A good ending to a tough day

I got to stay with Bela all day.  I think we slept about three hours last night. Her breathing was labored and her heart rate was very fast because he large abdomen is pushing up on her respitory area. Her oxygen/heart rate machine kept waking me up. I went to get her nurse and that's when they put her on oxygen.

They called the dr. and when he looked at her I could tell he was worried. Usually he's pretty light hearted, encouraging, making jokes, but not today. He ordered chest and ab xrays right away.  He had the  peds ICU dr. come take a look to see if she needed to go back to the ICU. He was worried about her abdomen and ordered her to be sent back to the ICU.

So for the next few hours we waited for her room in the ICU to open up, I started cleaning up her room and they gave her tylenol for her fever. Finally at 1:30 we wheeled her in her crib over to the ICU and at the same time a photographer showed up. She is a cousin of an old and dear friend who offered to come take pictures of Bela when she learned of our blog through our mutual friends.  She didn't get to start till about 2:30 since the nurses had to get Bela settled.  She was great though. She took hundreds of pictures of Bela with all kinds of hats.  There were poses in her bed and with either Beto or I holding her.

During the photo shoot some friends from church came to visit, Doyle and Kathleen Barnes. Bela is just so fascinated with Doyle and his face! When he came into the room and started talking to her, she opened her eyes wide and followed his voice by turning her head towards him. I can't wait to see how those pictures turned out.

After they left Bruce and Wanda Martin and David and Linda Cron came to visit.  During this time Bela was getting pretty fussy and two surgeons came by to look at her central line on her chest. It's been infected and they havn't been able to draw blood from it in awhile, so they were able to transfuse platelets while taking it out in her bed. It was fast and easy. I am really hoping that now she won't have any more fevers and perhaps pretty soon can start getting off some of the antibiotics.  Less fluids means a smaller abdomen.

She was able to get taken off of oxygen around the same time the photo shoot started (yea!) but was in a lot of pain: her body was tense, she was arching her back, making fists with her hands, and crying a lot, so they gave her her third dose of morphine in less than 24 hours. I know it's all the pressure in her ab and pelvic area.  They did give her Lasix again so hopefully she will poop and pee a lot tonight and her ab will go down.

The GI dr. is really nice and she said the infection bela has is mild and she didn't really think Bela really needed to be in the ICU, it was just a nice precaution. So I felt a ltitle better that she didn't seem too worried. In the ICU she has her private nurse and is right by the nurses station so I know that they will constantly be monitoring her and won't "miss anything". Maybe they'll be able to figure out more about why her ab area is so distended. I finally wondered tongiht why they said they'd have to wait for her blood counts to go up to do a liver biopsy if they already did two bone marrow biopsies and a surgery to place her central line when her counts were low. The infused her first, so I asked her nurse tonight to ask the dr. why they don't just infuse her so they can do a liver biopsy.

I know the staff has never sugarcoated anything and has always been very frank with us about how her treatment will be very rocky and with lots of ups and downs. But this had to be one of the lowest points for me. Last night at 3am I called Beto and asked him to pray for Bela and I even asked God to wake up anyone He saw fit and have them pray for Bela. So sorry if you got woken up by God in the middle of the night. I know there's some of you out there that prayed for her in the wee hours this morning. You know who you are and thank you for listening! I was really worried about her distended ab section and her labored breathing.

The ICU dr. said today that if her breathing doesn't improve tonight they may put her on a machine to help her breathe to calm her down and rest her heart. We are praying that won't happen.  Another dear friend has offered to watch Bela every Sunday from 4-7pm so Beto and I can have a date night. (Of course our "date" tonight consisted of coming straight home and collapsing on the couch).  Her son was healed of Leukemia so she knows how to take care of a patient like Bela and knows a lot of the staff since her son was in the same unit as Bela.  My mom relieved her at 7 and stayed till 9. My mom said our friend Linda was holding her and that seemed to help so that there isn't so much pressure on her kidneys and back. When my mom left tonight she put Bela on her  side and the nurse elevated her bed a bit and she was sleeping soundly and breathing a lot better when my mom left. Her abdomen was also a half inch smaller, so thank you for your prayers today!!!

Last night was so discouraging and scary  but today God showered his love on us in the form of so many people who called, texted, and visited. My husband is the best and his prayers and support, even though he's going through this just like me, are just what I needed to feel better. Even though this isn't about me or us, it's about Bela. I am still hopeful that she will "turn a corner" this week for the better.  We were told that she should only be in the ICU for a few days and then be able to return to the Hem/Onc area. She may not be able to get her same room though so part of our 'date' was spent cleaning out her room at the hospital and bringing all of our stuff home.