Being Forthright & Too much Hospital

So it's been 11 days since I posted a blog update and most of that is due to the fact that I've been pretty sick and I often hide when I'm scared to death or fear that vulnerability that is really too uncomfortable to feel.

The medical:
I was in the hospital a week ( after already being in 5 weeks this year)... I had a tooth abscess that had apparently been there a long time and showed up on x-rays and was substantial enough to need to remove asap. I guess when you are immunocompromised and you have an active infection for a long time, the goal is to get it out. So i had oral surgery (6 stitches) and then a few days later another oral surgery to re-clean the bone (osteomylitis) and remove debris etc. They promised me that I'd be fine on oral anti-biotics. I'm not going to argue with Infectious diseases so we left on oral antibiotics. I went to the hospital that Friday for an IVIG infusion (6 hours) and a CT scan of my mouth. It showed cellulitis and more abscess. On Monday (7 days ago) I had a third oral surgery and the cleaning of that bone and sent home on pain meds with IV antibiotics to begin for a month. My home nurse came and we did the run through of Dorepenem (I am fine with merepenem) -- She did the infusion and stayed because it was my first time on dorepenem. The infusion ended at 9pm and I woke up projectile vomiting at 1130pm-7pm the next day, but I am lucky to have the best nurse in the world, so she came back at 730 Tuesday morning and talked to my doc. We soon understood I was very sick and needed admission. I had a bed at 330.
Nitza came with me and really took the bull by the horns there because I hadn't peed and had no tears etc from the dehydration. It was determined that my liver enzymes ALT (was 3700 (normal is 50) and my ALT was 2500 (normal is also 50)-- They got me on Zofran, pain meds (mouth) and 8lbs of fluid gain.
Good news is sed rate and enzymes have trended down down down. The ALT is 975 right now, buy I am home.  The Sed rate and pancreatic enzymes are also down... but this was the toughest hospitalization yet. They are attributing the liver enzymes to "sludge" and dehydration.

I am feeling extremely isolated. I really just want normalcy back.. running, working, liver functions near 50 etc. I feel sad and have been having panic attacks and insomnia... I guess this is a call for friends...

I'm hoping to get back to work by the beginning of July.. fingers crossed. I haven't even heard from anyone from my job and I email them regularly. It makes me sad... let's face it, everything is making me sad.

Life on the homefront is amazing. I am so lucky to have Nitza and Ale and my mom and a few friends have really stuck by me...they know who they are and I love them with my whole heart.

I go Tuesday and the following Monday for liver tests and doctor visits. I'm dreading this week a lot. Nitza will be at work all week, which is our normal... but I'm especially clingy.

I cannot wait for her parents to come on June 11, 2011... I will have company and I love them so much!!! It will be great.

I have a TON of positive things in my life... I know this is the pity train... I have a beautiful home, a beautiful spouse, who is also my best friend and someone who would do anything for me,  a lovely kiddo, 2 ridiculously troublemaking dogs, a garden and my health.. My lungs are AMAZING.. and I am really grateful for that... I'm scared about the rest, but doing what's best.

More to come this week. My little sister Erin's RN pinning is tomorrow and I am so thrilled.... I plan to get back to running this week.. but I'm going to run because Nitza does have today off and I want to be with her!!

you don't always get what you want. you get what you need

Another day another day. I am still in the hospital with no official discharge date. It is likely to be tomorrow, but we'll see how it goes.  I was upset yesterday. I ranted and raved and cried and pretty much had a big ole temper tantrum. Today I read, rested, facebooked, texted, wrote some and behaved liked the 36 year old adult that I am. Much needed for all those around me and even those not around me.

I WAS SUPER CRAZY.


At any rate, usually each day there is something, be it lyrics to a song, a look from a person, something I witness, a comment from a friend that opens my eyes and today, dear Ronnie made a comment on one of my facebook posts that said  with regard to my lack of discharge "I know it stinks, but if you are not getting discharged, you need to be there. If you need to be there, you need to be there :)"

HELLO-- and that was it. He is right and it made a ton of sense and then I paused and asked God to help me with the battle of letting go of my will.  It's his, but sometimes (well a lot of times) I take mine back.

I have had a very relaxing afternoon -- I am okay and exactly where I need to be at this moment in time... and that's ok because it is what is supposed to be.

I'm looking forward to running a lot when I get home and getting back into my real groove and putting a marathon schedule together for the hartford marathon that will take place in October, and spending time with my family and friends, going to church, playing with puppies and loving my Nitza and Ale and Mom and Tom. I am very fortunate and grateful, though slightly stir crazy... but that's really okay.

Happier today... 

need to keep it in sight

I think its sufficient to say that today wasn't a great day. As I get on in weeks in here I start to get crazy... add solumedrol to the mix and crazy turns to almost rabid...its so hard to be grateful in those moments that i want to wring someones neck... and i'm not violent... i just cry, which I also did for most of today-- thank you solumendrol and dr p taking a vacation day. i need to keep sight of my heart and my path..

i will briefly digress... there is an initiative going on here called "continuity of care"-- what they are hoping for is that the cf patients get more comfortable with the other docs, PA's and APRN's so that when their primary pulmonologist is on vacation, the patient will still not be rounded by the hospitalists but by the other MD's in the office-- Given I am really gung-ho on lean process- I was entirely on board with this, until........................

it was my turn.

I came in here pretty sick. My stomach was awful. My lungs were a mess and I had 2 years of a tooth abscess in my mouth that I had no idea was there that had eaten away at the jaw bone, otherwise known as osteomylitis. 

I had 2 oral surgeries, 1 endoscopy and what feels like a million therapies... all that being said, we found a routine that worked for me NOW... not necessarily in 5 weeks but now when it was needed and working... so............

My dear Dr P had a vacation day and I woke up this morning to 4 of my meds changed by the APRN because they did not understand why I was on them Um.. it is my 14th day here, you have looked at my chart a number of times prior to today.. so um? what's the issue (by the way this is the second time the same aprn did this when Dr P was out)

So I start crying (A LOT) and email dr p immediately. so the nurse is the liason between my hysteria and the aprn... and my poor mother just had to listen to me, but thank god she did. so they dc'd ALL my meds IV and I am on 4 new meds and the rest PO... Um-- I don't absorb abx orally, but I guess we can play this for a day.

So tomorrow I am supposed to go home if "I'm good tonight"-- What the hell does that mean? Don't wet the bed? Don't eat too many snacks? dont' say bad words?

Anyway this is a rant of any rant and I guess I write this for me so it's my rant and i feel a lot better now, but worst fear is that my stomach will get all messed up with the steroids and removal of some PPI's-- we'll see.

Tomorrow Tomorrow

The sun will come out tomorrow

It's only 

a 

DAYYYYYYY

A  

WAYYYYYYYYY

Yes.. that's how crazy I feel.

Potassium, Steroids, and Numb Faces

I have had to stop and be still so that I could remind myself that there are truly things in my life that are beautiful and that I am grateful for... these are the reasons I experience such gratitude:

and I am so very fortunate to have a great friend give me a bracelet that says "positivity". I have been looking at it A LOT today..

This hospital stay has been hard. Nitza hasn't been able to be here as often and for as long as she has in the past and I miss her to badly. But its been great in the sense that we've addressed my stomach issues with meds. My mind crushing headaches were referred pain from the horrendous mouth abscess. We found the abscess.  My lungs are rocking.. I will start running when I get out...

It's the mouth healing that is difficult and my Potassium is VERY high right now, which is dangerous for my kidneys. They are doing another draw to determine it the first draw was accurate. My kidney function had been off for most of the 2 weeks so far, but has normalized so I don't know. I am back on IV S O L U M E D R O L... i have 845 personalities on that stuff... and none of them are very nice.

Oral surgery is coming today to reassess. I am numb in my face and the swelling is going back up a little and my fever hovers near 101... but I'm no dentist so they'll have to figure it out. I do have osteomylitis  and I also have a severely compromised immune system so those two don't make for a great date.

So that is the end of my whining session. I know God is watching me. I have family and friends thinking about me and praying for me, but I'm just kind a scared.

a little of this & a little of that

Yesterday I got the very relieving and wonderful news that my bone marrow biopsy was  N O R M A L. That might be the only thing about me that is normal (joke -sort of). I was so relieved. It narrows down the immune system issues, which I think they have gotten to the root cause of.

I am here with no discharge date on the horizon... but that's okay... I'd rather be here with immediate access to doctors than at home with none.

I had a second oral surgery 3 days ago, and I am still struggling with my mouth and the pain and infection. More to come on that. Nitza brought Ale on Thursday night and it was so great.. I miss them so much-- Last night my dearest friends Kim and Hugh came to visit and I love them... they always make me laugh. Today Mom is coming which I am so excited for as well as nitza and Ale...

Alejandro playing engines on my bed..

Alejandro and Nitza.

School Picture are back!!!!

This one is my favorite!!

Happy Saturday everyone and have great strides walks to all my friends that are doing them today!!

Day 7-- Hartford Hospital Edition- Thankful Thursday

So I am still here in the hospital. This has been a very active visit.  Today is day 8:

My lung capacity has gotten better. My 02 is much better. I had my second oral surgery of the week yesterday. I'll spare you gross details, but there was jaw bone involved.  I'm in a lot of pain, but its being managed. My ABX have been switched up for this oral infection so hopefully there will be no more oral surgeries. My stomach is settling down a bit with a whole lot of medication. I am having low grade fevers, but it seems okay. At this point I'm not certain of the plan for d/c but likely it will be next week. I'm not full of wisdom or quick witted words today.. I'm just me, tired, in pain and praying for the best outcome. I'm looking forward to seeing my mom and gram today and then Nitza and Alejandro tonight. 

I hope that Gavin's great strides walk goes well this weekend and that TONS of people show up and walk. 

Please stop by Sarah Jones' blog. She really brought it home in her last entry about CF awareness. It left me with tears and it's an important message. These folks are so articulate in ways I am unable to be, thank God the message gets out!!

I am grateful for medical insurance and caring nurses, pca's, doctor's, and new friends here at Hartford Hospital. The care is amazing and I know I am in great hands. I am grateful that Nitza had some sort of a weird gut (or god) feeling to nag me about going to the dentist because this infection could have been horrid. I am grateful for my mom, and gram who keep coming to see me every few days driving an hour each way to play cards and keep me company. I love you guys. I'm grateful to friends like Jen V and Sarah J and Josh M and Ronnie S and Sara T who just drop me quick notes to see if I'm okay.We have a stellar CF community. 

Bone Marrow results should be back today. I'll keep you all posted. I'm going to rest and then clean up if I can before Mom and Gram come. 

only Love.

Tara

The Cheeks Of A Chipmunk- WHAT?

This is me extremely unhappy about the the swelling in my right cheek, which is the left side of the photo for you all looking at it. I had oral surgery, as noted earlier and the pain is rough. Ice packs are my new best friend. I had a test to see if I had stones in the ole' bile ducts yesterday but I guess its like finding a needle in a haystack so they are going to wait until they are in my stomach tentatively tomorrow, pending the all important ability to open my mouth for the tube to go down.

It's been a rough time here so far. Kidney functions are too high to get vanco 2x/day. They had to take me off some meds for the kidney functions. I am a slurring drunk-sounding person when I talk with out the perks of even a sip of beer :) The pain in my back is still here when I breath, but no pneumonia on x-rays, just a lot of crackles. I've been sleeping a ton and when I'm not, I'm doing a lot of this:

which really makes me happy despite my weird outer space look.

My mom and Tom are coming today with I presume Grandma. Nitza will be around by 1 also. I cannot wait to have them all here together for the sheer hilarity of it all... plus we all love each other so much its great.

I really have nothing profound.... nothing even slightly profound... really nothing much at all, so I'll go. 

 I wish you all out there in blogworld a very beautiful Sunday.

Tara

IV's, O2, and Teeth?

Today was a day. I woke up to chest x-ray transport. Did that. Went to see the oral surgeon for that "spot" they found on the x-ray. Turns out the tooth and 2 year old infection that were the gray spot needed to come out now, like in 45 minutes... So we did that. He had to scrape the infection from the bone and remove a cyst--All in a days work and 5 stitches later I am in pain.  My kidney numbers are high so my vanco can only come Q24 and my fortaz is steady. I saw the GI today and go for another endoscopy Monday and ultrasound tomorrow. He thinks I have peptic ulcer disease and a possible stone in my bile duct left over from when I got my gallbladder out-- if so they'll remove it wednesday.

This is simply ridiculous. My pft's are about 27%-32% below my baseline still so we're going to treat until they improve.

Marrow tests will be back on Thursday of next week giving us further direction and I also learned that I don't make antibodies... right... no fighters in there.
I'm sorry this is so rambley, but I am ultimately very rambley right now.

ENOUGH OF THE FEELING SORRY FOR MYSELF, on to other things:

While admittedly I did not get up at 4 am to watch the royals marry, I did get up at 4 am to use the restroom and heard a number of other patients hooting and hollering... so I was kind of up because of the royals, but really not for them.
I was able to not watch royalty marry but feel like I did because Jen V and Sara T pretty much kept us all up to speed--- which was entirely the smiling point of my day-- that and when a friend surprised me with coffee and nitza came to play words with friends for a few hours.

So tomorrow is the big ultra sound and hoping the kitchen might finally have gotten the food I don't eat order out right.

My Shower-- Thankful Thursday

I love my home shower. It is large, walk in.. has a few seats in it. Tonight I took the longest most wonderful shower. I am anxious. I am having some difficulty breathing...I did my treatments...it is a horribly scary feeling to feel short of breath.

My heart is racing less now that I lay in my warm bed beside the love of my life with the little fluffies running around and the cutest boy asleep down the hall.

I live a life with a heart full of gratitude. I am not all better.. Dr P says my baseline will take 6 months to come back (and that's without complications.)-- I can get there.. Ask my mom, I'm stubborn as hell and incredibly impatient.

I was struck by a number of things today.. this afternoon... Ale told me that he was afraid his best buddy wasn't going to come home... he is so resilient and expressive that I never realized how much these last 2 hospital stays affected him...We're open to suggestions. He wants to visit and loves being there and flirts with Miss A and Miss M with his cute long eyelashes.. but he's still 5 and one of his parents is still ill.

I talked to my mom on the phone tonight and I was short of breath and with the most loving tone full of pause she asked me to please sit down... I thank god for my mother-- every moment.. every day.. she is my dearest friend... my trusted confidant.  I talk to her at least 6 times a day.. and sometimes that is not enough... She has been my strength..

Nitzita and I were able to openly talk about her fear.. her fright of me being sicker.. and I've been sicker and I pause and know that I spend every day and night with the love of my life...my best friend.. we laugh.. we shake our heads.. we were two fledgling souls that landed right beside one another and happened to look up at the same time... I have a life partner that I truly truly enjoy and am every day grateful for....

and so tonight, we unloaded a week's worth of Hartford Hospital bags into our freshly smelling clean home and got the boy ready for bed and read together like we do each night and as I stepped into my shower I had a moment of pause and really understood that the gift of stepping into that shower is truly what life is about.