The not-so-fabulous day

Scattered post with blurry cell phone pictures ahead!

Today we hung out at Children's 
for Lila's IVIG treatment.    
 The day started out okay.   
Lila slept well last night
 and was in pretty good spirits at the 
beginning of the appointment.  
The doctor left his stethoscope in the room
 so Lila had lots of fun using it.


When Lila got her IV it was a little rough.   
The nurses had a hard time finding a vein
 and then the vein wouldn't flush.  
They messed with it until it finally worked
 but I know we were all wondering if the vein
 was going to hold up. 
 It did for a while.

Then the nurse noticed that Lila's arm was swollen.  
The vein was blown.  They had to try the other arm. 
 The vein in the second arm was much easier to find 
and despite the tears flowing down Lila's cheeks 
and the three of us it took to keep her in my lap 
they got her IVIG started again.

The IVIG had been going for about 10 minutes
 when I noticed that Lila's arm looked swollen 
so I  called the nurse.  Second vein blown.   
They tried a second vein on the first arm 
after applying a heat compress but it was a no-go.  
We decided to call it a day.    
The pharmacist told me that it was impossible 
to tell exactly how much of the treatment Lila had received 
but she figured it was about half.  
We decided that I would keep an eye on Lila 
and call to reschedule the remainder of the treatment 
in the next couple of days.

On our way out we passed by the doctor's office.  
He knew that the the nurses were having trouble
 with Lila's veins so he asked if everything had worked out 
and I told him no, that she had two blown veins 
and a third try was unsuccessful.   
He came out of his office and asked me to sit down.  
He asked me if we had ever considered the fact that
 Lila might need a Mediport.   
He told me that the time has come.  
Lila's veins need a break 
and she will be needing monthly IVIG treatments
 for an extended period of time so it just makes sense. 
 He asked me to give him 24 hours to submit the order
 to the pediatric surgical center and gave me the number 
to call and schedule the procedure 
to install the port.

On the way home both girls fell asleep 
which gave me some time to think.  
A port is definitely not the end of the world.   
Every month at Children's I watch kids come and go 
who are having a much rougher time than my daughter. 
 I get it.  

Honestly I don't think I'm even that upset
 about the fact that she has to get a port 
as I've been expecting that to happen sooner or later.   

I think it was just the whole experience that got to me.
 She had red marks on her arms 
where I was holding her because
she was fighting so hard to get out of my lap.  
My arms were soaking wet 
where her tears were falling on me. 
 And she just kept saying, "No, mommy, no.   
Please mommy please."    

And there wasn't a damn thing I could do about it.


  1. I'm so sorry. This made me cry. Tears of pain for you both!! Hang in there!!

  2. Oh Linda, my heart hurts so much for you and Lila. There is nothing worse than your child being in pain and saying "no" but you are helpless. Go for the Mediport. I know it sounds scary, but it will save you from a lot of days like this in the future :-( {{{{HUGS}}}}

  3. And now I'm crying. I am so sorry and I wish I could be there for you. I wondered when this was going to be suggested and actually thought it would have been sooner. I know that you know this will make it so much easier. I'm really sorry for your not so fabulous day and while sometimes it helps to know others are much worse off, it doesn't make a bit of difference when she's crying and saying, No, Mommy, no, please, Mommy, please. I'm hoping today is a much better day. I love you. And the rest of the bunch!

  4. I work in a Chemotherapy unit (in Australia). Our clients are almost exclusively adult but I have had some experience with children. The thought of a port is scary but I believe you will be thankful if you go ahead with it. Unlike an IV,you really can't 'miss' a port, it can't 'blow' like a vein, and a numbing cream can be applied to the area before accessing. You probably know all of this but I just wanted to reassure you.
    Love and prayers to you and your little ones,
    Krystena x