Ok, so I know......Three blog posts in just a few days is NUTS.....but I'm sorry, writing this stuff out makes me feel a whole lot better about everything.....when I'm stressed, I write......
Being a "hospital mom" has taught me many things......about hospitals, about insomnia, about medicine, about doctors, nurses and so much more.
When we are in the hospital (I say "we" because I stay with Parklen, pretty much the whole time) I have a few routines I follow, always.........
No matter how hard the night is.....and they are hard, containing continual wake ups for meds and vitals and check ups..... I always set my alarm for very early. I get up and take a shower and get dressed like I have some place to go, even if that place is NOWHERE. I do this at home too....dressing up. It makes me feel so much better than wearing sweats and greasy hair. I have to wake up early in the hospital so I can get a jump on the day......Doctors start arriving early in the morning and if you are in the bathroom or out of the room you are out of luck till tomorrow.....if you miss them, they don't usually come back.
I take notes and remember everything that any doctor or nurse says to me....There are always multiple teams working with Parklen and the only constant in the room..........is me. I ask a billion questions every day, and don't let anyone do anything with out telling me what and why it is there doing it. I have prevented a lot of unneeded things because of this. I treat everyone that comes in the room the same.....they may be top of their field, but I am top of the Parklen field, and no matter how smart or important they are....they are not doing a thing with out explanation.
I have been practicing assertiveness with kindness for a few years now....Ive about mastered it. I try to remember that everyone here is just doing their job, so I try to never insult someone by telling them to do it differently. I use kindness and persuasion to get whats best for Parklen. There have been a few moments that I completely lost it.....but they are few and far between. I usually save my frustration for Devan, and vent to him over the phone.....not too fair for him, I know....but I think he gets it.
I have learned to be careful with information I pass on about Parklen's care- treatments and plans change by the hour......and its so hard to explain to someone that doesn't understand the fundamentals of a hospital. I will flat out ignore a call or text message until I know that its safe to pass on the info.....
I have learned that even the best doctors in the world aren't perfect. I was told over three years ago, by Parklen's main Dr. down here, "There is only one God, and we aren't him.....all we can do is the best we can." I always think of that statement when I'm down here.
I was told today, by one of the operating doctors, that I was really good at being a hospital mom.....to this I say, Shine where you are. If this is where I have to be, If I have to be the mom of an ill child...then I am going to be the best one I can be.
Nothing went as it was supposed to today......this is nothing new. Plans change, schedules change and that's just the way it is. Parklen went under anesthesia today for a lot of testing......The doctors were looking to see how far he has come in treatment since last year. All of us had high hopes, that after this long of the treatments he would have tremendous progress..... I wasn't even worried while I waited during surgery.
The GI doc was the first to break the news......I saw it in his face as he headed my way. There is a thing about pediatric docs....they deal with sensitive situations, so they try the sugar coating method a lot of the time. I hate sugar coating....I don't want to live in la la land....I want reality. As he showed me the pictures of Parklen's colon and stomach I went numb. Its worse....not even slightly better, worse. When I asked for honesty he gave it to me.... "I don't know if it will ever get better." His lung doc was next....same story. The nodules that he has in his lungs are so bad that they are clustering together....and trapping fluid and secretions in his lungs....they could hardly get through them for pictures.
This is devastating to me. The progress we've made, it seems doesn't last. Maybe he just needs years more of treatments before we see progress....maybe we need to try something new.....I don't know. His main doc is out of town until tomorrow.........so I will speak with him then.
Parklen had trouble breathing today during surgery.....so we are here another night.
I know God has big plans for this kid.....I know it. Sometimes I just wish I could see the big picture. See past this pain........past this pain. But, I cant....I just have to trust that the one who can, knows exactly what He is doing.