Wednesday Evening

Sarah, Debbie and Kelsey came by and brought Mom and Dad some dinner (which was yummy). Rebekah wanted to go for a ride in the wagon with her sister. Sarah sat with her for quite a while, but did get rather squirmy.

Janine from Physical Therapy wanted to know if she could work with Rebekah. I suggested that she see if Rebekah wanted to pull Sarah around in the wagon which would allow her to spend time with her sister and get some Physical work. That lasted for a little while and Sarah got too wiggly. Janine continued to work with Rebekah, walking around, pulling the wagon or pushing the wagon all the while walking with Sarah, Kelsey, Debbie and Mommy close by and Daddy popping in now and then.

About the time we were heading back to the room because Rebekah was getting pretty worn out, the Art Therapist came looking for her. We headed right back to the room and took a few minutes to get situated and then she got to do some art. Rebekah decided that her artwork this time was for her sister, so Sarah took it back to Debbie's with her.

By the end of Art time, Rebekah was getting pretty tired and acting up. She was not listening to the Art Therapist or Mom or Dad and putting things into her mouth like markers without the cap (now she had a blue tongue). Daddy explained to her that she lost the markers because she was not obeying and he took them away from her. The Art Therapist was seeing that it was about time to go, as Rebekah wasn't being cooperative.

Sometimes I think that Rebekah figures she can get away with anything while she's in the hospital (and most of the time at home) just because she doesn't feel well. Not at all the case. She may get a little leeway, but she still needs to listen and obey. In many ways, we know that she needs the discipline - it is afterall a form of love - and she needs to know where the boundaries are.

That started the crabbies for the evening. She complained that she had owies in her mouth. It hadn't been long enough since she had benadryl or tylenol, so she couldn't have those but we were able to give her some morphine - hoping it would help with the owies and maybe put her to sleep. It seemed to do both. She slept for a short while and then woke up very agitated. I asked for some ativan for her to help calm her down. She really wanted it in her mouth, but since it is a pill that is disolved in water and wouldn't taste very well, we put it into her gtube which she fought - kicking her feet and hitting with her hands. Not a very pretty sight.

Then a little later, she was coughing and then throwing up. Uugh! Since she hadn't been having vomiting sessions, Mom didn't have all the supplies ready and had to call for the nurse to help. Nurse Betsy and Nurse Heather came in to help. It wasn't too bad as the only things that needed changed were Rebekah's clothes, the pad on the bed and one pillow case. It could have been much worse, but it still wasn't any fun and it is not good to see a kiddo not feeling well.

A little while later, she was coughing and throwing up again. This time it did not appear that there was much of anything left in her stomach. Because she had been throwing up, she needed to get "Replacement Fluids" - IV Fluids in the volume that was estimated to have been lost. I always find it humorous - if she doesn't take enough in to meet her RDA then nothing is done, but if she takes something in and it doesn't stay down (or maybe I should say in - since it never really went "down" in the first place) then it has to be "replaced". Go figure.

With the volume of fluids that she is getting (IV fluids and GTube nutrition), she is looking a little puffy.

She is such a tired little girl, but she is fighting sleep once again. At this point, today, I'm thinking that there were perhaps a few too many activities and a little too much excitement for the day. She is overly tired and fighting against sleep. Mom let her play quietly in her bed for a while, until she really started to be getting upset unnecessarily. That is when it came to an end.

Now, she is laying in bed screaming. It would appear that she will need to scream herself to sleep tonight. She did just get some morphine to help with the pain and hopefully help with sleep. The benadryl and tylenol she got a couple hours ago didn't seem to put her to sleep. We shall see. She is telling Mommy that Mommy needs to go nightnight "on a pillow", too.

As frustrating as it can be to see her "acting out", there is a blessing in it - she feels up to "acting out" and that can be typical 3 year old behavior. Like I have said before, we have to find some good in each day - it may be a smile, acting out, an act of love or a poopy diaper when there haven't been any for a while. There are always blessings, sometimes they just take quite a bit to see. I thank God for each little blessing.

Several people have asked me today how I'm doing. My answer has been "I'm hanging in there. I'm tired, achy, crabby and we're in the hospital." Nonetheless, God is Good and I haven't lost too much sanity today, yet... Rebekah is still awake and there are almost two more hours in this day. Who knows how they will go.