it is now December and I am finally sitting down to write all of this down, I am pretty much just cutting and pasting from my facebook page for these updates until I get caught up.  I hope to add clinic appointments and misc. items as they occur from now on.)

November 22nd, 2011

Jacob had his second clinic appointment.  He is still spilling lots of protein in his urine.  His blood pressure is good.  He even talked the doctor into increasing his sodium intake from 2000mg to 2500mg.  He is stoked!  And he was given permission to splurge with the sodium on Thanksgiving!  He actually lost weight so the doctor was happy that he is not retaining fluid, nor gaining from the increased appetite from the Prednisone.  The doctor mentioned a medication he may want to try, but is still thinking about it.  CellCept.  This is an antirejection med for transplant patients.  More investigation to follow.  Joe and I have been reading up on this disease and almost every study mentions fish oil.  I asked the doc about it and he said he doesnt think it works, but has given us the go ahead to try it. 

November 24th, 2011

Thanksgiving went great!  Jacob was allowed to splurge on the sodium intake today.  I have to admit, that kid has such self control.  I really do not think he went over that much!  We had a wonderful time.  Our oldest was home from college and brought a friend with her and even my sister and her boyfriend came over for dinner!

November 25th, 2011

Jacob is getting just a bit tired of the same foods and is really missing ranch dressing.  He knows he should not have it though.  So what did my boy do?  He went online in search of a homemade recipe that was low in sodium AND found one!  I love this boy!  Oh and he started the fish oil today.  The body absorbs the oil better as an oil and not capsule so the oil is what we got.  Jacob is such a trooper!  He knows there may be a chance that it may help so he takes it without any complaints.  We did get the orange flavored one, but he says it doesnt taste like oranges. 

Medication list:
Prednisone 40mg every morning
Prevacid 30 mg every night
Lisinopril 10mg every night
Fish Oil 1tsp every afternoon
HCTZ 25mg every afternoon

An update to family (November 18th, 2011)

(Since it is now December and I am finally sitting down to write all of this down, I am pretty much just cutting and pasting from my facebook page for these updates until I get caught up.  I hope to add clinic appointments and misc. items as they occur from now on.)

November 18th, 2011

A family friend had asked for an update on facebook and this was the reply I gave. 

Jacob is doing ok. His blood pressures are fluctuating some, but they are not critically high, but not always where the doc wants him to be. I have a feeling we will be increasing his one med when we go for an appointment Tuesday. The prednisone is making him irritable and really hungry and he hates it. He went back to school Wednesday. He says he is doing okay, but not at his full energy level yet. Joe and I have been reading up on IgA glomerulonephritis and somethings sound promising and others do not. He has his age for him as far as possibility of going into remission. Had he gotten this 20 yrs from now, we would mostly likely be looking at dialysis and kidney transplant. We have no idea what the cause is. His pediatrician and I think that maybe he was predisposed to an autoimmune disorder (since I have rheumatoid arthritis) and his body just went all wacky with a virus and this came on. We may never know. Joe and I have gone back to work so we really have not had time to really digest all of it and come up with questions to ask the doc on Tuesday. I am sure by then we will have a page worth for him to answer. Jacob is also now part of a research study on this. Hopefully Tuesday we will find out some more as far as likely progression of the disease and such...

The first clinic appointment

(Since it is now December and I am finally sitting down to write all of this down, I am pretty much just cutting and pasting from my facebook page for these updates until I get caught up.  I hope to add clinic appointments and misc. items as they occur from now on.)

November 15th, 2011

 He had his follow up appointment today. He has been diagnosed with IgA glomerulonephritis. We do not know the cause or if it is reversable. He will continue on the Prednisone, Prevacid, and HCTZ for awhile and his blood pressure medication is now switched to Lisinopril. I am bummed but at least we know what we are dealing with.

Medication list:
Prednisone 60mg every morning
HCTZ 25mg every afternoon
Prevacid 30mg every night
Lisinopril 10mg every night

Home life begins

November 12th, 2011
We finally make it home.  Jacob's appetite is already starting to increase due to the Prednisone and the poor kid can only have 2000mg of sodium a day!  EVERYTHING has sodium in it...and LOTS OF IT!  We leave the hospital but need to pick up his prescriptions from the pharmacy.  We end up going to three different ones.  Our hometown one doesnt make "compounds" so we have to get it from the one in the next town.  While we wait for the "compound" (the medicine made to a liquid from the tablets) we head to the local grocery store to get Jacob some food to last until we go grocery shopping the next day.  He ended up with berries and nuts.  Not too bad.  We then get go to the hometown pharmacy and get the rest of the pills. All but the Prevacid I should say.  Our insurance company wants $68 for a months supply.  No thank you.   I was not going to pay that for sure! So I walked out, went home, checked my coupons and headed to CVS. After sale price, coupons, and a mail-in rebate, my cost for a 28 day supply will be...wait for it...FREE! Oh yeah!!

Here was Jacob's medication list until he went to his first clinic appointment:
Prednisone 60mg every morning
HCTZ 25mg every afternoon
Norvasc 10mg every morning
Prevacid 30mg every night

Saturday, December 3, 2011

The beginning (continued)

The doc was so concerned about our boy that he called to check up on him from his home and we both decided it was time to go to the hospital.  So I pack Jacob up and take him to the local children's hospital's emergency department per his doctor's request.  Joe was at a conference so I kept him updated via text messages.  At this point we were still thinking a stomach bug and dehydration.  I really thought IV fluids overnight and we would be heading home.  Not so.

After an xray, labwork, and a CT scan, the docs came to report Jacob had acute renal failure and would need to be admitted.  What a surprise to us!  My husband and I had already decided that he would spend the night with Jacob and I would come back Sunday morning to spend the day with him.  We got him settled in for the night and IV fluids were started.

On Sunday, the labwork came back and his BUN was 140 and his creatinine was 7.7.  Just as a reference, the normal BUN is no more than 20 and the normal creatinine is no more than 1.4.  So, as you can see his kidneys were not functioning well at all.  The hospital we were at is a teaching hospital so the group of residents were asking us all sorts of questions about the previous week.  Being a nurse, I made sure I had committed to memory all what Jacob had been through the last week, including that he never once stopped making urine.  That was something I had been monitoring all week.  Luckily for us, I recognized one of the residents from the hospital I work at.  That was very nice as he kept us informed of every detail.  Since the hospital we were at did not have kidney specialists, they were consulting with the bigger teaching hospital.  The resident came back after ten minutes of telling me of the consult and said that as soon as the nephrologist heard the labs, they wanted Jacob at their hospital.  So after hanging out for most of the day, we packed up and took the 45 min trip to the other hospital. I rode in the ambulance with Jacob and Joe met us up there. 
By 6pm, we were pulling up to the ambulance doc at the new hospital...the hospital I work at.  We got Jacob settled in and Joe and I will begin our week of "shift work".  Joe spent the nights and I spent the days with Jacob. 

Monday morning after dropping off our daughter at school, I made the hour trip to the hospital.  I had no idea what to expect when I got there...good news or bad news.  I had an hour to reflect on the news we had received the night before. I think in that hour I went through every emotion there was.  I was happy we got him to the hospital.  I was mad that we waited a week, but who knew it would be kidney disease??  I was sad because my baby boy was sick.  I laughed with the radio; I yelled at other drivers; I cried, BUT I pulled it all together by the time I made it to the hospital.

That day we learned that just by pumping him through of IV fluids, his BUN was down to 77 and his creatinine was 5.5.  Dialysis was now off the table...whew!  Jacob was still vomiting, but able to keep some fluids down with the help of Zofran.

Tuesday, his labs had improved even more...BUN 55 and creatinine was 2.3.  Yay!!  Jacob was still vomiting so we needed to deal with that.  Plus he was still "spilling protein" into his urine.  This was concerning the doctors.  They wanted to know why.  They wanted to do a kidney biopsy to see what was going on and it was planned for Wednesday.

Wednesday.  Jacob is still vomiting so the biopsy is delayed a day.  The decided to give him around the clock Zofran to control his vomiting so the biopsy can be done on Thursday.  His spirits are not too bad.  He has been getting texts and a few phone calls from friends so he is happy.  He is a little bored though.  We do try to venture off the unit a few times.  This passes the time some. 

Joe and I are starting to get a little tired.  We live an hour away and the drive back and forth each day is getting to us.  Plus we had plans to move, but Jacob got sick so those were delayed as well.  Thankfully the other child we have at home is very understanding on our neglecting her.  We are also thankful for Facebook.  We were able to keep the our entire family up to date with one post rather than making a million phone calls!

Thursday.  Jacob had not vomited in about 24 hours!  YAY!!  So the biopsy was on!  Jacob's IV site had infiltrated the night before so the allowed him to go over night without a site.  The staff was so accomadating to him.  They gave him some Versed before they even began numbing the areas they were looking at starting an IV in.  Boy, does that medicine make him loopy!  (He was making us laugh!)  The IV got started and off we went to the biopsy.  It only took them about 15 minutes and we were heading back up to the floor.  Poor Jacob had to lay flat for about 4-6 hrs.  This did not make him happy AT ALL!  I tried to dim the lights and let him sleep most of it, but even the few hours he was awake, he was miserable! 

That afternoon, the doctor arrived and said that it would take some time to get all the results back as they examine the biopsy sample three different ways.  It could take days.  He did get some preliminary results quickly though.  His kidneys were very inflammed and he was now going to start three doses over three days of high dose steroids.  I believe he got 750mg Solumedrol each day.  Poor Jacob.  When we got the results, he was so scared.  He actually asked if he was "going to make it".  That about broke my heart.  To hear those words come from my child's mouth just about made me cry.  I gave him about as much reassurance as I could, but to tell the truth, I was scared.  I had no clue what the future held for him.

One thing we needed to deal with was his fear of needles.  Jacob is VERY afraid of needles.  After dealing with this fear all week, I finally sat with him and explained that the lab draws were going to happen and we needed to just find a way to cope with them.  I mentioned that sometimes people will use stuffed animals to divert their fear.  He had been eyeing a sock monkey in the gift shop.  I asked him if he thought he could use the sock monkey to distract him from the needle stick.  He agreed to try.

Friday.  The best morning text from my husband..."The sock monkey worked".  Praise the Lord!  Jacob completely gives all the credit to the sock monkey.  I think he is just stronger than he lets on.  We just let him think it is the sock monkey though.  Nothing else happened on this day. Just fluids and the daily steroid dose.  Joe stayed all day Friday so I could get some things done around the pack, paint, etc.  Then I spent the night Friday and stayed Saturday.  Jacob and Joe got to spend some quality time together.  Even though he was sick, he was still able to whip Joe's but at Monopoly.  The kid is the Monopoly king at our house.

Saturday.  The doctor comes in and asks Jacob what he wants to do today.  Jacob says, "Go home".  The doctor says, "Ok".  Jacob couldn't believe it.  "Really?" was his response.  Yep, after his daily dose of steroid, we got to go home.  By 6pm, we were pulling away from the hospital.