Just wanted to give an update on how Jenna has been doing. Things have gone well the past few days. Nonny finished up her teaching with us last Thursday, it was great that she was able to come and learn all the in's and out's of Jenna's care now. Meme, Pawpaw and Aunt Missy were able to come up on Thanksgiving to be with me, since Justin was at home. It was great that they were able to come, we actually found a restaurant available that was serving Thanksgiving dinner and not booked! I brought dinner back to Jenna, which she was not to sure of. She tried the turkey, but was really interested in mommy's pumpkin pie! So, I let her try it. She is such a sweet tooth. :) As long as she eats. On Friday, the family went home, but said, "don't worry, you will be home soon." I told myself that over and over. So, I started my 24 hour stay with babygirl that evening and went through to Saturday. Everything went off without a hitch, I was so happy that I felt like I was able to handle it. Don't get me wrong, I am still nervous, scared, excited etc. about going home, but I felt better after it was over. Saturday Justin was to be coming in late that evening, he was having to work late and would not be in until close to 11pm. But to mine and Jenna's surprise he walked into the room at 5pm! I was so excited, I cried and just hugged him, so happy that he was there. Even though we had been together all those weeks, I still missed him, as well as babygirl. She was so excited that he was there, I wish I would have been prepared with a camara. It was priceless. She wanted Daddy to play and pick her up and hold her. I loved it. That evening with trach care, she was much more tolerable than usual, she is so used to Justin and I doing everything with her care and now that he was back, she was fine and has been since. So, I felt better knowing how things may be once we get home, we work well together as a team.
So, like I said before, she has been doing well. She has only vomited twice in a week, one of which was induced on her own from drinking her juice to fast. Silly girl. They are very happy that she has decreased with this tremendously. Yay! The medicine is working still! We will probably be on this a couple of months per GI, so hopeful things will start to improve by then. We are supposed to see Dr. Putnam(GI doc) a month after we discharge, but that has not been scheduled yet. In reference to her overnight feeds, we attempted to just feed her a certain amount overnight and leave the rest to her during the day. We gave it through the weekend, and unfortunately we do not think that Jenna is able to hold her end of the deal right now. Don't get me wrong, she is eating, which is great, but just not enough. She is still not strong enough yet, but is making improvements every day. We are trying to give her old staples like McDOnald's KFC, hot dogs, you name it, just so she will eat. So, we have increased the amount that she gets tonight, still giving her a large break through the day and we will see how that goes. Her weight has gone down since we came over to this unit, we were at 12.7 kg, down to 12kg and now 11.9kg. So since we are not at least maintaining we have to go back up. We will have to adjust her feeds at night as she gets stronger, depending on what she takes through the day. This should be fun, calorie counting, yay :( But we will manage. We always do.
So, right now the big holding us here is nursing care at home. We were blessed to find a great group (not the same from before-long story) who is able to provide us with nurses. Right now we have got coverage for a few days a week and then almost all nights through the week. We qualify for 16 hours a day, since she is considered medically fragile. So, hopefully when they call the insurance tomorrow for authorization, we can be covered. I spoke with the group today and he said that if approved quickly, they can be ready for us by the end of the week!!!!!! Yes, it will be a huge adjustment having someone in the home, but at least they will be there to help us. We can use everything that we can get. This is huge transition for us, all new, and I hope that it will go partially smooth. We will see.
So, in rounds this am they said that they were wrapping up a few loose ends about scheduling her cath, meds, etc. The nurse practitioner stopped by and asked us when we would like to go home. IF everything is great and seems to be in place with Jenna and nursing care, then we would like to be home by the end of the week. We were told they do not discharge on Fridays, so Thursday. She said if needed, they will discharge us Friday. So, yeah, you read right, we could be home as early as the end of the week!!!!!!!! This is again, so exciting, but scary. I cannot believe that we may be out of here by the end of the week and home! Crazy since we have been here 18 weeks! We have met so many wonderful people along the way and again, could not thank each and every one of them enough for all that they have done for us, especially Jenna. We will miss you all terribly CICU crew, but remember, we will be back in the spring, just not as long this time. We have laughed so much with you all, cried, broke down, but yet you all have still been there for us. Believe us, there is a lot to be said about you all. We love and will miss you all sooooo much.
So, today has been well. Everyone is stopping by to say goodbyes to Miss Jenna and us. It is easier since we are not on the unit anymore, but yet still hard. Bittersweet. Jenna discovered her voice this evening via her speaking valve. It was so funny, she decided to just start making noised continuously at herself, just like when she was a baby. It is so great to hear. She is laughing at the tv now and climbing up and down the bed. She even was standing holding onto the rocker when we came in this morning with PT. I am so proud of her! Babysteps! Justin had her really worked up earlier, making her laugh, it was so wonderful to hear. So now she has finally fallen asleep. So, we are going to head on over to the house.
We will keep everyone posted on our ETA back to West Virginia. Previous to this post, note that Aunt Missy has posted a special note on meals for us. Anyone who would like to participate, we would appreciate it very much, thank you in advance. I want to give a shout out to a few special people recently helping around the house, Wendi and Aunt Missy one weekend for going through Jenna's clothes, various items and preparing for Justin to come home. Then this past weekend for Marci-aka steam cleaning machine and Deb-aka super closet organizer for coming in and cleaning Jenna's room and our carpets. All of you are wonderful and we could not ask for better people in our lives and helping us out! Love you all!!
Thanks again for all of the love and support to us, especially Jenna. Love and miss you all. Thanks again for the support.
Love, Jenny Justin and Jenna