Extubation.......again

They extubated Joshua early this afternoon. He was supposed to go onto bi-pap but he threw a major fit so they decided to take it off and see how he did without it. I think the cool blasts of air bother his gums. He is teething....such an endless process! :-( He seems to be doing ok with just being on the nasal cannula. His morning chest xray seemed to me to look a little better.
Joshua's personal battle seems to be sleep. He would NOT sleep today. No naps....mixed with a teething one year old (regardless of the other obvious issues) is NOT a good combination. UGH. Poor little dude. He seems to really like little mouth sponges dipped in ice. Joanna took care of him today and was kind enough to take over with the sponges so I could go to dinner. Nothing like a couple hours of swapping mouth sticks to make your work day better. :) We gave him some extra meds to help him relax and he just fights them. I had to sneak out at 11 tonight so that I could get some work done at the house. He was still awake.
I have had a lot of questions about the rejection. I still have no answers. The echo today was the same as the others. He is still having diastolic dysfunction which can be a sign of rejection but it has been present since the transplant. It was mentioned today that maybe Joshua will have another trip to the cath lab for another biopsy and a possible CT scan. Right now it is hard to tell exactly what the problem is. If it is rejection the next step of rejection therapy is pretty dangerous. It would require wiping out all of this T cells. He would have no defense to fight infections or sickness. This could become a major issue because we still don't know if the Serratia is totally gone. He also has a lot of open wounds still. They are being very cautious in the decisions on how to treat him.
I did get to hold him tonight. It was nice but he was so tired he just cried. The way he melded into me when I first picked him was very comforting to me. There are days that I just wish holding him and rocking would just make him all better. He makes raising the other kids look like a walk in the park! It was so much simpler and I didn't even know it!
Friend updates:
I was thrilled today to get a visit from Mimi and Mia today! I have followed Mia's blog for quite sometime but today was the first day that I met her. She is AWESOME! I can't believe how great she looks. I sat with her for a few minutes and we played peek a boo. She laughed and laughed...it was very good for my heart! Thanks Mimi for coming by and sharing your sweet baby! (And for the treats.)
I saw Devon (Karlee's mom) yesterday. They are on the floor and prepping to get out maybe next week! I am so happy that she is doing well, but I miss sharing a room with them.
Gracie had her Glenn recently. I didn't get to see Jen and Paul too much. They came into the ICU at a point that I was in a personal "funk" (I am not so sure that I am out of it either...UGH). So I was very sad to have missed them. I talked to Jen briefly and she said that Gracie was having the Glenn headaches but seemed to be doing good. Please be in prayer for Gracie that she starts to feel better quickly so she can get on home. (Jen, Paul and Gracie~ Thank you for the gifts! We have enjoyed the first CD SO much. I am sure that the nurses think that I am nuts to hum and sing as often as I do. I try not to belt out the reworked tune of Little Liza Jane....Joshua James works great!...they would probably think I was out of my mind. I can't wait to listen to these ones with Joshua!)
Today was Daniel's First Birthday! I talked to Heather this afternoon and she said that he is doing really well! He is getting many of his lines out the next couple days and they are still working on getting him off the vent.
And last but not least...Miss Shayla. She is doing pretty well. She had a couple trips to get checked out but seems to be doing well. She is really getting interactive! She has smiled at me and is trying SO hard to talk. It cracks me up. She did wave at me last night too. (I don't know if it was by accident or not but I am claiming it!) I also broke my "rule" last night. I actually cooked dinner! I made enchilada's for Jamie and I. They didn't turn out as good as I would have liked but they were ok. (Mike is too darn picky so Jamie made him separate ones. SPOILED!) It was so nice to actually cook something. I may have to do it when Trevor gets here. He loves to cook so I am sure that he would like to help me.
Oh~ one more thing. I have been getting cards from a church body in Kentucky! To the members of Liberty Point Baptist Church.....Thank you for your prayers! It is so overwhelming to me to know that the story of this little boy has reached people all over our country.
Thank you to ALL of you who have left messages for us and all of you who pray for Joshua and our family! It has been quite a year. I had hoped that the closer we got to home the better it would be. I have not experienced that. This last couple weeks has really worn on me. The situation with Joshua is not all that I have my plate. I have been trying really hard to not let 'life' get me down but feel like I am slipping in my battle. My motto is to not worry about the things that I cannot change. That works for me most of the time. I don't know what is in store for me in the months to come but I know that change is evident. Please, if you wouldn't mind, I could use a little extra prayer for strength right now.
Good night my friends!
Leah