In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
7/6Surgical order:ABR -- Adrienne, audiologist; Ear tube check and possible re-insertion – Dr. Muntz; Circumcision – Dr. DeVries;Bronchoscopy – Dr. Gershan;Lip Repair – Dr. Siddiqi.
7 am.We met with Dr. Siddiqi, the plastic surgeon.He took pictures of Aaron and spoke with us.He said Aaron won’t need the no-no’s on his arms and he can touch the surgical site.That will be a relief.There will be some superglue on the stitches which will go wear off in about two weeks.At that point, we should start using vitamin E oil to massage it.He’ll also have some nose stints in his nostrils to help mold them properly.
7:30 am.We met with Dr. Hannon, the anesthesiologist. A friend strongly recommended him for the surgery, so I called and requested he be the one on for Aaron.He went over the risks with us and said the most risky part would be the bronchoscopy.That’s fourth on the list for procedures.But he doesn’t feel that it will be a problem.I pray it won’t be.After we finished talking, he walked us down the hall, and then took Aaron back.About 15 minutes later, a nurse brought Aaron’s stroller with all his equipment out to us.So now I have an empty stroller sitting here, with lots of equipment on it, but no Aaron.
8 am.Dr. DeVries, the urologist met with us.She anticipates no trouble with the circumcision, but he will have stitches. They’ll dissolve on their own.
8:50 am.Update from Dr. Hannon.Aaron is doing really well and the ABR is done.But he wanted to warn us that it had been really hard to get the IV in.It is currently in his scalp.So we have an antenna.It’s not his first one.
9:15 am.ABR report.Aaron has significant hearing loss.He has a severe loss in one ear and a severe/profound loss in the other.But Adrienne, the audiologist, feels like he can be helped quite a bit with hearing aids.So now we try that.While waiting for the rest of his surgeries, I made an appointment. We'll go on July 21st to have a hearing aid evaluation and it will take a couple weeks to get everything in place after that appointment.
Parents are coming and going from the waiting room.We just wait.It’s a slow surgery day, so there aren’t a lot of people here, but I think we may be the longest procedure (or procedures) today.
10:00 am.The circumcision is done and went well.Now we’re on to the bronchoscopy, the most dangerous part of his surgeries.
10:50 am.Dr Gershan just came in.The bronch went really well.Aaron has a couple of anomalies. (What else is new?)His right main stem seems to have a small bit of tissue somewhat obstructing it.This could lead to a predisposition for atelectasis and plugging.However, once he went past the tissue, the lung opened up really well.On the left side, usually there are two main tubes leading to the two lobes.Aaron’s left lung decided to just split at one point, so it’s more like he has one huge left lobe instead of two smaller ones.But otherwise, his airway looked really good.We won’t look at trying to wean him off the vent until probably next spring sometime, and only then if he does really well this winter. Stay healthy, kiddo!
Right after surgery in the recovery room.
The O.R. also called and they are about 30 minutes into the lip repair.Aaron is still doing very well.So we’re in the home stretch.Hopefully only another hour or so, and then into recovery.
11:45 am.Dr. Siddiqi came in.Surgery went really well.He didn’t even put in the nose stents because his nose rounded up really nicely.So basically, we keep pain under control and he doesn’t need no-no’s or anything.He can go back to trying to chew on his fingers and everything.Now I’m just waiting to go back and see him.
In his room and hoping to feel better soon.
1:15 pmWe are on the floor.I was called back into the PACU (recovery unit) when Aaron started to wake up.He does seem a bit uncomfortable and was coughing a little.His face is kind of swollen, but he looks really good.When I got back to PACU, he was swollen, but I didn’t notice any bruising.Now the bruising is creeping up his mouth and to the side of his nose.I don’t think he’s going to be very happy when he wakes all the way up.But he’s doing great on his oxygen and vent settings.He’ll be on IV fluids until he wakes us more, and then we’ll start transitioning to his formula.As long as he tolerates it well, we should be on our way home by this time tomorrow!YEA!! Right now he's sleeping peacefully. I'm wondering if I should try to do the same. 4:00 am was a long time ago.
Thank you so much to everyone for their prayers.I know it has made all the difference for him.