Friday, December 2, 2011

Article

A friend posted this article on her facebook page.  It was well written with great pointers for me and any other parent of a child with a disability.

" The kids don't know fear unless we teach it to them. It is only fair to let them explore life on their terms, without hesitation and without fear..."

Monday, November 21, 2011

A.F.O.s

Well, we went Friday to pick up her A.F.O.s.  They actually look pretty cute, we were expecting something more bulky...  Even my husband said they were "cute"-a word that is not usually in his vocabulary.

She will have her foot correction surgery on Feb. 13th.  She will be casted and will wear special shoe braces with a bar for a while, then get some new A.F.O.s.

Just moving right along!




Thursday, November 17, 2011

OH MY GOODNESS!!!!!

Since Lauren was a little thing, she has always tried to sit herself up while you held her on her lap.  She LOVES it. 

Well, with those heavy and sturdy casts on her legs it made it easier for her to try and sit up on her own for little bits at a time. 

Today, she has no casts on AND she sat up on her own!!!

You can imagine my excitement and surprise.  Oh, I could just squeeze her, I'm so proud of her!  We were told not to expect this for another 4-6 months-I just love it when Lauren proves us wrong this way!

I know that she has many more things to accomplish and is currently working on, but today we celebrate her achievement.






Thursday, November 10, 2011

PT & OT

Lauren is now getting her Tennessee Early Intervention services weekly for an hour.  During these sessions we talk about her progress... and make plans on her future and work on her developmental things.  It's working out nicely and Lauren appears to enjoy the extra attention.  Although, her time allotted is typically during a nap time, so she often gets very sleepy towards the end.

Lauren has also began going weekly for half an hour to a physical therapy session one day and an occupational therapy session another day.  It's been really nice to be able to move forward with her development.  I get a lot of feedback and ideas on things that I can do at home with her.

It is ABSOLUTELY amazing at the things that we take for granted with our healthy children.  I never once thought about having to teach my other two daughters so many typically easy developments and milestones.  But with Lauren its so many things that really have to be intensely targeted and worked on.  It is honestly a completely different life.  Lauren has already made some progress and I am so super proud of her hard work and the way she tolerates things.  She is so adorable, sometimes she even pants from exhaustion after an exercise. 

She got her results back too from her PT on the Peabody test.  It was a little surprising in some areas, and others weren't too much of a shock.  It just really leaves us a lot of room for improvement and progress, which we will work really hard for.  She has some really great goals set ahead of her and I look forward to her achieving each of these and some nearby milestones.

Results:
                        Age Equivalent             Percentile
Reflexes           5 months                            25
Stationary        6 months                            37         
Locomotion     2 months                              5

Lauren does wonderfully with her core strength.  She absolutely LOVES to sit up, and for a long time we have been sitting her straight up with support.  Over the past few weeks Lauren has really gone forward and has began to sit up on her own for a little bit at a time.  I am soooo incredibly pleased and proud of her.  The PT is very surprised and happy with this ability.  We just need to work on other things and keep her moving forward.

Holding her upper-body up!

Playing with grandma keeping her body upward.  What a strong little girl!

Wayyyy behind

I really want to apologize for getting so behind on Lauren's posts...  Yes, I have been a little busy doing things, but honestly, I wasn't quite in the mood or place to write.  That sounds terribly awful, but I would think about it all the time and just would not be able to follow through.  Though the last few days I have felt better and much more motivated to get things back on track!  YAY!!!

So, lets hope that things continue to flow and that I am able to share the joys and such with all her followers!






Halloween

Halloween was so great with all the girls together. 

Costume idea began with Taylor wanting to be a peacock, then her sister wanting to be one too, so we just HAD to make Lauren a baby peacock.

Peyton

Taylor




Aunt Gina and Nanny

Shunt Progress

OK, so Lauren is notorious for shunt problems.   This is how her summer went...

Shunt malfunctions:

June 26 - repaired with surgery
July 9- TPA
July 22- TPA
August 11- TPA

sooo when her shunt malfunctioned AGAIN on September 6th, the surgeon and I decided that it was time to try the abdomen again.  So, on September 7th (6 months old)  Lauren had her shunt placed back into her abdomen with no problems.

AND guess what?????

It worked!!!!!  8 weeks later and I can tell you she has been malfunction and infection free!!!!  We are so thrilled for her progress and look forward to many many more weeks, months, and years of things going well for her!

Feet

Lauren's feet have made sooo much progress.

Before: Her right foot is definitely clubbed.  Her left foot is inverted. 
and now they look soooo much better.  I don't have a picture because of the casts on them, but when we go to change them I get to take a peak.  I'll post some soon though next time I go.

Through xrays and exams Lauern has a vertical talis  (spelling?) in her left foot.  Which means that a bone on the bottom of her foot grows in a downward motion rather than flat.  To fix this they will straighten and pin the bone in place through surgery.

The plan right now is to go to surgery on Feb. 13 to have the tendon release surgery on her right foot, and have the left foot bone repaired.  At the same time she will have urology go in and do their exams of her anatomy.  This saves Lauren from an additional trip to the O.R.

In the meantime, her feet have been casted, changed weekly.  On Friday the 18th Lauren will be placed in her A.F.O.s instead of casts.  This pleases me VERY much.  It's difficult to make much progress with her legs and feet casted AND I am looking forward to Lauren's comfort being increased.  Regardless of feeling...it's gotta be awful to have casts on. 

Urology

I went in September to discuss Lauren's internal anatomy in relation to the fistulas that she has internally between her rectum, vaginal and urinary tracts.  This is not too uncommon to have one fistula with children who are born with an imperforate anus.  But Lauren has 2 or 3, which is highly unusual. 

 So, the plan is to put Lauren under (anesthesia) and take a camera to explore her anatomy more closely.  This will help them and the general surgeon to make a better treatment plan for her.

It still looks as if her colostomy will remain permanent.  Her colon is located rather high and they aren't sure once they make the repairs to the tracts making each one separate, if they will be able to make one for her rectum.

It still saddens me, but I am able to be more positive now that I have had time to deal with things.  It's definitely better to have that than her have to wear diapers...  But who knows what they will be able to do in 10-15 years from now medically speaking.

I also learned more about the bladder functioning.  It does two things: Holds urine and releases urine.  Now, we know that Lauren is able to release her urine, which has been wonderful since we haven't had to catheter her...  BUT what we have been noticing is that Lauren leaks ALL the time, meaning her urine comes frequently, which probably means that her bladder can not hold urine.

This presents a whole new problem.  The urologists assured me that they would do everything they can to make sure that when Lauren starts school, we will have her urinary issues under control.  Something will have to be done to fix this, but at the time it is going to be addressed later.

Spina Bifida Clinic

Lauren had her SB Clinic in late August.  It was a good experience overall.  I wasn't sure what to expect.   

They checked her in and measures her head circumference, weight, height, and blood pressure.  She then went into a room, where we stayed for the remainder of our visit.  This made it so convenient.  I don't know why, but I imagined us moving to different offices to each doctor.

She saw Nephrology for her kidney and high blood pressure.  The hydranephrosis (swollen kidney) was clean and clear and was looking great.  Doctor is hoping that she will grow out of her blood pressure problems, but she will continue to take her medicine for it and will continue with check ups.  

Her Neurosurgery doctor was glad that at the moment Lauren was doing well, but was concerned with her recent and frequent shunt malfunctions.  He said that if they continued, they would probably have to consider performing another shunt revision...

Ortho doctor was pleased with the progress she was making with her clubbed foot and the left foot as well.  She will continue with serial casting.

Urology said that he would perform a urodynamics test around a year old.  This test will tell them how her bladder is functioning.  Right now, her plan is working and emptying on its own.

I spoke with a nutritionist briefly...

We did get an opportunity to visit with two of her nurses from the parinatology office before Lauren was born.  They really enjoyed getting to see her and it was nice to visit.

Sunday, September 11, 2011

Life with a baby

  • If you have a dog, mailman, and a baby: I guarantee you that your dog will bark while the baby is sleeping at the same mailman that has been coming the last 10 years (but only if baby is sleeping).
  • When the baby wakes up before the sun and I am nursing her in the bed, I wish my husband would wake up for one little second and acknowledge that "Hey your up early-thanks," then off to sleep again.  Yeah, don't think this one is going to happen.  I'll just try not to choke him when he says, "WOW, can't believe she slept through the night."  To which I will reply, "No honey, that was you who slept through the night." 
  • If your baby has a colostomy, they will soon learn to play with the bag, which of course contains an atomic stink bomb that has been declared a lethal weapon in twenty states.  And when your baby goes to grab it on the changing table and you sternly say, "No," and she replies with the cutest, biggest smile EVER, you will quickly forget the stink and let it be.  NOTE TO GOD: Please let me grow tough skin when this cute smile crosses my path again when my little one is being a stinker-amen.

I'm sure there will be more to follow one day-sorry, just had some random things to go off my mind:)

Wednesday, September 7, 2011

No repair

Lauren was born with an imperforate anus, without a way to use her bottom.  On her second day she was given a colostomy so that she could use the bathroom.  It's been in the plans to wait for Lauren to get a bit bigger, create a bottom, then another surgery to take back in the colostomy-TADA, and she would use the bathroom like so many others!  This was such a simple plan, and honestly gave me little to think or worry about.  Until a few weeks ago...

Lauren went in for a lower GI contrast x-ray (colostogram) that would show the surgeons where her colon was exactly located (this would be pulled down to surface of skin where they would make her bottom...) 

I got a call from the ped surgeon with the results.  Lauren has several abnormalities inside her lower abdominal organs.  Mainly, she has many connections (called fistulas) between each of her tracks (vaginal, urinary, and rectal).  This means that any fluid/object that passes from one can go into the other.  Not, so good.  So, Lauren will require repairs to the urinary and vaginal tracks.  Urology will first go in with a camera through her urinary track and see in more detail what's going on.

The part that hit me like a ton of bricks was that Lauren may never get her bottom.  Her anatomy is so unique that it may be impossible to fix.  Not only that, they are feeling that she may not even have any control over her bowels because her back lesion was so damaged.

I spent the whole day crying.  Mourning for my sweet pea.  The weekend began to feel a little better, but still could not fight those nasty little fears.  My husband said that I need to take one day at a time and to not worry so much.   Perhaps, this is great advice and I should take it.  Though, I can't help, but think about her being a teenage girl.  Will she care if others know about her colostomy, will she want it to be a secret and if so will she be able to hide it?  Will her clothes fit her OK, will a bowel movement sneak out and make a loud noise in front of others (because it does now, and the bag amplifies the sound)?

I can't help to feel sadness.  It may not be warranted, it may not be necessary, but I fear that day that she comes through the door with tears running down her soft little cheeks because someone didn't have enough human decency to not tease or outcast her because of her unique physical differences.   I wish that I could fully trust humankind to use their hearts and to be compassionate.  Sure, many will be understanding, but unfortunately their will be many that will lack basic human kindness.  Especially for those that stand out. 

I just know that I have a HUGE job of raising all my girls, especially Lauren, with enough character to handle life and the potential bad days.  I pray that each one of my girls has a full kind heart, intelligence, wit, humor, and faith.  For Lauren I pray that she additionally has gusto, fistey-ness,   Maybe then she is more able to fight off those unkind words, weird stares...  I pray that she will see the beauty that I already see in her, and allow that beauty to lead her through life.  Because I am certain that her life will be filled with joy and be surrounded by people that love and adore her.  I need to put my fears and sadness behind and allow Somebody else to take control.  

FOREVER

I know, I know, it's been forever since I have posted.  So sorry.  But, good news is that I now have wireless internet at home, so I can begin to update her blog.  I have so many things buzzing around in my head, ready to make it from the keyboard to this screen.  So, be on the look out in next couple of weeks for some things.

Right now we are currently back at the hospital, but I believe that this time it's a good thing.  Lauren had the following things happen:

7/9 shunt malfunction-successfully treated with TPA injection (broke up clots at end of catheter in heart)
7/20 shunt malfunction-successfully treated with TPA injection
8/11 shunt malfunction-successfully treated with TPA injection
9/6 shunt malfunction-successfully treated with TPA injection BUT, this time they decided to do a little more. 

Earlier today Lauren underwent a shunt revision in surgery changing her VA (heart shunt) back to a VP (to her abdomen).  We are all rooting that this keeps my little butterfly from getting sick and back and forth between the hospital.  

We are in our room now, and Lauren is sleeping.  I think the next few hours she will be in and out of sleep and some discomfort, but I anticipate her to make a speedy recovery.  So much that if all goes well we can get out of here tomorrow and back HOME!!!!  Where her big sisters are anxiously awaiting.  

Thanks to everyone who sent some prayers up high for her recovery and safety, we certainly appreciate your generous hearts.  Love to all!

Thursday, July 28, 2011

HOME

Sorry for delay in blog posts-my home pc internet won't load my blog and I don't have wireless internet at home, so I have to wait till I am out and around wifi... Need to get this fixed asap.

Thanks Jamie for the thoughtful package of goodies!!!  And to everyone else that has sent such nice words for our home coming.

Things have been going really well in the McGinnis household.  Lauren has adjusted fantastically.  Her sisters adore her in every way! 

We have been quite busy traveling to doctor appts... and getting her casts to repair her feet.  ut still, wonderful.

Here are some pictures...




and some with her sisters... (please excuse the outfit choices-these were random moments, lol)


Wednesday, July 20, 2011

July 18th

On Tuesday (12th) Lauren went back to Nashville to get more casts done for her serial casting to repair her feet.  She did super.  I was afraid it would be bothersome, but she really hasn’t shown any signs that they hurt...

It was a nice week transitioning Lauren into home life.  Very quiet because her sisters were in Georgia visiting family (“Aunt” Camp).  They had a blast visiting with their cousin-going to a roller skating birthday party, aquarium, swimming, getting a pedi, jump houses....  So, when we were reunited on Saturday, the girls zoomed right past me straight to Lauren. 

Very nice to all be home. 

Moday July 11th

We were discharged Thursday afternoon.  Woohoo!  Getting home was wonderful, however turning back around the following day because of a shunt malfunction was not.   My middle child, in a classic tantrum style, stomped her foot down and yelled, “We never get to keep Lauren at home!  It’s not fair!”  I agree.  

Late that afternoon we were admitted into er.  After imaging and tapping the shunt they were able to determine that the shunt catheter tip was clotted.  After much persuasion they injected 1 dose of TPA.  Believe it or not it worked!!!!  The next morning her head felt great.  They kept us a day for observation and we were back home Sunday evening.
  Ahhh, home!!!

Thursday, July 7, 2011

Homeward Bound



We are getting ready shortly to be heading home!!!  Lauren gained weight last night and is eating great.  Doctors are having us to check in for weigh ins with local pediatrician. 

We are so stinking excited!

Lauren is 4 months old today!!!  Oh, happy day.



Tuesday, July 5, 2011

180*

HOPE

YOU HAD


A WONDERFUL




INDEPENDENCE DAY


FROM OUR FAMILY TO YOURS XOXO





We had a great visit together this weekend.  I missed my family so much!!!!  It was super sweet to see the girls with Lauren again.

Peyton getting in some snuggle time

Taylor hanging out watching Lauren
When  they got here Saturday my husband looked wiped.  So, I took the girls out and about to some stores for about three hours so he could rest in the bed here in the hospital room.  I got back and asked him if he had a nice nap.  To which he replied, "Not with that IV pump going off every twenty, thirty minutes, people coming in and out..."  I looked at him and gave him a pat on the shoulder and said, "Welcome to my world, except it's 24 hours." heehee.  I loved the look on his face.

On Sunday they took Lauren off the antibiotics and fluids since her blood work and cultures were showing up negative.  Sunday turned out to be a pretty rough day for Lauren.  I had left with Taylor and Peyton to go to hotel to get a nap.  Which of course never really happened cause that's nearly impossible to do in a small room with two very active girls.  So, we left daddy with Lauren.  When we got back he was a bit frazzled, I guess Lauren kept getting sick on him.  Sure enough, after about five minutes of me being there she got sick again.  Needless to say, they put her back on the fluids. 

However, at about 9 that night Lauren's behavior began to get better and she was able to keep her night time feeds down.  She woke up Monday morning super happy, and stayed this way most of the day that she was awake.  She only got sick after one feed and was able to increase her feeds a little too.  The girls decided to give me a pedicure and daddy a new hairstyle!





 Today has been even better.  Made a total 180!  Spinal Fluid came back for a final result of NEGATIVE!  This is excellent news.  She is the happiest she's been since we've been to the hospital and is eating tremendously better, all while keeping it down.  I am so proud of my little warrior!!!!  Doctors know that the ileus caused Lauren great discomfort and was behind the excessive vomiting.  They are attributing her fever and soreness to possible virus, since nothing was found in cultures.

She got another casting today, this time purple...



Lauren lost a bit since we've been here, especially this past week.  So, we are going to supe up some expressed milk twice each day to try and get her back on the weight gaining cycle.  She has always, when feeling well, been an excellent eater and a little chunky monkey, so I am sue that she will be back to herself sooner rather than later.

We are going to follow up with a nutritionist and have her weight monitored by our pediatrician at home closely for a while.  I am not sure when we will be able to go home, but my guess is if she continues to do well, very very soon.  

I can't help but believe that her recovery had a huge part to do with the hundreds of prayers being sent up into the heavens for her.  We are eternally grateful!

I wanted to say thank you to a few people who have really helped us out the past 3-4 weeks while here:
Linda, Gina, Lyndsey, Marsha, Adrianna, Kacey, Keisha, and Sabrina.  It truly is a comforting thought knowing that we have such great friends that we can trust and count on in such times of need.  PS Thanks to Erica and Sheri for making a quick trip down here last week. 



Saturday, July 2, 2011

Family Time

Waiting on my adorable big girls and their daddy to get here for the weekend.  I missed them something terrible!!!!

Blood work came back with no blood infection, as did the urine sample.  CT scan looked great also.  Waiting on CSF, super preliminary looks OK, but it honestly takes 24-72 hours.  I know of three times they have told me same day it was drawn, "Oh, it looks good.  Nothing to worry about."  Then a day or two later, "Well, actually something is in the CSF and it's an infection."  So, I really want to hit that 72hour mark before I celebrate that it's not in spinal fluid?

It's good that those results came back good, but still frustrating cause we still don't know for sure on things.  They took another abdominal x-ray earlier-waiting on that.  

Right now, she is sleeping.  She is sleeping too much-and I KNOW that this is usually not a good thing.  Who would have ever thought we wouldn't want the baby to sleep too much.  Funny.

Anyway, when I find out anything significant I'll post.  I'm going to try to enjoy my time with my family.  Hey, I may even get my husband to spend the night with Lauren in room, while "I" go to hotel with girls and get a full night of sleep! heehee.

Also, I wanted to again thank you all for following and being so dedicated to following this journey.  Your thoughts and prayers make such a difference to my heart and gives me some peace.  It just reminds me that I am not the driver.  I need to trust in God.

Friday, July 1, 2011

After shunt revision.  Taken Tuesday-looks tons better here than was.

Hello!

Tuesday in my 20 minute happiness time.  Didn't last long and came out of nowhere, but was worth every second seeing her like this.


My cast fro clubbed foot.  Put on Tuesday morning.  Will get one on left once picc line is out.  Changed once each week for 6 weeks.

Going CooCoo

Unfortunately to report nothing has really changed too much.  Just waiting.

So, they tapped the shunt today to rule out infections... before trying to move forward with determining treatment...

They currently have A) Blood culture, B) Urine culture, C) Spinal Fluid, D) Blood work for kidney functioning, and (just this moment) E) CT Scan

I have decided that beyond any shadow of a doubt it is quite possible to go crazy in a hospital.  Surrounded by four walls, that seem to get smaller each and every day.  What is that you are thinking?? "You need to get out of the hospital and take a break!"  That's a great idea-EXCEPT...  I can't stand the thought of Lauren laying in her bed feeling awful without being close to her.  My mind goes crazy obsessing, "What if she throws up and begins to choke on it and nobody notices..." (we're not on monitors now and yes, door could stay open, but????) etc...

I felt myself getting extremely frustrated again today.  "Let's just let the baby keep getting sick and wait-no matter how long..."  I know that this is not what the team is thinking, but this is absolutely what I felt like.  I just kept thinking over and over what is going on?

Her head feels great-not too much pressure.  So you can pretty much rule out malfunction.

It could be a shunt infection???  I don't know why, and I may eat my words, BUT I don't feel like it is right now.  My husband is putting money on this one though.

Sure the ileus can cause vomiting, BUT this much and ALL the time????

So, I made a list and  called doctors in...time for progress, cause this momma is about to have a waterfall shoot from my eyes and frustration shouting-seriously.

Some of the things I asked about was:
*Her weight.  She is not gaining and this bothers me.  She needs more calories in her fluids...something.
*How can this ileus be causing her to vomit so often and so intensely???
*Is it possible that she has begun a severe case of reflux...??? (the PICU team thought this may be possibility)
*She is sore.  I told them about this last night and again in rounds.  Lauren typically loves to be picked up and held.  Now she screams every time she is moved.  Especially when it involves her head/neck and changing her diaper or twisting her lower extremity.  This scares me.  WHY is she feeling this way????
*Her blood pressure keeps going through the roof.  Yes, she has a history of high blood pressure and is being medicated for that BUT why does my 3-4 month old baby have the blood pressure of an adult???  Right now, the last few times its been like 138/80 or 90 something.  It's been doing this off and on for 5 days or so.  This, has got to stop.  Needs to get under control.  Lauren has enough to worry about, we don't need to add heart/kidney problems to the list.
(Granted during all of this the doctor was very nice and understanding and listened and I believe going to take some action)
*AND a simple throat and ear examination would make me feel better.  Who knows???  (NOTE-They did examine-left ear OK, throat OK, couldn't see in right ear-going to look again later).

Doctor said that they first need to look at CSF results to rule out major things before they move on to figuring out what's going on.  So, I am waiting for those results...terrified for some reason.  Hopefully, nothing bad is there, but it's taking a while.  (See, this is where the hospital crazy is kicking in.  I'm beginning to obsess even more...)

I'm going to get off of computer for a second, try to breathe, and do some more waiting...  which will probably make me go even more crazy. lol.

So, I have edited this page a couple of times in last twenty minutes by adding new scans and tests being run... I think my "meeting" must have worked.  Hopefully I have something to report soon, and even more important that it's good news.

Thursday, June 30, 2011

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.

Wednesday, June 29, 2011

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 26, 2011

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

Saturday, June 25, 2011

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.