Not Feeling Well -- Day 8, Round 2

So here we are Day 8 after the chemo started 8 days ago. We had a pretty calm weekend after the ASK 5K Walk. I did deaccess Emily Saturday afternoon. That was somewhat eventful, because it was the first time I had ever done that and our nurse we had last week, didn't give specific enough instructions. So, once the dressing tape was off, I tried to take it out and it wasn't budging and I freaked out so I had to call Critical Care who helped me and it was successful. Sunday Emily was feeling stuffy/runny nose, but still was feeling ok. She woke up several times unable to breath or from coughing too much and was up at 4AM on playing on the iPod coughing. She said her throat was sore and she was drinking lots of water.

Emily wasn't scheduled for count checks until tomorrow, however this morning when she wasn't feeling well, couldn't breath and coughing, I put a call into the clinic to see if there was an antibiotic that we can put her on to get this nipped in the bud. Instead they wanted to see her in the afternoon to do a throat swab for strep throat, check her counts and then give her the neulasta shot. This meant that Emily would need to be accessed again, and her anxiety was high and she was extremely upset knowing that she would need to be accessed. Thankfully it was done quickly.

Well Emily's counts have dropped to 0.1 which means her ANC can't be registered with no WBC. OMG they dropped quickly, Friday's WBC counts were 3.5 and today they were 0.1 WOW. At this point, its a waiting game for her to get a fever. Our hopes is that she does not, like we did last time, and we really hope she doesn't. But with this cold, we are not quite sure what she has because the strep will take 24 hours to come back and really there is nothing that we can do to prevent this. If is a cold, or strep it sucks with the fever and low counts.

Tonight since we have been home from the clinic, Emily has been sleeping on the couch not wanting to be messed with. At one point she woke up in sweats, so we put a sheet on her, but thankfully no fever so far, I think we were at 99.8. I have been sitting by her, still doing so while updating and she is rubbing my arm. Such a sweet girl, I hate to see her have to go inpatient with a fever however the thankful part she is already accessed and we won't have that added in this time.

Send your thoughts and love that we stay home like we did last round!!

We have received a few emails of people who want to send a gas gift card quickly to us for next weeks travels to Michigan. We really don't want to leave Brianna home this time because she is having a harder and harder time without us and Emily and we just don't want to do that to her again! It is so not fair to her. So, it looks like we will need to leave Monday night to be there by Wednesday morning. The address to send gas gift cards is:

The Hubbel Family

PO Box 5383

Midlothian, VA 23112

Hopefully we will not be inpatient with low counts and not be able to make the drive for her scans because I know previously she had low counts quite a long time before they started to go up. Please send your thoughts and love that she stays home and we are able to make the trip next week.

Thank you so much for you love and thoughts as we continue to fight the fight. Emily is such an amazing kid!

Monday, February 21, 2011

So yesterday the fever was persistent and continued all day!  It was so weird to see Emily only be in and out of sleep.  She did eat yesterday, not much, but she did eat and she drink a lot of fluids, so I was happy to see that.  She held onto me most of the day.   She was complaining her throat her, so I did ask them to do a strep test and they were adament to wait until today, however I felt it wasn't necessary to wait until today because waiting wasn't going to do anything, so I requested that they do it yesterday.  We should be hearing today if she has RSV or Flu and we should be getting something back on the 24 hour cultures and know what the stat on those are.  

They checked her fever about half an hour ago and it was 102.1 so the temperature is still up.  However overnight, she didn't have anything.  So, she is fighting something.  She also stated that they are going to have to do cultures again since her temperature is still up. 

Dad is going to come and stay with Emily today and I am going to go to work.  It is going to be hard to do this, because I am going to worry all day, but he has the day off so it seems like the right thing to do!   However if anything is going to happen, he will let me know and I will head right over.

We are still waiting for the overnight counts they did at 4AM to come back this morning.  They checked them yesterday at the ER and they were 0.1 for her WBC, so she is still getting the GCSF at the lower dose.  They will not double the dosage until they see that her counts are going up.  We are also waiting on her cultures to come back. at 704AM, her WBC results are still .1.  So we are still trying to get those to come up. I hate seeing her like this.  I really do!

I will update later, as soon as dad gets here, I will be heading to work.

Sunday, February 20, 2011

Emily on Saturday posing with her headband with the letter "E" on the flower. 

Saturday was a great day, Emily was having a blast, playing and having a good day.  We just hung low.  I did go out for groceries at Whole Foods, but I went alone since Emily can't go anywhere. We had dinner and things seem to be going well! About 1030 the girls were tired, so I laid down with them and stayed awake until 1130, Doug ran to Wal-Mart because Emily was going through tissues like crazy.  She still has the cough, runny nose. I fell asleep after 1130 and at 1230 Doug woke me up and said we had a problem.  I was still in a daze, but I was like...Emily has a temp of 104.1.  Wow, come on... so she got up and had something to drink and we tried to see if her temp would go down on its own.  Before we left for the hospital it was 102.

So, yes it was off to the ER at 2AM in the morning after talking to the on call doctor and she telling us to head on. Anyways once we got to the hospital her temp was 99.2 and the doctor there was feeling pretty comfortable that Emily would be able to go home after they did her counts and checked her temp again, however....that was not the case.  It was the longest night in the ER ever.  Seriously.  By 6AM, he was telling us that because her temp was 104 at home, she will need to be admitted, and they would be back in to check her temp.  By 720 AM it was 102. I think the night in ER was so long because about an hour after arriving, they had an emergency come in.  It seriously broke our hearts and we were praying and had our fingers crossed for this little girl.  I know later they said it still wasn't looking good, but she is only 2 months old and there was police, doctors and nurses everywhere.  We don't really know what was going on, but we were definitly saying some prayers for her.
 
So yes, Emily is back in the hospital.  Everyone was asleep this morning when they told me that and I just cried for Emily and for us.  You know after chemo, you come home and get back to normal life and enjoying having the family together and then all the sudden, this crappy temperature changes everything. Jessie was supposed to come home from her dad's today, and all of us would be home together.  So, although I guess I knew that this would be a possibility, I was just hoping and praying she wouldn't get it again especially with doing the GCSF everyday.  I can't tell you how much this (excuse me) sucked to hear. On top of that, we weren't prepared at all, meaning food wise. So that just makes things a bit harder on the situation and a bit more work on Doug.

Now Emily on the other hand is totally not taking this well at all. She does not want to be here, she has cried off and on and not just a cry, but a cry that breaks your  heart and you just want to cry right there with her.  I can't tell you guys how hard this is on her, on mom and dad (us) and her sisters.  It does disrupt everything and while we will do whatever we have to do for her, it still makes life hard. 

I didn't sleep in the ER last night, couldn't in the chair and Brianna wasn't about going to sleep, until about 530AM.   So I was exhausted.  We got to the room, Doug went to get our stuff out of the truck and Emily wanted a tubby. While she was getting a tubby, they did a RSV and Flu test, but later told me it takes 24 hours to come back.  That is crazy. Doug and Brianna went home to get food.  Thanks honey. Then Emily and I laid down for a nap, I was woken up by the doctor, but Emily is still sleeping!

Needless to say its been a long night and day!  Say prayers for Emily that she will be fever free for 24 hours and so she can go home. As always hold your kids tightly and love them with all you have!