I would give anything (and I mean anything... my right arm, my leg... anything) to be able to just pack Tripp up and take him to the beach, or to the mall, or hell- just outside. I would do anything just to be able to dress him in normal clothes, or just slap a diaper on him without having to bandage his bottom back up and lube everything in aquaphor. But most importantly, I'd give anything not to have to watch him in pain everyday. Not to have to watch him try and just open one eye because the other one is swollen shut and pouring like a faucet. No to have to watch him clawing at his neck (thank God for no fingernails) because the sores around his trach itch him. Not to have pull a bandage off of a sore while he cries in pain. Or I'd give anything for him to be able to wake up happy and not in pain.
Sorry but every now and then I have to vent. I wouldn't be able to make it through unless I did. I just go through the motions every day, putting on a happy face for Tripp, and all cried out. But if I don't let it out every now and then, it builds up. My days and nights and weekdays and weekends all run together. And no matter how much coffee I drink, I can't get my energy back (I need to get my butt back on the elliptical). I'm even sleeping a little better at night since Tripp has been sick (guess he's trying to catch up). I just feel BLAH. I have so many emotions and thoughts and questions going through my head right now. I can't help but wonder about what the next year or next few months are going to bring for us- in many ways. I'm praying hard. I started reading a book last night called The Power of Positive Thinking (yes, I am in the middle of about 3 books right now) and I wanted to share some things from the book. It says that "ordinary problems could be met by ordinary prayers, but when big trouble comes along, you have to pray deep prayers." It also said that "God will rate you according to the size of your prayers." And here is the scripture that follows "According to your faith, be it unto you." (Matthew 9:29). So the bigger your problem, the bigger your prayer should be, right? Right. That's why I'm praying big... about what the future holds for us. I have a feeling that I will have to make big decisions soon, about a lot of things in my life. So big decisions- means big prayers.
Tripp is doing about the same, maybe a little better. I've been giving him Tylenol with Codeine about once a day, too. And he seems to perk up quickly and play a little, then back to laying back in pain. With all of the other stuff that's been going on, I forgot to mention his poor eye. It's been so bad ever since surgery but I just haven't been able to take him back to the doctor with all the other stuff going on (plus there's not much for the doctor left to do!) So I finally made a doctor's appointment for his eye tomorrow. Don't know what they will do- we will possibly have to take out the symblepharon ring and just put the contact back in. I don't know?? We will see and I will let you know. I'm also waiting to get his stool samples back to see if he even has C-Diff. So, I'll let you know about that too. Also, his mouth has been bothering him so much lately, too. So I'm trying to schedule a dentist appointment, too. So that if he has to go "under" again for his eyes, we can get that mouth fixed, too (the dentist finally got her equipment in the OR at Ochsner!!!). Anyway, that's where we are right now... I'm frustrated and want answers... but I'm praying BIG- because I want BIG answers:) Love you all.
How this child smiles, I do not know...
Love,
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