We have been enjoying Nanny and Uncle Mike since Wednesday and I was so sad to say goodbye today. I really loved having them here and really loved the extra help. I wouldn't let Nanny spoil me too much, though, since I don't know when she's going to come back!! Also, she and Mike had a list of places they wanted to eat while they were here (that they don't have in North Dakota:), so I gained a good 5 pounds from take-out.
I knew I missed my sister a lot, but didn't realize just HOW much until she came and left again. It was so nice having her here and being able to just catch up and hang out. Man, it's great to have such a close family, but it sure hurts to be so far away from one of them. Thank goodness she has such a good hubby that takes care of her, so we know she's in good hands up there in North Dakota:) I love you both very much and will miss you until you come back!!
Today is the fifth day of Tripp's "#1" Fundraiser. Thank you to everyone who has already made a purchase. If you didn't read the post about his fundraiser, you can shop here- www.mythirtyone.com/drhodes and 15% of all proceeds will go to Tripp. The directions to follow are listed in the post below. The fundraiser will end on 1/1/11. Go check out the super cute items that Debby has for sale, while also supporting our little man:)
Brace yourself for this.... two of Tripp's doctors made house calls today! Dr. Defusco (pediatrician) and Dr. Rodriguez (ENT) both drove to the house today from New Orleans. I KNOW, right?! Isn't that just amazing? We sure were lucky with the doctors we chose for Tripp. I seriously don't think I coul have found better doctors. I needed to take him to see both but he literally will not even let us sit him up on the rocking chair- so I knew putting him in a car seat, driving a hour, then getting him out into the hospital would be close to impossible. Both doctors offered to come without me mentioning it.
For the past week, he has probably actually played for about an average of 15 minutes a day- and that was only right after his baths. He will open his eyes laying on the rocker while we sing to him 24/7, but won't let us sit him upright. About a week ago, he had spells where he could barely breathe at all without wheezing. I didn't know if it was the sore in his airway acting up or if he just had a cold with increased secretions. Either way, his breathing sounds a lot better now because I went up on a very high dose of steroids and and was giving breathing treatments around the clock. So since then, he's been laying in the rocker and shakes his head "no" every time you ask him if he wants to sit up. I know it could be a lot of things causing him to hurt so bad... but I just didn't even know where to begin.
Dr. Defusco did a full check-up. Listened to him, checked his ears, wounds, and everything (as much as he would allow:) She could only get to one ear and said the other one looked like it was draining a good bit and that might be what's hurting him- but it had too much drainage to see in it. So Dr. Rodriguez came with her ear suction, and her scope to look down his trach. She said that the ear has fluid, but it's not really infected, and that both of his tubes are still in place. She also said that below the trach (inside) there wasn't a big sore, but the whole airway just looked inflammed and irritated. And being on the high steroids already, I'm thinking how it looks now is it looking a little better than last week.
So between these two SUPER fabulous doctors, I think Tripp is going to be okay and I know that he is in SUCH good hands. God blessed us with such caring and considerate doctors. We are also going to work on getting his pain under control. Dr. Defusco said that she wants to start him on Hospice- JUST so they can manage his pain better. I think if we can get his pain under control that he may be able to have a better quality of life. Because right now, 10 minutes of playtime a day just isn't cutting it. I feel horrible that he sits in the same spot all day, every day. But he just doesn't want to move.
Anyway, today I am obviously grateful for Tripp's healthcare team. Not only are there the two amazing doctors who came to see him today, but there are many other healthcare professionals that he sees that go above and beyond to make Tripp's life and my life a little easier. And I am WELL aware that doctors or just people in general do not HAVE to be so accomdating, that's what makes me appreciate it even more. Knowing that no one even asked them to come, or knowing that they didn't have to make the trip out here, means so much.
This whole situation could be so much worse, but I am surrounded by so many amazing people. Somehow, it makes it a little bit easier... knowing that I'm not in this alone. I hope we spend many more years loving Tripp and watching him grow up together.