Our Dynamic Urodynamics Appointment

Ok, I admit, I failed at making the title enticing.  It's a bit hard to think of a clever title when you are talking about updates from the world of urology.  I tried, though.


Today Madi had a urodynamics study, her third thus far, and the results were pretty good! 


It was a looooooooooong study, much longer than normal.  First, the nurse had Madi lay down, but then left the room to talk to the doctor.  We happily waited.  Then, she cathed Madi and told me her urine was a little cloudy. I told her it was because I had to wake Madi up from a nap to get her there, and she had not had anything to drink since the last cathing, since she was napping.  She decided to test the urine, just to be safe (which was a decision I supported, don't get me wrong!), but left Madi all hooked up to the monitors and tubes while she left to test it.  The test showed a very slight infection, so she had the doctor spin it and look at it under a microscope.  The doctor did not see anything that looked like an infection/bad bacteria (bacteria is expected with a child cathed, so they only look for certain bacteria), so they sent it off to be cultured, then she came back to finish the test. 


The test itself took about 10 minutes, but poor Madi had to lay there closer to an hour.  She was SUCH a trooper, though!  They put a movie on for her, but she could care less about it, so I had to be creative in finding ways to convince her to lay still and not mess with the tubing.  Annie's organic gummy rabbits were amazing... for about 3 seconds until they were gone.  After that, the phone worked for a bit (looking at the photos and videos on it), then we read some books, played with her baby monkey stuffed animal, drew (while laying down), played with the stuffed animal more, sang songs, and did the etch-a-sketch.  Fun, fun!!


After the test, we met with the doctor, who said her bladder was not being spastic and appeared to be pretty normal, which is an improvement from last time.  He also said that it has grown and is holding more urine.  Though it is still not a "normal" bladder, which for her age would hold about 120 somethings of urine, it's pretty good, holding about 80 somethings of urine.  He started to tell me the dithropan was doing it's job, then remembered we took her off the dithropan ;). 


The plan is to watch and wait, and see what happens.  He moved her to once a year for her tests, which was nice.  Sadly, she cannot go off of antibiotics yet, though the doctor and I did have a nice lengthy discussion about why I hate them, and he agreed, so that was good.  He explained surgery options that might fix her reflux so that she didn't need it, and why those were just not good options right now.  So, for now, we watch and wait.


In other news, Madi also had wheelchair clinic this week at CRS.  She needed some small adjustments made to her chair.  Here's a picture of her and Conner goofing off together.  They had so much fun!

They tweaked the breaks to tighten them, lowered the foot plate, and we are good to go!  Madi hasn't even had this chair a year, and in the beginning, her feet did not come anywhere close to the foot plate.  This time they lowered the foot plate by 1 1/2 inches, so that her feet just rest nicely.  Good growing, big girl!

I guess it's about time for an update!

Madi seems to be doing well.  She is a very happy little girl and is smiling all the time.  She's starting to learn to coo and makes the cutest little noises.  We took her in the the neurosurgeon for a check-up yesterday and he said everything looks great.  I am always afraid to say anything because I'm afraid I will jinx it.  It's hard because she could have an infection brewing and we may not know for a while.  I watch her very carefully (probably to carefully) but have not seen any indication of infection as of yet.  We go to the pediatrician today and will be able to check her weight and height to see how she is growing.  We met with DDD the other day and are getting her started with an early interventionist and a physical therapist.  We are also having her checked out by a speech therapist.  When we took her to the neurologist she also thought we could benefit from an occupational therapist and is getting us a referral for that.  I think it's awesome that Madi is going to be able to get so much help so quickly!  We are praying that we find great Christian people to work with.  

Madi was getting terrible diaper rashes that I was having a hard time getting rid of.  I put her back in disposable diapers while I tried to clear it and realized it was the diaper cream I was putting on her.  I made my own concoction with vitamin E and some other cream and it cleared right up!  She gets to go back in her cloth diapers now, which look so adorable on her.  None of her pants fit her though because her little butt is so fluffy!

Conner is a great big brother and is making sure his little sister is well taken care of.  He helps wash her in the bath, hugs her, and gives her lots of kisses!  

We are going home!

We just talked to Dr. Shaffron and he is discharging us!  Yeah!  I cannot wait to get home to see Conner, shower, and eat some real food!  Being home again is always a bit tough.  Conner is not used to sharing time with Madi again, Madi is not used to Conner's noises, and everyone's routine is thrown out of whack.  It is very very worth it, though!  I am so thankful that it wasn't an infection and that our time here was brief.  God really took care of my little Madi!  She is feeling much better and did great with recovery.  Yeah!!

  

Well, here we are again

Just as I feared, we are back in the hospital. At some point, Madi's shunt had stopped functioning correctly.  It started about 4 or 5 days ago.  Madi wanted to eat constantly and would only take a small 45 minute nap before wanting to eat again.  Considering that she is exclusively breastfed, let's just say I was hurting a bit!  I took her in to the pediatrician who said it was most likely a growth spurt and not to worry.  I also called the neurosurgeon who said it was normal for babies to act like that after surgery because they are trying to heal, which takes a lot of calories.  She continued to want to eat constantly, but her fontinel (soft spot) felt great, she had no fever, and she was reletively happy so I continued to monitor her but thought everything was ok.  Last night I started noticing her fontinel felt firmer.  She slept well and still had a great appetite but throughout the course of the night it started feeling more and more full.  This morning I knew that something was off.  I tried to call her neurosurgeon but the office was closed for the holiday.  After that I called her pediatrician and left a message for the nurse on call.  The nurse talked to me, the doctor on call, and then instructed me to take Madi in to the Children's Hospital.  As soon as we got here we were brought back to a room in the ER.  They ordered a cat-scan and some x-rays but couldn't find anything wrong.  Next they decided to tap her shunt to see if she has an infection.  The initial gram stain came back negative but we have to wait 24 hours to make sure that nothing grows in the culture.  If it comes back that she has an infection they will take out her internal shunt, put in an external shunt, start antibiotics, and we will be here for another 2- 2 1/2 weeks.  If there is no infection then they will go in and see what is clogging up the shunt.  That would mean we are here for about two or three days.  Either way, Madi will need yet another surgery and goes NPO (nothing by mouth) at 4 am.  I am praying that her shunt is not infected again.  As of right now, Madi and I have spent 50% of her life in the hospital and it's just not much fun.  I know that God has a plan and there is a reason why we are here, but today is just a depressing day.  We should know more tomorrow and I will keep everyone updated.  We would greatly appreciate your prayers!

Back in the hospital...

I really wasn't planning on coming back to the hospital so soon, but here we are.  On Friday, December 5th, Madi just started getting fussy, not eating well, and just wasn't herself.  We brought her in to the doctor's office first thing Saturday, and though everything looked ok, they sent us to the hospital just to be safe.  They drew a sample of CSF (cerebral-spinal fluid) just to be safe.  The fluid looked clear and infection free, but came back as containing a staff infection.  They admitted us right away, took out her external shunt, and started her on a course of antibiotic.  In order to be "clear" of infection, you have to get 10 days free from infection.  At that point, they will put in a new internal shunt.  They take a sample of the fluid daily, run a gram stain (to initially check for infection), then try to grow bacteria in cultures.  If no bacteria is grown in 72 hours, the sample is considered to be clean.  We were finally starting to get negative cultures when we got another positive.  I was heartbroken to have to start all over.  They changed her external temporary shunt as they were worried that infection was sticking to that shunt.  We started getting negatives again, which is awesome!!  If they stay negative, they will put in her new shunt on December 22nd and we will be home on Christmas Eve.  If we get another positive, then we'll be here for Christmas.

Today is December 16th.  Last night her external shunt stopped working correctly.  Right now they are trying to determine why.  Is the shunt clogged?  Will she need two shunts?  Is it just not positioned correctly?  Will she need to get a new shunt and undergo anesthesia and surgery again?  Will everything be ok?  Life is constantly full of questions.  We are off to get an MRI to try and determine why.  I am praying we wont need two shunts.  Double the chance of infection and failure just scares me!  

Hopefully we will have answers soon and I will be praying until we do!

Update... Her shunt was just positioned wrong, thank God, so we won't need a second shunt!