Home Again

Thank you all for your comments and prayers during Nathan's hospital stay. We are HOME! And he is doing very well. We are still adjusting into a new routine of weighing him daily, checking his blood pressure, and giving him (only one!) medication twice a day, as well as needing to go to regular pediatrician and monthly kidney specialist visits. His wonderful pediatric kidney specialist has repeatedly assured us that he is extremely happy with Nathan's progress, that he thinks that he will have no lasting damage, and that he is recovering quickly.  We are going to have to have his peritoneal dialysis tube removal surgery in a few weeks, and then I know that I will feel like we're getting back to normal.


 Nathan is understandably a bit emotional, and swings quickly from extremely happy and giggly to tears.  This is not normal for our even keeled, cheerful boy, but obviously a small child who has been very sick, stuck with countless needles, catheterized (with two failed attempts by the PICU nurses before they called the stat nurse), gone through minor surgery, and gone through temporary cold turkey weaning is going to be scared and confused and feel less secure for a while.


But he is still generally a happy little guy, and is getting his energy and strength back very quickly.  He is blossoming verbally in the last few weeks, labeling everything by color (usually correctly!), spontaneously reciting animal noises-

"Cow say MOOOO. Pig say *snort snort*.  Chicken say BUK BUK BUK."

- and greeting us all by name in the middle of dinner ("Hi, Miriam.  Hi, Mama.  Hi, Daddy.").  He is also enjoying some new books he was given, including a new favorite, Fifteen Animals!, and an old favorite that I remembered reading to my brothers but that we didn't have, Guess How Much I Love You.



Also home is Monkey, who was given to Nathan by some kind friends who visited us in the hospital.  Monkey was 'listened to' by countless nurses, bravely took tylenol first to show Nathan it tasted good, donned a face mask along with Nathan whenever the dialysis nurses needed to change his dressing or hook or unhook his tube from the machine, and even wore a blue cap and accompanied him into surgery.  Monkey's given name on his tag was Bongo, but Nathan told every nurse who asked that his name was Monkey, so we're going with that.  ;)

We are all soaking in the summer with renewed enthusiasm... eating popsicles with all four of us piled in the hammock we bought on our honeymoon (and hung this week... why did we wait so long?!), wearing our "flips flops", as Nathan says, drinking pink lemon aid, and generally reveling in being home and being together.  God is good and has been gracious, and we are full of joy.

Nathan Update

If a picture is worth a thousand words, a video is worth many many more, right? Here is Nathan this afternoon.  Off dialysis (for today and tonight... praying that his levels will have continued to improve by tomorrow so that we can stay off altogether!), unhooked from all the wires (for at least part of the day) and able to get up and play!  He is a bit wobbly and needs close attention (he thinks he can do everything, but he's still a bit weak and his balance is a bit off.  Anyway... here is some amazing Nathan cuteness.  Thank you so so so much for your prayers.



We are hopeful that if he continues to improve at this rate that we may be able to go home soon. 

Please pray that...

• his blood pressure would stay within the normal range so we can stop the blood pressure medication
• his body would be able to heal itself from this point, and his kidneys would be able to handle things from here on out without the help of dialysis.
• that his anemia would go away without another transfusion (we've had 4 so far)
• that there would be no long term damage to his kidneys or his health
• that we would be able to go home soon!
• that we would be able to find a good doctor to have follow up/monitoring visits with, and that we would be able to establish a good relationship with them.

Thank you so much!

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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! 

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