The Tube is Gone

The dialysis tube is gone! 

In two weeks he can go swimming and take baths again!

Monday we spent most of the day at the hospital... including of course monkey.

Miriam went to get lunch with Daddy and returned sound asleep!  I wolfed half my lunch in the hall and then ate the rest later.  We couldn't eat around Nathan as he was beginning to get quite hungry but couldn't have anything of course before surgery at 1pm.

He had a lot of fun playing with this VERY noisy truck.  The surgeon observed that he would not want to have that toy at his house, and I totally agreed.  It had buttons for hammers, jack hammers, and other noisy tools, and was loud.  

Surgery went smoothly, we were able to come home Monday night, and he has been recovering great.  The biggest challenge has been keeping him quiet.  I have no idea how they expect a healthy, energetic two year old to take it easy for a few days.  If they really wanted him to stop climbing things and running around and all that they should have sent me home with a sedative for him!

Today we met with his wonderful kidney specialist... who said that he is doing great and that we don't need to see him again for six months.  I was surprised since we'd been on monthly meetings.  That's a big jump!  But obviously it shows how well he is doing! :)

Pray for Nathan

Tuesday evening we took Nathan to the ER at a small local hospital, because he had been vomiting and having bloody diarrhea. They gave him an IV, took his blood, and admitted us, because the staff pediatrician was not on call until the next morning. When she  came in she did more blood tests, because she didn't like what she saw.  She told us she was afraid Nathan had Hemolytic Uremic Syndrome (HUS). The tests showed the levels of certain chemicals controlled by the kidneys, so if there was a trend of those chemicals not going the right direction, he probably had it.

Since that small hospital was not equipped to do anything further in our care, we were sent via ambulance to a larger one an hour away, where we had excellent care and were given lots of information on HUS.  They continued to monitor his blood levels, and warned us of the possibility of transferring for dialysis, since they were not equipped to do pediatric dialysis.  Thursday night we were transferred three hours away in case Nathan ended up needing dialysis.  His levels had made two jumps in the wrong direction, so we anticipated that it would be likely. 

Nathan and I got here around 1AM, and Miriam and Micah arrived shortly after.  We had a fairly uneventful but mostly sleepless (for adults) night.  Thursday Nathan's levels were closely monitored, and a catheter was inserted.  Although his levels of creatinine and BUN did get higher, unfortunately, they did not take a big leap.  His potassium was still too high, and he was given a medication to help him eliminate that.  The decision was made that we would plan on putting in a peritoneal dialysis catheter in Friday morning, and put in a central line as well (which will be used for blood draws, etc, and prevent him from getting even more needle pokes. 

The surgery went well, and pretty soon they hooked him up to dialysis. Peritoneal dialysis pumps a liquid into his belly, which absorbs toxins via some sort of osmosis, and then pumps it back out. Then it does it again, and keeps pumping and absorbing, and draining, until they decide he's better.

Nathan was understandably tired Saturday, but he really enjoyed seeing a bunch of his aunts and uncles and both grandpas who all drove up to see him. They got his first giggle out him since the whole things started. Sunday showed huge improvements in energy, alertness, and attitude. He smiled, giggled, and ate more than he had all week. Monday he giggled, playfully threw his monkey off the bed (to be retrieved and immediately thrown again, with an impish grin!), and wanted to eat a few bites of my cheesecake and pizza!

His blood tests have begun coming back with minor improvements. This is of course a huge improvement to us, because they aren't drastic declines anymore. We don't know how long it will take for him to get better enough for them to send us home. Some patients make fairly quick recoveries, and some take a while. But overall the prognosis is hopeful.  This afternoon we moved out of the PICU and out onto "the floor" as the hospital lingo goes.

 Our sweet boy Sunday (left) and a few weeks ago with Miriam (right).

And Friday... before surgery, before the dialysis, when his levels were at their worst and he was his most lethargic and weak.

The dialysis will take strain off his kidneys, so they can recover and get back to their job.  Please pray that the dialysis continues to go well, that he continues to heal, and heals quickly so we can go home, that we continue to have skilled, attentive nurses and doctors, that my milk supply would stay up (I am pumping for him since the kidney doctor needs to know exactly how much liquid he's getting)  and that he would not have any long term damage from this.

Also, thank you so much to those who have visited, sent cards or gifts, or have called or emailed us.  It has been such an encouragement to us not to feel alone.  To have the love of God made tangible and visible by His people.  Such a blessing.

I will try to have an update in the next few days.  In the meantime, please pray! 

Share

Spring IS on the way!

It was warm enough last week to take the kiddos outside without spending hours bundling everyone up to go out and freeze for ten minutes, so we went out and enjoyed the sunshine!

 

Nathan started out holding my hand and walking sedately.

Then the wild grassy spaces intoxicated his boyish soul,

and he was off, trotting in erratic circles in the still brown grass,

 

exploring the daffodils that are peeking out.

 

And Miriam and I traipsed along behind, 

(she is in the new podaegi I made, which I love)

(post planned on that on Friday)

enjoying the sunshine and fresh air 

and chasing the small explorer with camera in hand.

 

  

My caption for this one-

"Mama, haven't you taken enough pictures?"

 

"I have to go explore tree bark, and sticks, and fallen walnuts, 

and then I have to throw them for the dog, and throw them at the tree, 

and wave and say 'bye!' to every truck or car that goes by on the road..."

Nathan and Butter

In my last post I referenced Nathan and butter, and then I realized I had only shared one (1!) of the many notable butter incidents of his lifetime.  I don't know why.  Maybe because it might make me look like a bad parent?  Anyway.

 

Nathan, about a year

 

But the humor value is too high to keep these to myself.  Besides, if I chronicle them here someday perhaps I can compile them and print them out and embarrass my children when they're teenagers fondly recall the unpredictability of life with small children funny things my kiddos did.

Butter incidents 1 through [approximately] 247: In the early days of having two, when Nathan was 14 months and felt that every obstacle in his path was put there as a challenge to his climbing skills, and Miriam was nursing a lot, and Mama was too forgetful to put the butter in the cupboard after meals, Nathan was  found on the table many times, sitting next to the butter dish, with butter smeared all over the table, himself, and the butter dish, naturally.  It was spring/summertime, so the warmth was very conducive to smearable butter! 

 

Nathan, about 14 months

wow, this picture is making me crave summer!

Butter incident 248: Recently on the way to church we thought he was quiet in the back seat because he was asleep. Not so. Halfway there, I twisted myself around in my seat to discover that he was quiet because he had reached the stick of butter intended for the potluck food, unwrapped it, broken it in two, smeared it on his coat, pants, hands, face, and carseat, and eaten about 1/8 of it.  Thankfully, I am a chronic overpacker, and had two choices of spare pants, sweats and dress pants, and we took the jacket off him in the parking lot, so we managed to appear nearly as presentable as usual.  Except I can't remember if that is the week we forgot his shoes and he wore only socks all day?  Possibly.  I think maybe it was but I was so relieved at finding the spare dress pants in the bottom of the bag that trivialities like shoes were no big deal to me.  I don't know why they would be anyway, but the butter threw things into perspective that morning for me!

 

Nathan sleeping (about 15 months)  :)

Adventure, right? :)

Yesterday

 At 8.30 AM, we kicked things off by breaking the lid to the butter dish.  Butter is a theme in Nathan's life, so he did the honors. 

Shortly after, I shut the oven and the outer part of the oven door fell right off onto the floor. I kid you not.

Then I changed two poopy diapers.  Breakfast happened at some point. And it wasn't very healthy.

And then my favorite hair clip broke.  And the guard gate.

Thankfully by that time it was time for lunch and then naps, so the crazy level went down considerably.  :)  

And stayed mostly down for the rest of the day.  

Micah got home earlier than usual, fixed the oven door, then blessed me and made dinner (!) and then hung out with Nathan so I could do some writing.  Very relaxing, especially since it challenges me in a very different way than broken butter dishes do! :)

Some Favorite Children's Books

 Scuffy the Tugboat and His Adventures Down the River

I LOVE Scuffy. It has been one of my favorite read aloud books for many, many years... our copy is one I gave to one of my brothers many Christmases ago, and he passed it on to our little ones so it could give more enjoyment.  I love the storyline -  Scuffy is discontent where he is, so he sails off to find adventure, and then realizes that he really does need the man with the polka dot tie and his son, and wishes that he were back with them... and just as he is entering the ocean, which has no beginning or end, the man and his son scoop him up and he is safe again.

 

                                  One of our board book favorites is Barnyard Dance!  It was a gift to Nathan when he was born, and we've loved it ever since. It has a fun rhythm and shows all the different farm animals dancing.  It has a lot of "moo" and other animal noises, which makes it a toddler favorite, and the fun pictures also make it a good book to entertain the baby during church.

 "Bounce with the bunny.  Strut with the duck.  Spin with the chickens now- CLUCK CLUCK CLUCK!"


We also have another board book by Sandra Boynton called The Going-To-Bed Book- it is fun and is our current diaper bag book, for distracting and calming a wiggly little one in church or elsewhere. :)


It has a really fun cadence to it as well...

"And down once more, but not so fast, they're on their way to bed at last.
The day is done.  They say good night, and somebody turns off the light."


And of course, we love the classic kid books...
- Green Eggs and Ham,  Bears On Wheels, Make Way for Ducklings, The Little Engine That Could, Corduroy



As you can see, we're bookworms, and it seems to be passing on to the next generation!  I think we better get some more bookcases soon, because these are all  full already...  are any of these your favorite stories too?  Have any others we should put on our library/wish list? :)

(contains affiliate links, FYI)

Hide your hearts, girls...

He's amazingly cute AND has a great sense of style. 

I assisted him in getting the backpack and slippers on, but he chose all the accessories here and put the hat on himself.  I do admit to dressing him in a long sleeved shirt and shorts, but the rest is allllllllll Nathan.

Butter in the carpet...

I just turned around and noticed in horror that Nathan had two large handfulls of butter.  He was standing there in the office, on the carpet, and then he gaily threw each handful down.  Oh. my. I thought we were doing better about him getting into the butter, but maybe that was just me getting better about putting it away after meals.  The tally - 3/4 of a stick of butter, divided among the office carpet, living room rug, and dining table chair.  No real lasting damage.  This is precisely why I hate carpet and bought an inexpensive rug for the living room!

And it isn't even 9 AM yet!  Maybe mama's computer time needs to wait for naptime...? ;-)

Banana Breakthrough

Nathan likes eating little banana cubes, but he frequently had trouble picking them up and got frustrated because they were so slippery. Of course, the more you try to pinch up a banana cube, the slipperier it gets, so it would just get worse and I would end up having to feed him the little cubes, which wasn't as fun for either one of us as finger food would've been.

I don't know WHY I didn't think of this sooner... but I took some raisin bran flakes, put them in a baggy, and rolled the rolling pin over them until they were mostly crushed. Then I slice the banana as usual, put two or three pieces in the bag, and shake. I put those in front of him and he can finally just enjoy eating his now non-slippery banana! As a bonus, this gives him a (teeny) amount of fiber, which he also needs.

Yay! I would've shared a picture of this gourmet delight with all y'all, but my camera batteries are dead and we're out of AA's. Sorry. But I'm sure you can imagine it anyway, right?

Merry Christmas!

Nathan thinks Christmas is quite exciting!

A little stressful, though, when you aren't allowed to eat the ribbons off the presents...

But all in all quite interesting and fun...

... and sometimes a bit exhausting, requiring a long winter's nap...

Wishing you all a very Merry Christmas!

Yum!

Nathan likes avocados, but even better is the joy of wielding a spoon!

Cute Baby

Sleeping Nathan

Nathan was sleeping yesterday, and I took a few pictures. Then he almost woke up...
made a few funny faces...
yawned...

and settled back down again. :-)