So the surgery went fine. The doc said that generally the greater the pressure of the fluid when it is released (he's seen it squirt out over his shoulder) the greater the relief the patient feels afterwards. Alex did not have much pressure. AUGHHHH!!!
Last night was absolute misery. Alex choked on his own secretions most of the night and had to be suctioned (like at the dentist's office) to be relieved. Neither of us slept much at all. He did not consume one bite of food yesterday and getting him to drink was a real battle. The reason is most likely that the breathing tube used during surgery has caused some inflammation and irritation and it just hurts him to swallow. He does not complain about his throat hurting though. He complains about his stomach hurting because of all of the choking. He is so afraid of choking this morning that when I left the room at 9am he could not bring himself to eat a bite of pancake nor drink. I became so frustrated (and tired) that I had to leave him with Nonni to handle the situation.
Today is the Jewish New Year and Dr. H said I could make the call whether or not we went home today. He said "if you are comfortable, then get out of here." Unfortunately, I am not comfortable and I don't want to take Alex home and watch him suffocate on his own saliva.
I am completely and utterly done at this point. I just want someone to HELP this little boy! I'm sick of hearing "I'm so sorry, blah blah blah." I want the docs to stop practicing on him and just make him feel better! Why is that so frickin' hard? I want to yell at them that they are inadequate and stupid and for God's sake please stop asking me the same damn questions over and over again. If someone asks me again, "is the choking new?" I think I will scream. Can't they see that he had a swallow study over a year ago for this? Can't they take the time to find out anything about their patient. Why with every shift change do I have to tell the new nurse not to talk to Alex's right ear, to address him directly in front of him? Can't someone make this known to all caregivers? I'm so FRUSTRATED!!!!!
So you may ask, "what's next?" Well, if Alex's symptoms aren't improved by next week and his ventricles are back to regular size then we will have to consider brain surgery to remove the tumors. Whoo Hoo! Can't wait!!
Okay, I apologize for the rant but I'm getting mad! I don't see any sleep in my future and my sister and her family arrive tomorrow for the vacation that is not to happen. Alex may be in the hospital for the majority of their trip and I'm pissed about all of this. This is so unjust!
I don't think I want Alex to have any friends come to visit today. I may change my mind later, but right now, I want him to rest and realize that doing everything possible to get out of here (rest, eat, drink without choking) is the best thing. He has said before that he wanted to spend the night in the hospital so he could see his friends. That gave me a reason to pause and reconsider the situation.
So if you were wanting to come by, please call first. Maybe I'll sweeten up in a few hours. Otherwise, it would be in everyone's best interest to just stay away (from me!!).
Bye,
g
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6 comments:
Gwen,
I am so sorry your sweet boy is going through this. I wish the docs and nurses could WAKE UP, and pay better attention. You guys are in my thoughts and prayers.
Daphne
Don't you dare apologize for ranting! If you didn't get some of this out I think you would explode or implode. I truly think imploding would be worse and definitely not in your healths (mental or physical) best interest! I am with you on screaming; Just let it out. I bet you think that once you start you may never stop, but that is a risk worth taking! Post a sign on Alex's door of your top 10 most irritating and over asked questions. When they come through the door you can say "Did you read the sign on the door?" If they say no send them back out and make them sign a sheet that says they have read and understand "The Kasnoff Rule" and agree to abide by them.
This will keep things in check and make them take responsibility for their awareness!
If you'd like I'll create the forms and print them out for you! I can take them to the Nurses station and make them sign a consent to follow "the Kasnoff rules" form.
Love, Tina
I love Tina's suggestion. You should do it! That must be so frustrating to go over everything again and again. I remember when I was in the hospital for 3 weeks and I was going crazy because it seemed like NO ONE ever read the darn chart! Why is it there then? They spend all the time writing up stuff that no one reads.
You should rant all you want! You are entitled, and more! Don't apologize.
Karlyn
Gwen, we wish the medical community could be more sensitive and fix this horrible thing, but don't be shy about ranting. You are entitled....and maybe even get second and third opinions? Ideas, anyway. Does MD Anderson in Houston handle such things. It's the best... Continued prayers for you all...Call if Alex wants visitors or you need help with Zoe or whatever
Susan
I don't know Tina but I love her. I wish I was there to guard the door and screen the invaders!!! Steph told us about this before we read the blog. I WAS FURIOUS!!!! Hang in there we are praying morning noon and night!!! I hope Alex enjoys the visit with Evan! Wish I was there to KICK ASS and take names! Love, HUGS and Kisses, Paul & Dianne
Please continue to rant. You're entitled and we love you just the same.
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