Not Sepses

After 48 hours (I still say there has to be a faster way of doing it) nothing grew on Averi's cultures.  It was just a cold, or at least something that wasn't in her blood stream!  Although it left her puking and with a high fever, it did not send her to the PICU.  I guess I'll count that as a blessing.

She's still not really in the mood to do anything but her fever is gone and her antibiotics are being readjusted.  She won't eat and definitely won't drink anything, but she's not in the PICU.  Hopefully she will start feeling better soon.

In the midst of all this being sick, Averi received a very sweet present this week.  Each member of Kaili's preschool class made Averi a Christmas Get Well Card with a yarn tree on the front.  The letters were so cute!  We hung them up in Averi's hospital room so that we could all enjoy them.  (Note the Christmas lights that we had to jump through hoops to keep up on the walls.  If we have to be here during Christmas time, we're gunna make it festive, dang it!)

It Gets Old

The last post was really long, my apologies, but that is life right now...long and tiring.  I so need to vent...

When we first heard the diagnosis and treatment plan, I thought I was mentally prepared for 6 months of craziness.  I was NOT.  We are now 3 months into a '6 month plan' and not even done with cycle 2.  This is half of what I thought it would be and I am done.

It gets old asking people for help all the time, even if they say they don't mind.  It gets old having to schedule 4 people's lives so that we can have an hour or two together every night for dinner.  It gets old rushing through dinner and hurrying your 4 year old and not ever getting to spend real time with your husband or family because it's almost bed time and everyone has to get up early tomorrow to start another crazy day.  It gets old not being able to be the mother or wife you want to be because you're just stretched too thin and you hope someone else is making up the difference.  It gets old not being able to exercise and feeling yucky all the time and staring at the same walls and people.

It just gets old and there is no end in sight.  I realized today that we will still be here when Averi turns 2 in May.  When Averi was born, I accepted that we would never have a 'typical' life, but how far from typical are we expected to venture?  How many times am I going to take out my frustrations and lack of sleep on my husband before he gets tired of it because he is so sleep deprived himself?  How long?  I just want it to be done so we can go back to whatever 'typical' is supposed to be for us.  I was so not prepared for this.

Hope It's a Cold

Tuesday was another normal day at the hospital.  Averi is continuing to have sessions with OT, PT, Speech, and Massage. Feeding is going about the same with interest in purees and not so much interest in drinking.  Oh, and did I mention she didn't sleep that night?

I hate that I can tell when Averi is about to get sick and no one can do anything until some 'real' symptoms show up.  She rolled around in bed crying all night and her head felt really hot to me but she had no fever.  PT even mentioned that she felt warm Wednesday morning but she still had no fever.  She wouldn't eat anything and literally fussed all day.  When she couldn't even nap for more than 15 minutes without waking herself up crying, I demanded that something be done.

The nurse finally called the doctor for some Tylenol, but only after I told her that Averi is teething.  I also explained that Averi got all four molars first and never got fussy with any of them, but all she heard was teething and then went and ordered some Orajel.

It literally took an hour and a half to get the Tylenol, and by then Averi had cried herself to sleep while I rocked her.  Luckily (I guess) Averi finally had a fever by then (which the nurse also attributed to teething) and I asked that a doctor come see her.  She makes me way too nervous when she starts getting fevers.

Of course, by the time the resident arrived, she'd had Tylenol on board for 2 hours, had no fever, and was happy as could be (for the first time in almost 24 hours).  They said she looked fine and to call them if we had any concerns...um isn't that what I did 2 hours ago?  They also said she couldn't have any more Tylenol (the only thing making her happy) because they didn't want to mask any symptoms if she got worse.

As only a mother can know, she got worse.  By 10:00 last night she had a fever over 101.  They took cultures and started her on 2 hard core antibiotics.  All I could think was, "Please don't be septic!"  She was hooked up to something all night, as she needed more platelets and antibiotics.  The nurse and I took turns rocking her all night long.  Her fever got as high as 102.6 and her whole body was on fire.  My only hope was that her arms and legs were hot as well (sepses causes the extremities to go cold as the body works to protect the vital organs).

By this morning, I realized for the first time that she could be sick without being septic...duh, I know.  The doctor explained that, as bad as it may sound, the best option would be for her to have a cold.  So that's what I hoped for, all day long, as she lay in her bed refusing to even sit up.

As good things always come in pairs, I also noticed a large bump on Averi's bum as I changed her diaper before she tried to go to sleep last night.  She screamed when I wiped it so I showed the nurse and he said that it was a hemroid.  I asked him what we could do to treat it and he replied that nothing could be done unless it was really large and needed to be surgically removed...and that her's is pretty large for someone her size.  Seriously, that's what you're going to tell a mom who thinks her child might be septic?

This morning the doctor explained that chemo breaks down the body, including the intestinal walls, and can sometimes allow normal GI bacteria to enter the blood stream.  This could be reason for her to become septic and they are going to keep a close watch on her cultures for a GI bacteria that can cause respiratory problems, especially now that she has the hemroid.  They also switched her to an even stronger antibiotic that targets GI bacteria.

The only thing that trully cheered Averi up today was when Music Therapy showed up.  She loves music so much.  She still wouldn't sit up, but she danced while lying down and shook her maracas and tapped the drum while the lady sang and played her guitar.  Averi even smiled for a little while.  It was a miracle.  It was perfect timing (something was set up yesterday because Averi won't leave a mask on and therefore can't leave the floor to go to group music time and other activities) and I can't wait for them to come again.

Tonight there is still nothing growing on her cultures and I am hoping the antibiotics start kicking in soon.  I really hope it's a cold!

Grandma's Blood

Today was another uneventful day, which is good but still draining.  When the NP came by this morning she said that, as expected, Averi's blood counts are starting to drop.  They tried to wait as long as possible before having to give her blood products, since there is always a risk, but they had waited long enough.

Averi's platelets were 16 (20 is means for a transfusion) and her hemoglobin was 7.3, which should have left her tired and pale.  Instead she was chipper as ever; the NP couldn't believe it.  This meant she had to get platelets and red blood today.

Lucky for us, Grandma direct donated some blood while she was here last week.  This was the first time Averi was able to get blood from someone we know, which was pretty cool.  Grandma tried to pass out while she was giving the blood, but she held it together and made the sacrifice for Averi, which is greatly appreciated!  Averi kept playing with the blood tube and trying to eat it...um gross.

After getting her blood transfusions, Averi was much happier and more energetic.  I decided it was time for a project and set to work determined to find a way to keep Averi's name and allergy bands on her legs.  Her feet are so tiny that they fall off all the time!

So I rigged up fleece bands that I could tie around her ankles.  I don't know how long they will last but at least they look more comfortable and they stay on.  (I know what you're thinking, and yes I do need to get out of the hospital more often.)

 Averi seemed pretty pleased with today's accomplishments!

P.S. - If anyone ever wanted to direct donate blood for Averi, not that we are asking but because people have asked us, she is A positive.  Contact me and I will add your name to her list of donors.  Then you just go to a Red Cross (after they get the paper work) and they will send your blood to us. :)

Oral or IV

I know, I know, I shouldn't have left you hanging after that last urpy post.  Don't worry though, Averi has taken posting on the blog into her own hands.  I'm not sure if it will be more than raspberries but at least she will be posting.

After Thursday night we re-decided that nighttime is Averi's yuck time.  Remember how we gave her Zofran every night when we were at home?  Well, we forgot about that when we came back to the hospital, just like we forgot that Thursday was going to be the rough night.  Anyways, we have been giving her Zofran at night again and she has been doing just fine.

Dan stayed with Averi over the weekend and had a little confusion with the nurse about the Zofran.  At home we give her an oral solution but at the hospital they give it to her as an IV.  When the nurse asked how they usually gave it to her, Dan told her that we just push it in (talking about putting it in her G-tube).  The nurse seemed really confused and said that the order said it should be over 15 minutes (if she had the order why was she asking Dan).

After much debate she hooked it up to the broviac as Dan tried to stop her from giving an oral med in her IV.  Long story short, they finally figured out that they were talking about two different ways to give it.  At least Dan was paying attention. :)

Other than that, it was an uneventful weekend, which is just what we like.

I Jinxed It

Yesterday all was well in the world, and then I went and posted about it.  When I said that Averi was feeling great I forgot that last Thursday was the day we went home from the hospital and Averi spent the entire night throwing up.

Well this week's chemo was no exception.  As Dan went to lay Averi in bed before we headed home, she threw up all down his front.  She was fine all day but she really fought eating dinner, more than usual, and seemed a little fussy for the rest of the evening.  Apparently her tummy wasn't feeling too great because she gave dinner back.

The nurse ordered some IV Zofran and we did the usual cleaning up.  Poor Averi was so exhausted that she fell asleep naked with her eyes half open while Dan was holding her.

Things calmed down but then she had another bigger episode.  Once her stomach was empty and the Zofran had kicked in, she slept for the rest of the night.

What is up with this?  I even knocked on wood when I said things were going well.  From now on I will only have bad things to say so that Karma will stop kicking me. =P

Flashes of Hope

We finally got the pictures back from the photo shoot in October...it was worth the wait!