Trudging along....and making progress :)

Hello everyone,

Sorry for just now posting, again been a little busy trying to get prepared to go home. So, we received the results from her sleep study and GOOD NEWS! She does not have central sleep apnea, her apnea episodes have nothing to do with her brain activity! She is having the episodes due to her chest muscles not being strong enough and her diaphragm issues. So, this is great because it means once she is strong enough then she will be able to come off of the ventilator support, and eventually get the trach out. We were so thrilled it was not the brain related issue, because typically that is more involved and possible never goes away. So yay! They gave us the guideline that once she is off vent support (6 months to a year) then it will be less than a year from that the trach will come out. So even though it is a while, at least it is not forever.

She had a good weekend, no major issues. Her vomiting has slowed down a bit, knock on wood. She has just been doing it when she first wakes up in the morning the past few days. So, GI was consulted again today. They came in and discussed the situation and stated that some kids who are continuously fed have a tendency to build air in their stomach when laying for a period of time (like sleeping) and then when they sit up they end up getting sick. So, the recommendation will be to "vent" her g tube, which is where they just pull air out of her stomach periodically in the night. So, if this does not help, then they are going to discuss doing further tests. Hopefully it will.

She is still coming off of her methadone and ativan taper for her withdrawl. She has her good and bad days with this. We should be off of it within the week so we will see how she does coming down on it over the next few days. On a happy note, she was able to try food for the first time today since July! The speech therapist gave her pudding first, which she did great (6+ bites) and she tried water and apple juice and fruit loops. Jenna was so eager to eat, which is great for her! So, they are having the docs order a swallowing test to make sure that she does not have any issues with different textures and if she does well, then they will determine what she can eat at that point. They suctioned her after each type of food and nothing came out from her trach, which is great, no aspiration in to her lungs. She was pretty upset when we were done, because she wanted more, but the therapist has to wait, to make sure what the test will say. Hopefully the test will be this week sometime. Yesterday we spoke with the dietician about her feeds being boloused into larger amounts. She said that she had been made aware from cardiac to move slow with her feeds. So, the plan right now is to give her a one hour break a day of no feeds and her rate was increased to 42/hr instead of 40. She is only getting 6 more calories a day from this, so it is really no different from before. She is doing great so far with it and tomorrow we gave a larger window, we will see how she does. We feel that she will benefit from the breaks and plus it gives her the opportunity to be more mobile :) So, maybe it will help with her vomiting too. Once she starts eating by mouth they will start calorie counting the food, which is what we will do at home and then what the difference is from her goal amount, we will give via feeds. So, more organization to do. SHeewww...

She has been loving playing with her OT and PT and speech teams. She has already made an impression on the staff here, they love her. Everyone stops to look at her, of course. They all want to meet her, the famous miss Jenna. She is doing so well signing now, she even told me that she wanted to get in the floor and play today, I was so proud of her! I am thrilled that she is doing so well at telling us what she wants. She is signing eat when speech comes in. She tells everyone to sit and play with her. She is doing great! We are improving!

We are trying to get daddy signed off on his education right now, he leaves to go back to work on Sunday :( We will miss is so much, but as you all know, money does not grow on trees and bills have to be paid. He hates to leave us and we do too, but we will be home soon. He is doing great with the education and we are doing CPR training tomorrow and he does his 24 hour stay then too, good luck daddy! We made her portable yesterday in the wagon, which was super difficult and exhausting, but we did it! This is all so new for us. But we can do it, we have made it this far.

We had a care conference today with her team about the plans for her going home. They are arranging nursing care and trying to get set up for someone to help us in the home with her. Hopefully there are some peds nurses out there that want to help us! We are trying to get approved for the medical waiver right now to help pay for the care and with her special supplies. Hopefully we will not have an issue since she is medically disabled now, just a matter of getting a hold of someone. The dietician is continuing to work with us and will make a plan for her once we go home on how to feed her daily. The social worker is helping us now about trying to get the insurance coverage on everything, hopefully they would rather pay for things with us at home and not the hospital. But we are thankful since her stay has been well over 1.5 million in cost and they have paid it all, we are blessed. The care manager said that she told the nursing group that we should be ready to go home in 2-4 weeks, probably closer to 4. But at least we will be home before Christmas! So much to do before then, lots of changes to move around at home, but we will manage. They are not changing her vent settings now, but we will come back over time for bronchs and check ups, not sure how often at this point.

So, she has been very tired today, not sure why. We think that she is still adjusting to her new home. She has had a little trouble sleeping and napping. Hopefully she will be better soon. She has just had more aggitation today and yesterday. We put her to bed early and she actually fell asleep. So we are going to head out of here early and grab dinner. I have taken pics of her over the past few days and I will post them soon. She is actually smiling for the camara now, it is so cute! We will keep you posted on her status. Thanks to everyone for the prayers, they mean so much to us. We miss you all and hope to be home soon!

Love, Jenny Justin and Jenna