Another one bites the dust

Summing up all conflicting feelings for this day.

"Someday everything will all make perfect sense, so for now, laugh at the confusion, smile through the tears, and keep reminding yourself that everything happens for a reason. I am STRONG because I know weakness, I am COMPASSIONATE because I have experienced suffering, I am ALIVE because I am a fighter, I am WISE because I've been foolish, I can LAUGH because I have known sadness. I can LOVE because I've known loss."

Every day that passes by all reason is tested in different ways. Maybe someday I will write a book about it... but for now, this will have to do.

In the middle of being tired and doing it all for my dear girl, a mean comment can brew a wild storm. And so it happened that yesterday the nurse of the afternoon arrived and after seeing Dee comes out of the room and tells us: "She needs something for the mucus, she is so congested. She should have mucomyst. Ask her doctor for it". Me and my hubby exchanged looks, and I answered: "The doctor is aware of how she is, and she is taking her antibiotics and tylenol as scheduled". The blunt answer was "I would change doctor. She shouldn't be suffering as she is right now". With that, she turned and walked away. Me and my husband became stunned... because such a sentence imply so many things. Assumptions and appearances are much deceiving, and it seems that just because she saw us eating in front of the laptop she assumed we have done nothing for our girl! We became quite upset with the comment. Half an hour later she came out to apologize, and my husband accepted the apology. I was too angry to say I did.

We had to go take my best friend to the airport, so my hubby asked our day nurse to come over. She knew all that has been going on and we knew that at least she would try to do all she has done before as she has seen Dee in distress (unlike the afternoon nurse). We went, came back, and thank God nothing happened while we were out.

Later in the shift, Dee went down. The nurse called for my husband, and I went into the room. I reached for the ambu but she took it while calling my husband. She started but was having no effect as she was not ambuing correctly. I took the hard pillow to place it under Dee's neck and my husband came into the room taking the ambu from her. She offered to call 911. We said not yet, she has a plug. I grabbed the suction machine and between his ambuing and my suctioning we took out the mucus plug, stabilizing Dee after coughing her. Numbers went up, not going down. We nebulized her, and fr the rest of the night there were no issues.

This is not an uncommon sight, usually it is me and my hubby teaming up to solve the issue. And then the aftermath is a nurse who won't come back because she is afraid to loose her license... ??!!

We follow a strict code. If Dee doesn't do better after getting out a plug, numbers go down and oxigen while calling 911 is mandatory. We know the difference. Nurses assume that Dee is an easy case because most of the time she is stable. We keep her stable. We use common sense and do aggressive physical therapy in order to accomplish that. The balance of what works and what doesn't is thin, and very specific to her care. When we talk about Dee and her medical care we are not joking.

Overconfidence is quite a flaw. It prevents anyone from listening and learning. That is the main wall that we have faced with all nurses coming our way. This time it all came from someone who boasted much experience with SMA kids... not taking into account that every kid is different. A SMA type 1 can be very different from another... All have unique needs. We know Dee must be 2-3 weeks with constant aggressive care to get out of a cold. That is why we try our best to be paranoid and take many preventive measures. She has been 3 years without touching a hospital because of it. She got sick, we manage. We call the right doctors and we do what we have been taught by so many long hospital stays. We are not crazy or make decisions that will endanger Dee, quite the opposite. It is frustrating that we just keep getting the wrong kind of support (or lack of)... Tiresome, and very dissappointing.

People should learn that if everything is boring, it is actually good. Excitement can be fatal in our specific case... And for Dee's sake, us parents are the ultimate caregivers as we've been through it all and we know what must be done in all given scenarios.