Tiny Salutations

Tiny Salutations


Friday, August 21, 2015

Life Doesn't Go According to Plan

So, I had a blog post all written up and ready to post last weekend.  All it needed was photos uploaded.  That's when life decided to throw me yet another unexpected curve ball.

I got a text that my Dad was in the hospital.  He was having heart problems and was heading to the ICU.  He would be having open heart surgery.  They got him stable and then operated three days later. 

I never doubted he would make it through, but I was still heartbroken until I knew he was safe after surgery.  I spent a few days with him until the night after his surgery.  He is a huge part of my life.  I call him nearly every day.  I consider my family, and the people closest to my heart, my husband, my son, and my Dad.  There are many more people I love, but those three are the three that are always pushing me forward in life, the ones I couldn't live without, a part of my every day life.  My son and my husband adore him as well. 

His surgery went well, just as the doctors expected.  He is a superhero.  He has surpassed all of his expected timelines to get to each milestone (sitting, walking, eating, etc.).  No doubt he will be better than ever in no time.  I have a few amazing photos of my son and my Dad being so sweet together in the hospital, but out of respect for him, I won't post them here unless he wants me to.  Layne was able to be quite gentle and sweet for the most part with my Dad though when visiting before surgery and kissed his "pokes" (blood draw sites) and talked and joked.

On top of all of this chaos, my son and I have had our own troubles. The day I went to stay with my Dad in the hospital my son went to Children's hospital all day, I got worse, our car overheated, and my phone broke, all in one day.  Sheesh!...

During the time that my Dad was in the hospital, Layne had to go to Children's Hospital for 6 hours of appointments.  These were all in regards to pulmonary and aspiration issues.  We have gotten some more information from these appointments.  Layne had another swallow study, this one more thorough.  When drinking regular liquid (meaning not thickened), the liquid goes down the wrong way and sits on the vocal chords every single time he swallows.  They didn't see it go through the vocal chords, but they said that during a meal it is absolutely certain he would aspirate at some point- and this is with a trainer sippy cup, which is the strongest valve you can use before going back to a bottle.  This means that in the past three years, he has pretty much always had some amount of fluid in his lungs.  The good news is that when the liquid is thickened, he swallows correctly into his esophagus.  The bad news is that he will likely have to have surgery on his throat to correct this.  He likely has an anatomical problem that has caused there to be a gap where the folds/valves are supposed to close over his trachea to prevent liquid from going to his lungs.  This would be a cleft from either a birth defect or from being intubated for so long.

Layne will also be getting another echocardiogram to check on his heart.  He just gets tired so quickly.  He has lots of energy while active, but then just needs breaks very often.  During physical therapy, he can only work hard for about 20 minutes before he is unable to do what he is asked.  When I asked his physical therapist what she would expect for a healthy kid at his age, she said he should be able to make it the whole time through before getting worn out.  After about 20 minutes during that therapy session, he had to be put into a swing, because he was to tired to finish his activities.  His pulmonologist said it is likely a pulmonary or cardiology problem.  He does have a murmur and still has one heart defect that the cardiologist had said was okay for now (a year ago), but we need to investigate his heart further.

I have slipped back to being completely incapacitated.  It all started about 2 weeks ago.  At that point, I was becoming a little more mobile.  Then, we went to a renaissance faire.  It was in a big field.  The grass was very short and almost entirely dead, but my wheelchair doesn't do well on 'off road' terrain.  So I thought 'I've been getting around better, why not walk with my cane instead?'.  Turned out to be a bad idea.  At the back side of the park, my legs started collapsing.  I started panicking and almost crying, because I couldn't find a place to sit and we were so far away from the car.  Thankfully, we got to park up close to the faire in a handicapped spot.  From that day on, I have gotten worse and worse.  This week I hit rock bottom again.  I was already declining, but the stress and the lack of sleep (Layne has boycotted sleep and will only sleep about 2 hours a night) has made things much worse much quicker.  My fever has commonly been up to 101F from lupus, and I have had trouble with my vision.  I am unable to walk and have to be lifted to move out of bed or to the toilet.  The scariest though has been my difficulty breathing.  the night I came home from the hospital staying with my Dad, I kept stopping breathing while awake, and my oxygen level was only 91.  My husband was in the other room attempting to get Layne to sleep, and I was so weak that I was unable to communicate to him that I needed to go to the ER.  I was waiting for him to get me a part to my APAP (a machine to help me breathe at night), but finally just used it since the part wasn't necessary for its function.  I decided it was okay to get some sleep as long as I had my APAP on.  When I woke up in morning, I checked the data on my APAP, which said I stopped breathing 17 times per hour, some of those being very, very long periods of time.  Of course, my head was very painful from lack of oxygen (If you haven't read The Fault in our Stars, you need to, and there is a part that talks about low oxygen headaches), and my joints have also be extremely painful from lupus and from my pain patch being on backorder for a while.  I saw a doctor at my doctor's clinic, and they were considering checking me into a hospital for a short time.  He decided to try a large dose of steroids first, with the hospital in our back pocket.  Right now I am still in the thick of it, but I am hopeful these steroids will help quickly.  I will certainly need to be able to get out of bed for the couple of appointments to Children's Hospital next week and to visit my Dad. 
My APAP to help keep me breathing at night.  An APAP is between a CPAP and a BiPAP and has variable pressure to make sure I can breathe in and out.