Wednesday, July 13, 2011

I know it’s been awfully quiet on our blog the last few weeks.  We’re sorry for leaving you all hanging without much in the way of updates.  We get questions and requests frequently, so we know it’s important and appreciated. We’ve been very tired and super busy in that time, and this is one area which suffered.  We’ll try to make up for it with some extra pictures J

Since I last wrote, we’ve had no lack of notables.  We’ll start with the good things today.

My first Father’s Day - it’s still somewhat of a foreign concept to me.  I’m not really sure why, but I haven’t felt like a “father” yet.  Nonetheless, here are a few things I’ve gathered about fatherhood in my short time as such.  It is hard.  Man, is it hard.  Being a father tries to bring worry, struggle, anxiety, and fear.  On the other hand, it gives a love not known before, grace and patience not understood before, and perseverance not attainable before.  I’m blessed to be a father, and I’m blessed to have a wonderful wife and a wonderful son who take me as I am, knowing I’m a work in progress.  Here’s a picture of Seton and me on Father’s Day:

As Shawna mentioned in our last post, Heather Ladd took some pictures for Seton’s 3-month birthday.  They (of course) turned out wonderfully.  Here are a couple of our favorites:

Shawna will start the recap of where our new adventure began:

The past weeks have been exhausting for all 3 of us and our family. Sunday night (June 26th) is when it all started. Seton did not want to sleep at night or take naps during the day. Wednesday afternoon (June 29th), after several days of no sleep, he began having some “episodes.” I was alone with him for the first one and really did not think much about it. It was nothing like the seizures you see in movies. I picked him up from his swing in the living room and his right arm went completely stiff, after realizing that he did not seem to be in control I noticed he was not breathing and his lips were blue. The entire episode only lasted about 20 – 30 seconds. He screamed and returned to normal. Almost an hour and a half later it happened again. This time our nurse was the only one watching him. I was about to leave and take Zane some ice cream at work when I heard Seton scream and our nurse yell “Shawna” from the living room. I ran to the living room and picked up my phone and call Dr. Habersang’s office. Then I called Zane, I told him he would not be getting any ice cream and told him what happened. While waiting on the nurse to call me back I went to hold Seton. He had another episode while I was on the phone with Dr. Habersang’s nurse, so I passed him off to our nurse and got further instructions. Dr. Habersang told us we needed to go to the hospital, and he would send over orders to have Seton admitted and checked for dehydration. I quickly packed Seton’s diaper bag and all the things we might need at the hospital. Seton had two more episodes before we left for the hospital. Being a nervous and worried mother, I did not listen to the instructions on where to go when we get to the hospital…admitting or ER? We have been to both so many times. So I chose admitting first and she made a couple quick phone calls to see where we needed to be. She sent us to the ER and let them know we were coming in. When we got in the ER, they took us straight to a room where several people were all doing something different. I really did not watch them or answer any questions I just stood there staring at my baby boy, waiting for the next one to occur…which did not happen. Dr. Habersang came in shortly after we arrived and he took us straight up to Pedi ICU where he had another team of nurses waiting for us. That is when the next and last episode occurred. There were 2 nurses in his room with Zane and me at the time. This was the first one Zane had seen, and of course Dr. Habersang had just left.  I will let Zane pick it up from here and continue with his eloquent writing.  ~Shawna

Once the nurses got Seton’s IV started and got us all situated, they called for an EEG to monitor Seton’s brain activity to determine and verify his seizure activity.  The process took about an hour, and it gave us a mildly entertaining picture in an otherwise stressful situation.

As we were winding down in our quaint PICU room, Shawna walked down the hallway to change for bed, and Seton’s nose needed some suction attention.  I took care of things with the suction monster (as we call it now), and noticed it was much easier than usual.  Well, that’s because I looked down to see his feeding tube slithering around at my feet, like a tiny snake, spurting milk from the end.  I’ve learned this is not a great start to a night where I’d like to sleep.  Little did we know that over our two and a half days in PICU Seton would get 4 new feeding tubes and another two times in which they came out partially and had to be pushed back.  It was beyond horrible.  There was no clear reason for how and why the tubes were coming out so frequently and so easily.  His tape and everything else was still intact and in place.  Maybe it *is* time to consider some Gorilla Glue or even a stapler.

Our hospital stay allowed his doctor to determine his seizures were “normal” seizures instead of atypical seizures, so Seton is now taking Phenobarbital to limit and control future seizure activity.  They monitored him for about 24-hours before sending him home, and to this day, so-far-so-good.

Saturday, July 9th, was Seton’s 4-month birthday.  He had a nice and quiet day…and then Sunday came.  Early Sunday morning, Seton began spitting up blood again.  This is thanks to the plethora of feeding tubes gorging his insides as they come in and out.  By 10 am, he had spit up nearly 100 cc of blood (which is a lot), and the on-call doctor suggested we pay a visit to our home away from home, the ER.  After our usual 6-hour stint in the ER, he was again admitted to Pediatrics.  They were concerned about his hemoglobin levels from the volume of blood that was lost and wanted to monitor him and recheck his lab work periodically.  After another overnight stay at Le Chateau BSA and the most-comfortable wooden recliner bed, they had enough blood work to be comfortable releasing us.  Dr. Habersang said Seton’s iron levels were a little bit low, so they are doing some supplementation.  He also ordered the swallow study which is now scheduled for July 20th in hopes to get this tube out of Seton and alleviate a significant portion of his (and our) problem.  Please pray very specifically for us here.  We need Seton to be able to swallow and feed normally.  This would eliminate 99% of our current hospital visits and the pain/trauma associated with them.

Here's a 4th of July picture just for good measure:

There are many days that Shawna and I are simply beside ourselves with this situation.  We’ve continued to improve in our day-to-day routines and have some semblance of our previous life, but when these snafus hit us, it shakes us to our core again and again.  I postulate that fact might not change.  Irregardless ( J ), we are going to make it.  I don’t understand how sometimes, but I know it to be the truth.  One foot in front of the other.  Lather, rinse, repeat.


"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is work within us."  Ephesians 3:20