3 weeks we have been home from the hospital. We have gone to Madison once for a doctor appointment and today we took Sol to his family doc. We have a ton more appointments coming up in our future though, so we are keeping busy.
Today has been a little less boring day for us, I like to be bored... But, at midnight, poor sol had too much water in his vent line, it just happens because of the moisture that is needed, and the vent was in a weird position and ended up going into his trach so his oxygen went down and he needed some suctioning. After getting the vent off and draining the water and suctioning he was doing fine. I was scared, still a little, to death that he may get pneumonia from it but he has been looking okay so far today. Except... when he woke up this morning and I was getting him ready and doing our normal routine for the day, after his last set of cough assist I suctioned him like normal and got a little pink tinge blood looking secretions. Scared me a lot because I have never had this with either of my trach babies before. It only happened the one suction, I stopped with the cough assist, we were done anyway, and then called the docs at madison. We are keeping an eye on him and making sure to try to suction as little as possible and watch for any bright red secretions to come out with suctioning. He was scheduled to see his family doctor today so we had another set of eyes and ears looking at him and he checked out all okay so far. I've been letting him rest as much as he wants and not pushing him too hard with anything. I also don't want to suction him and doing too much with him can cause him to need extra suctioning. So he has been having a lazy day today, which is ok! Might not sleep a lot tonight from resting all day, but oh well. I don't want any more pink secretions coming up!
Yesterday was a big outing for Sol. We have been home 3 weeks, like I have mentioned earlier, and I have been doing something with him that I never did with Lua. We are taking car rides alone! If he needs suctioned, I pull over and suction him. He can tolerate waiting for a second where Lua couldn't very much. When she needed suctioned it was now and if you waited we would need to do a trach change! We started our trips just going to Mays school which is only 5 mins away. He has been doing well, some days worse than others, but getting better. Yesterday Thiago's job held a baby shower for Sol. That was so amazing of them to do that!!! But it was a big trip for Sol! Thiago came back to the house and helped me load him into the car but after the shower I came back alone with Sol. His work is further away from May's school, so we had a little bit longer trip, I didn't need to suction him once! I even stopped at May's school and took a little look at her while she was playing outside. Then after getting home and resting for an hour, I loaded him back into the car and went to pick May up at school. We have only been doing one trip a day and yesterday we did two! And he did wonderfully! It is so amazing to have this option to get out of the house just me and him and not feel so trapped. Especially since we still don't have any nurses to help out.
Although it was a little difficult, and a little awkward, the shower was a good time and some of Thiagos co-workers got us a new stroller that can hold all of our equipment! It is a beauty of a stroller and we tried it out today for our doctor appointment. WOW what a difference it makes to have a really handy stroller you can put all our equipment on and even May on it! Any little hack you can find to make life easier! Next, we've decided we really need a van that has more room for us to make getting the stroller and the equipment and Sol in and out of easier. This can help us out a Ton and maybe Sol and I can make it to the grocery store together some day!
Today has been a good day, even with all the scares. I'm so proud of Sol and what a tough little guy he is! He makes me want to keep making goals for all of us and I can see the potential of even reaching these goals. I am a little concerned, though, that when Lua was 4 months this stage was her best time. She was improving the most, smiling the most, gaining the most movement. After 4 months I feel she came to a little standstill. She stopped smiling at 6 months, and talking to her pt she felt that she became to weak to smile, she was still happy just couldnt do it. Sol smiles so much right now, I will break apart if he loses his smile. Their condition isn't suppose to be degenerative, I think because she wasn't getting a break ever with the vent, she had to use everything she had on breathing and growing and that stopped her smiling. The hope is with the vent Sol will continue to get stronger and then in that theory shouldn't lose his smile. But only time will tell.
This week he started moving his head a bit. It was super exciting! He had been nodding but now he is moving it ever so slightly left and right. My big goal for him is to be able to hold his head up someday. I think it may take years, but I really hope he can accomplish this. He is giving me hope of better days to come!
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