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)!!!

 

Ramya and her Daddy

 

 

Ramya has her daddy wrapped around her little finger, that's for sure!  They love spending time together, and they both soak it all up.  Ramya prefers to be held and fed by me, mostly, but is enjoying her special time with daddy too.  They have had two little "dates" out, and she really enjoyed both.  A few weeks ago she wanted to go with David to the store by herself.  She got to ride in his car for the first time.  She left with a smile, returned with a smile, and was excited to tell me all about it.  This Saturday, Conner had a build-and-grow clinic at Lowes David was taking him to and I was doing a garage sale with a friend.  I asked Ramya if she wanted to stay with me, or go with daddy and Conner.  Of course, she wanted to go with daddy and Conner in daddy's car.  She had a blast!  I heard all about it when she got home.  I love watching those to laugh and have fun together... David is an amazing daddy!

 

 



"I love you, Momma"

I've been waiting for those words.

 

"I love you, momma."

 

It's amazing how much good those four little words can do for a tired mommas heart!

 

 

I had been staying up late to get ready for a garage sale and keep the house tidy-ish.  I was tired, feeling sort of "bleh", and was trying to get ready and get my act together.  Ramya was in the room with me talking and playing while I got ready.  That's when I heard it...

 

"I love you momma."

 

Ramya usually repeats me when I tell her I love her ("I love you, Ramya." "I love you, momma.") but this was the first time she told me just out of the blue.

 

The next day, David got to hear those wonderful four little words too.

 

"I love you dadda."

 

 

Well we love you too, precous girl, and we have since the moment we saw your photo.  We have always known that God planned for you to be a part of our crazy family, and we are so thankful that you are!

Our Family Photos

Our amazing friend, Michelle, took family photos for us as a gift to our family.  She does an AMAZING job and spent so much time with us to make sure everything was perfect.  We are so very thankful for her generosity and love for our family!  I got the CD of images today and just couldn't wait to share!

P.S. If you live in Phoenix and are looking for a photographer, please let me know!  Michelle was so patient with the kiddos and really took her time getting everything right.  She is affordable and amazing to work with!  Her packages include a session and 25 edited photos on CD.  Please e-mail me at jamie_lugo@hotmail.com if you would like her contact information :).

 

Dance Your Heart Out, Madi!

Madi just LOVES dance class and it doesn't get any cuter than this!  Go Madi, go!

 

 

(Madi uses her rifton mobile stander (backwards) and her HKFOs in dance class :))