Monday, August 13, 2012

Progress

Last night I spent the night with Bela and she did really really well. She still woke up a few times for diaper changes or because the nurse needed to give her meds, but otherwise she slept well.

Today I was there all day and now I'm exhausted.

 The "head honcho" hemotologist/oncologist came by today and I met her for the first time. She's very nice and said it looks like Bela's liver and spleen are smaller and her belly is softer. She is also breathing better and she is only on .25 liters of oxygen and the tube can't ever seem to stay in her nose. She is almost always in the 90 percentages and her heart rate is always normal. The doctor says she's very happy with her progress and can see that Bela is responding very well to treatment.

They did have to give her more Lasix yesterday which is normal for a baby in the NICU.  They are giving her a lot of fluids on purpose so her kidneys aren't negatively effected  by the chemo.  I think I must've changed a diaper at least every 30 minutes today. She is definately flushing out her system. The area where her hernia's are also looks a little bit better.

She only has five more days of one medicine and that's given only every 12 hours.  She is still getting her breastmilk through the feeding tube since it seems to be helping her breathe better, and today she had to receive another transfusion of platelets because they were at only 14,000.  Her levels are expected to be very low, however, with the treatment. That lets them know the chemo is working.

She was pretty good until this afternoon when she just couldn't seem to get comfortable, but the nurse finally gave her some tylenol around 6pm so hopefully she'll sleep well tonight since Beto is sleeping there tonight.  She is on anti-nausea medicine but she seemed exhausted but unable to sleep.

Today a volunteer came in and gave the girls and moms free manicures. She works at a salon where one of the hospital's social workers goes. She volunteers one day a month on her day off. She had breast cancer at age 25 so she wanted to give back since she is so grateful to be alive.

Also we recieved another visit from a volunteer whom we met last week and brought a hat for Bela.  She stayed for about half an hour and comforted Bela while I went out for a walk. She's a Christian and so she sang some hymns over Bela. It was really sweet.  And earlier in the day another nurse offered to sit with her and rock her while I got out for a few minutes.

Some prayer requests for today...

1. For Beto and Bela to sleep well tonight

2. For us to make some kind of good schedule to give us all some structure

3. For Santi. He is doing well but I know it's hard to have only one parent at a time with him right now.

4. For us all to stay well so we can all be able to visit Bela

5. Continued healing and rest for Bela, for her to be able to get off of oxygen and the feeding tube soon.

We feel so grateful for all of the love, prayers, support, texts, calls, cards, etc. from so many loved ones. Thank you and to God be all the glory.

2 comments:

  1. All the very creative ways God chooses to bless us are immeasurable!!! Imagine, free girlie attention to the nails and hymns being sung and special attention from special nurses, and HATS of all things!!! God is good!!!! Sooooooo wish I could be there. sigh

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  2. How was Bela's spleen and liver today? Did she have a good day or a so so one? Still praying for TOTAL HEALING QUICKLY!!! XOXO

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