Sorry for not posting before now, been kind of busy. So, we came in Wednesday to a little shocker. The nurse told us that there was a bed available on the TCC and said it was ours if we were ready. Well, obviously we did not want to leave our "family" but we knew this day would come. So, later that morning our new team came over to sign off with our cardiac team about Jenna and her loooooooong history. Dr. Catherine made it very clear about all of Jenna's details of her stay here and said that if we needed anything to call her anytime, she would come by. She also said that she would check on us periodically as well. We were only gone a day and she was already visiting us! So, after taking 3 hours to pack up our room, we gathered our things and moved to our new home. Of course, I cried when we were getting our things together, just because the CICU is our comfort zone, we had been there 13 1/2 weeks, and everyone knows her so well. Moving to a new place is nerve racking because we have to make sure everyone knows her little quirks and what nots to makes her happy. But, we know that they are also still right next door if we need anything. We got very spoilled on the unit and will miss our friends very much. Just remember CICU staff, we love you all more than you will ever know and we THANK each and every one of you for the exceptional care you gave her, especially on that very fateful Friday. It means the world to us. :) Plus moving here, means we are one step closer to home :) We have been trying to do a lot of her care, but still the staff has been right there with us. Here (TCC) we basically take care of her ourselves, which is a huge adjustment. But as a wise nurse told me, they are doing this just to prepare us for home, but yet they are still here if we need them. So, it is a good thing. It will take time to build relationships, but hopefully we will soon enought. Right now I am thinking, oh good ness, we will be doing this alone at home very soon! We will be ok though, we have each other and we have a major support system at home as well.
So, anywhooo....we got settled here and the team decided to do another sleep study on her. Dr. Amin (head of sleep division) wants to make sure 100% that she has the central sleep apnea. When she had the first test a few weeks ago, she was on her pressure support during the test, no rate, which means it was giving her pressure to expand her lungs when she breathed. He said in some children, this support sometimes will cause them to not take a breath, because the brain thinks that the machine is doing it and they do not have to breathe. So, it will show apnea episodes and oxygen levels dropping. So, he said that they do not throw the term around lightly and he wants to be sure she has it. It is possible that her body is just so tired sometimes that she is not strong enough to breathe (weak chest muscles), which if this is the case, then her recovery is all we have to wait for. He said that she may only need some support for 6 months to a year. However, if she does have the central apnea, then he said he cannot say if it will ever go away. So, we are waiting on the results now. They were able to squeeze her in last night for the study at the bedside. It can take a few days for the results to come back. Once we find out the results, we will start asking questions. Her cardiac team feels that the apnea came from when she cardiac arrested and had no oxygen to her brain for 10 minutes. We will see what Dr. Amin says about the results. Again, Justin and I feel that if this is the result of that day, so be it, at least she is here to be with us now. So, she is still vomiting.It seemed to be more yesterday than usual, but they were giving her the wrong formula mix, a mis communication from when she transferred over here. SO, she is getting the right stuff as of yesterday evening. She is still vomiting and they are aware of the amount and that it seems to be more yellow, not formula color. They are watching her for now. Her PT, OT and speech teams followed her here, which she is thrilled, because they like to play! So she has been getting in the floor with them. We made sure that she did quite a bit yesterday so that she would sleep last night for the study, she was on her mist collar for at least 10 hours straight, which is a lot for her, so now she is tired. She is resting for her afternoon nap. Justin and I are trying to become more educated on her equipment, Justin did another trach change yesterday, Go Daddy! Plus he changed the circuit on her vent, I am so proud of him! We are learning on how to give her meds to her via the tube. Which by the way she is doing well with. She does not touch it very much and leaves it alone for the most part. They will start compressing/give large amounts over shorter time and give her breaks, in a few days. They want to make sure she does ok for a bit on continuous after surgery. Plus the cardiac team made them aware that they need to go slow with her. So sometime soon.
So, not much else going on. We hope to have a quiet day, no drama. We have had lots of visitors since we came over, thanks everyone!!!! Jenna is soo happy when she sees her friends. Once we find out the results of her study, we will let you know. Thanks to everyone for the love and support. We are getting more cards from everyone, thanks! Jenna especially loves the ones that sing to her, she is constantly opening them all day long. Her fav is the Bluegrass card from her Aunt Me (aka missy)! THanks again to everyone, miss you all and we will talk soon.
Love, Jenny, Justin, and Jenna