Well, sorry for that grumpy post last evening. I am so thankful we did not move to the PICU. We had a really good night. Daniel was awake for a while around 3-4 a.m., and he contentedly played games and watched Finding Dory on the touch-screen TV he is so happy to have. Then he went back to sleep and slept until after 8 this morning, so we both had good sleep last night. David came in to see us for a while this morning and I got a shower, so things are looking up.

The itching got ahead of the medication this morning and while I was showering I heard a lot of screaming in the room. This was when the itching had become unbearable and Daniel was trying to sit up, which is still a big no-no. David was trying to keep Daniel from scratching (he has already drawn blood several places on his tummy by scratching) and get the nurse in to address the problem. This lasted a little while and then we had to deal with a misunderstanding with the nurse about the time periods when Daniel is supposed to be getting these meds for itching. This nurse hasn’t been here during our stay before and I think she missed out on some communication about how frequently the itching medicine is to be given. Hopefully we’ve worked that out now. When Daniel is beside himself it is pretty difficult to manage things.

Now he is sleeping nicely and I am listening to some irritating beepings announcing that medications have completed dispensing . We are in the far corner from the nurses’ station and I don’t think they always hear our beeps right away. I am glad he is sleeping through them.  Ahhhh, sweet relief – someone just came in and turned them off.

I am thankful that the times when Daniel is really struggling are relatively short and spaced several hours apart. The times in between are peaceful and even enjoyable when we are trying to play games together. Please be praying that Daniel will start to eat soon. He has really had very little since we have been here.

Thank you so much for your caring support and uplifting messages!

6 thoughts on “We had a great night!

  1. Hi David, Ruth & Daniel & Hannah!! Sending prayers for all of you from Maine!! May the rest of your stay in the hospital be peaceful & uneventful!! Do they have a discharge date yet???


  2. You guys are doing awesome. The beeping machines drive you nuts. Your post seems all too familiar. Lol


  3. Happy to hear you had good night of sleep and hopefully Daniel’s itching has stopped. Praying for all of you daily and that this surgery has been a complete success!


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