Arden’s June ’22 Surgery Update
The past few months have flown by, and for some reason I’ve felt like I’ve barely had enough time to sleep and eat right, let alone write a blog post. That’s not true of course, but priorities in life have shifted this summer. Days in the sun are more important than spending time on a computer, and I know that soon there will be plenty of wintry times to spend curled up, pouring my heart into my writing.
In June, Arden finally had the procedure for the correction of his ptosis (drooping of the eyelids). At the same time, he had a few things that needed to be done by urology, so he had three surgeries at one time. As I have mentioned on social media, there are some procedures and bits of Arden’s medical information that I will not disclose. Although we love sharing his life and progress with everyone, there are some things that I believe need to remain private for him. That said, I won’t talk about what Arden required from urology.
Although the procedures in June might have been considered “minor” in the grand scheme, they were honestly some of the most traumatic that we’ve experienced since the year Arden was born.
The eyelid procedure turned out to be different than we expected. Typically to correct ptosis in adult patients, they simply trim the eyelids. For Arden, since he doesn’t have the same muscle control, they had to do a sling procedure. This meant that they would make a couple incisions in the eyelid, and three above each eyebrow to insert a sling so that the muscles above his eyebrows would help to lift the eyelids. This left three scars on his face above his eyebrows, and although we think he’s perfect regardless, it was definitely surprising.
We were told that all three procedures, “minor” as they were, would only take about an hour or an hour and a half. However, Arden went into surgery at 7:30AM, and didn’t come up to the unit until after 11:30AM. We were terrified, impatient, and anxious.
While your child is in surgery, there is no way to find out what is happening unless you ask the unit to call the surgery desk, and even then, they can really only tell you if they are still in surgery, or if they have moved to recovery. It’s a waiting game that I would never wish upon anyone.
When Arden finally did come up from surgery, we were shocked by what we saw. His eyes were stretched open so wide that he couldn’t close them. He was swollen and bruised. The only saving grace was that he seemed to be in a good mood. He was so happy to see us, and the nurses said that he was very reasonable in recovery, and he listened intently to what they told him.
When Arden goes under anesthesia or has any procedure done, our biggest concern is for his respiratory health. How will it affect his breathing? Luckily, Arden came out of surgery breathing well, and only required a boost in oxygen for a couple hours after surgery. After that, he was back to baseline and breathing exactly how he always does. Yay!
Arden needed to rest and sleep after surgery, and we were horrified to discover that he couldn’t close his eyes to sleep. The lids were so stretched, and so swollen, that when he did fall asleep, his eyes were still near fully open. We were not given any warning about this by the ophthalmologist, so it was shocking and scary at first. Despite this new development, it was not the worst part of Arden’s after surgery hospital stay.
Following the procedures that Arden had completed by urology, he experienced A LOT of bleeding. The nurses did their best to control it, and when they began to worry, they contacted the urologist to come see for himself. Our nurses provided everything needed to do wound care in a sterile manner, and our urologist chose instead to use a baby wipe to stop the bleeding. (Cue my shock and horror!) He then requested that I hold Arden down while he “applied pressure” to the wound… for a solid five minutes. It was heart wrenching to do so, as Arden fought and screamed in pain. After the urologist left, we comforted our baby back to sleep, and we were told to watch the bleeding for another few hours to see if clotting would occur.
That evening, the bleeding still had not gotten any better. Luckily, the staff surgeon urologist had now gone home, and we were left with a urology resident. The resident came up to check on Arden, did wound care in a correct and sterile manner, and addressed our concerns with kindness and courtesy. We were told that if the blood did not clot soon, they would do an early morning hemoglobin test to ensure that Arden didn’t need a blood transfusion. Fortunately, in the wee hours of the morning, the blood did begin to clot, and we breathed a small sigh of relief.
Meanwhile, Brodi and I had not left the hospital since 6AM on the previous morning. We refused to leave Arden’s side, and ended up getting broken bits of sleep together on a single parent bed that was next to Arden’s crib. Around 8AM, our pediatrician came by to check on Arden, and since the bleeding was under control, he decided to discharge us. It sounds a little crazy, but Arden’s doctor knows how our family operates, and I believe he also knew that recovery would be much better at home. We packed up, received prescriptions for ointments and eye gels, and made the 6 hour trek home.
As predicted, Arden did really well in recovery at home. It took a solid 3-4 weeks before Arden’s eyes healed and he started to look like our sweet little man again. We did have a followup with ophthalmology 2 weeks after surgery, and at that point I was still worried about the swelling and the appearance of Arden’s eyelids. The surgeon reassured me that things would get better with time, and he was right. After accepting that I just needed to be patient, another 2 weeks passed by and Arden was now bright eyed.
It’s actually incredible to see how Arden’s eyelid procedure has changed his life. He is noticing the world around him like never before, and it’s wonderful to see him looking up and around at everything he sees without straining his neck to do so. He was always so inquisitive and aware of his surroundings, but now there are no barriers to his curiosity. He has more awareness of his body movements, and is now attempting to climb and crawl on his own. It’s amazing how important and life changing the ability to see properly can be!
Although this latest procedure was a bit traumatic, we are glad that it’s done, and we are happy to see that the medical decisions that were made are already impacting Arden’s life in a positive way.
XO, Rayel