Surgery Avoided (for now) – and We’re Home!

Kyle is home, playing – and doing great. Some of the tests revealed that he is not aspirating, rather his stomach is very slow to empty – and causing him to more or less explode. The typical medicinal route is Reglan or erythromycin. Reglan is NOT the couse we intend on following, due to serious, irreversible side-effects in long term use studies (neurological damage). In addition, it’s not been tested or recommended for use on children – or for long-term use for that matter! Ugh, don’t get me started on reglan, it makes me sick to think of what doctors will knowingly prescribe to children without fully disclosing the risks.

So, needless to say, we’ll be going with erythromycin. Kyle’s scheduled to meet with his GI dr next week, but should have the script tomorrow. His GI doctor is not affiliated with Loyola, and we wanted to remain under his care for the remaining GI issues that Kyle has.

Should the medicine not work, we will be again facing surgery.

Also important to note – Kyle is back to his baseline of oxygen (1/8 litre at night, nothing during the day), and otherwise back to his happy – overly talkative self :)

Thank you for your thoughts and prayers during this time.

Update from Loyola

We’re at Loyola now. There were several problems with the transfer, but to cut out all the garbage that happened, here’s a quick update.

Kyle is doing MUCH better now :) Oxygen is down to 1/2 litre. His chest x-ray from this morning no longer shows the pneumonia, just a little infiltrate of hazing. The drs have discontinued the Vancomyacin, and he’s only on Clindomycin (sp?) now. They’re starting IV nutrition, vs just fluid through the veins, today. And Monday we begin a series of tests to ensure that the Fundo is the right procedure, and that there are no other issues making the situation worse.

We’ll be here for at least another week :( But I’m set up at the Ronald McDonald house, so I can take breaks and rotate with Karl.

Thank you all for your thoughts and prayers. And to the ladies at WebMD, Twinshock & HCTS that follow us – Tell everyone that Kyle sends big kisses :)

Kyle’s in the Hospital AGAIN…

Hi all, just a quick update and request that you keep little Kyle in your thoughts and prayers this coming week.

Yesterday, Kyle started getting congested, and it appeared that a teething cold was coming. As simple as this could be, it always spells concern for us. For the past 1.5 months+ Kyle has been pretty much off oxygen during the days (only using it for naps & sleep). He was satting fine throughout the day, but his reflux got considerably worse. Which can be hard to determine from a child that usually vomits 5+ times/day. In this case, he was emptying out every feeding we put in – and if forced us to put him on electrolytes to help ensure some hydration.

He spent most of the night coughing, spitting up and crying. But in the morning (9:30am), he was still satting fairly well (1/8 litre). I went ahead and kept him on the oxygen, monitoring him periodically. After his nap, I did another spot check, and he was desatting – and started crying (which usually makes sats drop futher). Within 3.5 hours he went from 1/8 litre requirement to 2 full litres. That’s are notice, per the drs… When he hits 2 litres, go to the ER – so off we went.

He peeked at 3.5 litres by 5PM. Chest xrays revealed what I feared, that at some point this morning, he aspirated. We caught it very early – within maybe 10 hours of it occuring, and it didn’t seem too bad. Official diagnosis was Pneumonia due to Aspiration. With no fever and minimal impact, the treatment wouldn’t even call for antibiotics – but with Kyle, things are always more difficult than that.

This is the second time in the past 7 months that he’s aspirated. We caught the first instance pretty quick as well – desaturation and monitoring is always a giveaway when a problem occurs. We were informed that if it ever happened again, one of two things would happen – both requiring surgery. The first was changing his g-tube to a gj-tube. The difference is that the gj would filter directly into the small intestine, instead of going into the stomach. Kyle currently is not an “ideal candidate” for that procedure because he forceably gags and vomits at the smell of food and other things that effect his aversions (site of a spoon or toothbrush, even a bottle).

The next option would be a fundolication. In this instance the surgeon would create a fold in the stomach, essentially pinching off the area going back up to the esophagus. This is not reversible, and does offer some risks. They can however make the fold not as tight, allowing more flexibility – and prevent stomach atriphe (sp?). We’ll go over that final option in the morning with the dr. With this procedure, Kyle will not be able to throw up again – the issues of reflux will most likely be gone. In addition, he will be able to eat when we overcome his aversions. But it comes with a 10-15% certainty of some alternate issue arising (either during/shortly after the surgery itself to the stomach not functioning ever again).

It appears that we won’t be able to get the procedure until Monday or Tuesday (unless some miricle occurs). In the meantime Kyle cannot eat for risk of aspiration and future complications. It’s very difficult watching your child go through this, and maybe I don’t focus on the bad days and hardtimes enough.

I always try to remain openminded, and informed when it comes to Kyle’s care. I don’t like to worry or stress out too much before a procedure – because it’s out of my control. My only sanity is kept in believing that what’s about to happen is the best thing for him. What I focus on is his recovery. Making sure I know all the potential risks and warning signs, lobbying the hospital staff to ensure that he is taken care of properly and made as comfortable as possible. Helping to reduce risks associated from intubation (our biggest fear is long term intubation and/or trach). And remaining in good spirits when we’re with him. It’s so very important that I’m able to comfort him, and not breakdown. He knows when I’m upset – and it does affect him. All I can do is try to make him feel better – because what we are about to face is probably our second greatest fear (next to a trach) when it comes to critical procedures.

The decision however is not ours – we know that something had to be done, and it’s our resposibility to do what’s best for him. Giving your child over to the drs as many times as we have – putting faith in complete strangers to do the right thing. Knowing that your child will with all certainty face great pain and discomfort. Well, it’s truly the hardest challenge as a parent. You want to protect them from all of this, but in doing so – you’re only causing them more harm. People that have never faced these decisions in life will never truly understand, or appreciate what we’ve been tasked with as parents of this little miricle. Certainly there is simpathy and remorse – but for us, it’s like asking you to choose which bit of torture your child can afford to live with.

I’ll try to update more in the coming days. Please keep Kyle in your thoughts and prayers.

Selling This Old House, Travels & the Loss of a Loved One

Well, it seems that all things come to an end – and for us, it’s this old house.

This was the first place that Karl and I knew as a married couple. Purchased two months before our wedding, it was truly our dream home. We opted to finish up our restoration projects, and sell the house for a variety of reasons – one being Kyle.

With our upcoming move to a neighboring town, we’ll also be shifting counties. In doing so, we’ll have access to EI/therapy programs not currently available to us, due to overcrowding and financial constraints in our current district. In addition, as Kyle gets older, we’ll have the peace of mind – knowing that a newly built school is only 2 blocks away, within the neighborhood and far from busy streets. He’ll also have access to play areas, near the community center – and a more traditional neighborhood setting.

We’ll certainly miss the charm of our old house, an 1897 Victorian, listed on the National Historic Register as a top contributor to our neighborhood (maintaining it’s style/original design over the many years). The house offers 5 bedrooms, 1 full and 2 half baths, a new kitchen featuring granite counter tops, and an enclosed yard with detached 1.5 car garage. As a unique feature to this area, our home has a full depth basement complete with laundry room and work shop area (Karl’s hangout). If you’re interested in this Old House, please email me for details and access to the Realtor’s site.

Here’s are some recent pictures of Kyle playing in his nursery (ignore the teething spit please, still working on molars). I love how the daily light filters through the windows. He’s getting more playful everyday! He loves studying his toys, every little detail and working part.

I have no doubt that he’ll be an engineer like his daddy – and the many other Knoernschild’s that fall in line around him. I want to take a moment and talk about this, as many things in life occur and affect us. Karl’s uncle, Gene, recently passed away. He was a great inspiration to so many – and most certainly to Karl. He was an Electrical Engineer by trade and Pilot by hobby. The year before he passed away he rode across Iowa, participating in the RAGBRAI. Gene was overcome by a rare form of cancer, and while waiting to see if his bone marrow transplant would take, his body became overcome by infection.

Gene gave Karl his first computer – an IBM XT back when he was in High School, and encouraged Karl to finish up his flight training as an adult. He had a role in inspiring Karl to be the man he is today. In our recent visit to Seattle, Earlene passed on Gene’s flight bag and gear to Karl – and I know that touched him, as well as myself. Visiting brought our own recent loss to the forefront for me – and made me that much more thankful for Kyle and the family that cares so much about us.

Kyle already has his first computer keyboard – and as you can see in the pictures above, his “big boy” room is already sporting a couple vintage model planes. We will be happy with any path that Kyle chooses in life, but helping him explore life without limits will be one of our primary goals as his parents. Although raised on a farm, education was a key factor in Karl’s house. Both of his parents are well educated (Master’s degrees), and his father traveled through Vietnam during the war helping to educate people on farming techniques. Life is a journey with many paths – no matter what path is chosen, it’s important to never limit your learning and exploration. There’s too much out there that is just waiting for you. On the last day of my life, I hope to be able to look back and say that I did I all that I could to help Kyle learn to achieve anything he wants in life – whether that be in career, hobby or happiness.

Now just a few candids… Did I mention Kyle is rolling? Okay – he’s rolling and scooting. In no time flat, he can be half way across the
room, under a chair or getting into a shelf (as he did today) LOL.

Here are a couple pics from our travels to and from Seattle. The first two are pics of Kyle on the plane. Let me see, Let me See, Let me SEEEEE!!!

So Sleepy – YAWN! We caught a 6AM flight, btw – what were we thinking?
On the return from Deception Pass, he decides to show off his advanced Raspberry Blowing skills.

And now pics of my little cowboy :)