Friday, August 30, 2013

Oh...this is going to be fun!

This morning, we spent a little bit of time at the hospital so Shelbie could do some more testing on her GI problems.  I might note that this was the very first time I sat out in the waiting room and waited for her!  It's a big milestone in case you were wondering and an important step in her gaining some experience in handling her health issues the way she wants.  It felt very strange but that's a post for another day. I hate my kids growing up!

Anyways, no results from all of that until Monday or Tuesday.  We picked up the medication to begin treating the H Pylori and the pharmacy tech said, "Have you ever been on this medication before?"
"No." I replied.
"Oh, this is going to be fun!!"  He started laughing as he continued, "Wait there, I will have the pharmacist come and talk to you."

The pharmacist comes and gives us the low down on how to take this medication, it's actually 10 pills she will have to take everyday for two weeks!!  He warned us that this is not going to be very fun and the medication will likely make her sicker than the disease.  He then told us that if she takes this medication while taking her anti depressant, it will most likely cause heart problems and arrhythmia.  The only problem is, we can't stop the anti depressant cold turkey or she gets really sick yet she has to get this new medication started to prevent anymore damage.

We have no choice...we will start a tapering dose tonight and try as fast as she can tolerate to get off it.  I am really hoping by Tuesday we can start the H pylori medication.

I had to call the Mission President this morning where Spencer is serving his mission.  There's a high possibility that he has this and explains why is has been sick for so long too!  I had to make arrangements to get Spencer into a clinic for a blood draw.  The President was great and gave me good instructions to email to Spence.  I did that but he won't be able to read it until Monday.

Here's the weird deal...Spencer's birthday is next week.  Every year with exception of 4 or 5 birthdays, he or someone in our family has been in the hospital for his birthday.  The timing of this really has me freaked out!  Just a bit. I really hope he doesn't have it, but at the same time I hope he does...if he does, then we can fix it and that's a good thing and he can start feeling better.

He is going to be floored when he opens that email and finds out all the stuff that is going on.  I hope he does okay with it all.

In the meantime, we are pressing forward.  I need to work on my mind this weekend.  I see Shelbie's body as being quite fragile so I am really worried about the high dose and potent medication we have to start.  I really hope she can tolerate it all without too much trouble.  I'm afraid we have a tough few weeks ahead of us.


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Thursday, August 29, 2013

H Pylori

Well, just a quick update.  Shelbie has H Pylori!  Bleh!  One more illness to learn about!

I don't know much about this yet but it does require two weeks of antibiotics and a host of other pills, 6 to be accurate.  6 more pills a day!  So glad she isn't 5 years old and is use to pills.

The doctor said she has probably had it most of her life but has been symptom free up until the past few months.  It is the bacteria that can cause ulcers though we don't know if she has ulcers yet.

Tomorrow, we have to go to the hospital at 7am for abdominal testing to see if there is an ulcer brewing.  From there, if things don't settle down in two weeks, she will have a hidascan to check the gall bladder and stool studies to test for C-Diff.  I kind of think these pills will do the trick but I guess we'll see.  After the week I've had...what do I know?

I feel bad...again!  When do I ever not feel bad? This single parenting gig is getting OLD and wearing on me in a host of ways. <sigh>

There are two types of chronic illness moms...the kind who go running to the hospital or doctor at the first sign of a low grade fever or any other little abnormality.  Then there is the other kind of mom who sits back and waits...and waits...listens to the kids complain about how sick they are but thinks they are just overly sensitive so we keep waiting....and waiting and then after three months when things are only getting worse and we have wasted a quarter of the year feeling crappy....only THEN...do we schlep off to the doctor!  Then, we usually find out that there really is something wrong, seriously wrong and spend the rest of the year trying to repair the damage done from a mom that just sits around waiting....ARGGGGGGGG.

I will never find a happy medium I'm sure.  I was once the run to the doctor every day, then I flopped to the extreme and hate going, mostly because they usually say they have no idea what is wrong so why waste everyone's time?

Well, back to the drawing board...try this 'mom' thing again!  sheesh!

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Tuesday, August 27, 2013

Hmmm...Gallbladder?

Yes, the little break we've had seems to be coming to a close.  Oh well, it was fun while it lasted.

What would you say these symptoms relate to...nausea after every single meal without fail regardless of the meal, fullness under the ribs, fatigue, severe cramping and other unmentionable GI issues? I'm thinking gallbladder though it could also be pancreas...maybe both.

Shelbie is the latest to encounter the never ending GI problems.  She's actually been limping along with symptoms for about 2 months but they are not improving despite our efforts at some home remedies.  She is very good at not letting on to the degree she is suffering, even when I milk her for information.  Finally, she suggested we go to the doctor.  Since she wants to see a doctor, you know things are not going well for her.   We'll start with our family doc which I'm sure will result in a visit to Boise and probably a hidascan mixed in there somewhere as well.  I'm just guessing...I could be wrong, we'll just have to see.

Last night, she cropped up with a wonderful set of petechiae on her legs.  I really thought this last infusion would get her feeling better like it always does but she is still not feeling well.  It's too bad on so many levels.
Selfishly, I was thinking how great it would be to not have to deal with anymore health problems.  I have imagined what a normal life might feel like.  That's the danger of having a break from it all, you let your mind wander over to the 'other side of the fence.'

Oh, and another thing, you never imagine that normal bad stuff should ever happen when there are already so many rare things going on.  Your brain somehow thinks you are immune from the usual and 'normal' problems like gallbladder, tonsilitis and even appendicitis so when those things crop up, it kind of throws you for a loop thinking, hey since when were we ever normal?  This should be problem that only normal people get...not us! Ahh...life.

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Wednesday, August 21, 2013

Little breaks

It's been so nice having a little break from any major illnesses or setbacks with the kids.  Spencer continues to struggle but he is managing things on his own and moving forward so that's good.  There is nothing I can do for him anyways so worrying is pointless.

Today has been a bit of a rough one.  Sam lost his vision.  He has gone probably 6 weeks without that happening and I almost forgot it was ever an issue so it was sad to be reminded of that. Again, it was followed by extreme pain.  I am glad that he is at least getting bad pain after his vision comes back because then, I am more convinced that it really is an ocular migraine and not something worse.  Weird how we start settling for one bad thing over another.

Shelbie is having her IVIG tomorrow.  It has been apparent this week that she is in desperate need of that.  She is in pain, feeling pretty weak and extremely fatigued among other things.  Her pancreas issues seem to be settling down as well, at least we are seeing fewer and fewer issues so, we'll take that.

Other than our marathon day of 12 or 13 hours at the hospital, it's business as usual around here.

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Tuesday, August 20, 2013

Medical History Bracelet by CARE

I finally got my CARE medic bracelets ready to go.  I love them!  I think everyone should have one of these for each member of the family even if you don't have a chronic illness.  I especially think any elderly person should have one.


Here are the details.  It's a USB you wear as a bracelet.  It has the international sign for Medical Alert.  The USB can be plugged into any computer, Apple or Windows platform and up comes all your medical history.  You fill out the information, not some corporation that keeps your records on file so it's private.  The software is easy to use and well laid out.  

Here's what you can keep on USB:
Name, address, phone number
Emergency contact information
Drug Allergies, general allergies
Medications and Vitamins
Past surgeries, MRI's CT Scans and where those tests were performed
Names of Medical Providers including contact information
Disorder and Diseases
Special Considerations
Wills
Other information
It's pretty detailed.  You can also upload a picture and other data like medical reports. It's a living document so you can change it and update it as you need to!  Cool right?  I love this for Spencer especially because while he is on his mission, if he should be in a car accident and unconscious, the EMT can plug this in and know right away who to call, what medications he is taking and other pertinent information.  Even if he has to go to the doctor, he can just hand this to the nurse and she can print a copy for his records, that way, nothing is lost in translation.  

I bought a bracelet and a key chain for Spencer and bracelets for Shelbie and Sam. 

I think it's great for me to have one too!  If something happened to me and I couldn't tell the medical staff what my allergies were or health conditions, my kids would have no clue! I probably wouldn't wear a bracelet but I would have the information on a key chain in an accessible place.  

These aren't that much of an investment either, just $20 and that includes the software.  Well worth it for peace of mind. I am not getting paid to write this by the way, I just think it is a great product!  Here is the link if you want to read more. http://medicalhistorybracelet.com/



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Monday, August 12, 2013

Wishin' and Hopin' and Thinkin' and Prayin'

Yes, I'm stealing these familiar lyrics because this morning, that's all I could think of.

I got to talk to Spencer on the phone this morning at 7am!  He was at the Salt Lake Airport, ready to board his flight to Denver.  I didn't sleep at all last night in anticipation of hearing his voice!  It's barely been two weeks but it seems like forever!  I was elated when I heard him say hello!

We didn't have long and took care of some things that are easier to talk about than email about like bank account stuff, communications, medicine etc.  I asked him how he was feeling and he said, "Not great. I'm just not feeling great.  Food doesn't settle at all."  Ugh...still!  It's been three weeks of this!  He did tell me that he has added some more pancreatic enzymes so I'm hoping that will calm things down, he said it helps a bit.  In addition to feeling sick, he is feeling really tired. I could hear that part in his voice.

For the first time in this process, I felt a little worried and a little sad that I couldn't be there to help him manage things better, make a doctor's appointment for him, something.  Doing something seems to make me feel better about the situation but I can't just drive down there and fix it, so...I've been wishin' and hopin' and thinkin' and prayin'...that's all I can do.  Some days, that's a hard pill for me to swallow.

Despite his health challenges right now, he is happy to be serving the Lord.  He is flying out with 30 other missionaries all going to Denver South and he said there isn't one missionary he doesn't like!  All of them have a lot of fun together but at the same time, are growing spiritually and closer to the Lord.  I was glad to hear that.

I think he had plans to attend the Denver Temple today and then they will assign him to his area tomorrow. He said he gets up every morning, excited and ready to work.  That is a blessing!  I wish I had pictures to share but Spencer isn't one to be distracted by cameras and such...I told him I want pictures!

Life goes on and one thing I know for sure is that prayer makes a big difference and he will continue to be blessed.



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Saturday, August 10, 2013

Ground Hog day

We have Ground Hog day a lot around here.  We tend to celebrate the same themes over and over.  So, what is today's recurring theme?

Well, Sam's knee!  Yes, the old knee is giving Sam more problems.  If you recall, he had an accident last December when he fell 4' and landed on his knee cap.  That resulted in a sheared off patella, other broken bones, deep bone contusions and what they thought was a shredded ACL.  The ACL went from shredded to not, to an abnormally growing ACL that is freakishly small.

The doctor went back and forth about whether or not to operate and the insurance company decided that they would not pay for reconstruction.

He's been doing just fine since March.  Things seemed to heal up great and he has been doing all the activities he loves.  Well, Thursday, he did a flip and landed just fine but his knee hyper-extended and  gave way.

I have been hoping that it was just a strain so we've been icing it, keeping it wrapped and doing easy stretches, taking Ibuprofen but nothing is helping.  He can't even just stand still without his knee giving out and hyper extending.  I don't think that is a very good sign since it's the same knee with the abnormal ACL.

Sam has not been a happy camper.  Without being able to be active every day, all day, he is going to make life miserable for the rest of us!  He is in a brace now and I was certain that the brace would allow him to at least go long boarding but no such luck.

I guess Monday, I will be setting up appointments to see our Ortho doc for a consult.

There is truth to the statement, no rest for the wicked...though, this wicked girl is going to try to lay low this afternoon and tomorrow.  I had to clean two buildings yesterday and managed to break open part of one of the incisions so that was fun to clean up and didn't help in the pain department either.  Oh well, such is life.

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Wednesday, August 7, 2013

Where to start

I have been neglecting this blog because so much has been happening on the other side of my life, the 'nuttin wise' side.  Spencer has been gone just one week and at times it feels like a year already but then I realize we still have two more years to go.

He was sick for the week before he left and he is still sick.  I was hoping it was just nerves and such but I guess not.  There is nothing I can do about it.  I received the really cool medic alert bracelets and need to get that information updated but life continues to be a rat race.

Yesterday, I had to have surgery!  I am not a good surgery patient, I am not a good anything patient.  Not nearly as good as my kids. A couple of months ago, I blogged over on my other blog about the fun I had getting a mammogram.  In cased you missed that adventure... Go HERE.  I didn't exactly follow up on that visit.

After a second opinion, okay actually 4 opinions from various docs, I was urged to have the solid tumor they found, removed.  I had that done yesterday.  I also had many cysts on the other side that had 'debris' in them so those were removed as well.  Now, this is not my first rodeo with breast lumps.  They seem to crop up like dandelions!  So far, they have all been benign.  Whew...so this was my third go around.

One of the hardest things about being single is handling this kind of stuff alone.  I use to have a husband who came along and sat beside me.  Now, I have good kids who drop me off and pick me up.  Yesterday was no different.  I had a friend offer to drive me but the kids want to be helpful so I figured it didn't really matter who dropped me off.  They pulled up to the front doors, I handed them breakfast money and we waved goodbye.  I hated watching them drive up.  I put on my brave face and walked in for my first procedure.

Because of the location of the tumor, I had to have a wire localization done first.  That hurts, in case you were wondering.  They take a gigantic needle and push it into the center of the tumor, then thread a wire into it.  The wire has a little fish hook on the end and grabs the bottom of the tumor. Then the needle comes out.  Sounds easy enough right?  Wrong.  Either this guy doing it needed to spend more time at the gym or the tumor is actually just a piece of rock that got lodged there somehow.  He was grunting and groaning and pushing on my ribs trying to get that needle in!  Ouch.  However, I have mastered the art of not crying when that's all I really want to do and just sat there.  They kept asking me if I was okay and I just smiled, "yes, I'm fine."
"Are we hurting you?"
"Yes, but that's fine."
 That's pretty much how the rest of the day went.  From that procedure, I was transported by wheelchair across the street to the surgery center.  I was actually wearing that bright pink mammogram cape only this time, I had a lovely wire sticking out of my chesticles.

I laid in pre-op for quite awhile until they were ready to go.  I didn't think this was going to be a big surgery.  I figured an hour tops but it was just over two hours.  I remember them waking me up in post-op and I was crying.  I was glad for the sweet nurse who held my hand.  I also remember my super duper surgeon when he came into the OR, he sat down beside me and just held my hand first.  At least I think that's what he did, I was on Versed so I may have been imagining that but I'm pretty sure I'm not.  He is a great guy!  He has a great wife too and she came in to check on me once I was in post op.

So, that's that.  Not fun and today has not been fun.  My kidneys are so sluggish and I feel like a giant sponge that needs to be wrung out!  And let's talk about pain...holy smokes, this is not like my other surgeries.  This one has been so painful and I am one giant bruise!  I hate being incapacitated!  Hate it!

I have not slept in days and have had to work today so I am a bit wilted and super tired but, this too shall pass.  It will be two weeks before pathology comes back.  It still remains a mystery lump so here's hoping for good news.  It's always a little mind bending waiting around for these things but, as usual, life goes on and I will continue to smile and say, "I'm fine."

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