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