Monday, February 20, 2012

The phases of grieving

Depending on what website or book you read, people go through stages of grief.  Some say there are 5, some say 7.  Joe and I were talking last night about Jacob and I think he is somewhat working through these stages with dealing with the diagnosis.  I glanced at the stages and although he has not done them in the order some sites show, he definitely has hit on some of them.

He was in shock when first diagnosed.  I think we all were. How could a relatively healthy kid get such a diagnosis.  I mean, it is not a cancer diagnosis, but this is a chronic disease, one that he has to deal with the rest of his life.  This was a shock, for sure.

He was then depressed.  I would say that most of the depression was contributed to the medication he was on, but even after the meds were discontinued, you could see a bit of the depression lingering.  Can you blame him though?

Now, he seems to be angry.  Again, we dont blame him.  He is angry that he got the disease and that it is chronic.  He is angry he has to take medication. He is angry that he has to limit his sodium (although I explained to him that his sodium limitation is really what a healthy adult should consume).  He even mentioned his anger towards God the other day.  It was just a passing comment, but this is what really clued us in on his anger.  This is something he has to work on.  He doesnt express his anger often.  Thirteen is a hard age for any kid and to add a chronic disease to the mix can bring about trouble.  Right now his anger is controllable.  He takes his medications like he is supposed to and he watches his sodium intake VERY well (freakishly well if you ask me). It is just the random comments he makes that clues us in on his mood.  I am not overly concerned, but will be keeping a close eye on that kid.

Saturday, February 18, 2012

What a social butterfly!

To think that I was a little worried about the boy!  He has been social all weekend!  Yesterday was an early release day and he walked home with two friends from school.  One spent the night and stayed half of today.  Then he gets a phone call from the boy who we used to live down the street from and is hanging out with him now and will probably spend the night at his house.  And while he was waiting for the old neighbor to come pick him up, his other friend who moved away is in town and wants to hang out tomorrow.  Hmmm...I dont think Jacob has any problems in friend department like I thought....

Sunday, February 12, 2012

Just an update

Jacob seems to be feeling much better.  His fatigue seems to be subsiding, but he is feeling dizzy still.  When I was sick, I felt dizzy also so I am thinking the dizziness is related to whatever virus he has.  I think I am going to have him start taking the cellcept tonight.

We had a good talk about side effects.  I asked him about his abdominal pain and he says that he always has some pain, but "it is pointless to keep mentioning it".  This I did not know. I did mention to him that he only complains about it when he is on the cellcept so I assumed that when he is off of it he has no pain.  He first stated that he always has the pain even when taking the cellcept and then, after thinking about it, stated that the pain must be worse while taking cellcept since he does notice he complains more when taking it. 

Now when I mention abdominal pain, that is exactly what it is...abdominal pain.  The doctor and I have tried to get him to narrow down where the pain is located.  He always just says, "all over".  Oh well, maybe it is all over his abdominal area.  Getting exact descriptions from Jacob is like pulling teeth! 

So that is what we have been dealing with lately, just some crud and medication adjustments.  I am going to a "real foods" cooking class later today.  I am NOT the best cook, nor do I really like cooking, but I believe that diet can play an important role in healing.  Slowly I am changing our entire way of eating.  Not sure if it will be fun, but it sure will be interesting!

Wednesday, February 8, 2012

The crud has hit our home. And a clinic update

Sorry so long since the last update, but the crud seems to hit our house. 

So, Jacob restarted the Cellcept on about Thursday, January 19th.  His cold sore was just about gone.  He seemed to no longer have cold symptoms either.

He had another clinic appointment on Tuesday, January 24th.  His weight was fine.  His BP was also good.  He is still spilling blood and protein in his urine but the protein is slightly less.  Not much with the appointment this time.  He got to stop the Prednisione and that he is very thankful for.  We also get to return in four weeks time!  That we are all thankful for!

So, it is now Wednesday, February 8th and Jacob is sick again.  Monday, he woke up with some abdominal pain and stayed home from school. He slept most of the day away.  When he woke up he felt so cold.  Bone chilling cold.  The poor kid could not get warm.  No fever and no swelling noted.  I am unable to check his blood pressure right now as I have no clue where my cuff is.  Skin color seems okay. He says his urine does not look any different.  He does not report any loose stools.  We dressed him in the warmest socks I could find and his warmest pjs and let him use my electric blanket.  He still could not get warm.  He did manage to go to school Tuesday.  When I picked him up he said he felt much warmer from entering a "hot room where I got a little sweaty and then I felt warm the rest of the day."  I am wondering if maybe he ended up having a little fever and it broke.  Well, today he went to school.  I think he was fine, but I was in bed sick so I had no contact with him.  He called home about 11:30am and said he just felt sick and tired and had a small nosebleed.  I picked him up and we both napped for most the day.  No nausea or anything, maybe a small infrequent cough.  I have diagnosed us with the crud.  We shall see how tomorrow goes.  I decided to stop the Cellcept again.  Tonight's dose was the first to be skipped.  He has been taking a multivitamin so I am hoping he gets well soon and can restart the Cellcept. 

I am just wanting a few months to go by so we can see if the Cellcept will work for him.  If not, I want him off of it so his immunity can rebuild.  I am still on my venture to making our diets whole and healthy.  I am praying this helps his kidneys return to normal.  Although there is no medical cure for the disease, miracles do happen.

Until next time....