<3 home.
- Elizabeth
- Apr 29, 2017
- 3 min read
So, we have started decorating our van!
Home is Maine and North Carolina for us, but I truly believe that home is where you are.
There is a saying that home is where the heart is, and that is what we will be thinking about next week.
On Thursday, Jason went to the lung doctor just to "touch base" or follow-up after his lung issue that occurred while on our Disney trip. We brought the chest x-ray with us that was done after the PEG procedure, but the results were normal. One of the first things they do is take vital signs, and Jason's were abnormal. His heart rate was in the 130s. His blood pressure was lower than normal for him (he likes to run slightly high). The doctors were very concerned about his heart rate. They sent him for a CT with contrast because they were concerned with recent surgery that he could have a pulmonary embolism, which is a blood clot in the lungs. A CT with contrast looks at the blood flow to the heart, lungs, etc.
Good news....this was negative.
We were also sent for labs. A CMP was done to give the doctors information about metabolism, including kidneys and liver status, electrolyte and acid/base balance and levels of blood glucose and blood proteins. They wanted to make sure he wasn't dehydrated and these were all normal. A CBC with differential was done to check blood counts, like red blood cells, platelets, and immune system. The white blood cells (immune systems) were slightly elevated at 12. Normal ranges are from around 4.5-11. They asked us to take some antibiotics in the next few days, just in case. Finally, they checked a D-dimer, which looks at clotting in body, and could help determine a blood clot faster than CT results
Good news...it was negative as well.
What does this all mean? Well, he doesn't have a blood clot, which is great. BUT, something is wrong. His lungs are going down hill fast and it is in the very beginning stages of affecting his heart. They recommend doing a tracheotomy procedure ASAP. Normally, when a trach is performed, it is in emergent conditions where doctors need to maintain an airway to provide respiratory support or in anticipation of prolonged ventilator support.
In the ALS population, this is not really the case.
It is mentioned in the very beginning that a PEG and trach is in the future, but no one can ever tell us when, because it depends on the person and the disease. The muscles in the neck fail to support breathing, talking, eating, etc. and getting the trach placed allows Jason's body to continue thriving by bypassing these neck muscles. Instead of breathing through the nose and mouth, breathing will be done through a tube in the neck. SCARY! Scary because we knew this was coming, just not this soon. Scary because we are deciding to do something hoping that it is the right decision. Scary because it means that we have to go to and STAY in the hospital.
Our home next week will be the ICU at Emory.
He has to stay in the hospital and in an ICU because the ICU is the only place in the hospital equipped to manage trach patients. We have to stay a week to make sure no complications occur and to give me teaching of how to care for it at home.
The good news in all of this....
1. I have some knowledge of it all
2. When we come home, we will use the same machine we've gotten used to
3. We will see many familiar faces in the teaching process. Our doctors will see us in the hospital. Rob, our respiratory therapist, has been to our home several times. He is the one that will teach us about care of the trach. Glen, the nutritionist will surely see us to touch base on the PEG and nutrition goals.
MORE INFORMATION
home....
"You can have more than one home.
You can carry your roots with you
and decide where to grow."
~Henning Mankell
"When you live far away,
home looks a little different every time."
~Gideon Raff
"Go big or go home.
Because it's true.
What do you have to lose?"
~Eliza Dushku
"If you want to conquer fear,
don't sit home and think about it.
Go out and get busy."
~Dale Carnegie
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