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

Very Long Day at Hotel VCU

Overnight Emily continued to have high blood pressures but thankfully no fevers. Blood draws at 5 in the morning tend to be rough as well because her port has been very positional so drawing blood has been tough! So the past two nights she has had to come back and draw again each time waking Emily and trying to get her to move around to get the blood draw!

Platelets didn't go up much today either 23 only to 26! She was given 2 units yesterday so they decided to give her a full 4 units today. Her body since that anaphylactic reaction has been eating up the platelets. WBC .4 so she is starting to go up, just really taking a while. They did say the CMV virus they were checking for came back negative but the other one has not come back yet!

Today has been a rough day. Actually it's been a rough week, we all just need a vacation away from work and everything, ugh something would be nice. 

This morning her blood pressure was really high before Dr Gowda visited and were all over night. With blood pressures still being an issue, dr gowda said he is not ready to let her go home yet! So they worried that with high blood pressure that her kidneys were having some problems especially since her creatinine levels have remained elevated but not crucially high. Etoposide can cause kidney issues as well as years of chemo (like she has had), so they contacted Dr Lo a Nephrologist! However Dr Gowda feels the high blood pressure is the overload of all the fluids, But they also don't want to rule anything out! So they got a Nephrologist to be a part of Emily's team and to see what's going on. She ordered an ultra sound of the kidney and some extra labs overnight to check somethings. Blood pressure remained high and so they gave her IV hydralazine and checked it in 15 minutes and her blood pressure was still high and then gave her isradipine (pill) and after awhile it was still high so another dose a little bit higher of hydralazine. After half hour it was checked again and now she had extremely low blood pressure and very high heart rate and extremely lethargic. Then time for a bolus to bring the blood pressure back up! By this time Emily had moments of ups and then extreme downs and when she finally came down off the medicine she seemed to be feeling like a "glucose low".  During all this they were able to give her platelets but watched her closely (we were upon the 4 hours and we really didn't want to lose platelets that a donor took time to donate) and even the ultra sound was being done around this same time. Emily has been very agitated throughout all this not talking much and feeling very annoyed. During this time we also had bloody lose stools. So all of this adding up made for a very nervous mom watching all this and seeing her moods up and down. Thankfully this morning she felt up to hanging out for 2 hours in the playroom with Sue, myself and Brianna! See picture....

Dad slept today after not sleeping all day yesterday and of course night from working, I hated that when he called after waking up to give him the update of the day.  Never fun to wake up and hear the news that Emily has had a rough day and all that has been happening. Then being frustrated with the doctor on too much medicines so going from one extreme to the other, was hard! Thank you to Sue for bringing Brianna up for the day and getting breakfast and lunch. Poor Brianna hasn't had anything stable with Emily being in the hospital and having a hard time with dad going to work, and where she will be for the night! She was really good today and nice to have her here hanging with us. Tonight Nanny also came for a visit and then daddy got here with toys for both of the girls. Thank you nanny for taking Bri for the night and thank you sue and Jojo for holding down the fort. I feel so bad that we couldn't have any down time to visit and see Jojo and wish we could just take some time off and go spend time with them. 

Emily hasn't seem to have had anymore loose bloody (and they were not just tinged but all red and obviously blood) so we are thinking she had some kind of gi thing going on or tear that couldn't clot because her platelets were so low and then has not had anymore since she received platelets! I know we were concerned with hemoglobin dropping again but they did a stat hemoglobin check and it was from 10 to 9.

For the past 24 hours Emily is starting to eat better, so thank you dad for making sure she had her Mac and cheese because she has been eating that and chicken noodle soup like crazy!

Tonight about 1110pm we finally got the IVIG going. The hope is that whatever antibody or whatever that is eating up the platelets the IVIG will help it. The biggest concern with IVIG is blood pressure so it Is being checked what seems like every 15 minutes. They bump it if she can tolerate it but they are only bumping it at halves to not overwhelm her body! At first her blood pressure went up in first 15 minutes but has gone down within next half hour! So so far she is tolerating and for that I am happy! 

Emily is very agitated with people, doctors, noises and just anything out of the normal. I feel so bad, dad and I both do because of how she is feeling! Everything she is going rough and putting her through more hell when this was supposed to be less!

The plan is to get this done with no high or low blood pressure because if goes " low we may have to either do fluids and if it goes high will have to do meds.  It will probably be about 10-15 hours to complete so I am not sure when the blood draw will be completed to check counts and everything else and we are not sure on discharge. I know that Dr Low is to come back in the morning and review Emily and see what is going on. She will determine if she will need to go home on blood pressure meds tomorrow and review kidney ultra sounds. But for us, We just want to make sure she is safe when she heads home and not worry about blood pressures and anything else. If discharge tomorrow, we will have clinic on Monday morning to get blood counts and check in with Nephrologist!

Please continue to keep Emily in your thoughts and love. We are all completely exhausted and want to be home. I'm so tired tonight and won't be sleeping much to keep an eye on her. 


1 comment:

  1. Bless you all!! I can only imagine how tired all of you. Praying for sweet Emily and for her family...