Home and back to normalcy.....

Sorry everyone for not posting before today. After Tuesday Jenna decided to take her time waking up. On Tuesday evening she continued to rest, while we tried to get the right story from someone regarding her cap trial. Her lung doctor had told us one story, while the ENT team came in Tuesday evening and told us another, so after much frustration, we spoke with the cardiac team who decided to put a stop to the miscommunication and talk with her ENT surgeon. Finally, the answer was to do the cap trial(cover her trach with a cap, which allows her to only breathe through her nose and mouth, getting use to being like herself again) a few hours Wednesday and as long as she tolerates, we can go home. She has to do it while awake and then we will return in June for her scope, night time trials and then take the trach out!! Whoooo-hooo!!! So Wednesday morning, Jenna woke up a little, but was still tired. We had to change out the type of trachs to one without a cuff for the trial, but she was not up to it. We had to go downstairs for her lung test that morning, which we had to re-do in the afternoon because she was given the wrong medication-nice. Luckily the dosing was safe, she had no major effects, just a little vomiting-which we were not sure if it was related to the anesthesia coming out or lack of food or what. Most of the day she continued have some issues maintaining her sats, which we were a little concerned about. We were not sure if she was just really tired or starting to get sick. Because she was having the trial, we were not allowed to put oxygen on her to maintain the sats because she was to tolerate without any assistance. Obviously if she needed it for health reasons we would give it to her, but we were just seeing if she really needed it or to kind of just let her mellow out. When Jenna is realllllly tired, she will continuously drop in her numbers so we did not want to set her up to fail the trial, we wanted her to be rested and ready. We went most of the day before trying the trial, she finally decided to wake up at 3pm. We took her downstairs for the lung scan again, which went fine this time. We made it back upstairs and she seemed to be feeling better, so we changed her trach and decided to try the trial. We had already discussed with her attending doctor, Dr. Catherine about her situation earlier that afternoon. We decided to not push her, if she was not up to it, we would wait until Thursday morning to do the trial and then go home. She said that we would just stay another night on the unit, it was no problem and then go home the next day. Since we have such a long drive, she did not want us have to go home late at night so we just decided to stay. So, around 5 pm Wednesday we began the trial with her trach. Finally that evening, she also decided to eat for the first time since Monday. We were thrilled. We also discussed with her dietician Megan about her status of her G tube feedings. She provided copies to us of Jenna's BMI, growth and heigth charts. She felt that Jenna had been doing very well increasing in her weight and height, so she recommended that we lower her feeds to see if she would start to eat more. We would trial for 2 weeks and if she maintained then we would drop a little more for two more weeks and then call her to see about the next step. So, we continued the cap trial through Wednesday evening and Thursday morning. When we came in that morning, Jenna was back to herself. We were so happy that she had turned around. It was nice for everyone to see her the way she is for us at home. They could not believe how much she talked and was becoming a little girl. Of course, one of her fav nurses did her infamous hairstyle before we left-braided pigtails. She was so cute. I promise to post pics later. So, we had the General Surgery practitioner come by and change out her G-tube. That was fun, Jenna was a little irritated for a bit, but got over it. Once finished, we were ready to be discharged. So we ran over to the house to check out, while the staff played with Jenna. When we returned she was being pushed around in her chair and apparently had chased everyone around the unit while laughing hysterically. It was a beautiful day, so we decided to take advantage and go to the zoo before heading home. The new babies were being premiered. Jenna saw the giraffe(as a baby it is 6 feet tall already!) and she loved it. She enjoyed seeing all the animals, she was tired and made us carry her most of the time, but still enjoyed it. Once we made it back to the car, we no more and had her in her seat and she was passed out. She slept all the way home and still slept all night last night for 11 hours. We spent most of today just resting and unpacking. Daddy had to go back to work :( Still have lots to unpack, as usual. We are just trying to adjust "prentending" to not have a trach. We are having to change her breathing treatment and puffer medication, to be taken through her mouth now, which she is not the biggest fan of, but she is adjusting. She is all about routines and we are just stopping one and beginning a new one. She will get there, all in due time. We never thought the day of no trach would come, so we are just thrilled there is an end in sight. One step closer to getting to go on that family vacation!

So, our agenda for the next week is having her birthday party. We had to postpone it before because she was sick. So we are having it next weekend. Then, she is going to be a flowergirl in Uncle CJ's wedding-her dress is sooooo cute!!! Then we will be returning to have her trach out at the end of June-I can't wait!! We just can't believe it. We are happy that she did well through this hospital stay and no issues, just Jenna taking her time recovering. Her doctor feels that since she is getting older she may be just adjusting to coming out of anesthesia and it make take a little longer. So we will see. We want to thank everyone for the thoughts, support and prayers. I hope to get some pics on here soon of her in the last few months, she has changed so much. I am so bad about keeping this updated, life just moves to fast for me. :) Thanks again to everyone for the support!

Love, Jenny Justin and Jenna