Katie’s Adventure — Trip 2

Today, Katie met the neurosurgeon or the neurosurgeon met us, or whatever. At any rate, Katie met the neurosurgeon. Hereafter known as Dr. G.

We dropped Ben off with another of our wonderful friends and headed out to Davis Island where Dr. G’s office (one of them) is. Nice facility with valet parking (go figure), but it does make it very easy to get from the car to the next locations with a small baby.

We went up to the “academic offices” in the building looking for our contact person. We were informed that she wasn’t in yet for the day, but to have a seat and someone would be with us shortly. Much to our surprise, it was Dr. G. She was out of surgery early, we were early, so she figured we should just get started.

She is very calm and seems to really know what she’s doing. Of course, she thinks Katie is adorable (I wouldn’t be her mom if I didn’t agree with that assessment, would I?). At any rate, the exam was fairly, well, short.

She measured Katie’s skull, looked at her feet, checked her movement of her hands, neck, and so forth. Then we unsnapped the bottom of her outfit and slipped her diaper off to check her bottom. Apparently, it’s “asymmetrical” — I’m wondering if that means she’s going to have trouble with bathing suits when she’s older. She checked hip movement and all of that other fun stuff.

She then explained to us what, from her perspective the surgery entails and what we need to be aware of and what “options” we have. The short version is we have no option. Katie’s eye sockets are not developing “normally” and must be reconstructed, which is a major part of the surgery. She showed us, on Katie, where the sockets should be and the shape of the eye as it should be and how Katie’s are, now, quite obviously not in the right place and not the right shape, which could cause problems down the line.

She explained that the surgery will involve a cut from ear to ear on Katie’s head. Because Katie has inherited my hair (for those who know me IRL, you know what this means; for those who don’t, curly and fine), she wants to do the cut in a wavy pattern so that it can be better hidden by her hair. She suggests, though doesn’t require, that we let them shave Katie so that she is completely bald. So, I’m guessing her 1st birthday pictures are going to be unusual (Auntie ML — have a solution for that?).

Once they’ve made the cut and peeled back her scalp, they will cut and remove her forehead area and reshape it. They will reshape the eye sockets and smooth out the ridges, put in spacers and so forth to promote growth. They’ll close up and use either paper tape or absorbable sutures. Katie will the be in the ICU after the surgery.

She said it won’t look too bad immediately after the surgery, but by the morning following Katie will be very, very swollen. We’ve been warned, by others, that she will be so swollen that her eyes won’t be able to open. She will be able to take a bottle in the recovery room and she’ll be eating and so forth fairly quickly after the surgery. She’ll be released three to four days post-op assuming no complications.

The potential for complications is a little scary, but she says she never seen one of these have the potential complications, so we feel a bit reassured. Potential complications include tearing of the brain covering or damage to the optic nerve or the eye itself. Again, she says she’s never seen it happen, but because of where they’re working, the potential exists so she has to inform us.

Katie should be released three to four days post-op depending how she’s recovering. Once she’s home we will have to care for the surgical site. She will be seen by either Dr. R or Dr. G at seven days post-op, and then by the other one a few weeks later. Apparently, she’ll be seeing them both intermittently for a while, but they trade off who she visits each time.

The chances for the need for further surgery are fairly small because of the type of stenosis that she has. Because both eye sockets are involved, instead of just one, it lessens the chance that she will need to have her head further dealt with at a later time.

Next up for Katie is a trip to the pediatric ophthalmologist and the scheduling of her surgery date.

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Katie’s Adventure — Trip 1

Today was technically the second, but really the first part of Katie’s adventures through the land of pediatric surgery and diagnostics. All told, this went about as well as we could possibly hope.

We got up at an ungodly hour of morning to feed her before she went in. She needed to have eaten four hours prior to going in just in case sedation was needed for her. I went in to get her at 5:55a. She was still sound asleep. I touched her gently, she rolled away from me. The only way I could get her to wake up was to pick her up. Then, she was awake. Poor thing.

She ate her usual bowl of Earth’s Best Oatmeal (she LOVES this) and had her bottle. She was finished with the whole thing at 6:25a. I let her play in her seat (helps to keep the spitting up to a minimum if she plays in her feeding seat for 15 minutes after she eats). While she was doing this, I got dressed, and started putting Ben’s adventure bag together as he was going to play at a friend’s house. An aside, we are blessed with awesome friends who think nothing (or very little) of taking our energetic, not quite potty trained, almost four year old for a significant part of the day, and find ways to keep him entertained. It’s a relief to not have to worry about him — at all — while we’re dealing with these other things.

We finished getting everyone ready and left the house for our trek to All Children’s, St. Pete (with a brief side trip to drop off Ben). P was worried because he had only been able to get out there once and hadn’t been able to find the parking lot or the entrance. With me along, we managed to find both easily and arrived with plenty of time to spare.

After receiving our visitor’s passes, we checked in in the radiology clinic and sat in the waiting room filling out a very small amount of paperwork related to the possible sedation. We had pre-registered, so we didn’t have to do all the regular admittance paperwork. Katie was tagged and we waited more.

When we were called back, we went straight to the CT room. They had me lay Katie down on the scanner bed and they started strapping her onto the table. This was not something that Katie went for at all. She started sobbing before they had all the straps on her. We tried giving her a pacifier. She didn’t go for it at all. Katie has been off pacifiers since she was three months old.

So, we were taken to the radiology holding area where they asked us questions about her weight and so forth and we waited for a nurse practitioner to decide what drug they were going to use.

After about fifteen minutes, she looked Katie over, made a decision and then we waited a few more minutes while they prepared her medicine. It was given to her orally, so no IV thank goodness. She started getting drowsy fairly quickly, but would not let go for me. I handed her over to P and he managed to sway her all the way out. This was a first for him … two children and an untold number of friends’ children who have been rocked by him in the past, this is the very first time a child has fallen asleep in his arms.

It was like moving Jell-o she was so loose and thoroughly out. We took her back to the CT scan room and it was very easy to put her on the table lightly strap her in place and take the scans. It took maybe five minutes for them to get the scans they wanted.

We took her back to the holding area to wait for her to come out of sedation. The nurses shooed us off to the cafeteria as it was lunchtime and neither of us had eaten yet. So, we left Katie with them and went quickly to the cafeteria. Let me take a moment to say that their food is actually edible. I wouldn’t necessarily order it as take out, but for hospital food, it was really quite good. We were there about 20 minutes when we received a call to let us know she was awake.

We hurried back upstairs and found a small group of nurses fussing over her as she laid on the gurney. We didn’t have any clear liquid for her, so they gave us some pedialyte which she drank and held down for a few minutes. With that we were free to leave.

We won’t know the results of the scans until our doctor receives them, but I feel confident that we’re not going to be surprised by the result. We are both feeling much more confident about our decision to use All Children’s as a result of this experience.

Monday, Katie will meet her neurosurgeon. I’ll be sure to report that experience as well.