Mike took Jude back to the lab on Saturday to get his blood taken again. Mike signed Jude up on the long list of waiting patients and then took Jude outside to wait. He put a mask around Jude's mouth and nose to keep germs away from him. Somehow Jude's name was called pretty quickly and a line of people held open doors for Jude and Mike to walk through. Somehow I guess that some amazing person gave up their spot in line. People can be so incredible. So they walked to the back where a kind nurse to Jude's blood and he didn't even let out a whimper. We still don't have the results but Jude does have more bruising today. We do know that today's bruising is from his wheelchair because the nurse found his elbows under the pads she made. It's still concerning but Jude's coloring looks really good. So that is reassuring.
So here is where I am struggling. Since the Rhinovirus Jude's congestion and coughing have been terrible. I feel like he coughs on a consistent basis and we are struggling to suction him to get the congestion out. We are past the period that the virus should be giving him issues. His sleep apnea is also so terrible. I get up several times a night to reposition his head, but if I hear the apnea breathing stop I panic. The oxygen cannula doesn't do any good anymore because Jude goes into a full attack because he hates the cannula being put into his nose.We attribute that to the ER taping it into his nostrils and Jude hated it. The pulse oximeter goes off CONTSTANTLY so it often gets shut off. Last night it was 82/186. So it's either keep him in the hospital on a consistent basis or learn to deal with the new normal. I am sure the eventual conversation will hover around a trach but I will put that off as long as possible. We do have a Palliative care team meeting for Jude in two weeks and I am sure that will help.
I am not sad. Jude is not sad. I am enjoying my time holding him at night and talking to him. That seems to be the only time he isn't stressed out around us. The only time he isn't vomiting, toning out, or stretching his body all the way back. He is just happy when I am holding him and he gives me the absolute sweetest grins! His little dimple grows in his cheek when he gives me his smiles.
Sometimes I wonder how much of all of these medical visits and medications are just to make us feel better vs Jude making feel better. It's my job and honor to make sure Jude is well taken care of. To make sure he is getting the best possible care. I just want to make sure he is comfortable but I still wonder!
To date I have not let therapy or teaching resume and I feel like I have met a little resistance on that from those departments. I think Jude enjoys the interaction in therapy but is the risk of infection from other children worth what Jude "might" learn in therapy? To me the answer is no. Jude is simple and loving. He loves his home, his Futon, his nurses, his family, and to be held. It's honestly OKAY with me that he lives his life happy with us without being pushed. I am really okay with it and I think he is too. Mike and I made a vow at the beginning of this that we would never push Jude to be our version of normal. We felt we overstepped those boundaries with the Baclofen pump. I know we shouldn't feel that way but we do. So we have regrouped, re prioritized, and realized! The only thing that's important is Jude's health and his happiness. We know his time is limited so we have to do what we think is right. We may love you in his life but we have to walk this road ourselves. So from this point forward if Jude isn't meant to go out he won't. If he isn't meant to have visitors he won't and we can only hope that Jude is happy with our decision. I think he is really happy with his daily routines. His grandma Susie still comes over and sings to him on a regular basis. She also prays and recites her rosary to him. You should see the way Jude looks at her it's just precious!
I know people are concerned about how Jude's doing so I just reply, "about the same". I really have no further information than that. He is smiling and loved.