Just wanted to post on how babygirl has been doing since we made it home. We came home on Saturday the 13th and she was doing very well and still is. Within a couple of days she was off her oxygen, which was great! She has been maintaining her baseline sats of high 80s low 90s and she is still on her regular ventilator settings while sleeping. For a few nights her oxygen levels would dip real quick down into the 70s and then back up quite a bit, but she has settled out now. This is Jenna's way of telling us "hey!! my body is really tired!" Her side was sore, so we continued her pain regimen, but within days she was only down to taking Tylenol on occasion. Now she is not taking anything at all besides her daily medications. Her incision site is looking great, no infections or redness, which is good. Once we made it home, she was so much happier. In the hospital she did not eat very well and by Sunday she was back to her normal habits. Also, she was back to her old ways of climbing everywhere and getting into everything. We just have to be careful not to lift under her arms for 8 weeks, which is hard to remember, but she is quick to let you know that it does not feel right. She was able to adjust back to doing her regular daily regimen very well, vest therapies, medications, etc. Also, since we made it home she has just opened right up in regards to her speech. She is jabbering, trying to tell us what is on tv, what she wants, what comes next with her daily things, etc. It is wonderful, we are so thrilled that she is just moving along. It is hard to believe that she just had hearts surgery two weeks ago!!! She is such a ROCKSTAR!!!
We did not have to follow-up with her pediatrician due to the fact that so many viruses and illnesses are going around, she does not want to subject her by bringing her in the office. So as long as she is doing well, no visits. We are going to see her cardiologist here next week, Dr. Heydarian. Hopefully her visit will go well and everything checks out. I contacted her lung doctor in Cincinnati, Dr Boesch today. I spoke with his nurse, because he is currently out of the country. I wanted to just touch base about when we would resume the process of weaning her on the ventilator and eventually getting the trach out. She took information and once she hears from him then she will contact me back. Her heart doctors want her off of the vent and the trach out asap, but it is not up to them ultimately. Hopefully we will be able to start the process again soon, we will see. I received a call last week from her cardiologist in Cincinnati, Dr. Beekman. They have decided to go ahead and schedule her next heart cath since this surgery was successful, they want to see how she is progressing in six months. So this is currently scheduled for May 3. We will hear more information regarding it at a later time.
The only issue that she seemed to have since we came home is adjusting to her sleep routine. There for 4-5 nights it was a little rough, she would not sleep, up and down or she would make someone be by her bed all night. Needless to say it was very exhausting and mommy and daddy got very little sleep during that time. She is much better now, back to her one time a night waking up.
So, we are thrilled with her progress at this point. I cannot say it enough, it is hard to believe that she just had heart surgery two weeks ago and she is such a ROCKSTAR!! Tonight she was so happy, jumping up and down on the bed, laughing and playing, it was wonderful to see. It just warms my heart and thrills me inside to see her doing so well. She caught a break and we hope it stays this way for awhile. I just tell everyone that Jenna heard us talking and planning for her to stay in Cincy for a while and she of course decided to do the opposite, COME HOME! It is always her way, no one elses. Plus I think that she decided that holiday food is much better homemade and not from the hospital-haha. We would like to thank everyone so much, I don't think that I can express it enough, how grateful we are for the support that we have received during this whole process. It means soooooo much to us that everyone supports our little girl and prays for her and us every day. We truly believe that she has only made it this far due to her determination and the power of prayer. So THANK YOU from the bottom of our hearts. I will try to keep everyone posted on her status more often then I have in the past. I just tend to lose track of time and forget that Jenna has such a large fan club. Thanks again for everything and I will post again soon.
Love you all,
Jenny, Justin and Jenna