We have just returned to the RMH after a long day of being with Lily at the hospital. As Todd mentioned earlier, she had a rough morning today. She slept fairly well, but early this morning her oxygen level dropped and she had to be put on oxygen. She also threw up quite a bit. The team has stopped her formula temporarily and she is only on IV fluids for now until they figure out what is going on. She was pretty sleepy for most of the morning, though.
She also hasn't had a BM (sorry, I know this is TMI) since before the surgery, so the team has been taking steps to make that happen. She was given a suppository (which didn't work) and then an enema (which worked–but only a little bit). They are contemplating what to do if this does not happen soon.
We got her up in her chair again for about three hours today and she did great! This was the first time I had seen her in her chair since her surgery and I was amazed at how TALL she looks now!! I just couldn't believe how much straighter and taller she is. She looked WONDERFUL!! She tolerated the chair very well until she got tired and then we put her back in bed. Being upright as much as she will tolerate is the best thing for her right now. This helps her lung and intestinal functions, and will help start to increase her stamina.
The team did x-rays of her stomach and chest this morning. They wanted to see if she had aspirated anything since she had vomited this morning. They also wanted to check her tummy to see if there was any obstruction happening which would cause her not to be able to “go.” Her chest x-ray showed a little something on it, but they are not too concerned about it because she is already being treated with broad-spectrum anti-biotics and that should take care of it. The only thing they found on the tummy x-ray was that part of her bowel is “asleep” at the moment. They used a medical term for it which I can't rememeber right now. They said this happens sometimes after a major surgery and that time is the only thing that will “wake it back up” again. Meanwhile, they will still try methods to help her “go.” Poor baby. I could tell that this was bothering her today, but nothing seemed to help. Hopefully we will have some better news tomorrow morning.
I just want to give a shout out to our awesome nursing team here! They have all been fantastic, but today's nurse, Emily, was amazing! She was so proactive in communicating with us everything that was going on “behind the scenes” with Lily's team, when they thought they would have answers about things, why they didn't have answers yet, and making sure that all the tests, meds, and procedures she wanted to have done today were DONE. She was such an advocate for Lily today for so many things. We couldn't thank her enough for being so proactive and detailed! Thank you, Emily!!
Acutally, Lily's whole team has been pretty awesome. We are truly in the best possible hands here. And the building is phenomenal! All private rooms–and it is so quiet on Lily's floor. You hardly even hear any of the other patients on her hall. It is a beautiful, sparkling building and is about as comfortable as you can get in a children's hospital.
When we left Lily tonight, she was just about asleep. I am praying for a peaceful night's sleep for her and for her tummy issues to be resolved soon! She is such a fighter and so tough, but I know that she gets tired and can't be strong all the time. I told her I would be strong for her if she can't be.
Fortunately, there were leftovers from tonight's dinner at the RMH, so Todd and I ate that for dinner when we returned. It is so nice to have homemade meals here instead of eating out. We are so grateful for the groups that volunteer their time to make meals here.
We are going to try to get some sleep ourselves. Thank you all for your continued support and prayers.
Melissa, Todd, and Lily