To My Children’s Nurses

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My family is unfortunately familiar with hospital living. I was very sick after having Teagan and she was born at 34 weeks and in the NICU. At 14 months old Teagan got osteomyelitis that settled in the growth plate of her femur and she had two surgeries (4 total sedations including a picc line placement and MRI). I was placed on hospital bedrest for 3.5 weeks before the twins and the twins were in the NICU for 30 days and now cancer. I will say that throughout all of our hospitalizations there have only been a few (less than 5) nurses that we didn’t get along with. Was it a clash of personalities? Possibly. Were they having bad days? Maybe. Were they not paying attention to what they were doing and it made us mad? Sometimes. But overall, our nurses have been exceptional.
Our hospitalization for cancer with the twins has led us to meet more fantastic people, most of them our nurses. Now, it may be shocking to some of you that I can sometimes be perceived as “bitchy” (me?!). Add in a little stress sprinkled with lack of sleep and basically I’m the old step-mother from Cinderella and the nurses are Cinderella! (Not really – I do not boss them around, no hate messages please).  Full disclosure, I have lost my cool a time or 6 on my nurse and not because they did anything wrong but because things that were out of either of our control happened. And in those instances they have always handled me with respect and kid gloves when I was most fragile. They understand that I’m not yelling AT them but rather the situation. (I always apologize!!)
Our nurses are there to answer constant questions about what they are doing, what med is being hung, how long should it last, is that a rash, do we have to do cap changes, did you wash that, don’t let that touch the floor, are you sure you washed your hands, is that the right med, is that the right baby for that med, and any other crazy question you can imagine.
Our nurses are there day in and day out.  They are there when someone spikes a fever in the middle of the night, when the girls are puking feed after feed. They are there holding the girls down for procedures or for site care (and to cuddle them after). They are there for chemo and blood draws and antibiotics. They clean the girls up from vomit or explosive diapers. They are there for the pain cries and the itchy rashes. They advocate for the girls when there is a difference of opinion between the doctors and myself. They are there when the girls are happy and playing. For when they rolled over the first time and for when their counts came up. Our nurses have sat in a rocker rocking one of the girls all night so I could sleep. And have sat staring at them making sure they are breathing okay after a heavy amount of pain medications. They wash our clothes and help with dishes. They do all of these things to help take care of the girls, but I want to thank them for even more.
Our nurses have become a part of our story. A part of our family. They have sat with Aaron and I for hours talking about our lives, about their lives. They have kept me company when I’ve been lonely. Forced me to get out of the hospital when I needed it. They can tell if I’m having a rough day and do whatever they can to help make things easier on a mom who is fading.  I can tell they truly care about the girls, when the girls have a tough day, so does our nurse.  They celebrate our milestones and assure me it will be okay when we hit a low spot.
We are still in the trenches of our journey, but long after we are done with it, the nurses will still be a part of our family. I will never forget the friends I’ve made here and the people I’ve met. They have impacted our lives with their patience and kindness more than they even know.
So, to my children’s nurses, thank you. Thank you for putting up with my OCD momma-bear behavior, for answering my constant barrage of questions, for allowing me to watch you like a hawk without being a tad bit nervous, and most of all thank you for taking care of my babes like they were your own.
xo – Abby

Round 3 Sucks

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I have made it part of my mission to stay positive during the girls’ chemo treatment (that doesn’t mean I haven’t had breakdowns, because let’s be real – they are unavoidable in this situation) but I have tried to keep a level head and attack each obstacle as they come at us.  But there is just no other way to put it and I am just going to say it.  Round 3 sucks.  Not that you can ever truly prepare yourself for chemotherapy treatment because there is a whole host of side effects that could happen at any given time during any given round of chemo; but with 2 rounds under my belt, I felt confident coming into this round.  But that’s the way life happens isn’t it?  It’s just like the universe to smack you down when you’re just starting to get back up.

The girls began chemo last Wednesday night and the effects were immediate.  They quit eating from a bottle right away and the vomiting began.  Oh the vomit!  On top of that, on Thursday Kenedi began having real difficulties.  Scary difficulties.  When I got her up at 6 am, she was fussy and I knew from her behavior she was going to spike a fever very soon.  Sure enough by mid-morning, her fever hit and cultures were taken.  Antibiotics were held off because her counts were so high still.  We noticed around noon her breathing was a bit labored.  The doctors checked her out and she seemed fine.  A few hours later she began retracting when she was breathing which is always worrisome.  A chest x-ray was ordered, completed, and clear.  Of course this was starting to become a bit confusing and concerning.  On top of the labored breathing, retraction and fever, she had a resting heart rate in the 200’s, sometimes 220’s.  And this is when she was sleeping!  Around 8 pm when we picked her up to do a diaper change, she screamed like I never heard before.  Every time we touched her, she would scream and cry.  The night team came and checked her out and decided to start her on oxycodone.  One of the side effects of one of the chemo drugs is severe bone pain (makes sense since we are killing all their bone marrow L ).  Since her chest x-ray was clear and nothing had come from her cultures yet, they chalked everything else up to pain.  After starting the oxy, she slept very well.  However, it caused her to sleep so well that her O2 level dropped significantly into the low 80’s.  Because her stats condintued to decline, she was started on blow by oxygen which is just oxygen blowing toward her direction to help keep her O2 level high enough.  During all this, Kendal was doing well (besides the typical vomiting) until she cut a tooth!  Boy was she fussy!  We started her on Tylenol and she started to feel better.

Saturday I felt we had everything under control and everything was looking up.  Sunday afternoon, however, both girls developed a rash.  And different looking rashes at that!  After a full work up of vitals, and overview of every red spot and bump, it was concluded that again, this is just another joyous side effect from one of the chemo drugs.  I was told to just watch them closely and treat them with Benadryl.

This morning was the last dose of chemo for this round.  Now the waiting game begins.  Waiting for their counts to fall and recover all the while waiting anxiously and praying that they both continue to remain infection free.

Although I have been feeling down during this round, despite all the puke, meds, rashes, toxic chemicals, x-rays, labs and oxygen, the girls as always, continue to fight like rockstars.  Even while in pain, Kenedi manages a smile here and there.  And Kendal’s constant babbling is music to my ears.  That smile and that chatter is why I keep pushing on.  Through all the crap, through all the tests, through all the bad days, I keep moving forward.  The girls keep moving forward.  Because, like I’ve told them a million times, that’s the only option we all have.

xo ~ Abby