Never a Dull Moment

I will again ask for prayers for our family. For over a week now, Nathan has been screaming much more than normal. Our typical day and night now is he is either eating, sleeping, or screaming with very few happy or even content times. The doctors and Hospice are working on what we can do to keep him comfortable. Right now he is on tylenol with codeine every 4 hours as well as increasing his tummy medicine because the screaming is accompanied by what looks like stomach pain.

Nathan was pouting and about to start screaming, so Jacen gave him "sugars".

Nathan "sitting" in Jacen's chair :)

Jacen loves playing cars!!!

Nathan in the stander playing with a toy.

Jacen coloring with both hands still :)

And finally our spoiled rotten dog Patches laying in our bed on my pillow :)

Thanks for the Prayers

Nathan is doing much better.  His breathing is less labored, his swelling has gone down and his blood work is starting to move back toward "his normal".  However, only time will tell the lasting effects of this.  His fragile body has been through a lot this past month and it's likely that it has taken a toll on his already damaged kidneys.  Thank you SO much for the continued prayers!  Our family is so very blessed!!

I finally convinced Jacen that he could slide down the slide by himself!!!!

Nathan was sitting in the high chair while I did something in the kitchen

and was so tired he fell asleep.

Jacen enjoying a chocolate chip cookie bar :)

Nathan and I

We had some shingles fall off our roof :(  

Jacen decided that driving the cars on them was fun!!!  It did make a pretty cool noise :)

Nathan sitting in his chair while Jacen and I played outside :)

Nathan was screaming, so Jacen got one of Nathan's bottles (with no lid) out of the cabinet to give to him.  It was precious!!!

Prayers Please

This past week kept us busy again with medical situations.  Jacen was still recovering from his ear infection.  I had what we think was allergies and a sinus infection which was treated with antibiotics and a shot.  Nathan was coughing and didn't seem to feel good either.  On Wednesday, while the Respite nurse Rhonda was here, and I was gone to an allergy appointment, she called Hospice because Nathan was having trouble breathing and was swollen.  Upon my return she and Heidi were in contact with Dr. Gray who wanted blood work and a chest x-ray.  I took Nathan for that, and it was determined that he had an upper respiratory infection and was retaining fluid.  The fluid could be because of the infection or because his kidneys are shutting down.  At that point it was a wait and see situation.  Heidi came by again the next two days and Kyle was in contact with Dr. Gray.  Late Thursday afternoon, Dr. Gray called to have us bring him in Friday.  We did more blood work, they weighed him, did a urine sample, and checked his oxygen level.  That was low, so he received oxygen for about 30 minutes.  The blood work looked better than Wednesday, so we were sent home with instructions for Heidi to get us an oxygen monitor and oxygen in case we needed it.  We ran by to get a blood pressure check with Dr. Robinson and then went straight home.  After a weekend of monitoring his feeding, urine output which was better, and oxygen levels, Heidi came by today and agreed with us that his swelling looks about the same or maybe a little better than Friday.  We will return tomorrow for more blood work.  At this point, he seems more like himself, but in reality it is still a wait and see situation.  His kidneys have been put through a lot over the past few weeks with the stomach bug, two rounds of fluids, and the upper respiratory infection.  They are not sure if they will fully recover back to his normal, slowly get worse from all the trauma, or what.  

We will keep everyone posted as we can.  We would appreciate prayers for healing (or a miracle) for Nathan, peace and comfort for all of us dealing with what is to come, and when it is necessary wonderful Hospice counselors to help us through this situation especially how to get Jacen through this. 

Jacen holding Nathan and giving him "sugars"!!!!

Jacen playing outside with my phone instead of his basketful of toys :)

Jacen wanted to be like me, so we got his chair and phone out to sit by me :)

Daddy reading to Nathan.  That is the happiest that I ever see Nathan.  He loves his Daddy reading to him!!!!!

Jacen wanted to type on Daddy's computer :)

Wow!!!! Another Exciting Week!!!

We never seem to have boring weeks around here.  After Monday, with my Mom and Stepdad leaving, Heidi (Nathan's hospice nurse) making her visit, and our trip to the chiropractor, we never slowed down.  Tuesday was Nathan's two hour EEG followed by our appointment with Dr. Brown.  At the appointment it was decided to increase his phenobarbital dose to 7mLs to hopefully decrease the subclinical seizures that Dr. Brown saw on the EEG as well as to get him to a level between 20-25 which should be more comfortable for him than the current 15.  Wednesday Rhonda, Nathan's other nurse, was here for 5 hours, so Jacen and I met up with friends at the Science Spectrum to play.  Thursday was another eventful day.  The plan was for Jacen and I to run errands while Rhonda watched Nathan.  We got a few errands ran and then ate lunch with Daddy.  We returned home to find out that Nathan hadn't had a single wet diaper and wouldn't keep any food down.  So that led to some phone calls which then led to an ER visit after our normal Thursday chiropractor appointment.  Thanks again to Hailey and Kristin for watching Jacen!!!!!  Nathan was only slightly dehydrated, so fluids were given and after being there for 6 hours we were able to return home.  Friday finally comes along and we take Jacen to an appointment because he has had a cough all week long to find out that he has allergies and an ear infection.  Nathan also had his weekly blood pressure check.  The rest of Friday was pretty calm because none of us at home really felt good.  I am hoping for a calmer and healthier week this week!!!!!

Nathan during his EEG.

Science Spectrum with Elizabeth, Briley, Avery, Kim, and Katelyn

Briley, Jacen, and Avery at the table that spins.

It was more of a challenge than I thought to get 4 kids to pose for a picture :)

Jacen and Katelyn looking at snakes.

Jacen, Avery, and Katelyn

If you look closely all 4 kids are looking at the trains!!!!

Jacen loves to climb up in the recliner with Nathan and sit.  He is such a sweet brother :)

Never a Dull Moment

There is always something to keep our life interesting.  This past week Nathan was coughing and having rapid breathing.  So after a doctor visit, we did breathing treatments for a few days.  He is better now.  We also had a cardiologist appointment last week with our new cardiologist Dr. Robinson.  So far we think he is going to be great.  He put Nathan on a different med for his blood pressure.  We will go check the blood pressure weekly, and then return in six weeks for another appointment. 

Jacen has figured out how to give Patches treats :)

Nathan is using a stander that a friend (Thanks Sherie!!!!) let us borrow.  He seems to like "standing"!!!!!!

Jacen loves the train table at Mardels!!!  So much that he throws a fit when we try to leave :(

Science Spectrum!!!!!

PLAYING OUTSIDE!!!!

Nathan was swinging while Jacen played with cars.

Grandma and Grandpa came to visit this weekend.

Jacen showing Grandma how to play a game on my phone :)

We Are All Feeling Better!!!!!!

 Nathan's blood work looked more like his normal this week, so praise be to God.  There is really no other explanation if you know how bad his numbers were and how much of the fluids he retained.  The only explanation is that God still wants him here.  Thank you all so much for prayers for our family!!!!!

I didn't get too many pictures this week.  After spending 3 nights in the hospital, I had a really hard time getting back into a routine.  We hit the ground running with his ECI visits, so most of the pics are from Friday.  Oh well.  I will work on more pics next week. 

Jacen still loves his baths.  But now he likes to lay on his tummy and splash.  :)

Nathan on tummy time.  

I didn't get too many pics of Nathan this week because he spent a lot of time resting and recovering.

Play Time!!!!!

We played cars on the slide :)

We got to spend an afternoon outside.  Yay for warm weather!!!!

We even took a stroller ride and walked Patches but he wouldn't pose for the picture :)