Ethan’s Port Surgery

I just wanted to write a quick entry to update you on Ethan’s port surgery.

Today has been a very challenging day to say the least!

We started off with Ethan having to fast for his surgery, so his last bottle was 10:00pm last night. He was scheduled for surgery at 10:00am, so we thought all was well. He woke up 7:30am, had a dose of Advate to boost his factor levels, had bloodwork done an hour later, and then headed to the OR waiting area to prep for surgery around 9:30am.

Low and behold when they received Ethan’s bloodwork results, minutes before they were ready to take him in for surgery, his levels weren’t high enough!

Essentially they needed his levels as close to 100% as possible to avoid any potential bleeds. His levels were only at 60%, so that wasn’t satisfactory.

We felt so disappointed. They were postponing his surgery again… and even tossed around the idea of canceling it for a while. My heart sank. We knew this surgery would give Ethan a much better quality of life. Not to mention the fact that this was our second time mentally and emotionally preparing ourselves for him to have this procedure done.

Initially when they received his factor levels they were concerned he may have an inhibitor (which essentially means his body blocks the Advate from working)… Thankfully that wasn’t the case.

So, after fasting since the night before, we trekked back to the surgery floor where we had to wait and wait (and wait) for Ethan to receive another dose of Advate before they would make a third attempt.

So, here we are with a nine-month-old that hasn’t eaten since 10:00pm the night before, and he still has to fast. Not only does he have to fast, but we have to infuse him with more factor and take more blood to retest his levels. Oh dear!

What a trooper he has been. Words cannot describe how well behaved he has been through all of this so far. The nurses couldn’t get over how good he was (I think he may have stolen their hearts, too). He quickly reminded me how resilient babies are when it comes to stuff like this; they are definitely stronger than we give them credit for.

Once they received the results of his bloodwork in the afternoon – his levels finally went up to 97% – they scheduled his surgery for 2:30pm.

So, we managed to get him down for a short nap and keep him occupied for the rest of the afternoon… which ultimately meant us walking, and walking, and walking the floors to keep his mind off how hungry he was.

2:30pm came and went, and still no sign. We watched the clock and waited until around 4:00pm. That’s when they called and said they were ready to take him back down.

Finally, after everything was said and done they took him into the operating room at 4:30pm.

He was such a brave little boy. Off he went in the nurses arms and didn’t mind leaving Mommy and Daddy behind! It definitely made it easier on us.

It was a long wait until we heard from anyone. Two hours later the doctor came up to talk with us and let us know how everything went. Ethan’s surgery was a success! By that time Ethan was back in the recovery room and doing well.

He was back in my arms around 7:30pm. It was like holding him as a newborn all over again – I was so excited to see him! He stayed snuggled in my arms for about an hour or so before he woke (and of course I really enjoyed the extra cuddles). At that time we were able to give him some water and Tylenol, change him into his sleepers, and then get him settled away for a bottle.

Poor little guy, it was the first bottle he had in 22 hours. Boy did he ever enjoy it!

Now he’s sound asleep snuggled into me as I write this entry. We are all so relieved that he has his surgery over with so he can recover and get back to normal.

Now that we have that out of the way, we will begin prophylaxis and start learning to infuse Ethan through his port in the next few days. Something that is new to us, but will be a part of our life from now on.




3 thoughts on “Ethan’s Port Surgery

  1. your journey over the past few weeks has not been an easy one, however your strength has been aspiring. That little boy and you two as parents have shown exactly what love and devotion can provide. 🙂 thinking of Ethan as he recovers and looks forward.


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