Friday, December 21, 2012

Central Line is Gone

From CaringBridge...

I have to say that I was thankful to be in the hospital around midnight Wednesday morning.  I had noticed a wet spot on Ella's clothes on her chest and a short while later the wet spot was bigger.  It was just under where her dressing for her central line was.  I called the nurse and it turns out that there was leakage from that area, although we couldn't see the source of the leak.  Her TPN was halted and they did a quick dressing change.

They took her to the procedure room to place an IV in her hand and restarted her TPN and antibiotic.  

The bad news is that the TPN is really hard on veins - so through an IV, the IV doesn't last long.  

The other bad news is that the antibiotic is really hard on veins - so through an IV, the IV doesn't last long.  

Now put the TPN & antibiotic through the same IV... see where I'm going with this?  Her first IV lasted 25 hours.  The second lasted 29 hours.  They have not placed the third just yet.

Back to the central line.  It was easily decided on Wednesday that the line needed to come out.  The doctor suggested that if there was a crack/leak in the line below the skin that would explain her infection.  Because of Ella's age she had to be taken in to the operating room to remove the line (the surgeon says he can talk older kids through being still enough for the procedure), so she had minor surgery on Thursday.  It went very well.

After surgery the surgeon told me that it appeared she had outgrown her line.  I said that made sense given it was placed when she was still less than 2lbs, she's now about 15lbs.

The doctors have worked hard on putting a plan in place so we don't have to replace the line.  The original plan was to place a PICC line in her arm (which should last 2 months or so) after her infection clears up and send her home using that for antibiotics & TPN.  

A more creative plan was proposed which will require we stay at the hospital longer, for the full 10 day course of antibiotics.  She will need multiple IV's placed to support the antibiotics and TPN while she is here (not to mention daily blood draws too).  But we will also increase the calories in her formula so we can get her off the TPN next week, for good.    She's currently at 89ml/3hr.  The nutritionist at the hospital says that when we go to 92ml on Monday with the extra calories we should be able to stop the TPN.

We have opted for the longer hospital stay with the goal of getting her off TPN, even though it will be hard on Ella (and me, and my support).  

That's where things stand.  

The Peds unit is VERY different than NICU.  There is NO baby care by the nurses in Peds, they do only medical care.  This is why I am thankful that we have Grandma and Natalie to help during the day, giving mama a little break.  

We fix our own bottles here whereas in NICU they made up bottles for the baby.  But it also takes FOREVER to get her "as needed" medicine, like her drops for gas pain.  I will ask for it because she is having pain and it could take 90 minutes to 2 hours before they actually bring it.  At home, when she needs her medicine I give it to her.  Right or wrong, I just had mom bring her gas medicine from home so I can control when she gets it.  

They don't seem to do baby-care on a schedule like they do in NICU (every 3 hours)... so I don't know when they are coming to do vitals or other care and it doesn't seem to matter if I finally got her to sleep a few minutes before.

BUT... we do have walls, a door, a bed for me, drawers for clothes and a TV.  These are all things I would have given anything for during NICU days.  

I've actually run into a couple of staff from NICU since being here, they are so sweet!

Plan C: The doctor just came in and said they will stop the TPN today.  She doesn't need it enough for how tough it is on her veins.  She also said that our GI doctor said not to increase calories in her formula (after Grandma and I just trudged through the calculations on how to mix the revised formula, but that's okay).  But this doesn't change our plan to get off the TPN permanently.

I'm struggling with the doctors/nutritionists about their "calories per kilo daily calculation requirement" (it's a complicated formula based on Ella's weight, how much she has to take in each day).  My biggest struggle is that Ella doesn't want 8 bottles a day and the doctors order that she takes 8 bottles a day (she is 8 months old; 5 months adjusted today).  

Since she has been sick she has been eating less and we have NOT supplemented through her g-tube and she is still gaining significant weight (she put on 10oz in 9 days last week taking 7 bottles daily). 

I'm in "trouble" for allowing her only 7 bottles daily but what I am doing is listening to what Ella wants.  She doesn't have an oral aversion (which is the first thing these people think when I say she doesn't want her bottle)... at midnight she is telling me "mommy, I'm not hungry, why are you trying to force me to eat?"   I'm challenging the docs/nutritionist to look at her WEEKLY WEIGHT GAIN in addition to their daily kilo calorie requirement.  If she were losing weight or gaining really slowly that would be one thing.  But she is bigger than many term babies.  

This is one of the frustrating parts of having a "medically fragile" child... the balance between listening to the experts who are following the standard, and listening to my daughter (and my own instincts as her mother).  They absolutely know what they are talking about, but I'm with Ella day & night and I know her.  I think I'm making a little headway trying to get them to compromise... but I have a feeling it just depends on which of the many experts I talk to at any given time.

Anyway, that's our story.  So now I'm hoping we will be released before New Years.  And I can toss out all of the TPN supplies that are taking up a corner of my kitchen.  We may just have to burn her backpack & IV pole!


  1. I so admire you & all you & Ella do. Thinking & sending good thoughts

  2. Trust your instincts Mama! You know Ella better than anyone else. The doctors should be following her weight as an overall trend (especially if she is gaining as well as she is). If she is hitting her goals it shouldn't matter how many bottles a day she drinks. Also she still has her g-tube so you have options should she begin to lose and not be able to keep up orally. It is FANTASTIC that she doesn't have any oral aversions. That alone puts her so far ahead of the curve. You are doing a fantastic job and so is Ella! Kudos to you both. While this hospital stay may not be ideal you are working toward an overall goal and this is a step in the right direction. The sooner Ella is off of TPN the better. Our thoughts and prayers are with you. Oh and I totally agree with you about the difference between the NICU and a regular floor. It almost seems crazy that they don't have 24 hour immediate care for babies that are so young. The waiting for meds and bottles is also hard to get used to. I am glad you had your mom bring the gas drops!
    Chitown Mom of 2

  3. I can't believe all the things you and Ella have to go through - just as I thought you were set for a happy christmas. Thinking of you both,

  4. Really hoping that you'll be able to go home together soon.

  5. Sending you lots of love and good wishes. You are doing great -- I think it is fabulous that you know her health so well now that you really can be comfortable and follow your intuition. You are an amazing mama.

  6. Sounds like a really good plan, though I hate it's keeping you in the hospital over Christmas. Ella is doing so well - like the others have said, trust your instincts. You know her better than the doctors. :)

  7. so glad that you are about to be done with TPN!!! that's AWESOME!!!

    i agree with the rest, trust your instincts!

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