Man, oh, man. Where to begin?
Let's start negative, so we can end positive... shall we?
Tripp is back to his- sleeping all day, not wanting to play, infection bearing- self. As I predicted, about 2-3 days after he got off of the antibiotics, he started slowly going downhill again. And he didn't start feeling really bad until a few days ago. Probably in the past 3 days, he's stood up to play about a total of 30-45 min. He will try, and will play for a little bit, then just want to be back in the rocker.
He's been sleeping late... like 2-3:00 in the afternoon late. He always does that when he's sick and got something going on. And with whatever he has going on... he has turned into a FUSSING MACHINE. The child even fusses himself- I'm not kidding. I guess fussing (the "hissing" noise he makes with his trach as he slaps at you) is his only way of defending himself and communicating with us. And now that his eyesight is gone, he is sure getting good at "defending himself."
His SAINT of a pediatrician, Dr. Defusco, offered (without me asking) to make another house call today... on a SUNDAY. She's bringing all the stuff we need to draw blood and finally get some bloodwork done. I think it's been since October (the last time we were in the hospital) since he's had bloodwork done. So I'm anxious/nervous to see where he stands as far as being anemic, platelets (clotting), and infection is concerned. And this is all IF we can get it drawn and IF he cooperates. Dr. Defusco also called yesterday and started him on the same antibiotic that he was on a couple weeks ago. She said that she feels in her gut, that if he's feeling so much better when he's on antibiotics, that we should keep giving them. The only problem with that is the more he takes them, the better chance of the bug getting smart and being resistant to the antibiotic- which would mean the only other option to treat his infections would be IV antibiotics in the hospital. But Dr. Defusco and I have always been on the same page from day one- Tripp's "quality of life" is more important than ANYTHING. I will not magnify his pain or misery, just to prolong his life. I want him to be happy and comfortable and as pain-free as possible. And we will deal with running out of options when we get to that point (as I've known from the beginning that we will one day have to do).
So I haven't used this blog as a means to vent on my personal issues, and I don't intend to start yet. However, there have been so many questions about what's going on in my personal life that I feel obliged to let you in on the big details only (TRUST ME- You do not want to know the other details). Randy and I have been living apart and separated since last July and our divorce will be final this coming July (next month). And ALL I will say is that things are NOT going well and have been difficult for everyone involved. I would appreciate your prayers for understanding and forgiveness. I will need them to get through this with just a little bit of sanity left so that I can continue to move forward.
I know that the statistics were in our favor with a special needs child, but I want to clarify that this was not something that was just given up on. There were/are other obstacles than Tripp that were/are still involved. Thank you for your prayers for us all.
On a different note, we had something interesting happen over here this week. My grandma (my dad's mom) has an apartment that was added on to my parents house a few years ago so she could be close. Well, during the "storm" we had this week, she was talking on her phone (her CORDED phone) when lightining struck through her roof, into her attic, and hit her phone line. We didn't SEE it happen (obviously) but she said it jerked her arm and made the phone fly out of her hand. She's okay- she just can't really move her arm. My dad took her to the hospital and they ran every test imaginable for 2 days, while my mom and dad worked hard over here to get the hole in her roof fixed, along with her A/C, electricity, cable, etc... back up and running.
Our luck, I know... Enter this house at your own risk!
So for a positive note....
Well, we got a whole new air condition unit put in at my mom's, I guess that's one positive thing. Her old unit just wasn't keeping up (like a lot of units here in Louisiana do in the summer), but with Tripp here- that wasn't cutting it. If we were comfortable, we knew he was sweating and miserable. So now it is borderline FREEZING in here- and little man is finally comfortable and getting less new blisters a day. We just bundle up in long-sleeves and robes.
There's not too much more positive going on around here... except for all the wonderful people that I have in my life that are getting me through all of these hard times. I need happiness and sanity to make Tripp happy and comfortable. And I am so lucky to have those people in my life who make me happy and who would do anything for Tripp and I :)
I will let you guys know what the doctor says and what the bloodwork results are.
Thank you for your thoughts, prayers, letters, emails, and kind words!
Once again, we are so blesssed.