Like Family

We walked into Children's Hospital bright and early yesterday, checking in at 6am.

The day before, one of the Day Surgery nurses had called to go over when to stop giving him solids/liquids, etc. She quickly figured out we have been through this before and seemed happy she could save her long "speech".

As we were waiting, we saw a nurse we thought we knew walk by the front desk. Jer and I turned to each other and asked if that was so-and-so. Hm. She had been the last nurse we had before being discharged after AJ's CI surgery. We checked in and again, surprised the nurse when we knew to come back out of the weigh-in area and that we'd be going to a POD.

Sure enough, we were right. We asked if it was Nurse X and were told it was. Five minutes later she was running into our room, so excited to see us. AJ looked much different than he did the last time she saw him. She thanked us for the thank you note we sent. That made my day. We had make some fingerpaint art and then cut it down to size and mounted it on cardstock to make thank you cards. As we went throughout AJ's CI surgery, I made mental notes of who was who and sent each of them a thank you note. She told us it made her day...normally they only hear about "bad things" or how things went wrong. I seriously do not think I would have survived that night without those wonderful nurses. They were AWESOME. Sure we remembered her, but she remembered us as well.

That nurse happened to be working in the surgery holding area that day so she returned to her area and his nurse for the eye surgery/circumcision administered the joy juice.

Nurse X came to take us down to surgery holding. We were in the same "slot" as we were for his CI surgery. She was seriously excited to see us again and have a chance to chat. It was so quiet. We were the only ones down there for a good 20 minutes. AJ's ophthalmologist came in and greeted us. The urology resident soon followed. Soon after the anesethiologist came around the corner...and what do you know, it was Dr. A. She also did the local for AJ's ABR. Ok, this was just getting weird! The surgery nurse came in and it was T! The same nurse AJ had for his CI surgery. Ok, he's in good hands. Dr. A beat T to the punch in carrying AJ into the OR. AJ was lounging on Dad's shoulder while all of this was taking place. We left laughing and giggling, which was relief incognido.

Despite all of the light-heartedness above, we were sure to ask Dr. A to please refrain from using a particular anti-nausea drug and go with the 2nd choice right away. We also shared his post-op experience for his CI and warned of his tendancy to hold his breath and desaturate in the PACU (Post-Anesethia Care Unit).

We went down to the new main entrance and ate in the new cafe. WOW. What a beautiful space. We floated back upstairs when I got my "itch" (signal where I become distracted and know its time to go). We ended waiting in the surgery waiting room for quite a while. We received updates on both procedures from both doctors relatively quickly after our return upstairs. All went well and we received post-op instructions.

We waited for what seemed like forever for the call allowing one of us to go back to the PACU. I took a deep breath as those automatic doors opened. AJ was already awake, and honestly looked like an airplane. He had soft splints on his arms to keep him from rubbing his eyes. His eyes were normal, heust ointment in them. We were back up in the Day Surgery area five minutes later. Huh? Ok, I kept thinking something odd was going to happen as I was carrying him.

Within 15 minutes he was sitting up, drinking juice, and playing with toys. AMAZING. A totally different post-op experience. Much much better. We were discharged and home by 12noon. He had a good rest of the day. Tired...and only tried to rub his eyes a few times. He's not a big fan of his eye drops, but what kid is? He was up and walking after his nap yesterday and did the same today. His ophthalmologist even called later that day to personally check on AJ. We went for his post-op appointment today and she was pleased with the results.

A muscle was cut in each of AJ's eyes. The incision is made in the "white" of the eye, under the lower eyelid. The muscle is cut, realigned/repositioned straight, then reattached. Dissolvable stitches are used and antibiotic eye drops are used. Quite an amazing process...that results with nothing on your eyeballs.

AJ's eyes now move together. It is the NEATEST thing. He now has better depth perception, which is the reason he was freaking out a little bit last night when staring at certain objects. His ophthalmologist also shared that he won't need vision therapy in school. YAY! We won't know the full result of the surgery for 6-8 weeks. But, his eye doc is pleased with the results and everything looks great so far.


We are so thankful that yesterday was a pleasant experience. Whether we admitted it or not, we had anxiety about yesterday. A different anxiety than what we went into his CI surgery with. We are thankful for AJ's "family", "team", "providers" at Children's. It truly is an amazing place and we are so blessed to have such a place so close to where we live. And yes, another round of fingerpainted cards will be sent out soon....

Special thanks to my Mom for getting up so freakin' early and staying with us through AJ's surgery. You ROCK!

Manic...

I am dubbing today as Manic Monday....oh, lets just say we're on the verge of a manic week.

We are less than pleased with the school district (SD), which I know is not "new", but it seems to continue to get worse as we go along. For something this important, "last minute" efforts are not cool.

It seems that AJ's surgery tomorrow has put a wrench in everyone's plans to come and observe him. Again, let me say that we are very thankful that his current team is doing the evaluations, with the SD only coming to observe. His IEP is scheduled for the 3rd of June. It seems that everyone is in a mad dash to complete their observations. Between his surgery and Memorial Day being next week, it's a mess.

So far I've been cancelled on by one SD staff member and deeply offended by another SD staff member...during a phone conversation last week. The SD Speech Therapist and Early Education Teacher will be coming to observe AJ at toddler group today. The school nurse, vision specialist, and psychologist all still need to observe AJ.

After toddler group we have to rush home for his TOD to come for her session, nap, and then OT later tonight.

Tomorrow is his eye surgery and other procedure. He was cleared for surgery on Friday. WHEW. It should only take an hour total. We have requested to have the surgery done at CHW instead of the outpatient surgery center. Given his history, it just makes us feel a bit more comfortable. He will be in the same Day Surgery area as he was for his cochlear implant surgery. We are a bit nervous as to how he will do post-surgery, given what happened post-op after CI surgery. He will go home the same day.

He has a follow-up the next morning with his ophthalmologist the next morning (which means no toddler group-SIGH). I wasn't sure if he'd be himself enough to go to group anyways, so maybe its for the best. Thursday he has his 1 month CI follow-up/programming and Friday he has speech (which we have to go to since he'll be missing Tuesday's session due to the surgery).

It's a manic Monday & week....man I wish it were Sunday.

Camo Pirate

AJ saw his new ophthalmologist, Dr. P, yesterday. The appointment went well. It was decided that AJ will have the surgery to correct his esotropia (crossing of the eyes). Dr. P wants to wait until after his cochlear implant surgery. In the meantime, we must continue to patch. We alternate (Monday left eye, Tuesday right eye, etc.) eyes, patching for a minimum of 1 hour/day. We need to continue the patching so that AJ does not lose his vision in either eye.

Dr. P also shared that although AJ can look at us "straight on" he does not use both of his eyes together. There are four muscles around each eye. One on the top, on on the bottom, and one on each side. The muscles towards his nose, on both eyes, pull in too much. Therefore, he's only able to use one eye at a time.

We also found out that he is near-sided and has a slight stigmatism. After the surgery, he will wear glasses to force his eyes to focus. The surgery is a relatively simple procedure, and is done in Day Surgery at Children's. First the ears, then the eyes...

Above are pictures of our camo pirate. I realized no one except for AJ's Dad and I have ever seen him with his cool patches on!