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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Friday, July 29, 2011

Day 0 - Day +3

Hard to believe I haven't updated since Monday when Emily received her own stem cells back, its been quite busy here both day and night.   I stay up late working and normally during that time, Emily is up with bathroom rounds or what have you!

Thanks Doug for doing all that you are doing with everything else.  It means so much that you bring the girls so I can have dinner with them and that you have been taking care of all the laundry for us with everything else.   I can't tell you how much we miss you, this switching off stuff and not getting to see each other much, is really hard and starting to really take a toll me, I miss you so much. It sucks that we don't get to talk a lot, mostly in passing or by text messages, but I want you to know just how much you mean to Emily and I for taking care of us and makings ure we have everything that we need, while you have other things to do.  It means so much to us.

Emily got a visit from Allison Rippy and her mom on Monday.  Emily loves Allison and she brought Emily a cute, fluffy little dog.  So cute, thanks Allison.  Emily however wasn't feeling that great when they came, so she wasn't very talkative, which I felt kind of bad, but I know that they understand.  Thank you Allison and Astrid for stopping by.

The nurse practioner came in to explain the process and how things were going to go and what was going to happen.  They were going to pre-medicate Emily with Tylenol and Benadryl because it was a possibility that she could break out from the preservative that was used to keep the stem cells.   He also indicated that while they are being transfused and for the next 24 hours, that we may smell something. Everyone says it smells like something different. He said since there was very little preservative in her stem cells she probably wouldn't break out. 

The process started about 140PM, Dad came and Pop was also here. MCV calls this your "birthday" since it is supposed to be special that you are getting your stem cells back.  The nurse that day told Emily it was her birthday and she was kind of confused and then looked at me and said, "Are we going home?"  I felt so bad, so I had to inform the nurse to be careful about what was said, and if she could let the doctors know this as well. Emily's stem cell's were just hung and gravity let them flow in throw her IV.  After the process Doug told Emily she had a stem cell transplant and Emily got upset and he told her it already happened.  After Emily started to break out all over, her legs, arms, behind her ears, back, everywhere. She wasn't really scratchy anywhere except for behind her ears. Since she had already gotten Benadryl, we just need to keep a watch to see if it got worse.  

Dr. Massey did let us know that Emily's Immuno Globulin G was low and that tomorrow she would need to get IVIG and that Emily would also need to start TPN (Total Parenteral Nutrition) after she received the IVIG since she hasn't eaten anything since Friday, but very little.

This was also the day that we really started to notice the difference somewhat.  Emily was having stomach pains, which we were not sure if it was from having loose BM's or if it was from the start of muchositis in her esophagus. They also took some of her stool to do a test of C Diff on it.

DAY +1
The stomach pains have started to set up.  Emily wakes up several times a night to go to the bathroom, whether it be loose BM's or just to go potty.   She also started to complain that it hurt to swallow anything. And when she did swallow anything, you could tell it was painful.

The C Diff that they sent Monday came back negative, but Emily was still having a lot of loose BMs and complaining of stomach pain, so they sent another one to have it tested.

She slept off and on, but and is still having bouts of throwing up.

Tuesday afternoon, the nurse got ready to start the IVIG and had to pre-medicate Emily with benadryl for the IVIG, because she could have side effects from the IVIG.  Recieving the IVIG Emily could experience rashes from it and also feel like she has the flu by being very tired. Doug came about dinner time, so I left for the first time alone to head and pick up Brianna from the sitters and then pick up Jessie from her dad's and have dinner with the girls.  I have to tell you it was really hard to leave Emily, because of all the guiltiness of leaving her, but I knew I needed to, to spend some time with the girls. Its really hard that now that Emily's counts are less than .1 that they can't come in the room.  It was nice to spend some time with the girls to have dinner and head to the Dollar Store for a little while.  I got a text from Doug that Emily was asking for me, so we headed back.   When I got back, she said, "Mommy I missed you so much.!"  Emily really just misses us all being together, we all do, its hard to be away from her sisters and dad and only seeing her sisters possibily in the hallway in passing by and daddy for a little while.  

Emily is asking for home a lot and wants to be home so badly.  When Doug leaves to go home at night, she gets upset because she just wants to be home. 

DAY +2
Wednesday Emily wakes me up out of no where (which that isn't unusual with the going to tbe bathroom) but to throw up. Once we got back to sleep, it seems like no time later the nurse comes in and let me know that Emily's C Diff came back positive.  Which this now puts Emily on contact precautions with a Highlighter Green colored piece of paper on the door indicating contact precautions.  The nights are long with my working at night, but also because Emily wakes up a good amount of times to go to the bathroom and several times she sits there because it hurts so bad. 

Emily has been complaining a lot more of her mouth hurting and she threw up several times this day and each time she had blood in it. Doug had read someone elses time during the stem cell transplant and that they gave their daughter Rincinol.  We are trying this and it seems to work for the mouth to coat the mouth and she doesn't complain.

Doug brought Brianna for dinner Wednesday night and while Brianna and I were eating dinner, Doug texted to let me know that Emily had a temperature of 100.6.  She seemed warm, but I wasn't 100% sure. The drew blood cultures also.

Emily is having more down time now, with not feeling well, sleeping  or going to the bathroom. They did start her on flagile (spelling) for the C Diff.  They want to have 3 negatives in a row for the C Diff to take her off the contact precautions.  They said with C Diff could cause stomach cramping where it hurt pretty bad.

Doug and I are thankful that Soosan, Jesse Grace's mom, prepped us with bringing thick baby wipes, and some diaper ointment for Emily.  we have gone through so many wipes and lots of ointment on her butt because she says it hurts when you wipe. 

This night, Emily's platelet counts were low, but not low enough for a transfusion, however the doctor indicated that if she threw up blood again that they would need to give her platelets.   So she had to get platelets about 10 PM.  Once the platelets were done, Emily starting to break out all over the place turning red where she is scratchy.  She wasn't feeling good at all.  Once the nurse looked at the rash which great quickly all over the place, they had to give her benadryl and then had to test her blood to see if maybe the platelets were infected.Seems like Emily is very bothered by a lot of the stuff that she is getting now, because before she never really had any problems.   After about an hour of getting the benadrul, the rashes were slowly going away.

Emily is still running fevers off and on throughout the night. Emily is doing well and taking things as well as to be expected, however she really isn't feeling as well as she was and is in a lot of pain in her mouth, and tummy. 

DAY +3
Emily was in and out of the bathroom all night and each time she was in the bathroom, she was crying of stomach pain.  We still haven't given her morphine yet because she is still able to sleep through the pain, so it seems that it must be bearable if she is able to sleep.  We are not to keen on the thought of morhphine since so many kids can get addicted to it, and then when it comes time to take them off of it, some kids are having a hard time coming off of it.  

Emily is still having a lot of Loose BM's and Emily's mouth is started to get red and looking beefy.  She pats her chest a lot, which indicates that it hurts in her esophagus.  We hate to see her in pain.  It really sucks.  Emily continued to run temperatures through the day today. Cultures are drawn every 24 hours that she has a fever in. 

Tonight, Doug picked up the girls and brought them both here.  When dad got here, Emily was in the bathroom with tummy pains and we switched off.  I took Emily and Brianna out to dinner tonight away from the hospital, but not far.  Again it was nice to spend some time with them. Thanks honey for bringing the girls. 

Emily ran another fever after the previous 24 hour mark, so they drew cultures tonight.l  So far nothing has come back yet, which is a good thing, so we are going to hope that they continue to stay that way. 

The pain in Emily's mouth has worsened and she is complaining a bit more.  So I spoke to the nurse to see if there was anything else except morphine, she said they have pill form type things, but  Emily wouldn't be able to take any pill types things.  On top of that she still hasn't eaten anything since last Friday.  So, even getting her to take oral meds is hard, because she throws them up. So we will just continue to monitor the pain and see if it keeps her from sleeping.  As it is not almost 4 AM, Emily has been up and down several times crying of pain, I have gotten work done and I extremely exhausted now. However she is now sleeping.  

Thank you so much to all the amazing people out there who have sent Emily beautiful packages and gifts for emily as well as photos to add to her Wall of Cards.  Thank you so much, it really means a lot to us. 

I will try to keep you all up to date more, but like I said it has been pretty busy here and taken care of Emily, I focus more on that than this.  

While I am now having a hard time keeping my eyes open, I really hope that this post makes any sense to you!

Thank you so much for your support.  Thank you for all the love, prayers, thoughts and care for Emily and our family during this time.   We are ready for the process to be over and head home wiht the girls.  

Good Night

1 comment:

  1. You are one strong mama, and you have NO need to be sorry for not updating. You really aren't that far between posts :) Everytime I read your updates I cry for you guys. I can't even begin to imagine. Your family is always in our thoughts and prayers!