amommysjoy: Doctor Visits...

Okay so I know that it's been forever since I've written... I'm sorry. You know when you just get in one of those funks... well I've been in one of those for a few weeks now. And every time that I started writing a blog, it always got interrupted by me having to get up and do something. And Tripp certainly has a "Mommy's about to do something she likes to do" sensor. When he was born, I kept telling myself that it's only going to get easier because we are going to learn everything that we need to know and do. But boy was I totally wrong. There hasn't been a day yet that I've thought, "Wow, things are really getting easier." I cannot wait for that day. He is absolutely 24 hours a day.... 7 days a week, non-stop. And I know what you're thinking, 'Why in the world isn't she getting someone to come in and help her?' But the fact is: I am Tripp's Mommy and this is my job. I don't want someone else in my house doing my job. AND, it's not that I can't physically do this, it's more difficult emotionally and how is someone coming into my house going to help me stop hurting when I see him in pain and see him struggling to breathe? I know when I have had enough and I have my family here for me to let me rest when I absolutely can't go anymore. The bottom line (and I hate to say this) is that I don't know how much time I am going to have with Tripp. I may have the rest of my life or I could have only today. But with all that's going on and with the odds against him... I certainly am not taking any chances. I want to be in front of his face for every smile, every tear, every moment of his life and I will cherish every single second we have together, because I don't want to have any regrets. No, this is totally not what I wanted, not what I expected, and definitely NOT fair, but it was handed to me... it hasn't been easy and I don't know if it will ever get easier. But I am so in LOVE with this child that there are no words that can express what I feel when I look at him. And that's all it takes to keep me going. The nights haven't been so bad. I'm getting up to suction a good bit, but then he goes right back to sleep. He would definitely be sleeping through the night if it weren't for all the secretions.

Anyway, we had 2 doctor appointments today. First we saw the eye doctor, then the ENT. The past week I have started noticing that the corner of his right eye was a little swollen. Then it started having a lot of drainage and now there is a piece of what looks like red beefy skin hanging down in the corner of his eye from his top eyelid. The doctor said that it could be one of two things: Symblepharon (which she said is sometimes seen in EB but I've never heard of it, where the tissue from the eyelid can fuse to the eyeball). She said if that's what it is, then it will eventually need to be snipped (in the Operating Room... ugh.) OR it could be a dermoid cyst, which won't go away but we can keep the swelling under control with the steroids (surprise, surprise). So she referred us to a specialist because if he does need surgery eventually, she doesn't do that... the specialist does. So we will see him next week on the 2nd. She gave me some antibiotic ointment until then. WHAT DO I THINK IT IS? She couldn't really open his eye to see in it because he was so upset, but when he was sleeping and I lifted his eyelid, it sure looked just like a big sore to me. Probably from rubbing his eye so much. But who knows what it is? I'm not the eye doctor. Only time will tell... we will see if the antibiotic ointment helps I guess. And if I could pry his hands away from his eye and keep him from rubbing it maybe one day it will have a chance to heal! So then we saw the ENT. I went back to her because the custom trach she ordered that I waited 2 months to get in (glad we didn't have an emergency) was the wrong trach. It was shorter, not longer. Which wasn't exactly a horrible thing, because it went in on top of the other sores. In fact, maybe it was heaven sent. But for some reason my suction catheters that I was using (8F) don't fit in this new trach (and it's the same diameter.) So I am having to use some smaller ones (6F) that we got from the hospital when he first got his trach. And the smaller ones just don't do the trick when it comes to suctioning our all his secretions. So we are having issues with that, but we will make it. Anyway, the ENT said that from what she could see his airway looked pretty good! So maybe changing out the lengths and the steroids will do him good for a while. And I'm sure all of your prayers are working! Thank you all so much and please keep them coming!

Oh and I want to send a HUGE Thank You to Leah's mom, Meg. She sent us boxes of stuff, bandaging supplies, trach supplies, ointments, you name it. It was such a huge help, especially since our home care company stopped carrying our duckie collars!! Thanks, Meg. I know that wasn't easy for you to pack all of those things up, but it was such a blessing to us. We love you guys.

Once again, I'm sorry I've been such slacker with my posting... but please don't give up on me! I guess I shouldn't promise I will post more often because it's just been impossible for me to sit down and have the time to do it. But thank you so much to everyone who has been emailing me in concern. I truly appreciate it and it really makes me feel good to know that so many people out there care about us and follow my blog! All over the country! There are really some amazing people out there.

Now for the pictures....

This is him right now as I'm typing... HINT: that's why I'm typing...