I just don't know

Sorry, this is late.  I know many were waiting for surgery updates...  I wanted to write earlier, but just wasn't emotionally ready.  I think if I had it would have been saturated with frustration and sadness.

Lauren's surgery went really well according to the surgeons.  They did put in a VA shunt again.  This time on her left side.  She got three new scars:(  The nurses in recovery and in the room when we got back were really on top of keeping her pain under control (of course after much advocation from her mommy).  She didn't sleep very soundly or solid, but did get some rest.  I could tell she was uncomfortable still.

Lauren's eyes began to look swollen later that evening, and by morning time it looked like a bee had stung her.  A few hours later, the swelling went down, but it's still there a little.

Sometime in the middle of the night she threw up.  I got up several times to check on her, but didn't see it.  It had fallen below her neck all under her.  I felt awful!  Then at 6:00 I went to feed her and she would not eat.  Shortly after she threw up again. 

Neuro came by and said that they would want her head to feel softer (shunt moms you know what I mean).  He said that he wanted to keep a close eye on her and check her out this afternoon.  Later, him and Dr. Tulipan came, and he verified that her head was too firm.  They were going to go back and look at x-ray from yesterday's post op, and have another look in the morning at her.

In the meantime, Lauren began running a fever, the tylenol got it back down, but it's starting to go up again.  She threw up again later this afternoon after I tried feeding her a small bottle.  I did about an hour after that get her to nurse for about 5 minutes.

Her temperament is just not her.  She is easily disturbed and is sleeping lightly and grunting a lot.  She wants to be held 24/7.  It's amazing trying to outsmart a 3 month old, trying to lay her down on bed, without her realizing it.

So, right now I am confused.  I don't have any idea what could make her react so suddenly after the surgery.  I hope it's not a shunt malfunction. PLEASE!!!!  Something is causing her to do these things and I just don't know...

Meds at home

So, I spoke with the lady from the home health center and the RN case manager today.  After Lauren's surgery, either on Thursday or Friday, we should (I say should, cause we all know...) be discharged to go home.  

I will be trained sometime tomorrow on administering her antibiotics through her PICC.  She has three major antibiotics.  Plus the blood pressure med, iron, benadryl (to counteract Vanc), baby asprin (VA shunt), and Tylenol orally around clock.

Her antibiotics will be administered not on a pump, like in the hospital, it will be through a ball.  I know it sounds weird. It's like a balloon that pumps itself until its complete.  Then I push a flush through the line.

 

Looks like this.  Starts out full, then begins to deflate as the med is pushed in through line.

With all the medications, I was going to be able to get some sleep, like only for 1-2 hour periods all night/day long.  This just wasn't going to work, with having two other little ones.  So, today we are going to start pushing back the Vanc an hour each dose until it's at a more convenient time for home.  This adds another 2 hours to a break.


Two of the antibiotics will be administered through next Wednesday and the third through next Friday.  So, it's not for too long.  They will have a home health nurse come and draw blood for labs and do dressing changes.


Very interesting...  I pray it goes well and that it's a success.  The staff feels confident that I should be able to do this and the picc that she has a newer stronger one.  

Here is a blog post from a parent that administered antibiotics at home through a PICC if you want more info:
http://ourspecialneedslife.blogspot.com/2009/07/giving-iv-antibiotics-at-home.html

The "maybe" Plan

 Lauren's blood work has been coming back good.  At this point here is the plan:

*Re-internalize shunt on Wednesday

*Possible discharge Friday IF...

*I administer her antibiotics (3) through her PICC line at home after training.

I feel comfortable doing this with this specific PICC (like a port), especially after training.  I would have home health checking in...

So, we shall see what happens.

Lauren has been visited by one of her primary nurses when she was in NICU, she brought her some Dean Martin with a CD player to listen to, cause that's what they would listen to together while watching her.

snuggle time

Lauren also got a chance to see Kacey, who was here when she was born.  It was super sweet.

Lauren has a mobile that we got for her while she was in NICU, and has loved it every second since.  I thank Adrianna for going to our house and bringing it up here for Lauren so she can enjoy it, cause she does!

PICC

Lauren was awake for most of the day.  Had a great beginning and middle and a rough later.  Yesterday afternoon her IV went out on her, so off for the search for the IV gooroo we went.  This time it only took three specialists and 7 sticks but she got it.  Then this afternoon it went out again.  After finding no other veins they got the approval to put in a PICC.  It's a catheter that goes in a vein and ends in the heart.  It's safe and one of the best ways to get her her meds.  She had two previously.  Unfortunately, Lauren screamed almost the entire time, ripping my heart out. 

She was very tired, uncomfortable, and sad until just now.  Got her to finally to sleep.  Hopefully sh will get a great night of sleep and feel super in the morning.

I feel so drained right now.  I know that anyone reading this that has experienced a loved one in pain, knows exactly what I feel.  I know I am not alone, but I seriously just wanted to scream!  It's not Lauren's fault or anyone elses for that matter.  It's just frustrating and confusing.  Can't wait to get her healthy and back home.

All is Well

Today is just another day hanging out.  Lauren has been quite sleepy because of the benadryl she has been taking to help her with a reaction to the antibiotic.  She showed this reaction previously a couple of months ago, and they infused the antibiotic over a longer period and it worked, but now it has creeped it's way back into our lives.  Lauren's largest indicator is a rash from a direct line that wraps around her chest and back up to the top of head.  It's strange cause the bottom part is literally a straight line.  I'll try to take a pic later and post it.

Here's more info on Red Man's Syndrome (The reaction to the antibiotic) via the internet:

Red Man Syndrome (RMS) is a commonly observed adverse drug event associated with vancomycin therapy.   It is characterized by a sudden and/or profound drop in blood pressure, a maculopapular rash, angioedema, pruritus, erythema, wheezing, or dyspnea .   Any or all of these effects may be seen.   While rare, changes in blood pressure have been severe enough to produce cardiovascular collapse. The reaction may occur within a few minutes of starting an IV infusion of vancomycin or occur near its completion; the skin rash typically subsides several hours after completion of the infusion.   RMS can cause discomfort to the patient, interrupt therapy, and inappropriately label a patient as being allergic to vancomycin.

RMS is most frequently seen with rapid intravenous infusions, but it has been reported with slow intravenous infusions, intraperitoneal administration, and oral vancomycin use.   While the precise causes of the cardiovascular and cutaneous reactions to vancomycin are unknown, histamine is believed to mediate the syndrome.   Various studies have demonstrated that the amount of histamine released correlates to the overall severity of the reaction.

Investigators have conducted studies to compare the effect of different size IV doses (500 mg versus 1000 mg), the use of antihistamine pretreatment, and the impact of extending drug infusion times.   Recommendations to minimize this adverse effect have included:   limiting vancomycin doses to 500 mg, pretreating all patients with antihistamines, and administering all vancomycin infusions over 2 hours.   However, these recommendations may not be practical for all patients. 

Lauren had some more blood and CSF drawn for labs.  She also had a cardio-echogram to see if when the catheter was too far in the ventricle in heart last month, if it happened to have caused some scar tissue or debris...where bacteria could easily accumulate onto.   ID team and neuro just really want to make sure Lauren's body is perfect before re-internalizing shunt. 

PS Obviously, you noticed the new look.  I felt like adding a touch of sunshine to our lives;) 

Another day...

Lauren is doing wonderful today.  Blood culture came back from yesterday as positive still.

Had some fun...the wrapping around the IV is so big and clumsy...

Oh, I crack myself up, hopefully someone else too or you all are just going to write me off as crazy!

This is the surgery incision

Cutie

Adrianna came to visit today.  It was great catching up!  She made Lauren a cute little anklet.  Now she is all blingy.

Pain med

So, if you remember Lauren had that one horrendous event post op with loads and loads of pain-all to find out it was a mis-dosing error on the anesthesia down on surgery, so we spent hours trying to catch up on the pain. So, of course each time we go to surgery I find it a major duty of mine to ensure that her dosing for pain med is on target.  So why is it every time I speak of this event, very nicely may I add, to the anesthesiologist, they look at me like, "That's impossible, we would NEVER get it wrong."  sigh.

So, things are a little different in Pod A where we are now than from NICU.  1) a doctor isn't there at your beck and call.   Especially after surgery following you back to your room, making sure everything is great. 2)  They don't do pain meds the same. This is my conversation earlier today:

Me: So, I just want to make sure Lauren has her fentynal (pain med) all ready for us back in her room when we get back from surgery.

Nurse:(blank stare, moments elapse)...Oh, well we don't administer fentynal here.

Me: OK, so what do you do?

Nurse: (confused) Well, it would be something like morphine?

Me: Alright, will that be pushed through IV, or a drip...

Nurse: I am not sure.

(At this point I am frustrated by the lack of concern fro my baby's well being...like pain management isn't that important.  I am sure this is not how she really felt, but she certainly wasn't convincing me at this point)

Me: So...how are we going to help her?

Nurse: Well, we don't have a doctor here in our pod that could order that pain med, so it would have to be her doctor (neuro surg).

Me: Alright, I 'll be sure to talk to them ahead of time to make sure orders are written in advance.  It's just really important to me.

Nurse: ok... (la-ti-da)

I know I am being harsh, and she really is nice, but geez!  Some help here!  I did talk to neuro surg before surgery and they said they would take care of it.

Surgery went well.  When I got to recovery she was crying and I asked about pain med.  She said she gave her a little dose 15 minutes before and then implies that she is crying because she is just hungry.  Um, no.  She is not rooting, she is in pain, please give her some more.  Which she did, then had to wait a while to get back to room, thus allotting time for the med to wear off.  When we got back up to room, ten minutes later, as Lauren is obviously uncomfortable I ask what kind of pain medicine they have available for her.  Which the nurse responded, "we don't have anything to give her."  Again, like it's no big deal.  "Okay, so....hmmm.  She really needs something."

Turns out orders were written late, about forty minutes later she got orders for something to be administered.

Lauren is currently trying to sleep and rest.  Can't wait for her to feel great and be smiley.

Again, sorry for ranting-just one of those moods I guess.  I'll try to promise to be better tomorrow.

Seriously, want to thank all the prayers that were sent out today during surgery and recovery, they helped her get through it again.