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 :)

1 Year Ago & Surgery Today

It was one year ago today that my darling Kyle arrived home – finally free from the NICU. All the emotions that day were so overwhelming, and they still are now, as I think back over how much we had to overcome to get to that point, and how far we’ve traveled since that day.

We had initially hoped to celebrate today in typically Knoernschild style… Going to a special place to eat, after shopping for a small gift for the “Kman” (as he’s referred to by many of our friends). However life had a different set of plans for today.

After being so let down by delays in appointments with our Loyola doctors, I finally decided to make some changes in Kyle’s medical team. The transition will mean that some of his doctors will not be “networked” as before – but we are as close to that as possible (most reside within the same medical complex at least). Current changes consist of the following:

1. New Speech Therapy Team – focusing on Verbal communication as well as eating disorders (still on the Easter Seals wait list for intense feeding therapy). After our first speech evaluation, I took the opportunity to walk the halls of the Medical Center, stopping in and getting business cards and references for new doctors (all with pediatric/neonate specialties).

2. New Pediatrician – Kyle’s existing pedi is relocating, we still hadn’t been “officially” assigned to her partner, so this was an good time to start “shopping peds”. I found one within the same medical complex of several of Kyle’s new drs – including his speech group. Our first “Mom’s meeting” is next week. This is an opportunity for me to meet with the doctor before we officially transfer records – to help ensure that she is capable of handing the coordination of his vast medical needs.

3. New ophthalmologist – after having our appointment cancelled, and rescheduled for November with the Loyola Dr, we found ourselves in a bit of a mess. Kyle’s glasses no longer fit him, and he’s past due for a check up. I found a Peds ophthalmologist in the same building as those above. First appointment, exam and re-order for glasses is next week.

4. New ENT – We were certainly at a crucial point with this, after it had been determined that Kyle was officially tongue-tied – and that it was interfering with development (speech & eating). The dr had an almost immediate opening, so we took it. Last Wednesday was our first appointment. He is a wonderful, comforting, and caring doctor. He was calm and patient with Kyle, and he seemed to like that :) At the appointment the doctor informed us of three things: 1) Kyle’s tubes will most likely fall out within the next three months (not surprising, they may need replaced down the road – wait and see), 2) Kyle’s tonsils are very large – if he was over the age of 3, he would operate – Kyle is too young, so it’s a wait and see; 3) Kyle is severely tongue-tied (he showed me the extent of it during the exam). So – Kyle was scheduled for surgery – due to a first opportunity appointment at our preferred hospital, Karl and I decided that this Friday it would be. More on that below.

5. Nephrologist & Neurologist – Still on the hunt. There are two peds specialists in the same building that carry this specialty. Their offices are closed this week, due to holiday travel – so I will follow-up on Monday… Fingers Crossed.

Now on to the surgery… As mentioned, this was not something we were looking forward to doing, for a multitude of reasons – the least being that it was a reason for celebration on this particular day. However, what we want is quite irrelevant… Because the fact remains, we want a child that is happy – and by all intensive purposes, as developmentally able as possible. As difficult as it can be dealing with the stress and “what-if’s” – the final question remains, ‘Will this benefit Kyle in the long run, and do the benefits outweigh the risks?’ The answer to both of these has always been a resounding YES!

No one wants to see their child suffer, or experience post-op recovery woes – but these are often par for the course when dealing with an extremely premature child. We have been given a gift with Kyle, and it’s our role as his parent to protect him, certainly – but also to ensure that we remove as many roadblocks in helping him reach his maximum potential along the way. I digress on this topic a bit, because it’s been mentioned in the past by very un-educated/ignorant people that I am too “cavalier” with Kyle’s care – such as, what’s one more tube – or by not having a near breakdown before every procedure he must go through. The reason why, because if I’m not strong for him – if I’m an emotional wreck – then who will care for him when the procedure is over??? I mean, for example – when your child cannot and will not eat orally – you really don’t have a choice, as a parent you must do what is right. When the doctor says g-tube… You stop fighting your fears, and you do what is necessary.

Today did come with great risk, for a very simple procedure. The risk was not in the Frenectomy itself, it was in the fact that Kyle would undergo General Anesthesia. The last time he was put under (without intubation), he stopped breathing twice – and this procedure was a mere 20 minutes. I had great anxiety in the thought of something happening again. This time, the procedure would not last more than one minute – and he would be under for 5 minutes… But with Kyle – the risk is still there. He stops breathing, and the bag comes out – followed by being intubated. It’s hard to think about – but re-intubation is my worst nightmare for him. It was so traumatic when he was re-intubated in the NICU, and facing a trach near the end was the hardest thing I ever faced… We avoided that, but it’s truly the one thing that I could not mentally get past – it was the one thing I felt I wouldn’t be able to handle in his care. Since then, he’s had to be intubated for all procedures – except the one mentioned above, which did result in intubation during the procedure, along with a 3 day hospital stay.

I’m digressing again… To the surgery. Kyle left the room at 7:15am, and was back by 7:25 (still sleeping), the procedure went well – no problems. After holding my breath for nearly ten minutes – I let out the biggest sigh of relief ever! After about 20 minutes, the nurse woke him – and to our surprise, he smiled and started to patty-cake. We had been warned that he would be grumpy and probably cry – not a single tear or fuss. He has been playful, a little tired, but otherwise happy and babbling all day.

Prior to the procedure we were told he would most likely remain at the hospital over night on respiratory observation. After ward, the drs felt that he did so well, that we would be able to remain on day observation, and go home in about 4-5 hours. Well, 2.5 hours later, and we were being discharged. Kyle had dropped to his normal oxygen levels (which is currently at 1/8 litre to nothing) and was very active. They were quite impressed – and so were we.

I can’t thank Dr. Kalenic (ENT) & Dr. Tax (Aneshtiologist) enough for the wonderful job they did today.

A Picture Is Worth A Thousand Emotions

Look at that beautiful smile. It’s been so long since I’ve updated, and so much is going on – that it’s hard to find the time. But let’s start out with the biggest news of all….

Tomorrow (Saturday) will mark 1 week since Kyle gave up oxygen during the day. He only uses it now to sleep, and minimally at that. I know this may only be temporary, but it’s a huge step in the right direction. I get teary-eyed just looking at him. He’s so happy now!!! We went to gymboree last Tuesday, for the first time the kids didn’t have to “be careful”. He was just another baby (cry).

I can’t tell you what it feels like to pick up my child, free of the wires and tubes and all the things that restrict our movement. I remember hearing Karl upstairs with him last Sunday, we were getting ready to leave – and he was running through the rooms and halls with him. It’s so hard to explain these things to people that may never truly understand the emotions… But I must imagine that it’s like seeing your child take his first step. This is the third biggest day of our life with him. First being the day he was born, the day we first held him (7wks old), and now this!!!

As for his development, otherwise… Things we moving forward, until his Physical Therapist cancelled all of his sessions for the next 8 weeks. To say that I have been disappointed in the lack of proper therapeutic attention that he receives is quite the understatement!!! So, I’m on the hunt for more therapists again, and keep coming up short. We do have a new speech therapist evaluation next Wednesday, so I’m VERY excited about that. Kyle’s last therapist dropped him when he went in for his g-tube, and couldn’t get him back on the schedule after that – everyone since has been booked as well – very frustrating when you have a child that is orally averse.

Gymboree is the only “therapy” he is getting, and that really only counts as developmental therapy – but it’s better than nothing. I’m hoping some spots open up after the holiday.

BTW – we’re building a new house… If you know someone in the market for a gorgeous, 1897 restored Victorian, 5br, 1.5 ba up/1ba in basement, full depth basement, and a brand new custom kitchen w/granite, etc… Let me know. Our new home will be done in Oct, current home goes on the market after the 4th holiday. Hint, Hint – LOL. More to come on this in the future.