April 12, 2012

Smooth sailing.....

Hey everyone-
Just wanted to give a quick update on how little miss is doing. She continued to do well through yesterday. She was able to completely wean from the oxygen and tolerated it well. She maintained her sats all day, mostly in the low 90s, which is great for her. They did another chest xray and it showed improvement, not perfect but better. Just to be on the safe side they decided to consult with Dr. Boesh her pulmonologist since she had coughed up that large mucous plug. They wanted to make sure that he did not want to do any intervention, they were concerned she may be developing a certain bronchitis issue that happens in some cardiac disease kids. He responded that unless she did it again, he was fine with the situation. Which was fine with us, because she had improved so much since it happened. They also decided to do an echo to check her heart function and make sure there were no changes. They noted that she may have a very small opening in the top of the heart, but are not 100% certain, because it was not noted in her cath last week. Also her right heart pressures had increased from before, but they checked with Dr. Beekman, but he was ok with the change. However, he did want to do another lung scan to check the blood flow to her lungs. We did that test today and are hoping to get the results tomorrow. When we arrived today, she had a great night and was so excited to see us. They rounded and said she has continued to do well. Her chest xray was almost back to her baseline, so they had decided to changed her medications back to her home regiman. They adjusted her vest therapies from every 2 hours to three times daily while awake and twice a night. They transferred her to stepdown to just to watch her for one more day to see if she would do well with the adjust of her therapies. They felt it was best to do so since we live 3 hours away and plus they don't exactly "trust" lil miss, so to be safe we stayed. So we moved over there earlier this morning and once she arrived there she was on the loose. Most of the day she was unhooked because she wanted to ride around in her "car" on the unit. We also went to the playroom for a while, which she loved! She has been going crazy in her room, even to the point of squeling her head off, so they just want to make her happy. We enjoyed getting to go over there and she played with everything. She is so silly, she came back and ran in and out of the nurse's station, laughing continuously. I was so happy to watch her feeling better. We hope it continues, she is still tired, but so much better. We talked to the stepdown doctors late this afternoon and he seemed to think she was doing very well and hopes to have us discharged early tomorrow so we can get home early due to our long drive.
So we have pretty much been relaxing and just hoping that she maintains her status. She has done great and her saturation levels are fine, actually a little better than normal. Hopefully we are on the mend. I want to say a quick thanks to Cordell, Jenna's buddy from home(who also goes to Cincinnati for treatment) who brought her balloons for her birthday, it was such a nice gesture. Also thanks to Patty, another heart mama who sent a prize to Jenna while we have been here, such a nice thought. We can't thank everyone enough for the support, all the love thoughts and prayers and helped babygirl get through this week. I will keep everyone posted on our homebound status and thanks again. We love you all!!!


  1. So happy to hear she us getting stronger and feeling better. We will continue all of our prayers. Love you guys.

    Your friends,
    Lori, Justin, and Tristan

  2. Great news.....so glad to hear little miss Jenna is doing better! Our thoughts and prayers continue! Let us know if you need anything ....Brent offered to cut your grass at home.

    Hugs and kisses
    Lisa, Brent, and boys