First Follow Up Appointment

Spencer with his big brother, 4 weeks post surgery

On July 20^th, almost a month after surgery Spencer is doing amazingly well. He is almost completely back to himself. His sleeping at night is greatly improving, his eating is exactly the way it was before surgery it is just the napping and the strange anxiety that is left but even this is improving. Today we had our follow up appointment with Dr. Phillips at Sick Kids Hospital. Besides waiting forever the appointment was filled with happiness instead of fear for us. We knew Spencer was doing amazing and really had no concerns and this was true for Dr. Phillips as well. He examined Spencer and observed the same as us. His scar is healing extremely well, he has no infections, most of the stitches have come out and overall he is looking great. I did have a concern that in a mirror Spencer pretty much looks the same as prior to surgery. Knowing deep down that the results would really take time to see it was nice to hear that we were right in that the results would take time to see. Dr. Phillips explained that when they actually do the surgery the only thing they really correct is the forehead and open the fused suture. The rest happens on its own over time. Over the next five years he says the soft tissue will change and shape his face drastically and it WILL be symmetrical. This is comforting to know, so when he is ready for school he should be perfect which is what we were striving and the reason we went through this whole ordeal in the first place.

 

 

We do not see anyone now from Sick Kids Hospital until January for his 6 month post surgery check up. As I understand it, Spencer will continue to be watched over the next five years as he grows, not only by plastics but by the ophthalmology clinic as well just to make sure everything is developing and growing as it should be.

 

I will continue to post pictures and update the blog as he does grow so everyone will be able to see the progress right along with us.

 

My next blog post will be a special one in that I will discuss the surgery from a different perspective and that is through the eyes of my four year old son. I will explain how we told him, how he handled it all, the questions he had and so on. Please watch for that shortly and again thank you to everyone who has been reading and sending their love and support it means a great deal to all of us!  

Two weeks post surgery!

Spencer 2 weeks post surgery

I forgot to mention in the last blog about the drug regime we used and realized I was holding back some important information.  The first day we were home I continued with the Tylenol and Advil routine every four and eight hours respectively. The next day being the Tuesday (6 days post surgery) I noticed that Spencer seemed to be having stomach issues. He began to vomit and he was eating less and that was because of all the drugs. So I consulted my pediatrician as I was worried about dehydration mostly, and he gave me some very sound advice. He told me to buy a drug called ACET which is accentually Tylenol but suppository form so that it would bypass the stomach. This helped tremendously and the vomit stopped almost immediately.  After that issue it was all uphill.

The second week home was easier than I had expected. I continued to give him ACET but I wasn’t completely sure that he even needed it any more as I was noticing we were going longer and longer throughout the day without it. I decided to call Sick Kids (as they tell you to if you have any questions) and asked them if it was too soon to stop. The nurse on the phone was amazing, asked me about his recovery and advised that we should start weaning him slowly off it. She told me to keep the before bed dose and the dose first thing in the morning and drop all the others and then after we have done that for a day or two, drop the morning one and keep the bedtime one. And lastly, after another day if he doesn’t seem uncomfortable then drop the last one. By the Friday (9 days post surgery) he was off all the medication. He was in no pain whatsoever.

There were only two things that were still part of his recovery left to deal with. One being his napping and two being his stranger anxiety or “mommy-itis”. At this point he was sleeping at night in his crib, only getting up once or twice which is not so bad but naps were a real challenge. Before surgery he was napping twice a day 2 – 3 hours at a time, now he was napping 10 – 15 minutes at a time in the crib. As you can imagine it was difficult for me to deal with and I was completely exhausted from going up and down the stairs, rocking him and putting him down again and again but I wanted to persevere. He would fall asleep in the car but again only sleep for short periods of time but we were forewarned about that. Dr. Philips had told us “It is like bringing a newborn home again”. It sure was. I think I was more tired now than I was when Spencer was a newborn as he was always such a good sleeper but I knew it would pass as all the parents say it does.  The stranger anxiety was also hard because he still didn’t want anyone but me. He would go to Steve (my husband) for short periods of time but even people he was completely comfortable with before surgery might as well have been strangers as they were “strangers” to him now. Funny enough though, he was always comforted by his big brother Eidan. No matter what Eidan seemed to bring a smile to Spencer’s face and it warms my heart every single time! Dr. Philips also told us this would happen as he went through such a trauma and was surrounded by strangers who poked, prodded and did this terrible thing to him and it would take him time to forget.  I’m hoping this stage passes too as it would be nice for him to be himself again!