Little monster man is my hero! I could tell last week that he was catching something. Sleeping more, throwing up a little here and there, thick trach secretions... but he continues to amaze me at how he doesn't let anything keep him down. He's still been up playing his drums, shaking his little booty, and letting Papa ride him on his horsey in the evenings (now that's cute). All the while, his little bo-bos are draining more and he's been running fevers.
So once again, on Tuesday of last week, Tripp's amazing, wonderful, awesome pediatrician Dr. Defusco made a house call. This time bringing all the necessary things for us to cultures his wounds, etc... and also brought him some cool birthday presents. Yes, you can be jealous- she is the best:) I planned bath around her visit, because she's never seen an entire bath from start to finish. I wanted her to be able to see all of his wounds, our bath process and how everything works. I feel so honored that she would take so much time out of her very busy schedule to drive an hour both ways to spend the afternoon with Tripp. Tripp was super nervous and suspicious of her voice at first... and then when she was still here after he got out of the tub and singing songs with him... he warmed up to her pretty fast. He even made her snap an click her tongue to the songs:) THAT is the definition of a great doctor- no matter how long he/she has been practicing, or how much they know without having to research the books- it's all about going out of your way and caring for your patients. And she's got that mastered.
While she was here, we took about 5 cultures (neck, trach secretions, buttocks, leg wound, ear) and a stool sample. And I knew something was wrong when he slept until 6:30 PM on Friday- YES, in the bed- from the night- not even hardly moving!! Then yesterday morning he was running 101.2 temperature. So I was happy when the results came back yesterday so we could find out what was going on... but of course he's got pseudomonas everywhere. And it's the hardest bug to prevent and treat (in my opinion). In some areas that we cultured, an oral antibiotic will treat the pseudomonas- so he's started an oral antibiotic yesterday. But in his ear, there is only one type of drop that the pseudomonas is sensitive to (which means it will treat) but if that drop doesn't work and his fevers continue, we will have to admit him into the hospital for bloodwork and IV antibiotics (to make sure the bug doesn't get into his bloodstream). So I'm hoping we will know by early this coming week if it's helping.
No matter how careful and clean we are, it seems he's always going to have something going on, especially since he's getting more and more open sores daily. But that's not going to stop us from being hand-washing Nazi's. I made all new signs- for the back door, over the sink, in the bathroom. I'm even going to start asking people to take off their shoes when they come in. I mean, think about it... your shoes are the dirtiest, most disgusting things. No telling where you've stepped or what you've stepped in. I should've done that a long time ago, I know. But it just seems like some people still don't get it. I know that I wouldn't want the bug I pass on to Tripp's open sore to get into his bloodstream and cause him to be in the hospital. You know?? ... But I guess not everyone thinks like that. So I'm here to remind them:) And it doesn't matter if you just left home and took a shower or if you washed your hands before you left the house... did you touch the door handle? or your steering wheel? or the buttons on your car radio??? All of those places have germs. And when you come out of the bathroom... I mean REALLY- does that even have to be explained?? So before you touch my little pumpkin's toys... SCRUB HARD.
So last week... before Tripp's birthday, Mr. Bill Capo (from WWL Ch 4) came back to the house. He had been asking for a while if they could do a follow-up story on the response we got from the "Angel Baby" broadcast and I just hadn't been up for it... too much going on. But when he called this past time, he convinced me to let them come. They wanted to do a story on Tripp turning 2 as well. So they came and did an interview with me and they were going to try and get Tripp up and playing- but he was not having it. He was so suspicious of the two strange voices in here and the big lights. And he knew we were trying to intice him with the drums for a reason. He stayed in that rocking chair and wanted nothing to do with them:( I don't know when the follow-up story will air yet- he hasn't told me. But with all the flooding going on, it will have to wait! I'll let you guys know:)
We are also in search of some cool toys for visually impaired kids, so if anyone has anymore ideas, please either e-mail me or leave it in the comments! We would appreciate the suggestions! Tripp's eyesight is pretty much gone. I think he can still see shadows and bright lights, but I can tell it gets worse and worse each day. But he has adapted SO well. He knows where everything is in his one little area. He knows exactly what something is the second you place it in his hand and he knows exactly where to find any button on any toy. His sense of hearing has really stepped up it's game, too. We just have to pray his little ear canal stays open enough for him to at least be able to hear- his right ear canal is so tiny and trying to close up (I think because he always lays on that side- and there's no turning him, he turns right back).
I want to thank everyone again for the amazing amount of support. I wish I could list every single person who has helped me either emotionally, financially or physically. It's over-whelming and I am so SO grateful to each and every one of you. I won't go into detail on the blog about this... but I want everyone to know how much their kindness and generosity has helped me through these very difficult circumstances that I am under. I don't know what I would do without the support from such thoughful, selfless people. I know I say this all the time, but all the good things that have come from Tripp's disease (the amazing people we have met, the lives he has touched and changed) helps me understand just a little why he's having to suffer so much.
I hope everyone has a great week!
(This is what happens when you say "Smile for the camera!")