Well, we were moved up to the eighth floor yesterday. We were a little concerned, and I guess still are, about these pleural effusions especially in regard to coming up to the floor. The day we got moved up to the floor, Emma had to have her pigtail chest tube removed. It had "de-pigtailed" itself and was not going to be effective anymore at draining her effusions. This would have been a great thing to lose if we didn't have effusions still accumulating. The day they removed it, we asked if they would go ahead and put another pigtail in, but they said they would not. So, you can imagine our hesitation in moving up the eighth floor knowing that we had effusions still forming which caused her to desat (her oxygen concentration in her body get lower), previously when they accumulated before the last pigtail was put in. We also had even more hesitation when they said that they would have to bring her back down to get a new chest tube put in, telling us simply that they, "will not do them on the eighth floor." Despite all the hesitation and concern voiced on our behalf, we were still moved up to the eighth floor. So, as you might imagine, last night was a night filled with little sleep as we were constantly watching her monitors and Emma to make sure she was okay.
Today, she woke up in a good mood at 6am to get her xray. We traveled downstairs in a caravan, with Emma in her wagon watching Baby Einstein and Elmo and his ducks, on our phones, while we pulled her and our nurse and tech led the way. Her xray looked slightly better today which is a good thing. They will keep doing xrays on a daily basis to make sure that the effusions aren't getting out of control. If we can keep them off, that would be a HUGE blessing!!!
Dr. Forbess stopped by this morning and talked with us about Emma. As her road always goes, he was amazed with how well she was doing in spite of all that she has going against her. She is a puzzle to him, to all the team. She has always been a puzzle to them; she probably always will be. He wants what is best for her no matter how many things it takes to get there. A trait that, at times though hard to take, is why we are so blessed to have him as her surgeon. He knows her inside (literally) and out, and it is nice that he does. When all the doctors around us that have had her since the beginning come and sometimes act like they have forgotten who she is and what she is capable of, Dr. Forbess, does not forget, does not act like he "doesn't remember her." His cautious optimism is always apparent. And let me just say, that we are so truly blessed that God has given men like Dr. Forbess unrivaled surgical abilities and immerse intelligence! All that being said, Dr. Forbess did state that he is not real sure about what the next step should be for her future. A hard truth to take when all that you want, all that you are grasping for is some sort of normalcy, some sort of definitive answer. But, it is what it is. As this road continues to be laid, please pray that the decisions that are made are what are in the best interest of Emma, and that God will guide all of our hands!
We have started back working with Emma on all of her therapies as being in the hospital is a definite set back to progress that you make outside of here. She did really well with speech therapy yesterday, so so proud of her!!! Today she has been sitting up quite a lot today, a little on her own, some in her Bumbo, and some with help from her Boppy. She is getting stronger each time she does these things! Besides all the therapies, she has been getting loved on by us and the nursing staff up here. She has also been playing with us, laughing, and of course giving us huge smiles! It warms our hearts when she is so strong and happy despite all she has been through. For a child that could be very angry and standoffish among other things because of her past, she is not, what a blessing!
So all in all, Emma is doing well. We continue to look forward to the day that we can leave here and enjoy more time with her outside of the hospital!
Some specific prayer requests:
1) Pray that Emma's effusions go away.
2) Pray that the doctors in charge of her care and us will make the decisions that are best for Emma long term.
3) Pray for Emma to continue to recover well.
4) Pray for us to have strength that can only come from God, as we continue down this road.
God is good, all the time. And all the time, God is good!