Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Sunday, March 2, 2014

Checking In

Last night was an extremely long night. I think I got about an hour of sleep total from watching her and keeping up with high blood pressures! The IVIG they check vitals every half hour and every hour hour increase if her body/vitals can handle it! They started at 8.5 and by 30 minutes she should have been able to go to 16.5 but during the first 15 she had a little high blood pressure so they keep it at 8.5 and then the next half hour checked it again and it was down a little bit. They went to 12.5 instead of 16.5 and she went up a little but not too high...next half hour tried to go to 16.5 but her blood pressure went up so they decided to put it back to 12.5 and leave it there and give her blood pressure medicine to bring it down.  Overall the rest of the night she handled the transfusion well. It went for 11.5 hours at a very slow rate.  It finished by 11 and then they checked counts. Port is still bring funny right now and still having a hard time getting the blood to draw but was able to get what she needed to send it off. 

Dr Lo came by this morning and said that she felt like at this point Emily didn't need to go home on any blood pressure meds but that she would follow her when we are clinic. She also reviewed her kidney ultra sound, bladder and that nothing was of concern but could tell where the tumor was removed that kidney was a little smaller but wasn't causing any problems!

Remember yesterday her platelets were 23 and they gave 4 units last evening, after the draw today after IVIG they were 15. Crap what is going on. Hemoglobin dropped from 9 to 8.2, so hopefully she won't need blood again anytime soon. 

so they ordered pre medications and started those. Platelets came and they went to start them but checked vitals and Blood pressure was too high (146/96)to start platelets so they gave her hydralazine and after a little while blood pressure came down and she could start.  The team did call Dr Lo and she would like for Emily to go home on enalapril. Taking a dose in the morning and in the evening and they are also checking with critical care to see if they can bring a blood pressure machine to the house. 

Platelets have now finished and blood pressure is up again now that done and they have redrawn labs to check to see where her counts are before they send her home tonight. As long as everything looks ok they will send her home on another medicine to the already other hundred that she is taking and keeping an eye on her blood pressure. 

So now we wait! Please continue to keep Emily in your thoughts and that we make home tonight with no other issues.  And that everything looks ok to at least give her a break and she come back Tuesday!  We are ready to get home to be with daddy and Jessie will be there tonight and Brianna is coming back from nanny's tonight. Emily is more than ready and wants to be home!


Thank you Carla and Morgan for the shirt, Emily loves it!

1 comment:

  1. I am continuing to be in Prayer for Emily!!!! She looks to be feeling better cause her ever so sweet smile is back!!! Praying that God leads someone to a cure for Neuroblastoma, very soon!!! No child should have to go thru all of this!!!!