Surgery Plan

Yesterday Heather and I spent the day with Ella. She was awake again for the entire day and let me just point out, babies are not meant to be awake ALL DAY!! She was what one would call....sensitive. We held her, put her in a bouncy, bounced her, and walked her (as much as one can do while hooked up to monitors in a 6 foot area). Finally towards the end of the day, she feel asleep. Otherwise, that was all she did yesterday. Nothing to wild and exciting.

Today was the day that Dr. Josh was going to present her to the cardiac team for surgery. We have done all of the recommendations that they wanted to try before surgery. She has made some awesome improvements with the medications, but nothing that I would feel comfortable with having her home. She does not breathe nearly as hard or fast as she did when we moved her here, BUT she still is breathing very quickly. She still has elevated blood pressures, but for her, it is ok. The team will discuss if they want to give her another week on the meds and then discuss her at a later time, if she is stable enough to go home and wait for surgery, or if we need to go on to surgery. No matter what, she will need to have surgery to repair the hole.

The plan was, at 7am this Friday morning, Dr. Josh is going to take all of the information that has been gathered on Ella and take it to the team. From there they will determine whether she is a good candidate for surgery and if they think her little body is able to handle it. He told me that hopefully by rounds he would be able to tell me whether he heard them or not. He said "hopefully I will be able to tell you if they nodded their heads showing me they listened." I might point out that he has a good sense of humor, which I REALLY appreciate!!

Rounds are at 9am, so Heather and I got around and ready to head to the hospital. At 8:30am, my cell rang and I noticed it was the hospital. Immediately, my panic mode kicked in. It was the cardiac nurse practitioner. The team felt that Ella is a great candidate for surgery. This is bittersweet news as I hate the idea of my baby girl having open heart surgery, but she needs it to get home and live a healthy life. But in all reality, this is some good news.

We got to the hospital and talked with Dr. Josh, and he is very relieved to have her going to surgery. Basically she is a baby that needs to get fixed up and sent home. Like he told me, he cannot do much more for her other than do what the cardiologist tell him, keep her healthy, and put her on a monitor. The next step for Ella is to wait for surgery. I know everyone is anxiously waiting to hear the date.  From what I understand, she could easily be bumped due to a trauma surgery that comes in. Otherwise, they are hoping that sometime next week she can have her surgery. They will give me a 48 hour notice as to when she has surgery. So now we just patiently wait and enjoy our time with her until then.

(here is my attempt at the prayer request. Heather is so much better at this than I am!0
Prayer Request
Please pray that Ella is able to get into surgery this week and that she continues to stay stable and healthy. I also ask that you pray that there are not many trauma cases, not because it continues to hold Ella's spot, but for the child/ren that would need emergency surgery. I also ask that you pray for the other children that are at Children's Mercy.