All the sass

Laila had a good day today! She ran a low fever and was flushed for a little of the day but she has been fine for several hours now. She played a lot today writing in her notebook and playing with a doll they gave her. She “writes” her med list and then teases me that she is ordering meds that she is allergic to. Seriously. She giggles and says “we should give her the cefepime!” And then I say “NO! She’s allergic!!” And she LAUGHS and laughs and then proceeds to tell me she’s going to give “her” dilaudid and marcodantin which she is also allergic to. Her medical knowledge truly amazes me. She wants a syringe and extension tubing to feed her baby doll (because of course they are tube fed, not bottle fed) and then she asks me to make sure it’s unclamped! She’s so stinkin’ smart…..

And sassy!! She gave me a hard time all day today just teasing me. At one point I was laying in her bed with her and she looked at me and said “who wants their daddy to lay with her?!? ME!!!” and proceeds to raise her hand high in the air and then just stares at me grinning. We were watching a show with Keiffer Sutherland and his voice drives me crazy with the raspy whisper so I was imitating him to Jack and Laila says “oh mom, you sound like a frog!” But seriously, does his voice bug anyone else?!?! That raspy whisper is like the annoying little girl from Mrs. Doubtfire! Drives me nuts! But I also may just have too much time on my hands ;)

All the playing and sassing tuckered her out tonight because I looked over and saw this
Mid baby tube feeding she just fell asleep. We’ve been concerned with her lack of energy but she was really good all day so I think this was just normal nighttime exhaustion and like I explained earlier, not much sleep last night.

We did get about a ten minute quick teaching today on emergency central line care so that was helpful. They also copied some instruction manuals and gave them to me to read.

It did turn out that there was blood in her ostomy and they couldn’t explain why but it seems better now. Maybe something with the intubation during surgery got irritated or something. I’m glad it’s gone but wish I knew what caused it.

They changed a few things in her TPN formula that they hung tonight and changed the rate for it to run over 20 hours this time instead of 24. Sounds like they may even try to increase the rate even more tomorrow night and try to get us to 16 hours. That would be great but we’ll see how her body handles it.

We will be here until at least Monday they say. It will be hard to get the Med supply company out to our house on a Sunday night to deliver everything we need and train us. They also want us to talk to some Gtube nurses to troubleshoot her J tube clogging so much. We’ve tried every trick they told us but still not going great. We are still using it to give her meds and having a lot of problems. The floor nurse was a little beside herself today because it clogged and she couldn’t get it to work. I was glad she got to see it twice today for herself and it’s not just me.

This morning I sat in my chair with a new coffee mug a dear friend got me for this trip to the hospital. I looked up and this was my view

The serenity prayer is dear to me and my journey with raising my kids and especially Laila right now. Celebrate Recovery has helped me learn God’s word in a way that helps me let go of the anxiety and sometimes anger that goes along with this stuff. This is tough but God is bigger. I don’t have to be perfect or pretend I have it all together. Sometimes God does give me more than I can handle so that I can call on the only way out, Him. I can lean on Him for all I need. I can look over my coffee mug and see my precious daughter laying in a bed and choose to see her silliness and joy rather than the fact that she has five tubes under that hospital gown doing things for her that her own body should be doing. I can accept that I can’t change her circumstances more than just doing each next right thing in front of us but I can change my attitude and I can choose to see joy in the midst of sorrow.

I will accept the things I cannot change and have courage to change the things I can. Living one day at a time, enjoying one moment at a time. Accepting hardship as a pathway to peace.

2 Corinthians 5:7 For we live by faith, not by sight.