Dear Friends:
Since my last blog, there has been a lot of little things go on. On Saturday, one of the nurses was a little concerned about Emory's temperature. She waited a little while to give him his tylenol in order to see if he temperature would rise and sure enough it did. It has always been and still is a low grade fever, in fact one that they aren't worried about. However, to be on the safe side, they sent blood work off for cultures and started antibiotics. They usually come around 4:00 a.m. to do bloodwork and that was taken Sunday morning. So far, the cultures have not grown anything, so they have stopped the antibiotics because of it giving him some nasty diapers.
He still has some fluid on his lungs that they are watching. They are also trying to wean him off of the oxygen because they want him to go home tomorrow. As one nurse put it, from a surgical standpoint, he is doing fine. Soft Touch Home Health will be bringing us a portable oxygen tank, a large free standing oxygen tank, and a pulsox machine. Hopefully we won't need to use it, but it will be good to have on hand. Our biggest concern is the fluid on his lungs and that we may end up back in the hospital sooner than we want to. He is receiving two different medications through an inhaler as well as respiratory pyhsical therapy several times a day. Those medicines combined with the pyhsical therapy will help loosen up the fluid in his lungs.
They also took his pacing wires out today. They were leaving those in so that if they needed to revive him for any reason, they could send an electrical shock to his heart.....at least, that's my elementary understanding of it.
He also had a consult today by the speech pathologist. At this point, I had not gotten here yet. The speech pathologist fed him with a bottle as part of her consult. Keep in mind that since surgery, Emory has been fed through the NG tube and has not had one reflux or vomitting episode. However, she fed him around 12:45 and by 3:30, he was refluxing and wretching. We called the nurse practitioner and nurse in here and they wanted to say that it couldn't be because of the bottle since there was such a gap in time in between. This is the point where this mama was not a happy camper. I proceeded to let them know that although they had the medical knowledge, I had the mommy knowledge. Of course, I didn't use those exact words, but when you take care of your own child 24/7 and know how he does things and a dr. tries to tell you that "it's not because of the bottle".....I don't think so! So, after 2 reflux episodes and a lot of wretching, Emory finally calmed down and has been fine ever since. We will follow up with his GI dr. on Thursday and put together a game plan. Emory sucks and swallows just fine.....but something happens between the sucking part of the feeding and where it goes in his stomach. That is what we need to figure out. Until then, we are on the feeding tube. My prayer is that we can get all of the feeding issues settled so we can try and catch up to his age.
I think that is about it concerning the medical updates on Emory. The rest of the family is doing fine. After staying in the hospital the first two nights, Claude stayed last night and I'm back up here tonight. I was able to get some rest as well as do some things around the house. My mom has been keeping the older boys during the day and has been a HUGE help. We could not have gotten through this without her help. I know the boys are wearing her out so I'm glad she has a place to retreat to (somewhat) at night and get some rest. She'll probably need to sleep for a week after she leaves here!
Tomorrow two ladies from church are going to be cleaning my house. Thank you Nicole and Kim.....I appreciate your servant's heart more than you will ever know! And, for everyone else who has helped us in ANY way, to say thank you doesn't seem like it's enough. But, please know that we do appreciate every blessing and gift whether it be through meals, gifts, babysitting, monetary gifts, cards in the mail, etc. Well, I must go for now....the nurse is going to show me how to give Emory a bath "after surgery". Until next time.....
Take Care,
Twila
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