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!

 

Ramya's MRI Went Well

A big "thank you" to everyone who prayed for Ramya today.  Though an MRI is not a big procedure, undergoing sedation is never fun on a little one, and looking at those big machines can be scary. 

We got to Phoenix Children's Hospital (PCH) right about on time, at 6:00 a.m..  We were taken back about 5 minutes early and Ramya was prepped.  The MRI started at about 7:10 and lasted a little over an hour and a half.  I had prayed for a wonderful anesthesiologist, as I found that makes a big difference, and God gave us one for sure.  He was very understanding and made sure that I was there to make her comfortable while she was falling asleep.  Ramya was not too happy when the anesthesiologist tried to hold the mask to her face, so I held it instead while I held her hand.  I also sang to her to help calm her, which worked like a charm.  She was out before my first round of "Twinkle Twinkle" (her requested song) was over. 

When I had told the anesthesiologist I wanted to be there when she was waking up, he told me he thinks it's so much easier and less confusing on kiddos to have their parents there when they wake up.  I totally agree and wish all anesthesiologists agreed, because I've had to argue with them more than once!  After the procedure,they brought me to see her.  I got there when she was just starting to wake up but was still very out of it and hadn't opened her eyes yet.  After she started coming out of it, she cried quite a bit, and I just held her.  Once she fully came out of it I gave her apple juice and then she felt much better! They were able to start her IV in her foot after she was asleep from the gas, and I was so thankful for that (she needed contrast for the MRI).  It didn't bother her one bit when they took it out, which I was very happy about.

After the MRI we headed upstairs to visit a friend and her sweet baby who are at PCH right now.  Jemma is a week old and will have her first of many major heart surgeries some time early this week.  Please keep this beautiful little blessing in your prayers.  Please also pray for strength, endurance, and wisdom for her momma, who is there staying with her. 

After visiting, we headed home.  Ramya was very excited to be reuniting with Conner, David, and Madi.  She said she missed them at least 10 times while we were gone.  Tonight she was helping me set the table and I told her we needed 5 forks because we have 5 people in our family.  Then I asked her who was in our family, and she shouted, I AM!  Yes you are, sweet girl; always and forever!  I am so thankful that Ramya is home with us now and that I'm finally able to be there to hold her when she is upset and soothe her during her procedures.  It's a blessing to be her momma!

Oh Me, Oh My We Saw GI

Yesterday was our appointment at PCH's Scottsdale office to see GI.  We saw Dr. Silber because we had heard great things about him from a friend.  Our main goal was to talk about Ramya's bowels because we are still trying to see if she will need a cecostomy in the future, or if she can adequately manage them on her own.  The general surgeon, Dr. Bae, believes that she will likely need the cecostomy, and I agree. I can clean her out just fine, but she has many accidents.  Though she doesn't care right now about them, I know eventually she will.  The cecostomy would help keep her from having so many.  Before we decide on that, though, we want to exhaust our non-surgical possibilities. 

Dr. Silber asked us a lot of questions to find out as much as he cold about her history, what we've seen during her 6 months (AH... 6 months!!!) home with us, where she is at developmentally, etc...  He spent quite a bit of time with us.  I went in prepared to argue why I don't want to give Ramya miralax.  I know that miralax is the go-to for bowel issues, however, I find probiotics, George's Aloe Vera Juice, and Senna when needed, works very well.  I don't like that long-term use of miralax in children has not been adequately studied, and I do not like putting PEG in my kiddos bodies, even though it is not supposed to cross the blood/brain barrier.  Anyhow, I was told by Dr. Bae that she would likely need to try miralax, and most of what I read is that kiddos with SB take a daily dose of miralax, so I was anticipating a struggle.  Thankfully Dr. Silber was totally on board with our approach and saw no need to try and change it.  The only thing he would like to do differently, though, is to give Ramya Ducolax suppositories (well, half of a suppository) once a day to see if we can clean her out a bit more in one setting, and therefore keep her from having so many accidents. 

We talked about her weight gain, as Dr. Bae had put it in the notes he sent over, and he asked me if I wanted to put Ramya on an appetite stimulant.  I told him that Ramya had grown about 3 inches taller in the past 6 months and has also gained 2 pounds recently.  I am thinking she's just one of those kiddos that grows up, and then out, and then up, and then out.  First came the height, and now a bit of weight gain.  I told him I'd rather wait and just see how she does, and he agreed that we could do that. 

Dr. Silber noticed that Ramya's iron levels are pretty low so he'd like Ramya to take iron supplements for a few months.  He thinks because she was so deficient for so long, her body is still struggling to catch up, but that after a few months, it should be fine and stay fine.  He doesn't see it being an ongoing problem and doesn't think that she will need supplementation past a few months.

It's hard to add another doctor to our list of frequents, as Ramya now sees the pediatrician, orthopedic surgeon, neurosurgeon, endocrynology, and GI frequently, and Madi now sees the orthopedic surgeon, pediatrician, urologist, neurosurgeon, and neurologist, but I can't complain because my girls get AMAZING care and have doctors that truly care about them.  I am so very thankful for that! I can't wait until the day when they can see the doctors at the same time, and at the same place.  That will be a life-saver.  Right now Madi is on our insurance and also long-term care and can only see her doctors out of CRS.  Ramya is on our insurance, but we can't apply for long-term care for her, as we are still waiting on everything to be 'official' in Arizona so that she can be give our last name.  Until then, she sees the exact same doctors (for the ones that they both see), but at PCH.  So, for now, we can't coordinate.  The good news, though, is I can sneak in questions to the doctors about the kiddos they aren't seeing, and save myself a call in to the office. 

In other news, Madi got her new HKFOs today.  She was sooooo very excited.  I'll post about that soon, and show some pictures :).

 

The Answer to Our Mystery... is a Mystery!!!

Today I thought we were going to have a day off (boy doesn't that sound nice!?!?!?).  We had therapy planned from 10-12, in our home, and then Conner had Karate at 5:30, but the rest of our day was nice and open.  We thought we would go visit a friend who is in the hospital that we have really been missing and wanting to see. Our plans changed, though, when I got a call from Phoenix Children's Hospital (PCH) this morning asking us to come in at 3:15 for Ramya's dye study.  We headed down, got there, and they couldn't find her time slot.  I worried a bit thinking that I brought the wrong girl for the wrong dye study, as I got a call about both girl's dye studies today.  Thankfully, though, they were able to find her appointment and they got us in quickly.

The whole point of the dye study was to find out what that mystery cavity was through her mitrofanoff.  When I try to cath through it at home, I only have success about once a week.  Of course, when I cathed her through the mitrofanoff for the study, it went straight in the bladder.  go figure!  We filled it up with dye, then they had me take the cath out and try again, so we could see if we could get some dye in the mystery cavity.  Well, that's when things went South.  The catheter went down past the bladder.  They thought it came out through the urethra, but it didn't.  Somehow it entered her vaginal cavity through some mystery passage way.  Well, that, or urine was refluxing  in to the vaginal cavity.  We turned Ramya every which way, but we really couldn't quite figure it out.

After that, I slowly removed the catheter through her mitrofanoff as they put in the dye.  We didn't find any mystery cavity, however, we did find a big gap that explains the oddness we have been having.  There is a section of the tubing material (I think they used a piece of intestines) that is much wider than the rest.  One section of it goes off to the side.  So, when the cath goes in, it's easy for it to go off to the side and not down to the narrow part it needs to.  Here's kind of what it looked like, for a visual...

(and yes, I really did draw that on paint... be jealous of my mad drawing skills ;)).  So it was wider at the top, went off to the side, then got narrow at the bottom.  Where it goes off to the side is where they think the cath keeps coiling and why it's hard to get it to work correctly.

 

I'm glad to have that mystery figured out, though I'm really not sure how it can be fixed and I'm curious to see what the doctor says when we see him.  I'm also a little stumped on our new mystery, and am anxiously awaiting what the doctor says about that as well. 

 

Ramya did very well for the test and everyone thought she was just the sweetest little one (she is).  They said they are surprised I've only had her home for 4 months because she seems so comfortable and I seem to know so much about her already.  I really do think she's doing well so far.  She still loves sharing a bed with us and being rocked and held, but she  is starting to get very independent too, and I hear "I do myself!" quite a bit.  Her English is really coming along and she is learning quickly. 

 

So that's that for now.  I'll update again when I hear from the urologist.  I'm praying we can find a way to fix it or manage it, other than surgery, so please join me in prayer for that as well.

 

An Update from Our Current Hospital Stay

As some of you know (from my Facebook posts), Madi and I are back at Phoenix Children's Hospital.  We are going on our second night here, though it looks like we will be sprung tomorrow... woooo hoooo!

 A view I'm thankful for, but could use a break from seeing ;)

 

 

 

On Wednesday we had a normal day.  Madi had a little dance recital and was glowing.  She did so great!  Conner had Karate and was given a red stripe on his white belt, and couldn't be more excited! We didn't know he was getting one and we are so proud of him!  Ramya had a good day and was enjoying watching Conner and Madi and being with family.  It was a wonderful day.... until dinner time came.  About half way through her dinner, Madi stopped eating and started looking a little ashen.  She started throwing up and told me her stomach hurt.  Madi throws up during eating fairly often, so it was nothing new to us.  She and Ramya were fighting over a little plastic bird earlier that evening, and Madi was crying and upset that Ramya wouldn't give her the little bird, so I figured the crying upset her little tummy and that was why she was throwing up.  She stopped throwing up, but looked like she didn't feel well.  She was talking to me normally, responding normally, but just didn't look quite right.  She also didn't want her brownie, so that tells you something was very wrong ;).  She started throwing up again, and just kept going.  At first she didn't want out of her special tomato chair (she was sitting and eating next to me), but she kept throwing up, so I took her out, sat on the floor with her (so that if she threw up, we were still on the tile), and held her.  I started noticing she was spacing out and looking off to the right.  I told David something didn't look right and told him to get her rescue med.  He went to get it, and by the time he got back, the repetitive twitching had started.  I gave her one dose, and she started to come back a bit, but still wasn't looking quite right.  We called 911 to have them come evaluate her.  They came and asked a bunch of questions, started assessing her, and then the seizing started again.  They watched her for a bit and were trying to get an IV in (thank God they were able to get it in her little foot.  I'm so thankful she doesn't feel it there so it can't hurt her!!).  I asked if I should give another dose of the rescue meds and they said yes, so I gave another.  She seemed to come out of it a bit, but she had never seized twice in a row before, had never seized other than coming in or out of sleep before,  and she had never not responded to the first dose of rescue meds before, so we loaded up in the ambulance to bring her in and have her evaluated.  On the way to the hospital, she started seizing again.  They gave her verset in her IV, and shortly after, she was completely knocked out, but wasn't seizing anymore.  Because we had just checked her shunt on Friday, they didn't feel the need to do xrays and a CT scan again, but neurology wanted us to stay for another EEG and observation, so they admitted us.

 

 

 



The only thing they can see that may have caused Wednesday nights events is that Madi's urine sample from Friday had grown e-coli.  This isn't surprising at all, since Madi is cathed 4 times a day and always has some bacteria in her system and e-coli is the most common and least concerning.  She also has renal reflux, which compounds everything.  She is on a prophylactic antibiotic because of it as well, to try and keep UTIs away.  Usually, the urologist only worries if she is showing signs of a UTI.  Her urine is clear, though, she's not throwing up unless she's seizing, she's had no fevers, I haven't seen her dumping white blood cells, there is no smell to her urine, her appetite is good, and she has no symptoms of a UTI.  With the culture that grew, though, the numbers were higher than they like to see, even with it being unsymptomatic.  They decided to treat the bacteria/UTI because if it is causing her seizure threshold to lower, then it's absolutely worth treating.  I'm praying that is what was causing her body to go haywire and that, once treated, the seizures will stop.   I told the neurologist that Madi had never seized during the day like that before, and never not responded to her medication like that before, and basically he said seizures can change and it's not unusual for things like this to happen.

Madi just got her second dose of IV antibiotics.  They want to observe her through tonight, but think we will be able to go home tomorrow.  They are upping her doses of daily and rescue seizure meds in hopes that the higher dose will help keep the seizures away as well.  She was on a very conservative dose, and still has some more room to increase if we need.

Conner and Ramya both cried when Madi and I left via ambulance again.  I feel sad that I have to be away from them.  Between the India trip, the extra doctor's appointments, and the trip in last Friday, it's just been a lot for them and their little hearts.  When I was talking to Ramya on the phone last night, she told me she was sad and wanted me to rock her.  I made sure to tell her that daddy is really good at rocking too :).  Today she and Conner came down to visit.  The hospital is still on RSV restrictions, so they couldn't come up, but David and I switched spots so I could spend some time with them.  It seemed to help (well, that and a pack of Scooby Do fruit snacks too ;)). 

I'm exhausted from about 3 hours of sleep last night, and I'm feeling a little sad and nervous about what happened on Wednesday night.  I'm trying to dwell on the positive, though, so I thought I'd post some things I am thankful for.

1) I am thankful for family who comes to help out.  For my mom who helped with Conner and Madi today, and then came down to the hospital to visit with us.  Also, for my sister-in-law who came to visit and brought Madi a cute little green tu-tu and green and pink monster stuffed animal.

 

Rockin' her green tu-tu!

 

 

2) For therapy dogs...

 

 

 

3) For the view from our room...

 

 

 

4) For Child Life and their help keeping Madi entertained and happy

 

Playing Candy Land

 

 

 

5) For reasonably priced food at the hospital that tastes pretty good too.  Also, of course, for the Starbucks here in the hospital!!  I didn't eat anything or get coffee until about 2pm, when my mom came with my wallet, so that Starbucks was like mana from  Heaven right about then :).

 

6)  For amazing doctors that care about Madi and make sure to come check in with us, even when they don't "have to".

 









7) That the paramedics now know exactly where our house is and don't get lost any more ;).

8) For good friends who love us, pray for us, and even brighten our day with little gifts.

 

 

9) For facetime and Yahoo Instant Messenger, helping us feel more connected, even during our times away.

 



10) For my faith and hope in God, because no matter how hard things feel, I know everything will be ok.  I may feel like things are out of control, but I rest assured knowing that God is always in control.

 

 



Tomorrow Ramya has a urology appointment at 1:00 at PCH for a urodynamics test and an appointment with the urologist.  The hospital said they will most likely be able to get us out in time for her appointment, so the plan is for my mom to bring Ramya down and for Madi and I to go right over with her.  It will be another busy day, but then we will be home again as a family, and most of Ramya's initial tests and appointments will be behind us for the time being.  That is sweet music to this tired momma's ears!

A Life Update... Urology, UTIs, Attachment, and More!

I have no good title for this post, because it's going to be a hodgepodge of updates :).

First off, I talked to the urologist and because Madi is non-symptomatic for a UTI, he doesn't want to treat her.  I have learned over the years that you don't start antibiotics unless the urologist thinks you need to. Doctors and hospitals look for signs of infection often times without taking cathing, and the bacteria introduced there, in to account. There have been numerous times we were told to treat her UTI and then her urologist reviewed the results and said not to.  I figured as much, which is why I didn't fill the antibiotic prescription the hospital gave us when we are in on Friday after the seizure/headache/projectile vomiting from Madi. And on that topic, I really, honestly, just believe her getting better was a miracle.  Once when Madi was a baby, we'd gone through heck with her shunt.  We had an infection just a few weeks after we were out from the hospital that landed us back in the hospital for almost 3 weeks.  That cleared and the new shunt clogged.  That was another 3 day stay for them to revise it.  About two weeks later, Madi was showing signs of shunt failure again.  I took her in, Dr. Moss checked her shunt, and he said that it was definitely not working again and would need to be revised again.  We spent the night and Madi went NPO for surgery in the morning.  The morning came and revision time came, but when Dr. Moss checked her shunt (as he always does before surgery), it was working again, so we got to go home.  I really think that's what happened this time too.  Madi was so very miserable.  She had the seizure, she didn't want to open her eyes, she kept holding her head saying it hurt, she was projectile vomiting, and she kept drifting in and out.  Right before the CT scan, it was as if a light switch was thrown.  All of a sudden, she was her normal happy self.  It was crazy!  I really believe God cleared that shunt for us!


Today we headed back down to Phoenix Children's Hospital.  We were there twice last week (once for each girl) and will be there twice this week (for Ramya).  We are nearing the end of the testing she will need done (for now) and I can't wait!  PCH is an amazing hospital, and we are very thankful for the care they have given our girls, but I am growing weary of the 30-40 minute drive a few times a week, and the number of hours we spend there.  Today Ramya had a VCUG to check and see if Ramya still has renal reflux.  The good news is that it does not look like she does!  YES!  That means the surgery (well, half-surgery ;)) she had in India was not a complete waste.  It did correct her renal reflux.  That is awesome!  The test also showed that she did not have the augmentation surgery when they did her mitrofanoff surgery, which is a bummer.  If Ramya is going to be "socially continent", it's a surgery she will need.  It's not a fun one, and it is usually done with the mitrofanoff surgery, so it's too bad that it will mean another surgery.  Boo.  I am very thankful that when and if the time comes for that surgery, though, that I will be able to be with her and make sure she is comfortable and well cared for.  That is something worth celebrating for sure.  My little girl will never go through surgery alone again!


On Friday, Ramya and I head back to PCH for a urodynamics test that will give us a better picture of how much fluid Ramya's bladder can hold, if it is rigid or spastic, and how quickly it leaks.  After the test, we will see the urologist to go over our recent testing and get a better picture of what we need to do.  We know she may need the augmentation surgery, we need to deal with her granulation tissue on her belly button that is driving her nuts, and that the MACE procedure she had done in India isn't looking right (placed right) and needs to looked reviewed as well.

Attachment is chugging along.  I still hold Ramya quite a bit, though much less than in the beginning.  She still prefers to sit on my lap and have me feed her, so thatly is something we do most of the time.  She also still prefers to be rocked to sleep and sleep in our bed, so that's what we do!  I have been tired lately (and seriously need to go to bed now) and haven't been as cheerful and full of life with the kiddos lately and I need to get myself caught back up on sleep.  Thank God for coffee!

Ramya's time-ins and times where she just gets in a funky and can't get out of it have been decreasing, which is nice, though they can still be pretty intense.  Yesterday we had a melt-down that lead to a time-in.  She was very upset and yelling at me and told me "me no like you, momma!!".  I wasn't sure if I should laugh or cry.  I told her I'm sorry she feels like that, but I still love her very much.  She wasn't too fond of that answer, but it's the truth :).  I know she was just upset at me for enforcing rules she didn't want to follow, and I know that she does enjoy spending time with me, but it still made my heart a bit sad to hear those words.

Ramya's English is getting better.  She is understanding more and more every day and is expressing herself more and more.  She has just discovered a love for salad and asks for "tiny bites" of mine all the time.  She still loves eating beans and meat, and could eat them all day long!  She's also discovered a love for peanut butter and jelly sandwiches, which is really nice since it's a snack I can easily bring when we are on the go.


 I'll be back later to update with Easter pictures. All the kiddos loved Easter.  Conner told me that in Church he learned that Easter isn't about eggs and candy.  It's about Jesus dying on the cross for us because he loves us so much.  He talked a little about what exactly that meant too.   I was quite proud of him for expressing what he learned (we had talked about it at home as well, but I wasn't sure if anything sunk in), though he still woofed down the candy and was giddy about the egg hunt ;).  Madi loved the hunt but wanted nothing to do with any of the candy.  Ramya loved the hunt, loved the boiled eggs, and thinks the purple jelly beans are pretty nice as well. 


I think I about covered it all for now!  I'll be back with photos and more urology updates soon!
 

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)!!!