Hey everyone. Sorry for no update yesterday. Ellie and I had a long night Wednesday night/Thursday morning followed by some big excitement yesterday afternoon. I stayed at the hospital Wednesday night with Ellie. She didn't have one of her regular nurses and I always like to be there to keep an eye on her if she doesn't. I am glad I was. Ellie is on a couple different medicines that run continously through her. One is for pain and the other is to sedate her mildly. It's not good if either of these run out. Especially the pain medication. That being said, you can tell where I am going with this. Her pain mediciaton ran out. Completely. Now, once the syringe is out of medicine you still have about an hour till the medication is completely through and out of her line. It was past an hour when the new medicine got put in. This medicine ran out about 2 am. It got started again a little after 3 am. At about 3:40 am, I had a very, very, VERY upset daughter. Now when they started the medicine again they gave her an extra dose or bump you could say to keep her comfortable. This did not work. She was so mad and upset and crying. Her need for oxygen kept going up because she was upset. Her oxygen levels kept going down. All the while I still had a crying mad fussy daughter. And remember I could not pick her up and comfort her. We were not allowed to do that. I finally told the nurse in what I would say was very firm for me (honestly I was pretty, scratch that, VERY upset) that I wanted her to have an extra dose of her medicine. At this point it had been an hour and she had not calmed down at all. The nurse she had tried to explain to me that she could only get those every two hours. I then calmly but sternly told her that she was out of it for an hour right? I want you to call right now and explain that to them. My guess is they will allow it. Sure enough, about 10 minutes later she came back in to give her another extra dose. Finally after about another 30 minutes, she started to calm down and fall to sleep. The charge nurses then came in to visit me and apologize. They were going to do their best to get the problem corrected. I don't think I said this above but the pain medicine had come close to running completely out about three different times before that. Now, the syringe that the medicine is in, is bigger and carries more medicine in. The old syringe did not carry enough medicine to last 24 hours with the continuous feed they give her plus extra doses. Now, the syringe is twice the size and should have enough to last a day and a half plus. These medicines get changed out every 24 hours, so hopefully this will do the trick. I hope so. I don't want to see Ellie upset like that ever again. The other frustrating thing was that her blood gas reading was due at that time. With her being upset, I knew the reading was going to be high. Her awesome respiratory therapist Karen (love her!), waited as long as she could to take it. I have to mention to Karen is so good with Ellie and was right there for both of us when all of this was going on. I was SO thankful for that! With everything she had been through, she was happy with the reading. It was only 67. Karen and I were both pleased with that considering what my poor baby had gone through. After Ellie's long night, she slept for a good long while. She needed it.
Rounds came then to discuss Ellie. They do this everyday. They go over everything medcially from the day before and discuss any further plans. There was a little concern over Ellie's weight gain, so they ordered a chest xray for Friday morning. They talked about surgery plans (I will get to this later) and then her nurse Beth (love her too! Did I mention I think we have the BEST group of nurses and rt's taking care of Ellie) asked the best question of all. "Can mom hold her today?" Surgeons answer, "Uh, yeah."!!!!! The nurses had been pulling for us the past couple of weeks to let us hold her. Beth and I agree she always gets to be there for these moments. The only thing she has missed was her graduation to the big girl bed, but she was right there in the next room when it happened. So, about 3 yesterday, Ellie was up out of the bed and back in mommy's arms. Right where she belongs and right where I wanted her. We sat there together till almost 9 that night. You could probably imagine I didn't want to let her go. So special. It's like we are having firsts all over again.
As of this morning, Ellie is doing ok. Her need for oxygen has been up, which is concerning to everybody. The chest xray showed increased fluid on her lungs. This could explain the need for more oxygen. So they increased her diaretics to get rid of that fluid. The nurse said she has had several dirty diapers this morning, so hopfully these medicines are working. This is just a part of all the things the doctors have to monitor with Ellie. She is a very complicated, fragile case. You get one thing under control and another thing might go wrong. It's frustrating. But, Matt and I just keep trusting God to work through these doctors to take care of our little girl.
We also heard yesterday that there is a pretty major surgery in the works for Ellie. I say that cautiously, because anything can change from day to day, sometimes hour to hour. I heard a tentative plan that they are going to do something called pulmonary banding, close her PDA and insert the chest expander. They want to do this all at once so Ellie doesn't have to continue to be cut on and opened up. However, we have heard that when this is completed, we should expect to see a very sick Ellie. Sicker than she is now. It will be a very difficult surgery for her to go through. It's one though that she needs ultimately to make her better. Once I know the details of everything, I will go in to a little more depth of what each thing means. I was told it could happen in the next couple of weeks. That too, can always change. Nothing is ever set in stone for our little girl.
Ok, I think that keeps you guys updated on everything thus far. Sorry again for not updating sooner. It's been an exciting week for us in a lot of ways. There has been a lot of changes with Ellie and we have just kind of been taking her in, learning her all over again. WE PRAISE GOD FOR ALL OF THE GOOD THINGS HE HAS AND IS DOING IN OUR LITTLE GIRLS LIFE. Without him, none of this would be possible.
I will update you all again soon! Thanks to all of you who love and support us so much. We have been very blessed with so much love and prayers from so many. It's like we have a huge big family out there. That means the world to Matt and I.
Love,
Ellie's Mommy
