Tuesday, October 1, 2013

Happy Birthday-10/1/13 blog

Today is Danny's birthday~here's how it's going so far...

He is still in the hospital for the purpose of removing excess fluid and making sure the Coumadin is at the appropriate dosage. Even though Danny and I have known for a long time now that he's still holding fluid...it seems to have taken the doctors a little longer to catch up. The problem is that it's not in his lower legs like normal people. Instead, the fluid is hiding in a smooth layer in his lower back, belly, and the back of his thighs. No one would know it was there except for those of us who know him well. Normally he feely bony because he's so thin, but now he feels mushy. Anyway, there is some blood test that shows how much excess fluid a person has. I wish I understood how testing blood shows fluid level...that's so interesting!

Danny has been on Lasix since yesterday morning and he has steadily been using the bathroom...I think the nurse said a few liters! GEAUX Danny!!!!! ...in my fam we would say "That's how D does it" (in honor of that crazy lady on Glee)

All was fine until Danny started vomiting. Fortunately he had enough warning to be able to get to the bathroom in time, but unfortunately, he had open heart surgery 3.5 weeks ago!! His chest was hurting so badly...I felt so bad for him. The nurse gave him medicine to help stop the vomiting and the bonus is that it gave him some much needed sleep. In addition to the nightmares about being shocked, now Danny is having them about his driveline being pulled out and the LVAD being ripped off his heart and out through his abdomen. I think that would prevent anyone from peacefully falling asleep!!

The other problem he has had is a persistent, localized headache where I bonked him in the head last week (which popped a blood vessel in his eye). It's just a medium level ache in that one area and I've gotten myself so worked up about it I think now I believe he has massive bleeding in his head!!! Danny has been having a great time teasing me about abusing him. The doctor ordered a CT scan of his head just to be sure---his INR level was super high (meaning his blood was super thin) the day I "hit" him. We haven't heard the results yet.

I'm not feeling so great today either. I've only had one migraine in my life and it was truly horrible. All day I've had a constant, achy, soreness in my head that feels similar to what it did before the migraine hit that time. I'm praying that it just goes away because I don't ever want to experience a migraine again!

Danny and I still don't know how long he will be here this time. The doctor wants to get all of the fluid off, but she isn't giving him anymore Lasix today in case that was the cause of the vomiting. hhhhmmmm...which is better...excess fluid or vomiting? Excess fluid prevents the BP medicines and Coumadin from working effectively, but the Lasix (fluid remover) can cause vomiting (from dehydration??) if used too much or too quickly. So again, it's just a really delicate balancing act.

The Lord is so awesome in knowing our needs before we do and is therefore perfectly able to meet them. He knew the husband and kids I would need to bring me so much joy. He knew the family I would need to support us through the things Danny and I have been through together...I feel like Danny and I have walked through a pretty good share of hard times, (but I wouldn't trade any of it for the world):
  • Our 1st baby, Daniel Jr., died a day after birth from an unexpected heart defect (1998)
  • Danny contracted West Nile Virus (2001) and was extremely ill for about 6 months--led to financial devastation and permanent heart damage (didn't know about until two years ago)
  • Danny diagnosed with viral cardiomyopathy (2011) that probably came from West Nile Virus
  • Danny progresses to end-stage heart failure and receives LVAD (2013)
  • Danny is placed on heart transplant list (2013)
The family support we have had through our marriage is more than I thought possible...it's truly a gift from the Lord. Sometimes I imagine what our life would be like without them, and it makes me cry because I don't know what we would do. Danny's mom and dad just came to the hospital to surprise Danny with sandwiches (he loves Which Which) and chocolate cake for his birthday. Carolyn said something that I think is amazing: "well, 39 years ago we were in the hospital giving birth to Danny and 39 years later we're in the hospital again!" I know how difficult all of this is for me...we can guess how others feel but we never really do know. As a mom, I know how much I love my children and how I would take away their pain and suffering if I could. Danny's certainly not a baby, but every mom out there knows that no matter how old our children get, they're always our babies! I don't want to ever underestimate or minimize in some way how difficult all of this is on Danny's parents and sister (and extended family). They've known and loved Danny longer than I have and when I imagine my own children or brother and sister going through what Danny is, my heart breaks in new ways. We are all suffering through this--just in our own ways.

Boy...I'm feeling so sentimental on this birthday!! Thanks God for creating Danny! Thanks Joe and Carolyn for raising him and preparing him to be such a great husband and daddy...and thanks Anne for being a sister he loves so much :)

Next month Danny and I will celebrate our 18th anniversary. I'm sitting here watching him sleep. His body is different now with the LVAD. His head constantly moves side to side with the movement of the pump, I think. His body jerks and twitches involuntarily now. Many times the jerks are so big that it wakes him up. He has terrible nightmares, which prevent peaceful, lengthy sleep. When you listen to his chest and stomach with your ear, the steady hum of the pump is loud and clear. I just love him and am so proud of how hard he is working to recover and fight through the pain he still has from surgery. I don't want to pray for another 18 years, I want 2 more 18 years...or maybe 3!!!

God tells us that life on Earth will be hard, but that the hardships make us stronger (paraphrasing--go read James). Since growing and becoming stronger is always a good thing, it stands to reason that we can be thankful for the hardships!! I am...every hard day we have, I love Danny more. Every hard day we have, I feel God's faithfulness more. Every hard day we have, I feel God's strength in my weakness. Every hard day we have, I draw closer to the Lord so He draws closer to me. I speak from experience...when life is too good and too easy, we tend to forget how much we need God in every aspect of our life. There are many people who just go through life on their own, without the Lord. Although it can work, life without God is life without the blessings, mercy, forgiveness, and of course most importantly...eternal life!! I'd take the hard life on Earth and eternal life in Heaven over whatever other options would be any day. What I mean is, who cares if life is hard? The blessings are worth it. Here's the song that is in my mind today...I wish I could play a clip of the music pastors and/or choir from a wonderful little church I love singing this song...but here are the words (to the chorus, I don't know the rest!!)

It gets sweeter as the days go by
it gets sweeter as the moments fly
His love is richer, deeper, fuller, sweeter
Sweeter, sweeter, sweeter as the days go by

If you want to hear it, I think the Gaither's sang it and it's probably online!

Danny looks exactly like his grandpa Dan (Joe's dad)...see that pointy ear?? Throw on some khaki's and a flannel shirt and they're twins :)


I took the steri-strips off of his chest incision and Danny was pretty nervous at first...they were really ready to come off-I barely touched them and they fell...see how good his incision looks!?!? yaaaay!!

This was hysterical...the shorts Danny is wearing in that picture are some that Charlie also wears sometimes. Danny found this Nerf bullet in the pocket and stuck it in his belly button while I was in the bathroom. He yelled "Tricia I've been shot!" when I came out...lol. Thanks Charlie for our comic relief!!!

Looking good...The scab has already fallen off the other side of the driveline exit site. Those that know me well know how much self-control it's taking me to not pull that other half off!!!! I think it will fall off in the next couple of days. At some point Danny's skin will grow onto the driveline and form a good seal...that's when he can use the shower kit (some kind of waterproof bag for his controller) and wrap his waist in saran wrap to take a short shower. I think that's going to be the best shower he ever had!!!


I was just trying to take a nice 39th birthday picture and he refuses to open his eyes--that's why he always appears to be sleeping in the pictures! The truth is revealed...

One of the PCT's (patient care technician--formally known as aides...) brought these flowers to Danny. She really is a precious lady who is such a blessing to the patients and families here. Apparently someone got married today and donated the table arrangements from the reception to the hospital to give out to patients...that's a nice use for wedding flowers!

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