Home from Madi's Shunt Revision

For those of you who are friends with us on Facebook, you probably saw that Madi was in the hospital for a shunt revision.  We are happy to say that we are home and she is doing well!

Last week Madi had a headache for about 3 days in a row.  I would give her motrin (when she would let me ;)) and it seemed to come and go, but was mostly consistent over those days.  We were planning on going to my parent's cabin in Flagstaff on Friday and I didn't want to take her up if she had a problem going on so I put a call in to her neurosurgeon.  After waiting a bit I decided it was probably best to just head down so I put her in the car and started driving.  When we were almost to Phoenix Children's Hospital (PCH) the neurosurgeon's assistant called me back and told me that it likely wasn't shunt if the headache was coming and going and there were no other symptoms.  They said to go ahead and go to Flag and just watch her very carefully and take her to the Flagstaff hospital and call them if she progressed.  I contemplated taking her in anyway but decided to just keep a close eye on her.  She did pretty well the rest of the day but she had a rough night that night and was waking up a lot so I had her cuddling in bed with me.  When she woke up I noticed her left eye was turning in.  I held up one finger and asked her how many fingers I was holding up and she said two.  I knew what that meant so off to the ER in Flagstaff we went.  The doctor in the ER called PCH and they said it would be best for us to get there.  The doctor contemplated if he should helicopter us over or have us drive, and decided since she was stable we should just leave Flag and drive straight there.  Madi had thrown up a few times by then but was still feeling still and was in pretty good spirits considering. 

 

 

It took us a few hours to get to PCH but Madi did well in the car.  She threw up once and was confused about seeing double but was a trooper.  When we got to PCH we got settled in to the ER.  They got Madi an eye patch so that she could stop seeing double and she was super excited about that.  They ordered a one bang MRI and shunt series and we got in pretty quickly.  They let me go in the MRI machine with her and she did awesome.  After the MRI we were taking x-rays and David told me that they had already reviewed her MRI and it was abnormal and her shunt was indeed failing so they were taking us straight to surgery and he had already signed the release paperwork.  Dr. Shafron, our neurosurgeon, wasn't on that day, so Dr. Adleson met us at our ER room and walked us over to pre-op. 

 

 

 

The kiddos and David waited in the waiting room and I went in to talk with the anesthesiologist and do the pre-op stuff.  He agreed to let me go back and sing to her while she fell asleep, which I really appreciated.  She had fallen asleep during our walk over and woke up confused when the mask was going on her so I was very thankful I could be there to tell her what was happening and sing to her.  They were able to get the IV in her foot after she was already asleep, so that was awesome too!  After surgery prep the surgery itself only took about an hour.  When Dr. Adelson got in there he discovered that the shunt itself was functioning well.  The tubing, however, had disconnected itself.  Basically the shunt was pulling the cerebral spinal fluid through it but it was just accumulating underneath it instead of going down to her abdomen to get reabsorbed.  He left the top part of her shunt in tact, since he had tested it and it was functioning well, and only had to change the tubing and re-connect it.  This meant she only needed one incision; yeah!!  He also was able to go in through her old shunt scar.

 

During surgery I had missed a few calls from the doctor in Flagstaff so while I was waiting to see Madi I called the doctor back.  He said he was worried about Madi and was afraid he made the wrong choice by not flighting her to PCH to transfer her.  I assured him she had done ok in the car and that she was safely through surgery.

 

After surgery they didn't let me back right away, which I wasn't very happy about.  They had wanted to make sure she woke up ok first since she was intubated.  When the woke her up, though, she had woken up kicking and screaming, like I had told them she would (she doesn't wake up well from anesthesia), and was trying to rip out her IV, had already popped a few of the staples holding in the guaze on her head, and was trying to hit nurses so they had to sedate her quickly.  They let me back and when she woke up again, she was doing the same things, so they got an IV med started to keep her calmer and partially sedated and I helped keep her hands away from her surgery site and IV while we waited for the meds to kick in.  Because she was so cranky and trying to push me away I kissed her hands and that was enough to keep her pushing me away and keep her hands away from anything important.  The meds kicked in  and she was able to rest.  Once she woke up she was doing much better so they were able to cut the sedation amount in half and then not too long after they were able to turn it off all together.  She also finally got water which made her very happy.  We watched TV for a bit and then tried to sleep.  They had her neuro checks set for hourly, though, so we didn't get much sleep (especially me since they had to wake me up in between her hour checks to ask me questions).  Her nurse was really sweet though and tried to let her sleep as much as he could.  At 2 am she woke up really hungry and wanting gluten-free pizza.  That wasn't possible so her nurse offered to go down to the vending machine and get snacks for her.  We decided that if he sat with Madi I would head down since I knew what was ok for her to eat with her food allergies.  I found a ham sandwich and took off the bread and cheese and she happily ate the ham.  She also had a bite of granola bar as well and watched a little TV.  She slept on and off a little more after that in between her neuro checks but was up for good at 5:30.  We watched some movies and vegged and then at 7 am I was able to order her some gluten-free pasta and she was pretty darn happy about that.  My dad came and sat with her around 8:30 so I could grab coffee and oatmeal and I was pretty darn happy about that.  Next David and the kiddos came to visit and she was really happy to see them.  They had left after her surgery because she was so upset and it was upsetting Conner and Ramya.  We  had felt it was best for them to head home, but she sure missed them and told me many times!

 

 

 

We did another one bang MRI and it showed that her ventricles had indeed decreased so they said as long as I was comfortable with it, Madi could go home.  Her shunt site was sore, of course, but other than that she was doing great so we agreed to be discharged.  She has complained a few times about her shunt site hurting but other than that she really is doing wonderfully.  Her eye is still turned in and she is still seeing double but it's looking much better.  They are hopeful that it will correct itself, but if not, we will see a specialist about it.  Please join us in praying that it goes back to normal on it's on soon and that it doesn't cause any long-term issues.  Please also join us in praying that her shunt stays happy and infection free.  She got 3 IV dosages of antibiotics in the hospital so hopefully that will keep her from developing an infection.  Since her shunt was infected once as a baby though I always worry about it.  Please also be praying that she rests well tonight and can catch up on sleep. 

 

Thank you so much for praying for our sweet girl and for all of the calls and texts to check in on her.  We appreciate you!  I'm so thankful she only needed a partial revision and is already feeling better!  It's a miracle!

 

Oh, and a big "thank you" to our friend, Annette, who brought us a yummy dinner so we could relax tonight.  It was VERY much appreciated!

 

 



Seizures Are No Fun!

Wednesday went a little different than we had planned.

We had friends over and we were making fermented pickles (http://www.myhumblekitchen.com/2013/07/a-simple-recipe-for-homemade-natural-fermented-pickles/).  The kiddos were having a blast playing together.  They played inside quite a while but then went outside to play. 

After our friends left I went outside to bring Madi in.  She wanted to tell me all about a grasshopper she had seen so we chatted a while.  Then she looked at me and threw up.  I thought she may be over-heated, so I took her inside to cool off.  I grabbed her seizure medication, just to be on the safe side, and headed to my room to rock her under the fan.  She was being her normal spunky self and was yelling at me telling me she didn't need her medicine.  While I was rocking her she fell asleep.  She woke up about 15-20 minutes later when Conner came in the room chatting, but threw up again.  After that she proceeded to do her repeated dry-heaving that usually indicates the start of a seizure.  I gave her one of her seizure rescue tabs to try and stop it ASAP.  She was still talkative, though she was becoming a little slower to respond.  She was NOT happy with me for giving her the medicine.  I am sure they taste terrible.  I watched her for a few minutes but the seizure was continuing to develop (she started staring off, not responding much, and her left leg had started rhythmically jerking).  I gave her a second rescue med and watched her again.  The second tab didn't stop the seizure either, and then her right arm started jerking rhythmically.  Our neurologist wants me calling 911 while giving the 3rd rescue med tab so that she can be evaluated by the paramedics and then be brought in to Phoenix Children's Hospital if needed so I called 911 while giving the 3rd tab.  When the fire department got to our house it was like she was trying to talk to me but couldn't, and she kept trying to reach out so I held her hand.  It was hard to see her like that.  They put oxygen on her and she finally fell asleep.  They were able to get an IV in her foot, which is always so nice.  I was so thankful!!  I handed her to David so I could change my shirt (I had lots of throw up on me), and then I grabbed my hospital bag and we headed out to the ambulance.  Madi slept the entire ambulance ride, and continued to sleep about another hour-and-a-half once we got to the hospital.  She woke up for about 30 minutes for testing, then went right back to sleep for almost another 2 hours.  It was a good thing she got to nap because we didn't get in to a room until almost midnight! 

The first thing we did at Phoenix Children's Hospital was check her shunt with an MRI and x-ray series, but everything looked good.  They thought there may have been a very, very, very slight increase in her ventricle size, but they said it was hard to tell because the MRIs cut through in different places.  They weren't worried but wanted to watch us overnight.  The ER doctor did note she had moderate stool back-up.  They said it could have been putting pressure on her shunt, which may be causing a slight increase in fluid.  The neurosurgeon (ours wasn't on call so we saw someone else) didn't seem to think that was the cause, though, as there wasn't too much build-up.  I am cleaning her out just in case, though.

The ER doctor thought that her electrolytes might have been imbalanced since she had been outside, but her levels came back fine.  Her Keppra level was pretty low, which they thought may be from throwing up.  They decided to give her some IV keppra to make sure she kept it down and got her levels up.  They also increased her dosage from 6 mg 2 x a day to 6.5 mg 2 x a day.   

We went home Thursday after Dr. Shafron, our neurosurgeon, got to see Madi.  He didn't want us to go home before he got to evaluate Madi himself.  Though it was hard waiting until his clinic day was over, I do really appreciate that he cares about Madi and wanted to take the time to evaluate her himself.

Thursday  night we relaxed and went to bed early.  We both appreciated the good night's sleep!  Madi is now back to her normal fun and spunky self, and I am so thankful!  I'm praying this change in dosage, as well as the extra keppra she got, will keep her seizures away.  I'm a little freaked out because she has only had one other day-time seizure.  The majority of her seizures are when she is coming in or out of sleep.  It was almost reassuring having them at night or early morning, because I am always there during those times, so I never worried about seizures happening for other people (like on one of our occasional date nights or at Church).  The fact that it happened in the middle of the day has me worried.  Please pray that this trend does not continue!

Thanks for those of you who were praying for my sweet girl and who texted to check in on her.  We really appreciate it!


 

Our Wasted Trip to the ER for Madi

I am happy to report that today we wasted a trip to the ER!  I'm not being sarcastic either, I'm actually quite happy that it was a wasted trip and that she appears to be just fine!

Madi has been very off the last few days.  She is fussy, gets upset easy, is very tired all the time, is restless and not sleeping good, is eating but doesn't have her same appetite, keeps complaining of her left eye hurting (she has a VP shunt on the left-hand side), and is just not herself.  She hasn't had a fever, though, and no throwing up (except for once last night), so I started worrying about the possibility of shunt failure.  After talking to the neurosurgeon's office, we decided it would be best to go in to the ER and run a shunt series to make sure her shunt is functioning ok.  I had called while she was napping (she has been asking for a nap, which is so not like her!), so let her sleep a little bit longer and then headed down to Phoenix Children's Hospital.

At PCH we were admitted quickly and answered all the normal questions they ask.  Next they sent us for a big bang MRI.  They let me get in the machine with her, which makes me so very claustrophobic, but she did a great job laying still, and the test only took about 5 or 10 minutes.  She wasn't a huge fan of all of the random noises but really did wonderful.  Next we went over to x-ray to check and make sure her shunt placement looked good.  I asked them not to test her blood, since I'm not worried about anything other than shunt failure at this point, but did ask them to culture her urine, which came back clear. 

Our neurosurgeon, Dr. Shafron, came in shortly after we got back to the room and said her MRI and x-ray looked good.  Her shunt is still placed well, it's not caught on anything, there's lots of tubing left, and her ventricles look stable.  He said that what we don't know from the images is if her shunt is functioning well or not.  That's kind of the question right now.  While he was in the room, I got to discuss Madi's degree of scoliosis with him, which was nice.  Unless we have to see him sooner, we will follow up with him in six months after getting another set of x-rays, and then try, again, to figure out if we should de-tether her spine or not. 

The ER doctor said that there are a few viruses going around that they are seeing in the ER.  Madi's symptoms do not match what they are seeing, but they said that a virus could just be manifesting differently for her.  The other option is that she is in the early stages of shunt failure, where her shunt has not failed yet, but is also not functioning well. 

They gave me the option of staying the night for observation or going home.  I opted for going home, but have Madi in my bed so I can keep a really good eye on her.  She still sleeps in my room anyhow, because of her seizures, but usually sleeps in her toddler bed.  She was starving by the time we left, as he had been NPO (nothing by mouth) for so long.  I had brought her a granola bar, but it just was not enough.  After we left the hospital I took her to Whole Foods so she could get the gluten and dairy free pizza there that she loves.  I ate my veggie sandwich, she ate her pizza, and we were both happy girls!  She didn't finish her pizza, which again is odd for her, but she was a happy girl!

I'm praying this is all just a virus and passes quickly.  I'm thankful that we are home and that her shunt most likely is just fine.  Hopefully she will improve quickly and be back to her normal self soon! 

So happy with her pizza!! 

 



 

She requested to fall asleep laying on me... such a sweet snuggle bug!

 

Our Bad News Appointment Today

Sigh.

When you are a momma of a kiddo (or two ;)) rockin' Spina Bifida, there are a few things that always run through the back of your mind.

1. How is that shunt working? 
2. How is their urine looking today?  Do I think they are still UTI free?
3. Are their bowels up to par?
4. Is there any tethering going on I can't see?

There are a few more, but I'd say those are the big ones.  A little cold, every flu, every bout of crankiness, you question if it could be more.  I don't think this is a bad thing, I think it is just being an aware parent, and part of what goes along with the job of raising a kiddo with some extra health considerations, but regardless, it is always there. 

Today we saw our orthopedic surgeon, Dr. Segal.  He answered #4 for us for Madi.  Bummer.  We knew this day may likely come, but it's a day that I think every parent of a child with spina bifida dreads. 

Before our appointment, the nurse wanted to do a spine x-ray, as at our last appointment, Dr. Segal mentioned she had a slight curvature to her spine and he wanted to check it out.  Turns out there is a curvature.  A big curvature.  She has scoliosis at about 50%.  That's fairly major, and the ramifications of that percentage are not so wonderful.

There is a good chance Madi is so curved because her spine is tethered.  Every child with spina bifida that has had a back closure surgery IS tethered, however, if that tether becomes symptomatic, it's time to treat it, which means a de-tethering surgery. 

The good news is that a de-tethering surgery may stop the progression of the scoliosis.  Dr. Segal said anything over about 40% curved is not often fixed with the surgery, but it would hopefully stop the progression.  The downside of the surgery is that about 10% of children come out with less functioning than before the surgery.  It also leads to more scar tissue, which can then lead to more tethering, which then, of course, can lead to more surgeries to de-tether the spine.  It's a cycle that you do not want to enter unless you have to, though it is important to address the issues and have the surgery if it is necessary, as degeneration can progress by not doing the surgery. 

Dr. Segal wanted us to see Dr. Moss, our neurosurgeon, and talk to him about Madi's symptoms and the possibility of surgery.  Thankfully we were going in to see him next week anyway, so the timing is perfect.  Madi also has to get fitted for a scoliosis brace.  She will need to be in the brace the entire day, unless she is standing, or unless she is sleeping.  I made an appointment with Ron, our go-to guy at Hangar, for this Friday.  I am praying this will be an easy transition for Madi and that she will not hate the brace.  Tami, our PT, came with us to the appointment (This is the first one she has been able to come and I was so thankful to have her at this one... that was totally a God thing) and asked Dr. Segal what that means for her mobility.  Does that mean she has to be in her wheelchair at home, or can she still crawl and climb as normal?  (As of right now, wheelchairs stay in the car for when we are out and about, and we crawl, get held, or stand in the house.  I know we can't/won't do this forever, but for now, I feel it is best for the girls.).  Dr. Segal said that there would be know way we could stop Madi anyway, because she has such a determined personality, so there is really no point in trying.  He said Madi can resume normal routines in the brace, so that is great news!

Before we agree to the surgery, there are a few things I feel need to be done at our appointment with Dr. Moss, her neurosurgeon.

1. Madi's x-ray today was taken sitting up.  Because her left hip is dislocated, though, and her right hip is not, her body doesn't sit level.  Though I do fully believe she is curved, I think the percentage may be accentuated because of the way she sits.  I would like them to x-ray her again, but this time laying on a table, so that we can see how the spine looks at that point.  If it's still 50%, then that's ok.  It is what it is.  I just want to make sure.  Also, if it's slightly off, and she's at say 30% or so, then the detethering may help to reverse the scoliosis, which would be amazing.
2.  I would like to try and establish a baseline for Madi's spine, as this is the first time we have checked for scoliosis.  Madi had a sedated MRI done about 2 years ago where they checked her spine.  I would like Dr. Moss to review the scan, specifically looking at it for the degree it is curved, and compare it to her current x-rays.

After we review those two things and talk with the neurosurgeon next week, we will likely have a game plan for how to proceed.  I will keep everyone updated. 

Though today's news was not what we were hoping for, we know everything will be ok. After drowning myself in Starbucks and talking things through with David and my mom, I feel more at peace about how to proceed.  Madi is such a spunky and determined little girl, and I know she will not let this slow her down.  Though it looks like a setback, I know in reality it will make her stronger.  I wish you could have seen her today.  She was in her HKFOs, standing tall. She walked (with Tami holding her hands) right up to Dr. Segal, looked at him in the face, and said, "I want to walk by myself!"  I fully believe one day she will.  We have been talking about getting her a device like a TAOS or gait trainer to help her be able to walk independently, but Dr. Segal says he does not think it would be a good fit for her, as it would do too much work for her.  He also fully believes that she will get to the point where she can walk on her own (meaning walking in her HKFOs using a walker or her arm crutches, without needing the help and support of an adult) one day, sooner rather than later, and told her that.  He told her to keep working hard and getting stronger, and that she would soon be doing it on her own.  That answer seemed to satisfy her :). 

Please be praying for wisdom and guidance for Dr. Segal, Dr. Moss, David, and I.  Choosing surgery is not always an easy thing to do, especially when it is not life and death and there can be so much grey area, but sometimes it is just so important (like it was with her vesicostomy surgery).  The idea of another surgery with more anesthesia, more antibiotics, and more recovery time, is not ideal, but we really want to do what is best for Madi in the long run. 

Thank you for praying for our family and for walking our journey with us.  Your love and support truly do mean more than you will ever know!

 

Two Appointment Updates and My First Kiss!

Whew.... another busy week!

Tuesday we rushed off to Mesa to see our neurosurgeon, Dr. Moss.  He reviewed Ramya's CT scan and shunt series.  He's stumped as to what kind of shunt she has and why they put it in how they did, but the good news is, it's working!  He has no plans to touch it since it's working, and that is exactly what I wanted to hear!

Today we went down to Ron at Hanger and he got her all set up for KAFOs (leg braces that go from the ankle to the thighs).  He said he'll have them ready in about 3 weeks, so that's awesome!  We can't wait!  Ramya did great during the appointment and was very excited to pick the purple butterfly print for her new braces.  We set up an appointment to get her braces and get Madi's fixed (she grew again and needs them adjusted) in 3 weeks.  Ron and his office assistant were very excited to meet Ramya.  They have been waiting for her!

 

 

Tomorrow we are off to the pediatrician to have a little lump on Ramya's left "nee nee" looked at.  It just popped up and it's bothering her, so I wanted to get her in ASAP.  It feels like my cyst does, and I've never felt something like that on a child before, so we're off in search of some answers.

 

Saturday is our big open house to celebrate Ramya and so that all of our friends and family can come and meet her and spend time with us.  We are busy getting ready and can't wait!  We hope to see you all there (well, those of you that live locally that is ;))!  If you need our address, please email me at jamie_lugo@hotmail.com :).

 

OH!  Before I forget, I got my first kiss today!  She planted a big one right on my nose!  I give her kisses all the time, but I haven't gotten a spontaneous kiss from her until today.  Now I officially have gotten a hug, a kiss, and told "I love you".  Life is good!

 



 

Seizures, Sickies, A Mini Hospital Stay, X-Rays, CT-Scans, Orthopedic Surgeons, OH MY! Oh Wait! Did I Mention Maybe a UTI?

Whew.

I know, that's quite the title for this blog post, but it's been quite a few crazy days!

Where to start???

Wednesday we went out for our "big" shopping trip.  We found out Madi is sensitive to peanuts, almonds, eggs, corn, and wheat (likely dairy too, but she didn't have enough in her system for it to show up).  We knew about gluten and dairy, but the rest are new (and were tested because of her big egg fiasco).  We had to re-do the pantry, again, to make it allergen-friendly for her.  That meant sunflower nut butter (instead of almond or peanut), coconut milk (instead of almond), rice noodles (instead of quinoa/corn blend), etc...  I was also very low on groceries as we've just been kind of sliding by with our shopping and needed to stock up.  That was a $300 shopping trip right there.  Whew.  Yes.  $300.  I've never spent that kind of money in a grocery store, ever.  It was insane.  We were blessed with a sprouts gift card by two amazing friends the week before, and let me tell you, it was very much appreciated!  It helped a lot with that trip.  It was such a blessing (thank you friends (you know who you are), we love you guys!!) to have!!

I got a call from a friend as we were leaving the grocery store.  She needed to take her husband in to the hospital for heart failure (Thank God he is doing ok now.  It looks as though a virus settled in to his heart and was causing issues, but is resolving).  I ran by to grab her two kiddos and brought them back to our house.  Next, my friends moving to India the next day came by for dinner.  It was a crazy last dinner with them, as there were 7 kiddos at that point in time (my 3, their 2, and my friend's 2), but we enjoyed seeing them one last time before they left for India.  I got my 3 ready for bed and laid them down with David and sat with/rocked the 2 we were watching so that they would rest and be happy until their momma could make it home. They are sweet kiddos and did a great job while their mom was away.  I dropped them off at around 11:30, got home around 12:45 (we chatted a bit), then crashed in to bed.

Thursday I woke up and got Conner, Ramya, and Madi ready for a doctor's appointment we had at 10:00 am.  Ramya was seeing Dr. Segal, our orthopedic surgeon, for a check-up and to get a prescription for leg braces.  I got the three of them pottied, fed, dressed, and in the car, and we headed for Phoenix Children's Hospital (PCH).  We checked in, waited, got in the room, waited a bit more, then saw Dr. Segal.  He is a wonderful doctor and we really love him.  He heard clicking in Ramya's left hip and set us for x-rays.  Conner and Madi couldn't go in the x-ray room, so I took Ramya in while the secretary played with Conner and Madi.  She made them glove-balloons and they drew faces on them.  They had a blast!  We got back to the room and by then everyone was getting ansy.  We waited a bit more for the doctor to come back, and he walked in to a room of monkeys when he did!  He gave Conner a game on his phone, sat Madi on his lap so she could scribble all over his notes, and finished his exam (like I said, he's an amazing doctor!).  We were finally finished at about 12:45 pm.  Dr. Segal wrote us a prescription for occupational therapy, physical therapy, speech therapy (just in case), and KAFOs (leg braces that go up to the thighs).  He thinks Ramya will be a functional walker, and is hopeful we can go down to just AFOs (ankle braces) in the future.  He did say, though, that her left hip is likely out and will need surgery.  The x-ray showed that the front of the hip was mostly in, but it seemed the back of the hip was not.  We'll need more x-rays in the future to better asses this.  Madi's right hip is out, but he doesn't want to operate as she is a part-time walker.  Because he sees Ramya walking more, though, and causing more strain to that joint, he thinks she will need surgery.  Sigh.  He thankfully wants to wait until she's been here longer and is better adjusted, so at least that is good news.  At this point, we had missed Madi's occupational therapy, so we just went to the cafeteria to eat and relax.  The second we pull up in the parking lot all the kids get excited (even Ramya now), becuase they know PCH has scooby doo fruit snacks full of all kinds of nasty junk that mom wouldn't normally let them have.  It's the one time they get them, and they all love them, so we never leave the hospital without them.  Hey, if you have to go to the hospital for appointments all the time, there has to be a little perk, right?!?!?!?

Ramya's photo of Madi's glove balloon....

 

 



This morning Madi woke up early at 7:05.  She was throwing up and dry heaving, but was responding and seeming ok other than that.  She wasn't stopping the dry heaving, though, and then started staring off and getting slow to respond.  My heart skipped a beat.  Then I noticed her lower half started convulsing in a rhythmic pattern.  I woke David up, got her rescue meds, and gave her those (at about 7:20).  Madi's seizures don't self-resolve and just continue to get more involved, so they have to be stopped ASAP with a rescue med.  The problem, though, is that it's sometimes hard to tell if it's a seizure or just regular old sickies.  She normally falls asleep right after I give the meds, but this time she didn't.  She was agitated and kept telling me she needed to pee.  She finally fell asleep, but woke up very unhappy (which is not like her).  She kept saying her head hurt.  She'd hold it and just cry.  It broke my heart.  She started projectile vomiting, too.  She was lethargic and would wake up for a bit, sleep for a bit, but was just hurting and not happy whenever she was awake.  She's never complained of a headache before, and she's never acted like that after a seizure before, so we were worried about her shunt.  We decided to take her in to PCH.  Because they are on RSV restrictions still, my mom drove so I could sit next to Madi, and David stayed with Conner and Ramya.  Poor Conner was crying and upset at me leaving, and I felt awful leaving Ramya when we are still working on attachment so much.  Thankfully David was there for them, but it was not fun.  Madi projectile vomited in the car on the way again and was still saying her head hurt.  We got checked in at PCH and then the ordred a CT-scan and x-ray series.  I also told them they probably wanted to check her urine and did a clean cath sample for them.  We waited quite a bit (such is hospital life) and then it was time to go get the scans.  Right about then, Madi perked up and started acting like her normal self.  We went for the scans and then waited for the doctor to come talk to us.  While we waited we chatted with Conner and Ramya on facetime.  They were relieved to see us!  After we chatted for a bit, the doctor came in and told us her scans all came back fine.  He didn't think it was shunt related (Thank God!  I know it's crazy to wish a sickness on your kiddo, but I always pray she is "just sick" and it's not shunt related, because shunt issues equal surgery!).  He did, however, see a lot of white blood cells in her urine, indicating she likely has a UTI.  They couldn't get ahold of urology to check her sample, so they sent me home with a prescription for antibiotics and with instructions to fill it if urology felt it was necessary (I will call Dr. Zuniga on Monday and have him check it all out).  The doctor said the UTI could be to blame for all of the symptoms we saw that day.  I don't think it was related to the headache and vomiting.  I think that was likely due to the rescue meds.  I suppose you never know, though.  I do know if she has a UTI that would lower her seizure threshold, so that could help explain the seizure.  Madi acted like her normal happy self once we were home.  Conner and Ramya were thrilled to see us and Ramya would not let me put her down the rest of the day.  David said she cried and asked for me a few times while I was gone.  This made me feel very sad, but at the same time, I'm glad she is missing me.  I would think it would mean she's at least partially attached to me if she is sad I'm gone.  I'm glad she's now gotten to see, though, that momma comes back.  I'm also thankful she was able to be with David, as I'm sure that helped their bonding.

Sleeping angel on momma...

 

 



We finally got dinner (takeout... I hadn't had breakfast or lunch, and had finally gotten half a sandwich in the late afternoon but was still very hungry!) and got all the kids in bed, and then Madi puked again.  It was a lot.  It went on me, on the pillow, and on the bed, so we changed all of the sheets and the waterproof mattress cover, and I changed my clothes.  We got all the kids back in bed and settled again, and then finally off to sleep.  I'm beat, so I am headed to bed as well.  The house is a mess.  Their are dishes in the sink.  I need a shower.  But for right now, I don't care.  Sleep is going to come first.  I am VERY thankful that Madi's shunt looks good and that we were able to come home today.  God is really watching over my little gal!

I pray everyone has a blessed night and gets lots of rest (me included)!!!

 

An Update on Our Current Hospital Stay

Just wanted to give a quick update on our current hospital stay, since I know many of you are wondering how we are doing and why exactly we are here.

We came in on Wednesday morning for a planned 3-day(ish) hospital stay.  We are in the epilepsy monitoring unit and are being monitored 24-7 (which means we get to sleep with a few lights on and there is always a video going ;)).  Basically we are trying to see where her misfirings are originating from, how her medication is working, and what types of seizures she's having (if she has one while we are here).  Madi has been having some odd nighttime behaviors, like teeth chattering, so we are hoping to catch some episodes while we are here so that they can see if it is seizure related or not. 

This afternoon I got our first batch of feedback.  Basically, Madi has a lot of spikes (aka misfirings) going on.  These aren't seizures, however, they are things that could potentionally turn in to sezures.  We thought that they were primarily on the left-hand side of her brain, by her shunt, but apparently they are all over.  There tend to be more on the left-hand side, however, she has a lot occuring on both sides.  This tells us it is probably not because of shunt placement or anything like that.  She had some episodes of being upset and shaking last night, however, these were not seizures.  We didn't see any teeth chattering yet, nor any episodes of heaving, etc...  Oh, and Madi was also diagnosed with epilepsy during our last neurologist visit (the one before this hospital stay), so we can officially add that to her list :).

The doctor said that he is learning a lot about how Madi's brain works and what types of misfirings are happening, but said there is still more to learn, so he wanted us to stay tonight.  I'm not sure if he will want us to stay another night or not, it just depends on what we see tonight.  He said we will take it day by day.  We were told it's 3 days usually, unless you see something early-on and go home early. 

We have had lots of guests and are very thankful for the distraction, as Madi cannot leave the room (and I can't leave to eat unless someone else is here sitting with Madi).  On Wednesday, my mom came to visit.  Today Sharri (from the local spina bifida association) came, as well as our friends Leslie and Ryan, David's parents and grandparents, Conner and David, and our friend's Eric and Darcy and their kiddos.  We have also had some yummy food dropped off (thanks Ryan and Leslie!!!!) and are very thankful for that as well.  Childlife has been very good to us and has been letting us borrow lots of games, puzzles, play-dough, crafts, and other fun things.  We also had a visit from Elvis, a great therapy dog.  I am so thankful Madi is so sweet and easy-going and loves playing so much.  It really helps our days go smoothly.

I'm headed to bed, as sleeping in a hospital doesn't really happen too well.  I will update tomorrow once I know more.  Thanks for praying for our sweet girl!

 

So these are the stickers mom was talking about... SO not impressed (though I did sit nice and still ;))!

 

 

... and now I look like a mummy.  Good thing today is Halloween!

 

 

At least my sense of humor has returned.  I call these my "Happy Halloween" glasses and make sure I put them on for everyone that visits.

 

Can't forget the eye patch!

 

Madi's great-grandma, Uma, whom she loves very much, and Elvis the therapy dog.

And we have seizure 3

Friday did not turn out quite how I had imagined.  Madi was randomly awake from about 12:30 until about 1:30 am, then awoke at 7:10ish dry-heaving/seizing.  This seizure was different from the other two and it took me a while to realize what was going on.  After dry-heaving, Madi fell asleep.  She awoke, though, and was responding, but was slow to respond.  Then her eyes started blinking a lot and I knew for sure (well, at least I think I do ;)) that it was a seizure.  I gave her the rescue medicine I have for her, since her seizures are long and complex, and she quickly fell asleep.  When she awoke, she was back to her normal self. 

I've already talked with the nurse at the neurologist office, the pediatrician, and our naturopathic doctor, and missed a call from the neurologist (darn that terrible phone reception!!  Time to get a new cell phone carrier!!).  I am also waiting for a call back from the neurosurgeon.  Thankfully, though, this seizure did not bring any paralysis and did not land us in the hospital, nor did it necessitate a 911 call.  I am just really bummed that it came at just 2 1/2 weeks after her last one, and while she is on her daily seizure medication. 

Seizures aren't fun, that's for sure. I find myself stressing about when the next one will be and being afraid to let her out of my sight for any length of time. If she is slow to respond, because she's tired and spaced out, or she's dreaming and twitching in her dream, I fear the worst. What also makes it hard is that each of her 3 seizures have been quite different.  David and I finally got out for a date night to the movies, but we couldn't get cell phone reception and couldn't relax without it, so we had to walk out and get a refund.  We ended up going out to dinner and it was still nice to be out together, but it's hard to be worrying so much. 

For the last few days I've had the Beatles song that says "Life Goes On" running through my head.  Though this onset of seizures is hard on mommas heart,  I know that God is in control and has a plan. We choose not to sit at home, but to be out and active, to continue our daily activities, and to try and live our life to the fullest.  We will learn to adapt and handle our new changes in life and not let them keep us from enjoying our time together.  Life goes on, and for that I am so grateful. 

I am praying we can get her seizures under control so that she can go back to being seizure-free. Please be praying with us.  Please also pray for wisdom for us and for the doctors as we learn how to best how to control Madi's seizures.

Madi's 2nd Seizure and 3rd Ambulance Ride

Little Miss made sure that we had a VERY exciting day today.  She woke up early throwing up and then went back to bed for a few minutes.  I handed her to David to change my shirt and put in my contacts then heard him screaming for me.  I ran in and he said he thought she was having a seizure (she was).  I held her for a few minutes and then she started responding.  She told me she barfed about 20 times and I cleaned her up with a wet napkin, but I noticed she couldn't move her right arm at all and it was just floppy.  Then she went unresponsive again.  We gave her the seizure meds we were given to stop her seizures but she didn't seem to be responding to them, so we called 911.  She fell asleep shortly after we called them.  They came and checked her out and said she looked good but they recommended we take her in (and we agreed as her right arm was still floppy and her left eye was twitching weird) so they loaded her and I onto a gurney and into the ambulance.  Once we got in the ambulance, she regained function of her left arm. 

The first thing we checked in the ER was her urine and her shunt, both of which came back fine.  They said that she would probably have a "big" MRI and another EEG, but sent the neurologist in to talk with us.  He reviewed her past EEG and said that her abnormal firings are coming from the area of the brain where her shunt enters her grey brain matter.  He said her shunt is working fine, but that any time something abnormal happens to the brain matter or enters the brain matter, it puts you at risk for seizures.  Her body sees her shunt as a foreign object, obviously, so it reacts to it.  He said that there is about a 3% chance of a child seizing from their shunt when it's not actually malfunctioning, and Madi, he believes, is part of that 3%.  So, basically, moving the shunt probably won't help, as we would just be entering a new area of brain matter.  If, at some point, we decided to do a third ventricularoscomy (don't ask me if I spelled that right!!), that would probably take away the seizures, IF it was successful.  He said that the area where the shunt was would still leave a "scar" of sorts, so it may not help, but it would most likely help. 

When I was describing what happened to the neurologist, he said he believes her seizure actually started when she started vomiting.  That would mean she had another abnormally long seizure.  He wants her on anti-seizure meds from here on out for at least a few years.  I'm a more naturally-minded momma, so the thought of more meds makes me want to cry, but so does the idea of more seizures.  He said that he's not concerned about the frequency of them, but more at the length of time they occur for.  He told me that if she continues to have long seizures then it will change that area of her brain over time.  He said the problem comes when a child has had them long-term and becomes a teenager.  They start to have difficulty controlling them and can't always stop them any more.  I asked about how often the medication helps control them, and he said it works in about 65 to 85 percent of children.  The neurologist said that he didn't feel another EEG or MRI were necessary and sent us home.  Madi said he ("the man with the spiky hair" as she called him) was her best friend, because he got her water :).  We have to go back and see him in a few weeks. 

They also checked Madi out to see if she had a stroke, but they are sure she didn't, as she didn't have any facial drooping and she regained function so quickly.  They said temporary paralysis is a side-effect of seizures sometimes.  Though it's not super common, they see it fairly often. 

The other fun was that my phone was mostly dead today when I left in the ambulance and it totally died after I called Madi's OT and told her not to come for therapy that day.  I had grabbed my phone charger, but my phone wasn't working from the hospital, so I couldn't call in or out.  I could have used the hospital phone, but Madi was hooked up to wires and didn't want out of my arms (and was asleep a lot of the time), and I couldn't reach the phone from the bed.  I texted David and asked him to call my parents, but the text didn't go through.  He didn't think to call my parents, so they didn't even know we were in the hospital! 

So that was our fun for the day!  Please keep little miss in your prayers.  She is back to her normal, spunky little self, thank God!  I am also very thankful right now for video baby monitors, and for the fact that she pretty much just still sleeps in my bed.  There are few things greater than peace of mind!

The Amazing Story of how the Endoscopic Third Ventriculostomy Came to Be

I love this story and just had to pass it on.  A doctor and his family moved across the sea to provide neurosurgical care for those without access to it, and in the process, he invented the endoscopic third ventriculostomy procedure, so cool!!  What a great story!

http://vectorblog.org/2011/02/building-neurosurgical-care-in-the-heart-of-africa-one-doctor’s-story/

Sometimes Doctors Are Wrong

Placing one foot in front of the other, I've climbed to higher lengths. Reaching beyond my own limitations, to show my inner strength. No obstacle too hard, for this warrior to overcome. I'm just a man on a mission, to prove my disability hasn't won.

-- Robert M. Hensel

When you first find out your precious baby has spina bifida, your world is thrown upside down.  You search for answers, only to find that there really are no good answers, because all kids are so very different.  Looking back, most of us feel like we wish we had known then what we know now, because we would not have worried or shed tears.  We would have known everything would be ok.  The advice of well-intenioned doctors just seems to make it all worse.  Instead of hearing about all the things our children WILL do, we get the laundry list of what they won't.  And the funny thing is, most of the time, they do!  Our children shine!  Don't get me wrong, we love our doctors.  We covet their wisdom and advice, and we put our children's care, and lives, in their hands, but that does not mean that they are always right.  It does not mean that they can predict what our children will be like.  Unfortunately, some lives are ended early because of the picture that is painted of what their life "will" be. 

Here are some stories of how our children (and adults living with spina bifida) are redifining spina bifida every day.  Stories of children and adults showing the doctors who said they wouldn't, and the world who said they couldn't, all that they CAN do. 

I choose not to place "DIS", in my ability.

-- Robert M. Hensel

Our doctors said Alyssa wouldn't have bowel or bladder function. But my barely 2-year-old is currently potty training at the same level if not earlier than her "normal" friends. It's not TYPICAL for a child with Spina Bifida to have that function, but in her case, those particular nerves must have somehow been spared from damage.
Any time I hear "she can't" or "she won't", I remember the ending of the story, "Why a Bee?": The bee was the biggest problem of all, so the teacher sent her to see Doctor Owl for testing. Doctor Owl said the bee's wings were too small for flying and they were in the wrong place. The bee never saw Doctor Owl's report, so she just went ahead and flew anyway.

No doctor can tell you exactly what your child will be able to do, whether your child is born with a disability or not. Medical journals can spit out statistics, but they can't factor in a child's level of determination. Doctor Owl may be well educated, and he may have a lot of fancy initials behind his name, but he doesn't know my stubborn little bee.

The doctors said that I could never do gymnastics but here I am with my
medal!

Mikayla

When we received the spina bifida diagnosis, our world stopped. The first few things we heard out of the doctor's mouth was "Your son has spina bifida, he will have no quality of life. When would you like to abort." That statement still mortifies me!

Our son Tanner not only has an awesome quality of life, but he is happy living it! This kid never ceases to amaze us as his parents. When there is a will, there is a way. And Tanner always finds that way. :)

After Tanner was born we were told things like.... He won't ever crawl, stand, or take steps.... let alone walk. Tanner has been crawling for over a year now, is standing with assistance, and cruising along the furniture! He is also learning to use a mini walker.

Tanner is the light in our lives, and we would not change him for anything!



After we got the diagnosis I was sitting in my OBGYN's office waiting to be seen and she came in and asked me how I was. I told her "fine". And she looked at me and said, "No you're not. I read your chart and know the diagnosis you received." I told her that yes I am scared to death but we will make it. She said, "You may be fine now but just wait until she's born. Your life is going to be really hard then."

Really? When I look at this face I don't see "hard life". I see one of the most beautiful gifts a mother could ever receive. She is a blessing to this world. Not a burden. EVER!

The doctors told us our baby's life "wasn't viable" and that we should deliver early and let him die (i.e. terminate).Bryce is now 20 years old, plays a mean swing beat on the drums, has a superb jazz CD collection (of which he has memorized all the liner notes--need to know when a song was written? recorded? by whom? Just ask Bryce!), emails and Facebooks his friends constantly (also having memorized all their birthdays, all 284 of them), and is an artist at a studio for outside artists, selling his paintings for over $100 each. I'd say he's not just "viable" but thriving, blessing and enriching all who know him.



The doctors told us our nightmare was coming true.
But instead...we got the little boy of our dreams.

The doctors said he would be "incompatible with life."
But the truth is, our lives are incomprehensible without him.

My doctor told me that Nickolas would negatively impact my daughter's life and would be a burden on our family.
HA! I don't think so!

My parents were told I wouldn't live overnight, and the humane thing to do was to let me go. I'll be 28 in August. I think I'm a little past my expiration date!

The doctors told my parents I wouldn't go to mainstream school. I now have a degree and nearly have a diploma too.

At 19 weeks pregnant we found out we were expecting our second little boy- mister Logan Blake- but we weren't expecting to be told that they detected an open neural tube defect... Nearly weeks later and at almost 21 weeks- we received the official diagnosis of Logan's Spina Bifida and the detection of Hydrocephalus on his brain. God had to have blessed us with a good doctor that day because instead of being pushy and telling what our child would not do- instead he told us the possibilities of what our child might not be able to do and after we decided against termination he immediately sat us down and informed us of what would happen when he was born and if he would need a shunt...


Today- our Logan is 2 years, 8 months and thriving!! His smile is captivating, he has the best sense of humor, he is rolling all over the place, commando crawling, babbling up a storm, pushing up on his hands & knees, he spoon feeds himself & will sit up on his own for a few minutes... These are things that we didn't think he would ever be able to do or questioned when he would do and he continues to amaze us daily at whatever new thing he learns & we thank God for our miracle....



Doctors told me my baby would never walk, talk or "be normal" when he was diagnosied with Spina Bifida when I was 17 weeks pregant. Well they were WRONG... really, really WRONG! It might have taken over 3 years, but he talks non stop now and there is no mute button on him! It might have taken 4 1/2 years, but he walks just fine thank you very much. And who wants to be "normal" anyways? But I wonder what those same doctors would say to see that same little boy SURFING 10 years latter?? The little baby who I was told would never walk not only walks, but is a happy surfer dude who be 11 in the blink of an eye!

My parents were told (back in the day) I would basically "be a vegetable, mentally and physically." I'm a college grad, teach adjunct at a university, run my own business, and am married with three kids.

They said I'd never walk, but I can climb a ladder
Jaici 4 1/2 yrs old

As a 9th grader I was doing terribly in English in school. After a "D" for the 2nd grading period, my parents went to see the teacher to see what could be done to improve. Because of my CP, I am unable to manually write and was trained early to use an electric typewriter (I know, so old school). During the course of their meeting (my parents and said English teacher), my mother expressed the concern that unless my English grades improved I wouldn't be able to get into college. The English teacher was aghast, "College ! I gave him paper and pencil and he can't even write!" College indeed ! I have a BS and MS in Math and a PhDin Chemistry (although I'm not a chemist).

- Mike
(note- Mike lives with Cerebral Palsy, not Spina Bifida, but has an amazing story that needs to be shared!  This picture is of him graduating with his PhD when he was 53!  What an inspiration!)

The doctors told me that i would be paralyzed from the waist down...I am now doing zumba and love it.
- Isabel

Here is a pic of Caitlin crawlingup the stairs.  They said she would never crawl up the stairs.  She has just reached the top in this picture.

At our first Ultrasound, we were told Emmett had Spina Bifida, Hydro, and clubbed foot. The forecast was stormy, and the more we read, the more we listened the worse it sounded. We were asked on that day if we wanted to keep the Baby. Both of us had no doubts. A year after his birth we were told to just put him in a caster seat, get him used to using the wheels, because he would never walk. A year later, our boy started to pull himself to stand, then a year after that, he started walking along with the assistance of a small plastic chair. The Physio told us he didn't have enough strength to hold himself up, she said he would need to wobble forward using the walker and a stander. 6 months later, he showed all of them (8 Doctors were taking pictures on their camera phones), everything halted while he walked down the hall and back again using just a walker. Now here we are 4 years after their grim outlook, Emmett is using KAFO's, and a walker. He is so proud and tall. He keeps going further daily.....Our boy is a tenacious angel, and we couldn't be prouder!! :)

The Doctors said Jazmine will never move her legs, that she will have mental retardation,that she will for sure need a shunt for hydrocephalus and catheters to help her urinate.

Now Jazmine is 21 months super smart, walks on her walker and stands up holding up to anything she finds on her way, no shunt and no catheters and we see all her doctors only once a year for follow ups( neuro, ortho and urologist)

After receiving our diagnosis, we went through the MOMS eval, hoping to learn more about Spina Bifida as well as the fetal surgery. The neurosurgeon (whom we still go to and love) said, "Based on his L2 lesion, even with the fetal surgery he WILL need a shunt, and he WILL use a wheelchair by the time he's in high school." At the time it was the end of the world and I didn't stop crying the rest of the day. (By the way, he is turning 5 on Friday and does not have a shunt.) The next day I spoke with an ethicist, and I told him that I had talked with a SB nurse who told me that she has a few patients who RUN into clinic. He stopped me and said, "She should not have told you that. That is not true. Your son will never run."


Really?




  And a few others....


When I was in 6th grade my Orthopedist told me that I couldn't run, ( I was on the school basketball team at the time!).

-Liza

The doctors told my mom that I wouldn't live past the age of ten. I'm turning 26 in less than a month and I know have a college degree and a job. He also told my mother that my legs wouldn't grow. I was mostly legs till I hit my major growth spurt in my teens.  

You all hear a lot about my little Madi.  The doctors said she would never walk.  And she probably never will.... because I can't get her to slow down and stop jumping in her walker long enough to actually "walk", ha!! 

We, the one's who are challenged, need to be heard. To be seen not as a disability, but as a person who has, and will continue to bloom. To be seen not only as a handicap, but as a well intact human being.



-- Robert M. Hensel

If you want to share your child's story, I will happily add it :).  Just e-mail me your story and a photo or video at jamie_lugo@hotmail.com

Hoping she's just normal baby sick.....

Madi's been a bit off for the last few days. She has a stuffy nose and has had a few puking incidents. During the day, she seems ok, but at nap time and at night, she just is not doing well. She wakes up unhappy and does not even want to nurse some of the times. Her fontanel and shunt line feel good and her urine output looks good, but whenever she is off, I get nervous!! She also kept tapping her head, like she was trying to tell me it hurt. She does not have a fever, so that part is good, though she never has when she had shunt problems (even when she had the infection, but I think it was because we caught it so early). We are supposed to go out of town for a wedding this weekend and the wedding is in a smaller town. I have not looked at how close the closest children's hospital is yet but I need to. I know that we most likely will not need it, but it is something I like to do before we go on vacation anywhere, just to be sure. It's something Dr. Moss told me I should always do, and it makes sense, so I'm sticking to it, even if it does make me one of those crazy over-protective moms :). When you say your prayers tonight, please keep my Madi in them.... we covet those prayers!

Such great news today!!

Though it is too easy to say when things are going well, GOD IS GOOD! All the time! We went for a routine MRI today, as well as a routine neurosurgeon appointment. The MRI went smoothly. They allowed me to get in the MRI machine with Madi so that they did not have to sedate her. I rubber her little soft face and sang to her while they did what the call a "big bang MRI", which only takes about 5 minutes. It was a bit eery feeling to be crammed in such a small, enclosed space, but I was thankful to be there! Madi did great because she knew momma was right there with her the whole time. She wasn't a huge fan of the ear plugs or the fact that she could not move her arms, but she really did great! I got a little nervous for the appointment because Mary, Dr. Moss's nurse practitioner said she would look at the MRI and be back, but kept not coming back. I was starting to get worried, especially considering we are supposed to be on a plate today to head to disneyland. She said there is more fluid in the left side, just like there was before, but things looked good. The reason it took so long is because she called Dr. Shaffron and had him compare her old MRI to her current one. Things looked pretty much exactly the same. THANK YOU GOD!! Then she said the most amazing thing..... we will see you in 6 months! Now, for some people, 6 months might not sound like a big thing, but to us it is HUGE. We had a very rough start with shunt problems and within the first 2 months had spent about 1 month in the hospital. Those were some very rough times. For now, things look great, and I couldn't be more thankful. We're taking it one day at a time.

My little baby's first sickness

Though Madi has been sick in the past, it was always what I call 'shunt sickness', because it was always something to do with her shunt. This time, though, Madi is just plain sick. She's been sick since Monday after catching her brother's swine flu (I think, but it hasn't been tested) bug. She's been spending a lot of time wrapped up on momma, which is by far the best place to be when you are feeling sick. Today, though, all she wants to do is sleep and her fever is back. We have spent hours and hours in this same position. She was awake long enough to go get her third shoe for her foot (pictures to come when she is feeling better), but that is about it. If she does not improve by tomorrow, I will be taking her in to the doctor. Please keep my little angel in your prayers!