Dr. Casanova

Graham's health (mental and physical) has not improved from last Friday's difficult ordeal.  He is unable to eat, going to the bathroom is worse than running the Tough Mudder, and he has started wheezing- which causes even more discomfort.  Therefore, an all important visit with Dr. Casanova was put on the calendar.  Well, it was already on the calendar but it became bold print instead of just penciled in.

I have been looking forward to meeting this man.  Does he own up to his name?  What does he look like? 


Not bad...not my type, but a good looking man who is a loving single dad :)  Your welcome ladies.

What we've learned about Dr. Casanova's Palliative Care Practice.  Dr. Casanova and Dr. Fine's (yes, it got better - I will now call it the Fine Casanova office) practice is #3 in the nation in Palliative Care.  Dr. Casanova is in charge of all Baylor Scott and White Palliative Care across the nation and Dr. Fine is on the board and in charge of ALL Palliative Care nationwide.  Graham landed in the best of the best :)  They will not only focus on Graham, but Jordan and me too.  Dr. Casanova also has a 7 year old daughter named Taylor and will make sure he visits with Graham regularly.

On Wednesday, Dr. Casanova took 1 look at Graham and in different words said he looked like shit.  He recommended that Graham be admitted into hospital.  Now the dilemma going through Graham's brain...our Aunt and Uncle are finally coming over from Scotland this weekend.  We have been looking forward to this for quite sometime.  We had to postpone our trip over there last summer because of his health.  This sucks.  But the Dr eased his stress.  Come in now, let him take over and get Graham back on track and hopefully home by early next week.  Instead of waiting until an ambulance has to bring him back - most likely in a couple days - and Graham is worse off and having to stay in the hospital longer. 

As tough as a decision it was, Graham was admitted back into the hospital yesterday.  There was a HUGE part of me that knew I was going to have to leave him.  In the state that he's been in, I have been preparing myself to be widowed and how in God's name I would tell Jordan.  Dr. Casanova felt my prediction too.  And the talk moved from introductions to how to make him comfortable really quick.  My heart broke.

Graham's anxiety kept getting worse and worse along with his comfort level throughout the day.  Dr. Rosenblatt came to visit him and quickly moved him to his office to give him a quiet, private room.  Plus, Rosenblatt has WAY more pull to get Graham into a room quicker - and he was definitely going to take advantage of his power for one of his favorites.

Once in a room, it took 30 minutes, but a calm finally came over my Love.  He was able to speak again (he hadn't been able to all day) and was able to lower his O2 from 8/10L to 5L.  We've always known, but now we had medical witnesses - yes his health blows, but 70% of the problem seems to be his Anxiety getting the best of him.  When we see Casanova next time, we will definitely be bringing it up.  Something needs to be done.


 

Heaven to Hell

Jordy and I left parents night out on an extreme happy high.  It was so heart warming to see and feel all the love and support from so many.  We picked up dinner and I received 2 heart stopping texts: help, 911

Step 1: Send texts to our neighbors and pray someone was home.
Step 2: Call 911
Step 3: Throw hazards on and HAUL ASS

Because I was in Mansfield, I was routed to their call center.  I gave my story and UGH - they had to send me to Grand Prairie's call center.  It was only 5 seconds, but it felt like 5 minutes.  They assured me an ambulance was on their way and I continued to fly through town, carefully running all red lights that I needed to.  Jordy was happily watching a movie in the back and had no clue what was going on.  On a side note, she didn't even notice the erratic driving...does that mean it's normal for her and I drive bad????

As I arrive, I was comforted to see 3 of our fabulous neighbors at the house.  One was taking care of Sadie, and the other 2 were in the bedroom with Graham.  Graham had become slightly stable once his O2 was raised.  I then ran to Jordan that was still in the car...as I did this, the ambulance and fire truck came blazing up before I could tell her that Daddy was in trouble but is doing better.  She began screaming and crying...it was all I could do to run her in as fast as I could so she could see that he was ok.  The EMTs were right behind us and a I'll never forget, Chace, our neighbor, called and waived J over gave her a hug and took her to his house.  I knew she was going to be taken care of and I could focus on Graham. 

Seven EMTs (2 were here the last time) began working on Graham; asking questions, taking his vitals, asking him what happened:  a warm heat began in his lungs then became a burning sensation.  This is when he texted "Help."  Once the heat began moving slowly down his body is when he texted "911" and he soon lost control of his bladder.  This is when he believed he was going to die alone and I would come home to a dead husband.  His rationale being, as a hunter, after you have made your kill shot, a deer will lose control of their bladder and bowels right before they die.  But Tim and Ryan (neighbors) came in to save the day.  They were able to raise his O2 and Graham was able to calm down.  Ryan even ran out of his shoes trying to get to Graham quickly.  I fully believe these 2 men saved Graham's life.  His panic would have been set into overdrive and his heart and body would have given out.

EMTs took his vitals and it became a little comical.
"Your health sucks."
"Yep"
"So are you normal suck, or suck enough that we need to take you to the hospital?"
"Normal suck."
So Graham denied transport and they left telling us not to hesitate to call them back.  I will be giving them a gift soon; Brownies and Lemonade - they have now saved him from the shitter and a pool of pee.  Graham and I fully believe in finding fun in all situations, death included.

As I was walking the men out, Amber, Sam and Liz came over to surprise us with a gift.  I will never forget their faces.  This may be our normal, crappy, scary life; but I hate the idea of scaring someone who accidently witnessed it.  I am so sorry.

Our house was back to normal about 10pm and Jordan was too afraid to leave our sights.  Graham's last episode was around midnight and I was able to clean him and the bed up.  We decided to camp out in the living room as a family.  Jordy, Sadie the dog, and I on the couch and Graham comfortably sleeping in the recliner.  Nellie the cat even hung over the railing to watch over us.  It was so nice, we stayed there almost all day Saturday and camped out again Saturday night.  Reminding us that having our family intact is the most important thing to us.

Parents Night Out

The love and support that we receive and feel is remarkable and unbelievable.  We are in constant shock that we deserve any of this and we are completely indebted to you all.  Last week, 3 dear friends, with help from MANY more, hosted an Auction and Parent's Night Out in our honor.  I LOATHE asking for help or donations, but they insisted and I'm glad they did.  It became bigger and better than anyone had ever imagined.  All who donated items for the auction, everyone who bid, all who came out to the PNO (parents and kiddo's), all who gave up their time, gave me the happiest of tears.  With all that is dark and wrong with the world, to see the outpouring of love and the urge to help either someone you know and love, or do not know at all, is AWESOME.  All of this makes me want to be a better person, be a better Christian, be a better friend, mother, wife, teacher, role model.  Everyone of you have impacted me.  I truly thank you from the bottom of my heart.

Between Thursday and Friday we were able to speak and hang out with friends we have been unable to in a very long time.  The visits, the hugs, the texts and calls are imprinted in happy thoughts. 

Thank you Amber Risley, Sam Pettit, and Liz Lou for making all this happen.  Thank you Deidra Zschiesche and Jami Davis for entertaining the crazy mass of kiddos.  Jill Fishback, Kristi Ratcliff, and Alyssa Morales for feeding them.  And everyone else who helped corral everyone that night!  There were so many happy volunteers.  Definate HIGH point of the week.

XOXO

Daily Struggles

Graham left the hospital on a pain patch that hadn't faded, a new outlook on what his life could be, and an exhaustion of being in the hospital and not at home.  There were high hopes in the beginning with Graham coming home.  A home-health company was going to come in, physical therapy was going to start, all new O2 containers and Bi-Pap machine were on their way, and Graham's Dad was going to be able to stay with him during the day until all of this started up.  We were on a rare (slight as it might be) high.  We could do this!



So not 24 hours later...home health was not going to be able to fulfill Graham's needs (45 minutes a day, and not at any specific time...just randomly show up); the patch is to be replaced every 3 days, it wears off by morning of the 3rd day and it takes a good 1/2 day on the first day to take effect, therefore he is in pain for a day and a half.  And he went 3 days without his happy pill.  Depression with all that was going on began to set in again.  His Dad really has made a difference.  I no longer have to stress that Graham is home alone and unable to do something then become stuck.  But it is still frustrating that Home Health can't provide us what we need to become more independent.


Walking is becoming more and more of a challenge too.  Anytime he gets up, he needs his O2 cranked up somewhere between 6 and 8 Liters and it takes him quite sometime to recuperate from the activity.  Many times he needs a high flow O2 tank and a rebreather mask just to recover.  Physical Therapy has finally started and hopefully this will begin to strengthen him.  Now to just get even more calories in him; all this work will have him burn even more!

Slight Addiction...NOT a Problem

Graham continues to struggle with his appetite and weight lose.  I've stopped asking because it has become too depressing to hear.  His stomach is concave, his legs and arms are like toothpicks, and when he glances at himself in the mirror, he's disgusted with himself.  I remind him often of how hot and attracted to him I still am, but we all know, self image and self appreciation is the most important.

During Graham's last hospital stay, Girl Scouts announced "It's cookie time!"  Now, we have always stocked up with 2 boxes of Thin Mints and thrown them into the freezer.  These typically lasted us until the summer.  Graham has been turning down all his favorite foods so it was a shot in the dark that I bought a box from a neighborhood scout and took them to the hospital.  In 2 days they were gone!  He ate a silver roll a night.  I have a precious Girl Scout in my class and I quickly ordered 2 more boxes - those were gone within 5 days!  So I ordered 2 more!  If I correctly did the math...that's 640 calories and 32 grams of fat as a midnight snack!  Every foodie's dream - I just watch and drool.

This does not include the 2 boxes that were thrown away at the hospital.

From my PRECIOUS Lil' Girl Scout in my class. I am so blessed to have the sweetest and most thoughtful group of kiddos in class.  I'm pretty sure she has almost paid for her full week at camp!!!!

Home Again, Home Again Jiggity Jog

After 12 days longs days, we FINALLY got to bring Graham home last night!  He's exhausted and stressed, but happy to be home.  Jordy and I are ELATED and so relieved to have him back in our home.  We have found being Nurse Betty role comes back to us like riding a bike, and of course our Little J is running around being the best helper.


We came home to such a wonderful welcome.  Graham had an AWESOME home cooked meal (our neighbor Jayden had the best birthday dinner) and he was able to settle into our newly moved from downstairs recliner.  Why we hadn't done this sooner...who knows.  Our living room actually looks better and it's more like a twin size bed than a chair. 


All balls are rolling today - SO PLESANTLY SHOCKED - home health is stopping by, O2 people are coming by to set up everything, and best friend is coming to check on him during lunch.  If only we can get Graham on board that this is going to work.  Positive thinking is always good medicine!


I got schooled on prescriptions last night and I think I can now pronounce them all.  Do pharmacists make more than teachers?  Because after this load, I think I know my stuff :)

New Plan

Graham is still in the hospital but showing signs of improvement.  They have not taken a blood gas in over a week, but he has down graded to a home bi-pap machine and his headaches and suffocation feelings are gone.  He has seen a Palative Care physician with the best name ever - Dr. Casanova!  I have not met him yet, so I don't know if he lives up to his name...but I'll let you know.  Graham likes him A LOT and his magic is already helping him out A LOT.  He wears a Fentanyl patch now (pain killer) that lasts up to 72 hours.  This is allowing him to move around more freely.  He does feel it as the medicine begins to wear off, and it does take a little bit for the medicine to kick in again, so he will have 2 good days followed by 2 rougher days - but hey, we'll take it!


Graham has also had some good conversations with Dr. Rosenblatt.  I threatened to go postal on Dr. R...this might have lit a fire under Graham's ass.  If you anger someone who doesn't get angry, you may have done something wrong...just saying.


We have had this thought in our head: if you look at Graham's test results (X-rays, CTs, blood work, lung functions...) he is at the same level he was on a "good day" pre-transplant.  Now, with CF, his numbers fluctuated a little more depending how much Graham could cough out of his lungs; with rejection, there will be no improvement - what's gone is gone.  But, why couldn't Graham get back to this phase in his life that he was very much living, working, playing, speaking?  We've been afraid to ask, thinking our thoughts would be turned down.  Good news, Rosenblatt fully believes this prediction and this life is now Rosenblatt's mission for Graham to achieve.  It took 6 months what previously took Graham's body 32 years to get to.  His body is in a little shock, to say the least.  Hopefully with psychiatric care, physical therapy, and a strong will...Graham will get there and he'll be back. 


I tear up every time I think about it.  I miss him so much.  I miss is smile, his laugh, his stupid practical jokes.  We had our first argument the other day since this all began back in June (about me confronting Rosenblatt) and it was AWESOME to see him have emotion for something!  Then, we played - Jordy and Graham colored (tattoos, but whatever), we played Rummikubs, and the best one - we played War.  Jordy made fun us, but it was fun.  We talked, he smiled, and I can't wait for the day that it isn't just moments, but our life again.