Monday, November 22, 2010

Julie's Home

Julie's Home; That's a common theme around here. Having Julie home is something we've said 6 times this year after each two week hospital stay. It's amazing how Ben and Jack respond everytime the see her 'for the first time'. When we drove up to see her last Saturday, Ben had a look of complete bliss. He just smiled with his mouth closed looking up at his mom in the front seat. He just sort of looked forward at the seat in front of him and kept on smiling with a look like 'that's my mom up there'. Jack on the other hand started giggling and didn't stop for several minutes. He was so excited and couldn't stop giggling until he started to tell her stories and jabber about trucks and other things in plain english (to him). Ben quickly joined in and yelled 'daaaa!' as he pointed forward. Again, they are at the age where they talk like you should understand every word (especially Jack right now)

Friday, November 12, 2010

"It's good to see you"...Really?

You'd think people would take a minute to think about what they say before they say it.  Anyone who knows me would say 'that's like the pot calling the kettle black Dave'.  I am known to have started up a conversation with people in the middle of my thought process giving them no background to the question or statement I make.  The first person to call me out on this was my Dad.  After a few minutes of silence while working on a project in the garage together I would say something like: "Why do you think they do that?"  "Do What!" Art would say in his irritated stern voice.  "Son, you need to THINK before you speak!  I have no idea what you are talking about!"  Interestingly enough, Julie does this all the time too.  If you are around Julie long enough, she not only does this, she expects you to follow her in the conversation.  She will continue on and give you incomplete sentences ending in "You know what I mean?"  I am finding that I actually have an idea what she is talking about, even when she starts talking to me mid-thought process.

What is the point?  Everytime we have been in the hospital lately, the staff who regularly see Julie say things like: 'Back so soon?' or 'Long time no see!' or 'Your in here a lot' or 'I hope I can remind you how sick you are'...just kidding.  I made that one up.  We usually get a good laugh out of how lame people sound...Debbie downers. 

We always have funny stories about how people treat Julie in the hospital.  How often are we actually offended?  Almost never.  Take today for instance; Julie told me about one of the nurses who was shorter. When she came in to do her meds early this morning she stood awkwardly close to her and just spoke as if it were 1:34 in the afternoon.  You know the person?  Close talker. Well she asked to get a new LPN.   Or the nurse a few hospital stays ago; Julie had a nurse that would turn on all the lights in the room for her 1:00 am med. as if she didn't have a flashlight.  Julie asked her to use her light, or at least just the one by the sink, and the nurse started to banter with her.  (By the way I am laughing as I write this, and Julie's laughing when she tells me these stories) I understand that she probably needed to see what she was doing to take care of my wife, but when the other nurses do it with a flashlight, you have to wonder.  Then theres the ones who want to chill and tell julie stories.  Julie loves to talk to some of the nurses, but it is so funny when I am on the phone with her on speaker and they walk in without knocking and start talking to her as if she has absolutely nothing to do or think about.  All the while I'm mid sentence and I hear the faint Julie voice answering a question about blood sugars or liter flow or something.  This happens on a daily basis.  She has to answer the question from the nurse or RT etc because they have a job to do!  They don't have to wait, say excuse me, or even tap the door.  Sometimes they will start to chill, with Julie holding the phone in her hand she will give them a hint, and just yell 'Dave!'  Then, they realize she has had me on speaker phone the whole time and they will just awkwardly walk out of the room.  Julie gets a good laugh out of that one.  The worst for her, and this is serious, is when they do the same thing while she is eating her meal.  Meal time is critical for a Cystic.  She has to eat when she feels good enough to considering the meds and the nausea that comes with them.  Getting inturrupted, especially on those first days when her energy is so low, is very irritating.  Can you blame her?  They are coming into her 'home'.  The least they could do is show a few manners.

We have to make light of these situations.  It makes the whole hospital to home to hospital lifestyle bearable, and sort of 'normal'.  Life truely is great for us.  I said that to Julie last week.  I have never been happier in my life than I am right now.  She agreed.  It's sort of ironic really.  Here we are on our 7th or 8th hospital stay in 2010 each lasting about 2 weeks and life is grand?!  Yes it is.  We have two beautiful boys, a great marriage, and a roof over our heads.  Julie is alive and kicking.  We cling to every positive thing regarding her health.  Something as small as decreasing her O2 dependence today from 6 to 5 liters totally changes her outlook and attitude.  She was able to walk on the treadmill and not feel like she has to hold on to the side rails.  Its because she feels she can improve, and that is an anomolie for someone who has lived with CF their whole lives.  Julie is amazing.  She rarely complains or whines.  On occasion she will tell me how she is feeling, but I just feel like she is getting it off her chest.  She tends to just let it go and move forward.  That is probably why she has beat the odds through her life.  We are being carried right now, and we appreciate all the love and prayers extended towards us.  God Bless!  He is with you and He is with us.  He does care about our struggles and about our trials.  Don't ever doubt!

God Speed.  

Wednesday, November 10, 2010

Not a typical case of the "Mondays"

At 7:30 am I woke up to Julie talking to Kathy Loring up at the UofU CF Clinic about coming in that day. Julie got off the phone and said, "I have PFT's at 9:30 and they're going to see me in clinic at 10:00." This is pretty typical for us when Julie gets sick...well she's always sick, so when her O2 dependence has gone up so much that she knows she needs to go in for a "clean out." "Can you get work off?" Julie asked me reluctantly. I told her I had a lunch, but I would see what I could do. "They might talk to me about transplant; I'm seeing Dr. Liou (pronounced 'Lil') today." Her question I realized was a command from a spouse. We both started getting ready. Jack and Ben were in there room talking, and jumping in their beds full of piss and vinegar...literally, and figuratively! Since the boys were content in their mess presumably, I called my lunch appt, and rescheduled. I sent a text to one of our babysitters to see if she was available short notice...she wasn't. I knew I could call our boys' literal god-mother, Aly. She reacted just like I thought she would; more than willing and as if she had nothing to do. It seems as though every time we are in this awkward situation, we are delivered tender mercies like that almost without much effort. After I took care of that and entered the twins room, it was clear that no matter what the time constraint was, we needed to get them showered. I stripped them down and placed them in the shower. I walked through the office to find Julie online shopping for our neice's christmas presents! In light of her not being able to breath all night, pleurisy and trying to sleep on BiPAP, Julie's #2 concern was getting those girls what she wanted to get them before it sold out! Classic. She probably had a sleepless night thinking more about how she found the perfect gift and didn't want to miss it than her struggle to breathe through a straw! After I got her off the computer, she proceeded to tell me "I need you to access my port before we go." Was she kidding?! It's 8:15, the boys are in the shower, they need to eat, and we need a minimum of an hour to get to Aly's and back to the U by 9:30! I tried to suggest she just go and I would catch up with her...didn't happen.

We were finally out the door at 9:05. On the way out I called Aly back. She got inpatient and ran some errands and was worried we were at her house. "Oh no, I am up on I-80, you are fine. Do you have a banana by chance? I fed the boys a handful of Honey nut Cheerios." She suggested she could go to the store and pick some up. A half hour later we pulled up to her house to find out she was in Smiths finding that bananas weren't the only thing on sale. One thing about Hendrickson women that will never change, is if something is on sale, time stops! The other side of it that I relate to is we tend to try and cram everything in to a little time frame and set up unrealistic expectations...I do this on a daily basis. Aly showed up a few minutes later and I dropped the boys off. As I walked up to the house with Jack and then Ben in my arm, both of them independently looked back at Julie. Initially when we were waiting at the front door for Aly to arrive, they looked back at the car for some re-assurance from their mother. Ben then decided to throw Aly's fake pumkins off the porch. The bouncing action of the first one just reinforced him throwing the second one! I cant wait to raise hell with these guys!

At 10:10 we were walking into the Pulmonary lab for PFT's. Julie's FEV1 was 22% of predicted value. Someone her age, her weight, with perfect lungs would be around 95-100% Her lowest was 21 two hospital stays ago (3 months ago). After visiting with the Theresa the lead RT, Jen the CF Coordinator, and then Dr. Liou, we knew this wasn't just another hospital stay. Dr. Liou is the Director of the CF Clinic and a rigorous researcher in Cystic Fibrosis. By his colleague's accounts, he wrote one of the top 10 papers on CF and research. Predictive 5-Year Survivorship Model of Cystic Fibrosis

He told us that Julie, according to the model, is at a crossroads in her therapy for her disease because she needs to start thinking about transplant. There is a lot to cover here, so I will wait till I can sit down again to write about this. I will follow up with, that afternoon was one to never forget. One where you are numb to what they are saying, but soaking up every word. I thought, 'this is what it's like; to be told by a medical expert how long you statistically have to live; this is what it's like to be told that you/or your spouse has a terminal illness like cancer. It was surreal, and still is. Julie and I went out to lunch at PF Changs to eat are way into oblivion...her dad showed up. It was a somber discussion, and continues to be just that. We don't want to jump the gun, but with lungs we don't want to wait too long either to where she is too sick to survive the surgery. There are a myriad of questions and its really about managing/weighing the risks. Ultimately, only Julie knows what she will do, and according to her Father's priesthood blessing that evening, what she decides, is the Lords will.

He has been very near to us, along with her brother James. She's definitely not alone in this. The promises allotted to her are very definitive, and very uplifting. God will deliver, He always does...especially to this girl.

God Speed.