Trystian's Journey

Since we have been back in the states and getting settled, I have found a new set of doctors to follow Trystian's Kidney disease.  We had thought we were in the clear and good until he hit puberty, however we were very wrong...

Trystian was born with hydronephrosis (water on the kidney).  Once he was born, we were sent to a hospital to be admitted and he underwent tests at 5 weeks of age to find he had hydronephrosis due to high grade reflux on both sides.  His reflux was 4 on the left and 5 on the right.  This damaged his kidneys resulting in his having stage II end renal kidney failure.  He had surgery when he was 1 to hopefully fix this.  This surgery was quick, and no cutting.  It's called deflux.  They simply run a line up the urethra while under anesthesia and fix the ureters by inserting a material that will help manage and downgrade the reflux.  The surgery was a success as his reflux went down to a 1 and 2 on each side.  A year after the surgery was completed the urologist released us from his care and said he was no longer needed unless a urinary infection happened.  A year after that the nephrologist released Trystian from his care and said that all looked great and that Trystian probably wouldnt require anything until he hit puberty.  We were told that the pediatrician was able to monitor the kidney disease by blood tests. 

 Years later, after moving here to the shore, we found a pediatrician for the boys and the first thing he said he wanted for Trystian was an ultrasound just to baseline his care here.  Well, it started with that routine ultrasound.  The pediatrician referred us to the local urologist, however the closest pediatric nephrologist is across the bridge.  The urologist ordered an ultrasound, and we got that done locally.  As the tech was scanning Trystian I could see that one of kidneys was not like it should...  The results came back the day before heading cross the bridge to see the nephrologist.  It showed that his right kidney was very dilated.  As we saw this nephrologist for the first time he said that he couldnt say for certain what the results were for the ultrasound except that we should consult with the urologist more in depth.  He said that the blood results looked okay although some of the levels were rising.  We spoke to the Urologist later that week and were told that we should see and consult a pediatric urologist further across the bridge.  We went to Johns Hopkins to see a urologist who then said she would like to run a bunch of tests and once we had those scheduled, we took the trip back across the bridge and got them done. 

A repeat ultrasound showed the same results as the first.  The results of the VCUG showed that Trystian no longer had reflux... (although this is good, it brings more questions because there has to be a reason why the right kidney is so dialated with a back up of urine).  The MAG-3 scan showed that he had a decrease in kidney function.  He had a 48% function on his right kidney at 5 weeks of age, and now he had only a 31% function.  The fact that it was decreased and after careful reviews of the ultrasound and VCUG, the urology team at Hopkins determined that Trystian had an obstruction at the opening of the ureter to his right kidney.  The obstruction was why his kidney was not draining properly and the team of doctors thought it would be best to operate. 

While I waited to hear about the operating date, the urology team continued to review Trystian's case and thought that the surgery should be done sooner rather than later and they bumped up the date!  I got the date set and we were off to Hopkins so that Trystian could have surgery...

My mom came up with me to keep me company.  I thank her for that, I'm not sure what I would have done all that time! 

The surgery was only suppose to take about an hour and a half and only a 1 night stay at the hospital...  Well as the morning of surgery started, we didnt didn't know what was in store!

Trystian was very anxious and recieved some sedative before even going into surgery...  He was very nervous about everything, and I dont blame him!  Once surgery started, my mom and I went down to grab a cup of coffee.  I got a phone call from the surgery unit that we needed to come up to have a small conference.  We weren't sure what was going on until the doctor came in the room to talk to us.  The doctore explained that once they got the machine set up (The surgery was being done with a robotic laproscopic machine) that they found a second much more serious obstruction.  This one would have to be fixed first.  He said that the ureter itself was like a sausage with an obstruction on either end.  He said that he wanted us to know about the change in surgery plans and went in to scrub up. 

We waited, and waited, and waited!  We got very anxious ourselves as 4 hours passed, then 5, then 6, and 7...  At 8 hours, we were finally told that the surgery was complete and that Trystian should be waking up soon.  The doctor explained all the complications...  The ureter connection to the bladder was like cement!  The ureter was also stretched out the width of someones wrist and what they consider a "mega ureter" The doctor had to detatch it from the bladder, reconstruct it, then re-insert it into the bladder and seal it and the bladder back up.  He also had to fix the vasa deferentia as it was also cemented and non-working (this is the tube where the sperm were to travel from the testicles).  He put a stent in place in the ureter to help with the healing.  The stent will have to be in place for a month and then Trystian will have to have another procedure to have it removed.

When Trystian woke up from surgery, he had a foley catheter in place as well as a drain coming from one of the incisions.  He had a port in one hand and an IV in the other.  Trystian was very weary of all this and I dont think he really smiled much the first couple of days.  Because of the extensive surgery, we ended up staying 4 nights in the hospital.  We had only planned on 1 and brought only what we needed for that 1 day...  Trystian was scared to get out of bed and try to walk, and he was in a lot of pain!!  After coaxing him, we got him to stand and walk to the doorway of his room to sit on a wheelchair the night of the second day.  We went down to the play room, and he really didnt want to do much, we kept the visit brief and got back to the room to make him comfortable.  The next day we got him to walk to the wheelchair and we made 2 trips to the play room.  The following day he got a surprise... his brother and daddy, and poppa came up to visit!!  This was the turning point of his healing!!  He was a much different person with this!  He walked to the playroom without a wheelchair! He laughed, he smiled!  Granted, he hadnt been able to hold down any solid food prior to this so the doctor had taken away all solid and liquid foods and said to just have him fast until he "farted", this didnt stop him from having fun with his family! 

The next morning after everyone had visited, he woke up exited to tell me "mom, I farted" and so the doctor let him have some water, and juice.  Once we got him to hold that down, he was given jello.  Eventually at the end of the day, he was allowed to eat some real food!  YAY!  Now he was walking alright and eating and holding it down, the doctor was finally comfortable with releasing Trystian from the hospital.  With poor Trystian being under anesthesia so long and the extensive surgery he underwent and all the complications we had had a rough time getting back to his old self! 

He was released with a catheter and I was taught how to remove it when it was time.  He was happy to be able to go home to see his daddy and brothers!  I was happy to go home to sleep in a real bed!! I was however weary about the trip home... we would have a 3 hour drive and since Trystian had a catheter, and a carseat, I wasnt sure how this was going to work.  We got it to work though... We planned the departure of the hospital with a dose of pain medication, and I made the straps lose and we put a pillow between the straps and his crotch so that it wasnt hurting him. 

Now that we are home, he is doing great.  Pain management is good, and he is trying to walk and play with his brothers, although I have to remind everyone that he can't be doing a lot yet since he has the catheter still.  We attemted to climb the stairs, but it is too painful, so he has just been sleeping downstairs on the recliner for now. 

I'm so glad that Trystian is doing well!  I know he will have a procedure next month to have the stent removed, and depending on if the second obstruction fixes itself he may need another surgery in the future for that.  I'm really hoping that he will not need any repeat surgeries and that his kidney will not lose any more function. 

Trystian's case was extremely rare...  The doctor said that he had never seen any case like this before. In fact Trystian's case will most likely end up in a medical encyclopedia soon!  WOW

You can follow him on his Facebook page: www.facebook.com/SirTrystian

Happy Halloween

So this year, my boys wanted to be Ninja Turtles for Halloween...  We went trunk or treating at a local church the night before Halloween, and then on Halloween night we went to a neighborhood that I went to growing up... Unfortunately there was not a real good turnout at that neighborhood, so the kids didnt get to go to many houses.  We know next year that we will have to find a new spot.  The kids still had fun, and they got a good amount of candy too. 

 

Happy Birthday Ryder

Ryder turned ONE! 

Wow!  I can't believe how a year flew by!  I still remember bringing Ryder home in his premie size clothes!  Now, well now he's in a mix of 12-18 month clothes, and well I want to cry that he is growing up so fast! 

He started walking, he waves, he says "bye", "mama", "dada", and he pants when he sees a dog!!

For his first birthday I planned a Cookie Monster Cookies and Milk party.  I think it turned out well.  Not as many people showed up as I was hoping for, but we all had a great time! 

HAPPY BIRTHDAY RYDER!

 

 

 

 

 

 

 

 

The Trip from Japan to Delmarva

So our move we had scheduled and set up was changed a couple days before departing Japan...  We now left earlier and landed much sooner than we had planned on.  Which was definitely a good thing!

Our first flight from Misawa was quite nice!  It was a smaller type plane, but the Japanese are so nice, and the flight attendants were so willing to help me with the baby car seat to get it in place, and get us on the plane first as well.  We also were able to sit near each other quite nicely! 

After landing in Haneda, we had to catch the bus to Narita.  The bus ride was challenging as we had luggage for 5 people, a cat, and of course one of us was in a car seat (and it wasn't me)...  We all had to sit in different seats at different areas on the bus.  Yes my 2 eldest children were segregated from us by quite a distance!  They did well on the ride though, I'm sure they were tired!  The cat even got her own seat too!  As we got to Narita, we claimed our bags from the bus and headed in to get checked in to our longest flight... 

When we walked into Narita, we were astounded at the amount of people there were in line!  But we were kinda lucky because we had 5 people traveling, a cat and TONS of bags, we got to go in the line needing assistance which was by far the shortest line there!  We got out bags checked in and found out I had to take the cat to another area of the airport to finish her check in, so after detouring to accomplish that, we were finished signing in and had our tickets in hand.  We went to find some food to eat.  We thought there would be more of a selection of food once we went through security, however we were wrong...  We did not have too much to choose and eventually just settled for the tiny shop which the kids chose pizza to eat...  I was kind of hoping for one last great ramen or something, but oh well.  We didn't have too much time till we had to board our flight for America.  In fact, we spent little time eating and then rushed to our gate in the middle of boarding!  We had an issue with getting seats too.  They wanted to seat us all in different areas of the plane!  That was not happening for this long of a flight!!  Once we got on the plane, we found out that the seats that they had eventually found us together were double booked and someone else was sitting there already.  We kind of held up the line of people boarding the plane then because we had 5 people of which was a huge car seat in the middle of the isle with no where to go.  Finally they moved the person sitting in our seats and I was able to get car seat installed at the window seat.  I then had one of my elder sons also sit with me, and the other sat with dad across the isle.  Once the plane departed, the person sitting in front of the car seat became furious when they could not recline their seat!  They asked me to move the seat!  I told them no... Thankfully they did not cause a seen, but goodness, they gave me death stares the rest of the flight!!  Ryder did great as he slept most the way (which was the normal night time really)...  The elder boys slept most of the way too, which was nice! 

Once we arrived America, we departed the plane and soon found we had to carry the stroller down 2 flights of stairs and an escalator because we could not find an elevator!  We made our way to the customs and immigrations and claimed our bags and got our passports stamped.  When we got to the other side, we rechecked our bags then had to go through security again to get on the domestic flight.  Well this proved harder!  The security in America is so different!!  We all had to remove shoes, where in Japan, they didn't have a problem with the kids keeping theirs on since that's just way more work and time for everyone!  Also, the water for baby formula... well in Japan, they had no issues during the two times we went through security to just let the diaper bag go through... no, through American security we were asked to dump out well throw away our canteen of water!  I fought it though and explained it was baby water and after they wanted me to drink it, then they also did that test on the container they let me keep it... Also the cat needs to be in your arms when walking through the security and not in the carrier... baby has to also be in your arms and not in the carrier... Well since I got the cat out, and I also had touch our son, I somehow was seen as a threat and once through the security gate, I had to be screened separately with the wand as well as a swab of each of my hands...  Yup... well that left poor hubby to fend with getting everyones shoes on (including the infants shoes!!)  and getting all the carry on luggage back together (including each laptop, innotab, and ipad that had to have separate bins)...

After all that, we didn't have much time to make it to our gate!  We were very hungry too!  So not time for food, and with cranky kids, well that sucked!!  We got to the gate to find out it was actually delayed though (which was good because if it wasn't delayed then we probably wouldn't have made it).  When we finally got on the plane, the service was not pleasant!  Nobody asked if they could help with all the kids and stuff we had... We all had to sit in separate areas, and they could not get us near each other!!!  The only two seats together had to be me and my baby...  Once we got situated we found out there was also an issue with the plane to have maintenance on before departing.  So with weather and maintenance, we arrived BWI much later than planned and missed our bus to get us home!!!

Now we were stranded in BWI with no hotel and not even one we could call and book for the night because they do not allow animals!!  The bus to the shore wouldn't run again till the next morning...  and so we were stuck!  We didn't have phones or anything to use in America... and so I set out on my search for the nearest pay phone.  It took a while to find one!!!  Yup, we don't have many of those around now a days!!! and the one I found cost me 2 dollars to talk to family for 5 minutes to set up for them to come pick us up that night!  It's almost a 3 hour drive from the shore to BWI, so we patiently waited in the baggage claim for family to come pick us up.  Once they got there, we left to make our way home...  Stopping at a Royal Farms to grab food since the kids were starving at this point with no food on the flight, and no food from the previous airport as well as BWI since nothing was open when we landed...  We got home early morning and slept!  Yes everyone slept except me and Ryder!!  Ryder didn't know the time difference and so he wanted to be awake!  ::sigh::  I made and drank an entire pot of coffee that early morning!! 

Phew!  It was definitely a trip to remember!!  I'm sad to have left Japan, but it is nice to be near family again...

A long move!

Well, A lot has happened since I last posted...  It's been pretty crazy and I just have not had the time to get a post out there...

In August, our house was packed up and shipped out of Japan.  Then on my birthday, we boarded a plane and headed back to America.  The trip itself is worth a blog!  After that we tried to get settled in with our parents while trying to find jobs.  My husband found a job right away, but in order for me to work, the job has to be flexible enough for doctor appointments for sick kids as well as IEP meetings for school and also make enough money for daycare for the youngest... Not to mention before and after school care for the school kids!  So I admit, I'm being very picky with my job choosing. 

In the meantime of trying to find a job, I've been all over the place with doctor appointments for the kids to get their school physicals, as well as medical work ups for my eldest son whom has Stage II end renal kidney failure.  My middle son has his share of appointments for me as well with IEP, and then my youngest, well I was planning his first birthday.  That blog will be posted soon too. 

I have a lead on a job, and as it might not be what I want, we sure do need some more income!  It means I may be working the swing shift as hubby gets home to take care of kids while I work, then I'll get home to sleep, then be home with the baby during the day.  Hey, it's something, and with the holidays right around the corner, we NEED something! 

We are still looking for our own house, and wow, it's NOT a buyers market right now!  We would like to stay in the general area we are in right now as my kids have already started school and have activities they are involved in.  I too am involved in this community directly as well because I became a boy scout... Well a Den leader anyways...

Stay tuned for some blogs... I'll try to be more frequent now that we are getting settled in.

Tie Dye with Acrylic Paint-- WIN

After the Kool aid tie dye did NOT work, I looked again to the internet to find a way to make tie dye shirts without a kit.  (because I still could not find any kits or fabric dyes here in Japan)

I came across a few blogs and youtube videos about using acrylic paints.  Below is what I did.

 

First you collect your materials...

 

Then Mix 1 part acrylic paint to 1 part rubbing alcohol.

 

 

Start mixing.  I just used a plastic spoon with plastic containers.

 
 
 

 At first it will be gloppy.  This is the alcohol starting to separate the color and oils and such...  You can add more alcohol as the colors get smoother.

 

Once you have a nice smooth consistency, you are ready to strain.

 

 

Once you strain it, you will see the "plastic" stuff in the strainer.  That is the part of the paint that gives the paint the hard stiff feeling when dried.

 

 

Once you have strained your paint mixture, you can add a little more alcohol.  About an ounce of paint gave me a full 5-6 oz bottle of squeeze tie dye color!

 

 

Have fun preparing your shirts and coloring them!   

 

Once I colored them I let them dry overnight.  I would have hung them outside, except it was raining out!  I still think my kool aid ones looked better, they were more vibrant... Oh well!  These turned out great looking too!

 



 

After drying overnight, I took a deep breath and followed the directions on the other tutorials that say to put them in the cold salt water bath to set the colors...  The colors did NOT bleed out!  I was so happy at this!  I ran them through a normal wash and they are just ever so slightly faded but I suppose that is just the color setting in.  They are not really stiff either...  I think diluting them with the alcohol helped get the stiffness out of the paints for dyeing.  They turned out GREAT and I will definitely do this again if I cannot find any dye's or kits. 

 

This would be a great activity to do with a bunch of kids!  You could do all sorts of patterns too!  I loved doing this project and am very happy with the way they turned out!  We will be wearing these matching tie-dye shirts at the airports for our travels home.  Each of us have at least 2 of them (this way if we need to change for any reason... we have kids... that we have another and can still match)

 

Kool Aid Tie Dye-- FAIL

I thought for our trip home through the airports, it would be good to dress us alike so I can see the kids and they can find us easily if something should happen we are separated in the busy airport...  So my thinking cap thought tie dye!  I looked on the internet for tie dye ideas without a tie dye kit or using RIT fabric dye...  (Here in Japan they don't really have that or do that... and the Arts & Craft Center on base only has dark yucky fabric dye colors) I found some blogs about using kool aid for dye.  I decided to try it out... 

The recipe asks for 1 packet of kool aid and 1 oz of vinegar.  After completing your tie dye pattern on your clothes, let air dry for 24 hours.  Then set with heat of an iron.  After this you do a salt cold water bath then wash as normal after washing by itself  the first 2 times... 

 

I started with white t-shirts and did the spiral method...

 

It took a few tries to get them spiraled good!

Here is the start!

Of course, all the neighborhood girls came to check out what was going on!

After they were complete, I took the rubber bands out and then hung them to dry.

 

They came out awesome!  I LOVED how vibrant and colorful they were and the spirals were GREAT too!!



Unfortunately after letting them dry, then setting with the heat of an iron, I didn't want to wash them and risk losing that beautiful art!  This though was a must because they smelled like vinegar...  But since I had ironed them, I thought they were safe to salt water treat then wash to get the smell out.  As soon as they hit the cold salt water, the color started bleeding out... after 5 minutes in the bath, they were PINK!  I was so mad! 

Kool Aid dye does NOT work!  :(

Atreyu's Mega Birthday

Atreyu really wanted a Power Ranger Birthday Party!  And since this year marks the 20 years of Power Rangers, Megaforce is big!  Not to mention we are also in the land of Power Rangers er Super Sentai...  I used a little bit of everything that I could find from Mighty Morphin all the way up to Megaforce as well as Super Sentai.  The items I ordered online, well we didn't get some of them till after the party, even though I ordered them over 2 months in advance!  oh well!   

We rented out the Grid for his party because unfortunately Davy Jones Locker was booked already, even though I tried to reserve over 2 months in advance!  oh well again!  But the Grid worked out great because it was like "Angel Grove Youth Center"!  It had an inflatable boxing ring that the kids could jump on, as well as a big movie screen that we played Power Ranger Movies on.  We also had the ability to just chill and relax at the tables, or climb a rock wall!  It really was like a youth center you would find in the 90's! 

Atreyu had a blast! I enjoyed my time too, I didn't run around mad trying to entertain kids because there was so much for them to do already!

The pictures are below!