I am scared

I am davening/praying that this ends up okay, but I let down my guard and I am worried.  My port was used by a new nurse who I had been told was "central line certified" though it turns out she was nice but plain old clueless and I was feeling bad enough not to be on top of things as I should.   I came home too exhausted to go upstairs and fell asleep in my recliner.  I didn't get to bed until 5:45am.  When I put on my nightgown I realized my shirt was soaked with blood, but she had apologized for getting blood on my shirt, so I still didn't wake up enough to look at my line.  It was only this morning that I realized she had taken off the clave (a vital part of the line that serves as a valve that keeps bacteria from getting in  http://www.icumed.com/products/infusion-therapy/needlefree-vascular-access-devices/microclave-clear.aspx) and that the tubing had blood in it, which even without the clave on shouldn't have happened except the line wasn't even clamped until I thought to check it while driving home.  The only thing that kept me from bleeding out was a swabcap, an alcohol filled cover which is meant to be an extra safeguard over the clave, not a cap or stopper at all.

I called my doctor and we weighed the risks of the port clotting off because of blood in the chamber (which there likely is since there was blood in the tubing) vs the risk of central line infection and we decided that the safest thing was to pull out the needle to try to reduce the line infection risk.    Line infections are a big deal which we have many precautions to try to prevent .  They can, God forbid, easily lead to sepsis and death.

I am worried because both possibilities, God forbid, still exist.

Please pray for me, Chaya Liba bas (daughter of) Sorah.

Thank you! You totally made my day!!

I got to the hospital early, knowing that finding a parking spot is usually difficult.  Before I had time to even look for a spot or get the least bit frustrated with the lack of places, a man walking next to my car smiled at me, showed me his keys and motioned to where his taxi was parked, offering me his parking spot!

He totally made my day.

I blessed blessed him with good health and nachat ( joy or blessings, pride especially from one's children or grandchildren.) and am still heaping blessings on his head even though he is far away and I don't even know his name.

Sometimes small kindnesses go a very very long way.

I also got to visit with my friend Ahava Emunah today, which was really special.  The visit wasn't long enough, but her smile lit up my day.

I am so blessed to run into such wonderful people. 

Ultrasound, tumors, friends, and soup

Happy birthday to my wonderful husband!!  You should live until 120 in good health and happiness!

I had my quarterly ultrasound of my neck this morning.  I went with a good friend which made it much more pleasant.  The ultrasound was pretty quick and easy B"H.  The tumor is my right parotid B"H didn't grow, though there is now one in my left parotid too.  Symmetry isn't always good, but at least it is symmetrical.  Neither are in good places to biopsy, so we will keep watching them.

From there we went together to urgent care.  There was a bit of drama.  My nurse was working from 4pm instead of until 4pm.  I while I was checking in and the head nurse saw me and realized she had made a mistake.  The conversation was like this

S: Oh no, Liba, did I tell you your nurse was working morning?
L: Yes
S: Oh no, she is working from 4pm, we thought about switching her to morning, but we didn't.  I am sorry, I feel bad.  No, I don't feel bad I did my best.
L: You could feel a *little* bad.  I guess we will have to try to find a vein instead of using my port since I can't come back.  It is all bashert.

Whether she thought she should have or not, she did feel bad.

I know because minutes later a nurse I have never met walked in with her, and she told me that nurse "new" is also certified in using ports.  She works in another urgent care branch but was B"H in the main branch for a training course this morning!   Someone who didn't feel bad wouldn't have gone to that extent to find me a port certified nurse!

And because of this "mistake" I found out that the other location has *two* nurses trained in using ports.  I have another option, besides the ER, when my nurse isn't available!  Totally great and exciting news B"H.

And I got home at 1:10 - with enough time to heat up the soup for lunch and put a pan of baked ziti in the oven before the kids walked in.

While lunch was heating I started googling to figure out who to get in touch with in the closer urgent care branch so I could find out if they can do my calcium blood tests there too and found out that the medical director and I have a mutual friend!  I emailed her:

Hello R,  

My name is Liba and I live in [my city]. H.G. is a friend of mine. I have surgically induced hypoparathyroidism as well as Crohn's disease. I have been getting calcium infusions via my port in Terem X, but there is only one nurse who is certified in port use and she is only there part time. Today there was a bit of a schedule confusion and one of your (very sweet nurses) was B"H able to save my day. She was there for a training course and was able to give me my infusion. I was told that she and one of the other nurses in your branch of Terem are both certified in port usage. She wasn't sure that you could do calcium blood tests in the your branch though. Someone else suggested that there is a "stick" that you would have to order to do so in the machine you already have, but that it should be possible with some advanced notice? I would be happy to rely on the kupah blood test results if you can't test there. Typically I need my IVs 1-3 times a week. Often I end up in the ER though because many days the one nurse port certified nurse in X isn't available and that is something I would prefer to avoid. Thank you in advance, Liba

And B"H she wrote right back, they can do the tests, have the slides for five tests and can order more.  She was really sweet.  This means I have another option besides the ER, which despite their recliners and occasionally pleasant doctors, is still a place I prefer to avoid.

How awesome is this?  He pulled a lot of strings to make this work out so nicely and neatly!

And now my 9 year old is making chocolate peanut butter hamentashen.

http://overtimecook.com/2014/03/03/peanut-butter-filled-brownie-hamantaschen/

All in all, a good day B"H, one I saw God's hand in and clearly felt His hugs and care.

ER upgrade!

Today I had a 5 star Emergency Room experience.  Did you know such a thing was possible?   I didn't!

Within five minutes of arrival blood tests were ordered and we had results from the first round less than two minutes later!

 And they added recliners to the ambulatory ER waiting/treatment area!  They were comfortable and plentiful.   

I had the sweetest volunteer for my EKG and things only got better when I met the doctor.  She was nice, smart and an English speaker.  She was impressed with my knowledge of what was going on with my body and my disorder.  She was respectful and interested and totally excited to call in a team of medical students to check out my "classic" symptoms and neurological responses, things they learn about in school but don't get to see often.

Today I was a teaching tool.  They cleared a room to put me in so students could come tap my face, check my reflexes and discuss my history.  I felt a bit like a trained monkey.  I am all for teaching students, but it was uncomfortable none the less.  "Tap here and her face twitches" is a bit awkward, not what I am normally excited to be known for.

Most importantly though, I was home before my kids were B"H!  They have no idea I was gone all morning.

I should have asked for a second set of blood tests and a second round of IVs to get my labs closer to normal values.  If I had asked they would have done it, but I was torn.  I am out of danger for the minute but will need IV again in a day or so, which means another trip to Jerusalem for another ER or urgent care visit.

In the end stability reigns in my house for today B"H.  My kids know I am not well. I am not hiding that from them, but my ER and urgent care visits worry them.  Coming home to find lunch and a mommy makes a huge difference to them, so I make myself into a pretzel to be here when they get home if it is at all possible.  It is always exciting when it B"H works out on a day like today.  It isn't usually possible to get out of the ER in a normal time frame.  

Potato kugel with love

Friday it typically a rushed and busy day around here.  We are busy getting the house pretty, the food cooked, everyone bathed, the table cleared off from their weekday projects and set with china and our best silverware, the lights on that need to be on, toilet paper ripped, the lights off that need to be off and often kids moved around from room to room and one of their rooms made up for guests.

But everyone pitches in and it does all get done B"H.

One of my daughters peels many heads of garlic for roasted garlic each week, another takes care of the table and sweeping the floor, a third peels all of the other vegetables I need to cook with.  They open cans, they polish silver, the list seems endless at times.

And in between other jobs they take turns grinding potatoes and make potato kugel for Friday lunch.

It is hot, it is yummy and it makes everyone smile and willing to work happily, together, getting their jobs done.  The kugel keeps the team fueled and working together.

The total sum of some potatoes, eggs, onions, salt, and oil is full bellies, big smiles and something to look forward to in the middle of a busy day.

Catching up after many months, a couple surgeries, a new medi-port, a great retreat, and new friends made

It really has been too long since I wrote!

It is funny, life is B"H really good.  I am happy.  I always prefer to smile over frowning and yet my blog was getting me down - so I put it away for a while.  There really is so much good going on in my life, so many wonderful people and so very very much that I am grateful for.

I wasn't doing well with the fact that my blog was becoming more and more about my challenges and difficulties.

True, my life is full of those too.  Chronic medical issues, acute medical issues, they can easily take over, but are they what is important about my life?  Certainly not.

B"H I have my family, my kids are growing up so nicely and so quickly!  I have a supportive community.  My car is chugging along taking us where we need to, and sometimes even where we want to, go.  We have the help we need around the house.  Hey, we have a house  B"H!  We finally, after 8 years of talking about it, managed to rewire the house and upgrade the electricity.  My tumor markers are low.  We discovered Ikea and finally have mirrors and bathroom cabinets.

I went on a rest and recover retreat with Beit Natan last week.  One of the workshops was about expressing ourselves through art.  We were given paper, plasticine clay and paints.  The clay was to be our body and the paint how our soul relates to our body.  It may be hard to tell from the picture of my picture, but this is what came out for me.  The pink is my body, doing what it wants, when it wants and how it wants.  It is interesting, but it does as it pleases.  There is a red heart there as well, red for life, but also for pain.  Above it all though, more important than any of the rest is my soul, my joy in life and my ability to live and love and serve HaShem despite the state of my body.  So much more important is it, that it is hard to see my body through the paint that represents my soul.

This is my front yard.  My husband planted the flowers for me, most of them almost a year ago!  Some hibernated over the winter, but they are back now and most are much much bigger.  The irises have been blooming, mostly one flower at a time, since December.

Every time I leave my house and every time I return I get to see this tangible show of his love and support for me.  When we got married my husband didn't know a trowel from a spoon, yet when I wasn't up for gardening but really wanted things growing, he stepped up and figured it out for me.

What a week

I had a really really hard week.

I ended up getting IV four times, blood tests seven, and feeling horrible all week.  Muscle cramps, heart palpitations, numbness, tingling, and just being grumpy despite trying to smile.

Tuesday was a holiday so my doctor's office closed at 1pm.  Blood tests didn't get back until 12:50pm, so my doctor couldn't do IV in the office.  Instead I got referrals to urgent care and the ER and was told to choose where to go.

I went to urgent care, where they were very nice.  They put in the IV catheter, took blood tests, did an ekg, and once they saw how low my calcium was they sent me to the ER.  The doctor in the ER was a sweetie.  They did more blood tests, another EKG, started the calcium IV, then got blood test results and when they saw how low I was they wanted to admit me (I was down to 6.9, with under 7 being panic low levels, doctors getting paged and normally an automatic admit).  The doctor was impressed with how much I knew about my condition, so she agreed to call the endocrinologist on call and ask her what to do.  The endo agreed that if I would follow up at home, with how high my phosphorus was they would be wary of putting me on continuous infusions of calcium anyway, so they let me go home.

While I was there the ER doctor had fun using me at a teaching tool.  With my permission she had the residents and interns in to tap my cheek and see my twitch and to grill them on the signs and risks of hypocalcemia.

I ended up putting an SOS out to family on Friday because I couldn't do the cooking for Shabbos, DH was working and the kids couldn't do it all.  My brother in law came, helped get things finished up B"H.  He stayed and even washed my dishes after Shabbos.  Thank God for good family.

My doctor keeps telling me I need to stop pushing myself and using my calcium up, but that is easier said than done.  She is also distressed over my lack of veins.  The ones that used to be reliable just aren't any more.  It is taking multiple tries from the pediatrician to find a vein at this point, not one else will even try anymore.  She asked my surgeon about placing a port when he does my surgery in October.  My surgeon hasn't said yes or no, and I am not sure what to think about it.  It seems like a bit step and I am not sure what that means about doing blood tests and IVs locally.  I need to find out if the port will mean I have to go to the hospital for them.

All in all, I am having trouble posting since my brain is still in a low calcium fog and I am just not feeling well.
It was a really long hard week and I am hoping the week to come will be better, but I am not really sure.