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.