new development

Lauren began to run a fever-101.3 tonight...  Did blood work and her CRP (inflammation indicator) was 40 something.  They want it between 0-10.  It was at 2.2 the other day.  

I have a nasty feeling that something is brewing...  Just don't know what yet. Crap.

Started back up on antibiotics. 

Nothing new to report.  Waiting to look at cultures to see if anything develops.  Still gets fever and sick.  BUT, she did make a small bowel movement today, so that was good.

updates

Renal ultra sound and other were normal.

She began to put out large diapers, along with the swelling going down considerably.  She looks so much more like herself.

Only problem is that every time she feeds (breast milk or pedialyte) she throws up.  She's been doing this since Sunday evening.  She was sick earlier for few days due to shunt, but this time her shunt has been working great.

Even though she is getting sick rather often, they transferred her to another floor cause she is no longer considered to be in critical condition, which I agree.

They completed an x-ray today and found that she has an ileus, where her bowels are not wanting to move along.  They believe it to be related to going to surgery.  Guess this happens.

Only problem is that for her current condition the only thing you can do is wait.  The bowels may start moving in a day or 12????  Who knows.  I am encouraged to try to keep feeding her small small bits of food so that it will signal her bowels to move.

I'll keep you posted.

Sunday June 25th

It was a very long night.  Lauren received round the clock incredible care.  These all made me feel so much better.

Surgery went well.  The pediatric surgeon who placed the catheter said that it was tough and took a while, but got it placed in her jugular.  That way it has a straighter path to heart to drain, rather than having a bend like the previous.  the neuro surgeon on call, said that things went well on his end too.  He could not believe how much pressure she had in her head.  He said it was quite impressive and could not imagine how awful that must have felt.

Lauren has been sleeping since surgery.  She has opened her eyes tow or three times briefly, but for the most part is OUT!

She still has a considerable amount of bruising in the head, neck and chest.  She also remains swollen, but we are anticipating it will go down soon.

She is not urinating as much as we would like and they could not get her cathed to drain.  Just watching very closely.  I am actually concerned at this point, but am aware that it will probably be OK, just I can't feel at ease about it.

She had a renal ultra sound and another to find and monitor the flow to her main arteries that run through her lower tummy to her legs.  They said they weren't really popping up too well on CT, so they just wanted to make sure they were OK.

Transferred to PICU

Last night after they tapped her shunt and gave her some TPA, they moved her to the pediatric intensive care unit.  Here she will receive incredible care with all kinds of doctors and meds and tests quickly accessible and ordered.  This gave me so much peace of mind.  It's what I wanted and what Lauren needed.

They ordered a head and abdomen CT when we got here because she was so pale.  It indicated that she had blood in her ventricles in the fluid space in her brain.  Apparently the TPA thinned her blood too much and her cell counts dramatically began to fall.  

She received 3 blood transfusions last night and multiple other meds to help her clot.  It appeared to do the trick because her blood work just came back as not too thin and safe to operate.

It appears that there is more than likely a kink in the catheter going into heart that's stopping the fluid from draining and it's backing up into her head, but also that side of face.  The bruising is also from the pressure, but became so evident too when her blood thinned out too much.

She will go to surgery shortly.  They are going to leave the shunt part in brain, but replace and reroute the catheter and will put it in a little bit more shallow in the atrium this time.  We are optimistic that this is going to help her heal and fix her.

I am so thankful that I pushed for things to move forward and now.  I can't imagine if she had been injected with more and more TPA and taps till Monday, how her blood and body would have reacted.   It scares me!  

In all honesty I was so worried for her and it became VERY obvious to the doctors that something immediate needed to happen.

I'll post later today or this evening and let you know how surgery went and how Lauren is recovering.

I thank you all deeply for any prayers, this is certainly a very trying time on my family, and tough on our Lauren.  She is so amazing, it fills my heart up to think about her preserverance and strength.

XOXO

Hitting the Wall

Sorry, I didn't post yesterday.  When I went to last night I had no network connection...

In the morning they felt that her head was still too firm.  Early that morning Lauren had thrown up again.  Which is a huge sign that there is too much pressure in her little head.  It was obvious to me-The shunt is not working!

Neuro came by around noon and confirmed my thoughts.  After an MRI it indicated that the part in the head/brain area was good.  Therefor it had to be the tip of the catheter.  Two possibilities: 1) There are blood clots at the tip, which is sometimes common in surgery.  To fix this they would tap her shunt to relieve the pressure, then inject TPA, a blood thinner, to help break up the clots.  2) The tip of catheter is not exactly placed, which would require surgery to adjust.

They went with trying to inject TPA and pulling fluid first to see if this would help.  Lauren felt much better after they relieved that pressure.  But, later that night the pressure had built up again.  From midnight for a few hours all Lauren did was cry and get sick.  It was such a mess and heartbreaking to see her like that.  The neuro surgeon on duty came immediately and repeated the TPA, and tap procedure.  Which did feel better on her head, but she still continued to get sick until 3:30 am.

All morning she was very moody.  Was not getting sick but would scream and was hard to console.  Around noon I realized that her shunt site was very swollen, all concentrated to that side of her head.  Her ear was sticking way out, her neck, where the catheter was routed, was black and blue and her right side of chest, where catheter is, was swollen.  I wanted neuro now!! 

When he had gotten here, I had had it.  I was at my breaking point-HIT THE WALL!  He was just going to tap the shunt, inject TPA, and let it be.  I began to nicely, but very firmly in between hysterical crying demand that she get fixed now.  More x-rays... something to determine surgical route... We were not going to wait 36 more hours with her like this till Monday-like they wanted.  (They wanted to wait till Monday because Dr. Tulipan was off, and they want to preserve the original surgical team, making it the same).

Even though I was sobbing, he took me very seriously.  Said he would call the pediatric surgical team (they are the ones that insert the catheter-this is the part that would need to be revised) right away.  They did relieve her pressure and it made her feel tons better.  Swaddled her up and she was able to sleep for a few hours.  Unfortunately, when she woke up she was hysterical again.  Every time you barely move her...  Her right side of face, ears, head, chest, and neck are so swollen.  My poor poor baby.  Ummm, Neuro!!!

They ordered a STAT shunt series x-rays and another MRI.  Right when we were done with MRI, she threw up again.  But we swaddled her up and she slept a little bit.

Then she woke up about thirty minutes later and threw up again and turned ghostly pale.  Suddenly she has a bunch of nurses checking her out.  Her vital signs are all checking out...  Neuro surg is currently in the room (while I had to step out) and are tapping shunt again and giving her more TPA.  He did mention that the MRI and x-rays indicated that the shunt in the head is working correctly and their is a lot of fluid and swelling.  The catheter needs to be re-adjusted.  For whatever reason it just is not working. 

My heart is just being torn apart.  This is one of the worst moments through her hospital journey.  She is just so pitiful.  I ache for my little girl.  I am confident that she will pull through this with her incredible strength and she will be smiling again.

It looks like she will go into surgery tomorrow morning.

I'll let you know more later...

Below are some pics.  You will see the swelling.  It's hard to capture in the pictures and I took these earlier before it was more swollen.  

you can kind of see how her neck is black and blue.  It's dark purple now.

Do you see how her ear is so swollen it's sticking out?  Cheeks and neck are too and all behind era around shunt.

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.

Things you may not know...

1.  Lauren likes to grunt and whinny just like a horse.  Especially as she is sleeping and is attempting to give a great big stretch or wake up.  Perhaps she will be the next horse whisperer.

2.  She burps loud.  I mean REAL loud.  Like a 14 year old boy trying to impress his buddies.  Let's hope she grows out of this one!

3.  This one's funny, I know it shouldn't be, but it is to me.  When she goes poo or passes gas her bag inflates and it can sometimes be heard across the room.  Giggle, giggle.  I remember when the girls came to stay with me at the hospital for a few days and Lauren was passing lots of gas and I said, "Look who's mommy's tooter pooter."  Well, you can imagine the girls thought it was so funny and thought that should be her nickname.  "No girls we can not nickname your baby sister after poo...sorry."  

4.  Going with the nickname, we decided on "little butterfly" since that's what kept popping out of my mouth when I would talk to her.  The girls were very thrilled and convinced that this was the "one."

5.  When she smiles, it melts me.  Totally and completely.  I am afraid that if she continues to smile this way, she will get away with too much as she gets older.  Scary, very scary.  Love, love, love.

Well, I thought this would be nice to share since so many following and reading are either far away or have not yet gotten the chance to meet her, so now you know a little more about my little butterfly!

IV please.

Lauren began the day feeling great. She was handing out smiles like they were free...  It's so sweet to see her when she does this. 

This afternoon she began to feel a little cranky...and didn't eat very well, but pulled through.  She had a visitor, Keisha and Sha (thank you)!

Lauren has always been a difficult stick, so when her IV went out, I began to worry.  Five IV specialists, many sticks, and 5 hours we just got an IV.  She really needs her meds, which are behind and her fluids since she can't eat after midnight due to surgery tomorrow.  Let's pray that the IV stays and works for a while.

Someday people will point at Lauren and say, "You see that girl, now that's the embodiment of strength!"

It was really emotionally exhausting to see her go through all those sticks, knowing she has been through the same thing many many times before in her little life.  Somehow, she perseveres! 

Night all!

Staph epi

 So, they got a spcific germ to grow.  It looks like a staph infection.  It's very common, especially in hospital patients.  The good news is they know which antibiotics does kill it (many can't) and she was already on one of these.

A very loose plan of treatment right now:  Externalize shunt on Monday.  This type of staph infection loves to grown on objects like catheters, which she has going from shunt in brain to heart.  Once blood comes back clean (about a week???) they will re-internalize her shunt, then have one week of post op antibiotics. 

Hopefully this plan works and it doesn't take any longer.  Good news is that Lauren hasn't had a high fever in last 12 hours.  She ate decently this morning, got a bath, and is peacefully resting.  She looks so cute and snuggley right now.  I am sure her sisters would be trying to kiss her like crazy right now if they were here.

For more information on this type of infection I found this link to be helpful-not too much medical lingo:

 Staph epi details and more information

As far as a room, we got one about 11:00pm last night.  We are right next to NICU on same floor in Pod A.  It's a really great set up.  She has a decent nurse to patient ratio and a care partner.  We also have a large room with a bed/couch, bathroom, TV/DVD, fridge, storage...  plus the visiting restrictions and in room eating... is much much better and more convenient.

Bloodstream Infection

Wednesday afternoon Lauren began sleeping quite a bit.  It's so weird how a parent suddenly becomes obsessed with the mount of sleep her baby is getting.  Watching her so closely and while holding her taking that little feel to her head, making sure it's not to full...  it's such a constant worry, but the joy of having a baby like Lauren overcomes any of these differences.

Thursday morning about 2:30 Lauren woke up crying and continued to do so for hours and hours.  She wouldn't nurse and I barely got some milk in her through a bottle.  she has such an amazing temperament that I knew something was up, small or big-my little one had something wrong.  She began to run a fever later that morning and I took her to her doctor.  They checked her ears, throat, breathing, and urine.  They all came back clean and clear.  At this point we decided to call neuro, and they advised us to come on to Nashville. 

At 3:00 yesterday we were admitted into the hospital er at Vanderbilt.  They ran a bunch of blood work, did an mri, took x-rays, and tapped her shunt.  It appears that Lauren's spinal fluid is not infected, however her blood is.  Because her shunt goes to her heart where the blood pumps they are going to externalize her shunt until the infection is gone.  They really don't want the infection to spread to her spinal fluid.  They will then re-internalize it and will have at least a week of post op antibiotics.

With an external drain, they must remain flat and level with the drain.  She has been on two before, so we are aware of the challenges they present.  I fear that Lauren is used to being up and mobile and now being flat... most of the time may be frustrating.

We are just going to have to take this one day at a time.  The good news out of all of this is that her cultures are actually growing a germ; where in the past they didn't and they had to generalize her treatment.  Knowing which specific bug is getting busy will help the infectious disease and neuro team come up with a specialized and specific course of treatment and hopefully knock this thing out quickly.  There really is no telling how long it will take to get the infection, so it's a wait and wait game.

I wish I was able to post more about her life at home, but for now-the hospital it is.  I am very thankful that we atleast got to spend some quality time together as a family.  I look am looking for strength and praying for clarity that I can better understand and get through this experience.  Thank you for the support that we have already received.  I will need a lot of help with my other daughters, so I thank those that are offering to help-it means so much!  

I'll keep you all posted after surgery... and into our new room...  XOXO

UPDATE: surgery will now be most likely postponed till Monday.  Still waiting on patient room-they are extremely full.

Living life with Family and Friends

During our first couple of weeks we layed low.  We really wanted to give Lauren a chance to adjust to the world and spend some quality time together.  we did get a couple of chances to go for a walk on the walking trail, and took big girls to pool.  

hi

Visitors from Georgia

With her first weekend at home Lauren was visited by her Aunt Christine and her cousin Ashley.  It was such an amazing weekend getting to catch up and watch them with my little butterfly.  Christine gave me such amazing emotional and spiritual support during all of this and I knew that she was so excited to hold and touch Lauren.  Ashley was so sweet and excited.

First time with Lauren

The girls-cousins and friends for life

Home is sweet

Getting ready to leave hospital

In the car seat for first time-getting ready for long drive!

It was so exciting getting Lauren home.  Of course her sisters screamed, squealed, and giggled for days.  I believe Lauren is on kiss #million from her sisters.  It's amazing how involved and concerned they are with her.  They discuss things so openly with me about her condition, scars, and ostomy. 

The day after we got home we went to her primary physician who did a total check.  All along her hospital journey they had been sending faxes to her doctors office so they knew exactly what was going on...when we got there, which was refreshing.

On way to doctor

Later that day me and the girls gave Lauren her first bath at home.  She hated it at first, but then got the hang of it and really enjoyed it.  Peyton helped me wash, while my little photographer took tons of pictures.  Only a few are here for you (Taylor really does go crazy with the camera:)

After her bath her nanny and Aunt Gina came by for a visit.  It was so nice to have them hold Lauren.  When they saw her in hospital she wasn't able to be held or was on an external drain.  She just stared and stared at their faces, then would crash out in their arms.  Very sweet...  Linda and Gina helped out tremendously with the girls while I was in the hospital.  I will forever be grateful for their generosity.

with nanny