Tonight we were reminded how delicate our sons life really is. We also learned how it is better to have procedures done that make life more challenging, than to watch our son potentially pass away...
This evening I was holding Sol and he had a large air leak around his breathing tube, more air seemed to be going out of his mouth than down the breathing tube itself. The nurses messed and messed and messed with it but it wouldn't go away. His numbers looked really good so they weren't really worried. Later when he got back to bed, he still had a terrible leak but they decided since his oxygen levels looked good they would leave it. Daddy and I were talking and looking at him because he was super awake!!! He had some secretions in his mouth and when I pulled them out, a huge plug of secretions came out and his leak went to 100%, at that point everything went down hill....the nurse came in and I'm really not sure what she was doing but she just kept frantically suctioning his mouth out while air was just blowing out his mouth. He then started gagging on his tube. They called in respiratory therapist, which did nothing from what I could see, where at that point the neonatology nurse practitioners came in. He still was maintaining his oxygen levels but he was gagging hard on that tube and started throwing up. I had to leave at this point. I am so sick of watching my babies go through this type of stuff I just literally can't take it anymore. My husband kept me inform, and while the plan was to get an xray and see where the breathing tube was, xray didn't make it in time and the tube came out. They attempted to intubate him but 3 different people failed. They finally got anesthesiologist in there and on his first try he got the tube in.
Nothing is worse than to go back and see your baby with loss of color, cold, and upset. I can't handle these things anymore. Life is truly unfair, not to me, but to my babies. They never did anything to deserve to have these things happen to them. He deserves so much better, he deserves a stronger parent because I am too broken to handle situations like this anymore. And with the whole ordeal, we decided it is important we get the trach as soon as possible, it is just too hard with this tube and if people aren't going to be careful enough to not move it out of place, then we have to have an easier airway, I dont want to see this happen again. I worry he might be hard to get the trach into as well, but at least it is a shorter tube, lower in his airway, than the breathing tube is.
Thiago, (daddy) stayed at the hospital with Sol overnight, we just didn't feel safe to leave him there alone. Our nurse is a little tactless that we have this evening, nothing against her, but I am certain she doesn't like us very much and I wouldn't trust her to call me if anything were to happen. Last update I heard was that he was doing better, he was upset and probably very sore feeling from them trying to get that tube down his throat. I think he ended up getting some pain medication for that, so I hope he was able to rest more comfortably.
I wish I was stronger to handle these situations, but something like this is just too close to the morning we lost Lua and I dont want to watch another child pass away. Unfortunately, when your baby has a problem with the airway, the possibility of losing a child will always be higher than normal. I have grown to hate that phrase soooo much that says you only get what you can handle. Sometimes you get a whole lot more than you could ever handle, you aren't given a choice as to if you can or can't handle it because you have to do it! I'm not the parent I was before I lost Lua. I knew I was weaker than before and at this point I have confirmation with all that happened tonight and i couldn't even stay there for him, I'm disappointed with myself and the fact I have such little strength compared to before. I'm now terrified to go home with him, with or with out a trach! His life is so fragile and I dont want to be the reason we lose him or something bad happens to him. It is simply not fair. He shouldn't have to go through this.
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