Sunday, July 31, 2011

Big Late Night News!!!

We just changed a WET DIAPER!!!!!!  This is one of the major signs they look for to know that his kidneys are starting to funcion on their own.  We were told it takes some kids WEEKS for it to happen so we weren't necessarily expecting it yet.  We are THRILLED. This reminds me of when Kanyon and Jayde were born and we were sending out prayer request on this very blog asking you to pray that they would TT....and they did!!!   The Phillips Phamily Phollowers have prayed us through another monumental wet diaper!!   This definitely puts a little wind in our sails.  Thanks be to GOD!!!! 


Evening Picture

Laying by my baby while daddy goes downstairs to get klp some supper. I left this evening and TOOK A SHOWER!! klp has had a peaceful day.

Sunday, July31 update

Well, today has been a pretty slow day.  We welcome the slower pace after the last few days of hectic craziness!  His blood checks came back with steady numbers that were all moving in the right direction.  His toxin count was lower and his potassium count was normal.  He is still a little low on red blood cells and may require a little boost of blood today.  BUT because the numbers were where they were, they didn't think it was necessary to do a dialysis treatment today.  It gave his little body a chance to rest.  And that is EXACTLY what he's done.  He has been calm and asleep most of the day.  He is still pretty uncomfortable from the surgery and the cath site is very sore, but we are hoping that will improve.  We really need to NOT use strong pain meds since his kidneys aren't working, so we are managing his pain with only Tylenol.  So far though, that has been enough, so we are glad. 

We moved down to a regular room on the "kidney floor" where we will make our home for the rest of our stay here.  Its nice to have our own bathroom and a little more peace and quiet than in the ICU.  The plan is to do a dialysis around 6am in the morning and we will pray that all goes well with that.  This is not going to be a speedy recovery.  It is a slow boat, but we just hope to see the numbers move in the right direction.  An increase in blood platelets as well as him peeing would be really GOOD signs.  Those would be signs that his kidneys are working.  We have been told it could be days or even weeks before we see these, but we are of course, hoping for those positive signs SOONER rather than later. 

As I type this, Kanyon is eating a little bit of grilled cheese and applesauce and even a bite of chicken nugget.  This is the first real food in a week, so we are excited!  They are allowing him to drink water because he is so thirsty.  However, since we are having to watch our fluids, he is on a very restricted fluid intake.  We are glad to see him eating and drinking! This will keep him from having to go on TPN (an IV fluid that replaces food). 

He will have a blood draw this evening and it will give us info and set us up for what we hope to accomplish tomorrow. As long as nothing major changes, I'll wait and update again tomorrow after the treatment.
I know I keep saying this, but THANK YOU. This support makes ALL the difference. I really think this experience would be absolutely unbearable without such incredible support. You are literally holding us up through a very very tough time. We don't feel alone and that makes all the difference. 

Kanyon's Goodnight Picture

Here is klp saying goodnight to his loyal friends. He seems to be feeling better and stronger. His awesome hair-do is thanks to EEG goo from yesterday and wipes we used to "bathe" him. Goodnight everyone. Endless love and thanks from The Phillips Phamily!!

Saturday, July 30, 2011

First treatment

Kanyon's dialysis treatment went great! They were able to get a good amount of fluid and his numbers stayed very stable the whole time. Kanyon is very sore at the cath site so he was pretty fussy but some books, singing, and iPhone games kept him entertained. We got him in new clothes and a clean bed and he went right to sleep. This the first night in several days that he's been able to go to bed before 3 am. We feel relieved and hopeful. They will run labs through the night to watch his numbers but we expect a quiet night. Keep praying for our sick boy. Thank you again everyone. We are humbled by your support and thanking GOD for so many things.

Sent from my iPhone

Surgery complete

Kanyon just got put of the surgery to place the catheter for dialysis. A couple of things changed just before the surgery. They decided that because of kanyons shunt, the catheter in his vein by his neck is the safest. The one in his abdomen would b near the end of his shunt's drainage tube so the risk of infection is higher. We aren't interested in compromising his shunt so the hemo dialysis through the neck was the best option.

He is back in the ICU room and they will do the first dialysis treatment within the next 3 hrs. Please pray that this goes smoothly. While it's routine for the people here and a common procedure for them, it is still serious and involves a lot of his organs and functions. It is quite a balancing act especially these first few treatments. It will be a short, 90 min treatment and he will work his way up to 3 hr treatments. I'm new to the nephrology world so we are learning as we go here. From what I understand, our main goal is to get rid of the built up fluids that he has acquired the last 2 days. We need thus to be successful so that fluid doesn't build up in his lungs and cause pneumonia. The dialysis team is here in the room getting set up so we should be able to start within the next 1-1 1/2 hrs. Because of the change in location for the port they did not place a central line.
Pray that he tolerates this well and that his pain is under control. There is a lot going on here so we can't possibly explain how much your comments, calls, emails, texts, and faithful prayers mean to us. We know GOD has the power to heal and we are begging him for just that. We, again, are amazed thankful for modern medicine! We know all these good things are blessings from GOD. Thank you for doing what you do so well in supporting us praying for us and going above and beyond to love us.

On another note our attending ICU Dr walked in and he's a friend from ACU!! Saying prayers with you Dr is a good feeling.

On ANOTHER NOTE I'm doing this from my phone so I am choosing not to worry about spelling and punctuation! Kinda like when I misspelled dialysis throughout my whole post earlier today.

Hopefully I can keep the blog going. Again, thank you.

Kanyon's Current Info

OK Everyone here I am in an attepmt to get the word out and keep everyone posted on our Grand Kanyon.  Here is what has happened so far: 
Kanyon had (what we thought was) Shelliga, a stomach bacteria.  It was bad and hit him pretty hard, but we just thought he would get overt it. By thursday he had stopped drinking fluids so we felt like he was dehydrated so we ended up going to the ER to get rehydrated. We planned on a simple night in the hospital, but as we al know, that is not what happened.  Even with the bags of fluid, his kindey levels were still not improving.  We spent the day Friday hoping to see those levels improve and that he would pee! Neither of those things happened so the decision was made to go ahead and go to Dallas.  He needed to be in and ICU and seen by a specialist. It was then that we found out that it was actually E Coli not Shelliga.  He is now diagnosed as having HUS which is a syndrome refferring to kidney/blood damage......thanks to the E Coli "bug" and the toxins it released, one of which was the Shelliga which is why his cultures came back showing that bacteria. 
To make matters even more interesting, during the day Thursday he had an episode of high heart rate and shivering. He has done this before, but it had been a year and we thought we were over all of those things.  The up side to this was that we were in a hospital so they could run and EKG (to check his heart) and and EEG (seizures) while the "episode" was happening.  The EKG was normal, but the EEG did show some irregular activity, but its not clear whether or not it was an actual seizure.  With his history of brain injury and CP, his brain is already "irritated" in that area so it probably got more irritated when his body was under so much stress.  So....that is that.  Now that its over, it is not really a priority as far as figuring anything out.  We will follow up with some Drs, but we aren't too concerned about it now. 
OK back to the kidneys.  They FINALLY came to longview to bring us to Dallas.  Kanyon and I flew on the jet/plane and Kory drove to Dallas.  Quinn is with my parents in Paris.  We arrived here in Dallas at Children's around 2 am and havne't really stopped since. 
So, this is where we are now:  He just recived some platelets because his platlet count has been low.  He is ready for a procedure this morning to place a cathetar/port in his abdomen.  This will be where they will do the dialysis.  They are also putting in a central line to help with fluids, blood draws, and nutrition.  This procedure will take maybe an hour and he will be sedated.  Our big hope here is that the abdominal placement is successful.  If for some reason, it doesn't work, they will have to do it in a vein in his neck.  NOT COOL.  We need to catch this break.  We need the abdomen to work.  They will start dialysis today and that will be the beginnign of relief for his body.  The process of dialysis will help rid his body of the toxens that have built up since his kidneys have stopped functioning.  Generally speaking, this is a successful plan and they said 95-99% of kids have no other complications or any long term dialysis needs.  We are praying we fall into that %!  We are also hoping to see his platlet counts and some other numbers improve and they feel sure that they will once this whole thing gets started. 
The kicker here is that its not a quick thing.  We thought it was....we were thinking days,maybe a week. They told us today to plan on being here a month.  WHAT????!!!  We haven't had much time to process that so we will have to go back to the drawing board and figure out how this is gonna work for us.  They told us the BEST case is 2 weeks, but to plan on a month.  SOOOOO interesting.  We'll get a plan one way or another. 
As far as Kanyon, he is being such a trooper.  He is lethargic, but will talk some and interact when he perks up.  He hasn't had much sleep since the last 2 nights we've been in an ER/moving rooms or transporting in plane to Dallas.  He is patient and tolerant of most things, but he is DONE being stuck with needles.  It is heart breaking and I am to the point where I feel like neither one of us can take another stick.  Here at Children's they are pros with the little veins, so that has been better, but it is still rough.  His arms are COVERED with pokes, but he is doing so good.  He turns on the charm and manages to woo his nurses/Drs, etc.  We look forward to seeing that spark back in his eyes. 
He is a sick boy.  This infection has done a number on his body, so please pray that we can get it under control and get his kidneys working again and get rid of the HUS! I am in a fog to say the least, but I felt the need to inform the troops. Pardon the incoherent thoughts and typeos. I'm in a hurry.  Thank you so much.  It is incredible that within minutes of all of this happening our friends and family surounded us.  We are familiar with this feeling as we've felt it many times before, but it never gets old.  We are beyond blessed.  Thank you for prayers.  I'll do my best to keep the blog updated one way or another.  I hope this makes sense and is somewhat clear. 
Thank you for your prayers.  We love you all! 

Wednesday, July 27, 2011

Montana Part 3

This was the playground of choice for the kids this trip.  They loved the rocks in the driveway and the old trucks and tractors that their Dads played with when they were little.  

Sweet, funny little Hayven has a tough time keeping her britches up! :)  

All 4 cousins busy playing

Hayven and Sayler loving on Cooper.  

This is a picture Sydni took of Tye's pet.  Its a hawk that for the last 3 years follows him through the fields when he cuts and bales the hay.  I never got to see him, but Tye has pretty neat stories about him.  Pretty cool, huh?  

klp rode with Chief to check on the heifers.  And yes, thats his "CHEESE" smile.  *smile* not sure thats the right word! :)  

KLP, gram and Quinn followed in the Rhino

And Me and Sayler on a 4 wheeler.  We had to pick some pretty flowers while we waited on Chief and Kory to move a bull.  

Sayler with our flowers, klp trying to snuggle with Sayler, and qsp trying to steal a flower.  Sweet Sayler tolerate it all with a perfectly pleasant smile! :)  She's a gem, I tell ya! 

klp joined Tye for his late dinner.....another "CHEESE" for klp.  oh dear. 

Q decided he wanted a fork AND a knife to eat his supper with.  

qsp brought me his boots, "requesting" to wear them.  Pretty cute. 

Sayler and klp on one of their many Rhino rides.  There is some sort of handle/strap thing and klp liked holding on to it.  

One night we went over to one of Kory's high school friend's house.  Ryan and Amy grilled a yummy supper and their sweet daughter Olivia was lots of fun.  She and Quinn are only a couple of months apart.  And they have a yellow/white lab that was lots of fun too! 

Another high school buddy, Ryan came too.  Here is Ryan S. with KLP and the boys and Ryan D. with Olivia.  These 2 made the trip to Texas for our wedding!!! What great friends!!  

klp made several rounds with Chief on the swather.  He did really good and enjoyed the riding and "driving"

And here's the whole fam!!  Tye, Quinn, Kanyon, Kory, Gram/Susan, Me, Cheif/Wes, Syndi, Hayven, Clint, and Sayler.  What a FUN TIME!  I really love these people SO MUCH.  

aaaaaand then the downer of having to make the trip home.  The boys actually did OK flying.  Despite a VERY VERY VERY VERY close call making the plane in Billings, we had a pretty good trip.  By the last flight home, Quinn was done with the plane and having to sit in someones lap.  Neither boy slept (even though they'd been up since 4:30).  We had 3 seats together so we didn't have to worry too much about bothering people beside us (just in front of and behind us!).  I packed what I thought were great entertaining toys and books, but the toy of all toys that kept qsp occupied the longest was the terrible random airline magazine "Hemispheres".  Seriously i bet he looked at that thing for 30 min.  at one time and then several other chunks of time too.  Whatever works!!   

I put duck tape over the speakers of some fun light up/song toys that klp espeically likes.  That kept the noise from bothering other people, but entertained them pretty well.  

By the time we got off the plane and to the hotel shuttle, q was falling asleep sitting straight up.  We had to unfold the stroller to carry everything from the hotel door to our car.  Sleepy Quinn was out in seconds. 

And in a few minutes, we were on the road and they were both asleep!  

It was a great week of laughing, talking, eating, playing, working, with AWESOME weather and EVEN BETTER FAMILY!!

Friday, July 15, 2011

Montana Part 2

KLP and klp shooting hoops in the shop.....Kory's "home court"

Chief and qsp playing bball.  

and Q goes for the slam dunk! 

qsp got a ride after the bball....I guess he was just too tired to walk.  

This was klp's bathtub of choice one night.  He LOVED it.  The spray thing is like his dream come true! 

Of course we celebrated the night of the 4th.  We usually go into town to watch the fireworks, but this year we opted for our own show, compliments of Uncle Tye the setter--offer.  We put qsp and Hayven to bed and the "big kids" got to enjoy the show.  Of course we love America on the 4th, but we celebrate our own PHILLIPS PHAMILY INDEPENDENCE day too!!!  4 years ago we brought our baby home!!  WOW!!  What a day, what a road to get there, and what a road it has been for the last 4 years.  We are so thankful for that day and for the people that got us there.  And in so many ways, its taken EVEN more to get us to where we are today.  We are mindful of GOD's faithfulness and for our faithful, dedicated, friends and family.  

Gram, Sayler, Chief, and Kory watching the show!  

One day, KLP's grandparents came out to visit. It was fun to see them.  Here is Great Grandpa Bob feeding q some watermelon.  

I found these dog purses on clearance right before our trip.  SOOOOOO I HAD to buy them for Sayler and Hayven.......

I think they liked them...
But it's safe to say that Quinn LOVED them! He wanted to carry them around all the time.  

Sayler , klp, and qsp 


klp liked the dogs too....sheesh, maybe I should've gotten my BOYS one too!:)  Sayler was reading to Kanyon.  She is such a good little reader and so sweet to always read to Kanyon (even if he is a little distracted by the froo froo dog purse) 

At some point in the week, klp picked up on the "CHEEEESE!" thing when he's taking a picture.  It made for quite an interesting "smile" from him.  

I mean really??!! Could little Quinn be any more pleased than he is right here with his dog purse?! btw he said "CHEESE!"  but he's never done it again since. This is borderline sing song face here (for all my ACU readers)!

All 4 Phillips kids in the car together headed to town.  

We went in to a friend of the Phillips place to see their baby animals.  They had some lambs and also some tiny cute 3 day old piglets! :)   

They also have a cool little creek running through their yard so that was way fun......

klp was in HEAVEN!!!

After a rigorous time playing in the creek, he had to lay down and rest in the hammock while the creek ran peacefully behind him.  Ahhhhh the life!

Our afternoon ritual was to go swimming.  Fun time with cousins! 

Still more to come!! 

Thursday, July 14, 2011

Montana Part 1

We just got back from a great trip to KLP's home in Montana.  It was a blast.  The older the boys get the more fun we have!  There will, of course, be at least 2 installments of our adventures, so here is the first. 

This was in the car on the way to Dallas Friday night.  Our flight left at 6:20 a.m. Saturday, so we went over the night before.  klp decided he needed my sunglasses.  

Not sure what is going on with my typing.  But the above picture is from the hotel.  The boy was all over the place in that bed.  

And here we are in the Denver airport.  We have a connection there and it is usually a really quick one.  Its just enough time to get to the gate, let the boys loose for a bit, then board for the next flight.  

We made it to Billings by 9:30 (MT time) so it made our 4:15 wake up call worth it when we had all day Saturday!  We made a stop and Wal Mart and Wendy's and headed to Lewistown. They both did pretty good on the plane, better than I expected, so that was nice.  But, neither of the boys slept on the plane rides, so Q CRASHED in the car.  I guess klp was too excited because he never took a nap all day!  

Clint and Hayven got there Sunday evening.  klp, Hayven, and qsp were looking out the window at Cooper.  Havyen LOOOOOOOVES Cooper.  They all do, but I think Hayven loves him the most! 

Monday, the 4th we went to the parade in town. I love parades so this is always fun.  In the past, the boys have been busy working so its just been me and Susan that go, but this year Clint and Kory went with us! About half way through, Sydni and Sayler got there too.  

KLP, klp, qsp, Hayven, Gram/Susan, Clint

My boys watching the parade.  

Gram and Hayven....H was our candy fetcher.  She would go get it when they threw it and bring it back for us to enjoy! :) Sweet sweet girl.  

They passed out flags. I just think the little flags waving in the hands of little kids is so cute.  Classic, patriotic.

Me and Sydni with the kiddos.  

They started cutting hay the day we got there, so Tye and Wes were doing that while we were at the parade.  We took pizza out there for lunch and had fun ALL BEING TOGETHER!! When they are busy with hay, its hard to get everyone together at the same time! 

Sayler and klp picked up right where they left off.  I mean he LOVES this girl.  She is beyond sweet to him even though she's older than him.  She plays with him and reads to him and is just so precious.  

That evening we gathered the cattle to get ready to ship the next morning.  Gram and the 2 big kids rode in the rhino while a girl from church came out and watched the little 2 kids at the house so the rest of us could enjoy the gather.  

The 2 Big cousins! 

Getting ready to gather.  Tye and Wes talking over the plan of action.  

Sydni rode Uno and Clem (the dog) was tons of help, I'm sure.  :)  

I can't resist a picture from this view.  We were up above the house and could see town from where we were.  It was a beautiful time of day too.  And in a weird way I think the cows are pretty.  

Wes and Sydni on the 2 horses. 

Mountains, setting sun, green grass, and cows :)  

headed in the right direction.....

Once we got them all in the corrals, klp was checking out all the cows.  

If you can't tell, he's "MOOOOOO" ing back at the was hilarious.  He was mooing so loud and of course, all the cows were VERY loud.  He was getting such a kick out of it and so were we!

Here he is in his "moo" off with the cows. Oh man I love this picture! 

Then klp and Sayler got a quick ride on Uno.

Does this picture tell a story or what??!?!! We were trying to get a picture and klp kept playing with Tye's hair!!! HAHA!!!  

Chief gave klp his rope while he rode his horse. :)  

Clint, Sayler, Tye, klp, and KLP.  Fun times together.  

More to come!