Saturday, June 25, 2016

Is this real life?

It's been an interesting couple of days...of course.  When is it not interesting around here?

Where to start...

Well, for starters, Spencer is moving home this week!  Yay!  I'm excited but sad too.  I'm always happy to have him home but the circumstances aren't favorable.  He was evicted from his place in Utah.  Apparently, it is the law in Provo that only three single people can live in a rental house.  He was the fourth guy and the last to sign a contract so he was evicted.

It is really such a strange twist of events.  It's a college town and you know the majority of apartments and homes down there are crammed with a lot more than just 3 students.  Someone must have turned them in because it just seems like such an unlikely thing to happen.  What are the odds?  I just shake my head and wonder why.   He had to give notice on his brand new job and now he is jobless again and will have to find work here.  He is in another contract for housing, starting in September but then it's moving again, finding a new job...again.  What a crappy deal.  I feel really bad for him.  It makes me think that there is a reason that he needs to be home right now.

Friday, we had a long day at the University of Utah Medical Center.  Shelbie was not feeling well to start with and the pulmonary function tests just about killed her.  They had to keep stopping because she was on the verge of passing out from not enough oxygen.  I kept thinking, "Finally!  Someone else sees what I witness every single day!"

But at the end, the tech said, "Well, she looks great!  We don't need to do the last couple of tests because she passed."

"Are you kidding me?  Look at her!  She is practically turning blue.  She can't even breathe!  That is the picture of someone with a healthy set of lungs?"  I asked.

"I mean, clearly she isn't doing well but all I can say is the numbers look okay.  You will have to discuss this with her doctor but I called her and she said to cancel the remaining tests."

My Wasband and I were a little, tiny bit livid.  We knew nothing about this new pulmonologist and we were just fed up.  We jumped far and wide to various conclusions and Shelbie was crying and sick and the whole thing was becoming a disaster of epic proportion.

We headed upstairs and I just kept telling myself we could get a second opinion and that's the only way I could propel myself forward and walk into the clinic.

The doctor was well over an hour late so it gave us lots of time to unwind my tightly wound head. She eventually came rushing through the exam room door in a frazzle.  Apparently, she had been dealing with a "threatening patient" and hospital security was called.  She would say something and then her phone would ring and she would talk to the person on the phone.  Then she would apologize and we would get back to things and there would be a knock on the door and she would leave. It was so bizarre...Finally, she just explained that she needed to work with the security and now the police who were on the scene in the next room.  I actually felt very sorry for her because clearly, she wanted to be there for us but I'm sure she was quite frightened.  She kept thanking us for being patient and cheerful and that it meant a lot to her.

Anyways, beyond that, things calmed down and she was amazing.  I really like her and it was such a blessing that we meshed, especially after such a rough morning of testing.

However, we did not receive good news.  She said, "What has been done about the pulmonary embolism she has in her lung?"
"She doesn't have a pulmonary embolism, she has arteriorvenous malformations, AVM's."
"You are right, she does have AVM's and she has granulomas and some scar tissue and lymphadenopathy but she has a blood clot as well."

My jaw dropped!  She pulled out the radiology report from a year ago and showed me!  She said she had looked at the films and saw it herself!

"I'm so sorry!  I didn't know.  Our doctor only mentioned the AVM's and granulomas and I didn't request a copy. I'm so sorry!" I instantly felt sick and tried to balance myself on the chair I was sitting in.  I have no idea what anyone else in the room was thinking.

"So no one is doing anything about the blood clot.  What about the AVM's?  Any talk of coiling them?"

"We were told there was nothing they could do."

Long story short...She believes that Shelbie's breathing problems are complicated.  Some may be from the AVM's, especially if they have grown in the last year.  Some is caused from her worsening Asthma but her real worry is that her heart problems are advancing and her heart is not getting the blood pumped correctly.  Not only that, a lot of the symptoms she is having are directly related to that blood clot in her lung! She has at least one hole in her heart, AVM's around her heart, increased pressures and two faulty valves.  Her heart is working way too hard.  They did eventually have her do the last test which was a 6 minute walk in order to qualify her for oxygen but her saturation levels didn't drop low enough to qualify.  During that test, it was noted that her heart rate sky rockets within the first 10 seconds of exertion- just a simple walk.  Not even a fast walk!

The plan is that she will be meeting our Cardiologist who's office is just across the hall from hers, early Monday or Tuesday.  She wants to repeat the CT Scan with contrast and get an echo and then whatever else the Cardiologist wants before we go down for clinic in a couple of weeks.  They will hopefully have a plan.  She could see that Shelbie isn't doing well and was appalled that no one has bothered to address the blood clot. When we told her that Shelbie had a neurological event in November but they couldn't find the source of the clot or bleed, she just shook her head and said they really need to get this sorted out sooner than later.

I have confidence in her and I'm glad I was able to let the frustrations go from the testing and be open.  Shelbie seemed to have taken the news in stride but I know the reality of this will hit soon.

I can see that this is another blessing in disguise.  Her life has been preserved.  When I heard this pulmonologist run down the list of things structurally wrong with Shelbie's lungs, there seems to be no way this girl is still breathing let alone living.  There is no human way.  I pointed this out to Shelbie as we wearily made our way home late last night.   She agreed and can also see how blessed her life has been.

I am grateful that through my fatigue, anxiety and worry, I can find God in the mix of rotten things.  It's hard and takes a lot of work but it's worth it to hold on to that!  It's even harder to keep these little mercies in remembrance.


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1 comment:

  1. I'm so glad the new doctor seems ready to get to work for Shelbie!

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