Ditty

Surgery-Finally

I have been remiss because things around here have been almost mindblowingly busy. Like, "I-can't-keep-up" busy. I have wanted to write about how Gillian came to have surgery two days before Thanksgiving, and I think I primed the discussion in a previous post . Well, to pick up there, the sleep study was positive for obstructive sleep apnea (OSA), and it was apparently pretty severe. So, yay for Mama instincts, even if they were way behind the game. We met with the doctor to discuss the results and schedule her surgery. She had to have a pre-op physical (loads of fun, considering we had a ton of bloodwork and vaccinations before she could start school at her 4 year appt just two months before) at least 1 week before the surgery. So, in spite of the logistical stress we had to manage, we were able to get her in and get everything she needed to have the surgery on November 23rd, two days before Thanksgiving. You might say it was a little mean to have the surgery before Thanksgiving, but I would say something about how she doesn't ever eat anyway. Plus, I scheduled it that week because she would only miss 3 hours of school (they had a partial day Tuesday, and no school the rest of the week) and I would only have to take 1 day of annual leave because of the holiday and a trip to Ohio I had a comp day for. So, it was for the best.

They called me at the last minute Monday to tell me what time we needed to be at the hospital, and they said 6 am. I asked when the surgery was scheduled and they said 9 am. Of course, this idiocy prompted me to exclaim something to the effect of "my GOD woman, how am I supposed to entertain a 4 year old in a waiting room for THREE HOURS?!?" To which she explained I would have to sign some paperwork and get Gillian in her gown. To which I said "that takes all of 10 minutes, what shall I do with her the other 2 hours and 50 minutes?" Then she gave me the "I'm just the messenger" explanation that "this is the doctor's preference and his policy, but it probably wouldn't be a big deal if you got here around 7 am"...and I said, "are you telling me it's ok to come later? Would this keep us from getting her in?"...and she said "no, I'm not saying that at all, but you would probably be ok coming in at 7 am ...you could probably still get in". I could almost hear the winking. Like "yep-DUMB policy, but it is the policy nonetheless". Then she reminded me that Gillian could have nothing-no food or liquids-after midnight before the surgery (the idea of witholding even water from her was a terrifying thought for me because she loves to drink water).

So, I waited till I was showered and dressed (and full of water because I didn't dare drink or eat anything in front of her and deny her food and drink) in the morning and woke her up at the last second, got her dressed, all groggy, and into the car. I was armed with our portable DVD player and a brand new Little Mermaid DVD (thanks Nonni and Grandaddy!!!) to help pass the time and keep her mind off the fact that her throat was feeling like the Sahara Desert and she was starving to death. I have absolutely no idea how our forebearers managed without DVD players, but I, the Ugly American, digress.

We waited for about 40 minutes in the first waiting area before being corraled to the second where we had to get Gillian in her gown and get her weighed and get her blood pressure and oxygenation checked.

I asked to be present in the room during surgery, or at least during anesthesia, but the nurse was hesitant. She had me put on scrubs just in case I was allowed, though. After another hour and a half of waiting we were told it was time to go. So Gillian thought it was great fun to go on a ride on the "bed with wheels" and a man came and got her to take her down to surgery on an elevator.

At this point, he gave us both the little head coverings so we could go to the surgery floor, and I got this sick knot in my stomach, because PEOPLE DIE EVERY DAY FROM ANESTHESIA. And I had this flood of worry about my tiny baby being put under and how cruel it would be that after everything we (us and Gillian) had been through to get to this place, This FOURNESS, I would die if something happened to her. It might be irreparable heartbreak that would result in me immediately dying (kindof like the image I got in my head of how, according to my mom, Elvis, grieving over his loss of Priscilla, just keeled over and "died of a broken heart" (enter complete denial of that prescription drug problem)). That would be me if something happened to my baby.

They parked us in pre-op, and the anesthesiologist came to tell me, after I again demanded to go with Gillian while they put her under (I think I actually said, "No offense, but if something goes wrong, I don't want the last faces she sees in this world to be those of the strangers she is surrounded by in the operating room"), that "we usually don't allow family members in because they generally don't do well when they see a loved one go under...we saw many grown men hit the ground when their wives are put under for c-sections, so it is our policy not to allow it" (Now that I think about it, when I had Gillian Sean was not allowed in the room when I had my spinal...my doctor held my terrified hand). I held my ground, and he relented and told me if I did what he asked and asked no questions and left when I was told to I could go in. I agreed. Whatever it took. I decided at that point that I probably wouldn't do well watching the actual surgery because they force their mouths open, and by all accounts is a pretty bloody affair.

Then came the Jedi Mind Trick. The anesthesiologist asked Gillian "do you like strawberry?" and she was all sweet and innocent and eager and was like "yes, yes, YES!", so he brought her the oxygen mask that was pink and smelled like strawberries. He left it with us for 45 minutes or so so she could play with it and get familiar with it. He also asked if she liked pink balloons and she was all "YES YES YES"!!!!! Both of these seemingly innocent questions had a more insidious side, of course. So we waited and waited and waited. Gillian was a rock star and I pulled out all the stops to entertain her. Our 9 am surgery actually started after 10 am. Thank God we didn't get there until 7am. During this wait, lots of people came by top talk to her and ask her questions, and were impressed with how much she knew about what was going to happen to her. She knew they were going to make her go to sleep (not sure she knew how exactly, and she certainly didn't suspect the awesome strawberry mask and pink balloon), and then they were going to "open [her] mouth and go SNIP SNIP, and then SEW SEW it up, and then they would be all done, and then [she] would get as many popsicles and as much ice cream as [she] want[s]!!!". I had tried to prepare her the best I could so she wouldn't be scared, and she did absolutely amazingly. She was not scared at all, and everyone was great with her. I got weak knees when they finally said it was time. We wheeled her little bed into the very intimidating operating room, where 8 people were bustling around getting ready. They showed her her "warm PINK bed with a princess pillow" (translation: operating platform with pink heated sheets and circular head cushion), and she was afraid, and only wanted me to help her onto the bed and "tuck her in". The doctors showed her where the pink balloon was and now her pink mask was attached to a hose and the balloon. She only wanted me to hold the mask, the pink strawberry mask, to her face (at this point, it was clear that had I not been there, she would have been terrified and traumatized by the strangers forcing her do these things). They asked if she could blow up the balloon? And she blew it up and we all cheered. And then they turned on the gas, and she kept playing the game, blowing up the balloon. Except now she was being gassed (this is the point where I blinked back tears). Oh, how I felt terrible for that deception (and also glad I didn't stay to watch her get intubated so she could breathe in spite of the bleeding during the procedure and stuck with an IV). Her eyes started rolling back, and she clumsily kept trying to play the game that she probably couldn't quite remember, and then she was out. I was told to leave, and they said they would come get me and I would be there when she woke up. They told Gillian that too to soothe her. She verified it with me three times. And I always said "yep, I'll be RIGHT HERE".
So, it was the longest 45 minutes of my life (aside from the longest 7 days of my life when she had the staph infection in the NICU and was fighting for her life), and I prayed and I prayed and I prayed. And I waited. Finally the doctor came and told me everything went great and that I would be summoned shortly to go to recovery. Gillian would be observed for an hour or so while they monitor her vitals before being sent down to post-op for ice cream and IV removal. About 10 minutes later one of the other docs came and brought me to her. I walked into the room where about 10 people were resting post-op and heard her screaming. They didn't get me there in time. I wasn't at her bedside when she woke up like I promised. Like they promised ME. But my promises are more important, and I don't make them lightly. Four people were holding her down. In her confusion, she didn't know where she was or who she was surrounded by. I am still sad thinking about how alone and abandoned she felt. I ran to her and got in her face and told her I was here. She kept crying "where were you? you said you would be here!!". The doctor assured me she wouldn't remember I wasn't there. I corrected her, and told her she absolutely would remember-that she remembers EVERYTHING. She said statistically, 95% if patients don't remember the first 15 minutes of wakefulness after surgery. I told her MY CHILD would be among the 5% that do (and she absolutely does remember, by the way). Finally, she calmed down and they gave her some IV pain meds, and they brought me a big lounge chair to hold her on, and we navigated wires, and I was reminded of her godforsaken isolette in the NICU and navigating all those wires, and I had a moment. It even smelled the same.

My baby rested on my chest, just the same as before. I was so glad I was there, and so glad she was ok. Her tongue bothered her the most, it seemed. It was grotesquely swollen where the instrument that held her mouth wide open had been-it sliced her tongue. It looked awful. The nurse brought her a latex glove filled with ice chips to suck on. That and the narcotic took the edge off. After an hour, we went back up where we started for ice cream to see how she did with eating before they took the IV out. She was out of it and sleepy but she did fine.

We headed home 6 hours after we got there. I hadn't had any food or water all day, so I was ravenous and treated myself to donuts and coffee since Gillian was out cold in the back seat. I stopped and filled prescriptions for a steroid for swelling, an antibiotic to ward off infection, and Tylenol with codeine for pain. I took her home and she slept most of the afternoon. She woke up for ice cream and to watch a Disney princess movie and went back to bed (loathe to miss an opportunity to get things done, I was painting our newly installed fireplace and shelves like a madwoman during this time).

In the days that followed, we just kept her dosed with regular strength Tylenol and Motrin during the day and the Tylenol-codeine at night. I immediately noticed that she slept with her mouth shut, and I had to strain to hear her soft breathing. No more struggling for air. No more snoring. No more gasping for breath. No more nightmares. Immediately. The doctor said although her tonsils were enlarged, her adenoids were big enough to block her nasal passage, so we made the right decision to remove them both.

In retrospect, I can't help but feel like she lost some of her innocence that day. Every time the big world intrudes on her safe space it seems like it takes something away. I can't forget how she was almost excited about the whole thing, and what the reality was. Or how she was led to believe the mask and balloon were a game-fun. And I get this sick feeling that kids are victimized every day because of that innocence-that believing what we tell them because they aren't crafty enough to think we have ulterior motives. And I disappointed her and wasn't there when she needed me to be. Not my fault in any way, but I wish I had pushed the point that I wanted-NEEDED to be there when she woke up. At least now she has a story to tell. And we are proud of how brave she was and how little she has complained about the whole thing (drama queen that she is, that is amazing in itself). So, that is our story of how Gillian had her tonsils and adenoids removed.

Recharge

Last Friday night, Sean and I had an awesome Mega-Date. I booked a great hotel on Michigan Avenue for $115, made a reservation for dinner, bought Daniel Tosh tickets at the Chicago Theater, and bought two 90 minute “couples” hot stone massages for $55 each. The night went off without a hitch. We got to recharge in a very healthy way. We arrived at the hotel after a really delicious dinner, and I asked the guy at the desk “Do you think you could give us a room with windows? This is our first ever night away from the kids together”. I saw Sean grit his teeth at me and my sharing problem, but he was more than happy to enjoy the corner room suite upgrade we got as a result of me asking. Our view was a lovely one of the Magnificent Mile:

We went up to the room, and relaxed for a little while, and then an hour before the show, we took a scenic walk down Michigan Avenue and walked along the River (which prompted our usual "this-is-the-most-gorgeous-city-on-earth-and-we-wouldn't-want-to-live-anywhere-else" talk). Definitely romantic, and definitely needed.
We arrived at the show and found our seats, and got to admire the intricate and beautiful interior of the theater, grab a beer, and have a seat. We proceeded to laugh until we cried for Tosh’s entire set. He is the epitome of mean humor, but I love anyone that will go there, with anyone. No person or topic is off limits.
The show ended at 1 am (we are usually fast asleep by then) and we walked back to the room and crashed. The next morning we woke leisurely, walked out and got coffee, and chilled a little before heading off to our massage. It was Sean’s first (but definitely not last) professional massage, and it was great! It was in a couple’s room, all dim and zen and awesome smelling, and MY GOD I love hot stone massages! But I do know I will never pay the usual full price-$220 for a 90 minute one.

It is so easy to lose sight of your significant other when you have children. Especially if you have children and an 18 year old niece living with you in a 1600 sq ft condo. It’s hard to make the time for a drink out, or walks, or holding hands. It’s hard to do romantic dinners out. It’s hard to rationalize spending money on things that demand that. We ebb and flow with our staying on the wagon with a date night every week, but lately we have been bad about not getting out, even though we have said niece to help. We both know how vital it is to keep that alive, but it seems like most free time is kid time...

All that said, it is refreshing and awesome to remember that we really do have things in common, and that we love eachother, deeply. In spite of the sleep issues, and illnesses, and limit testing, and busy-ness. We love eachother. And we were away long enough to MISS our girls, so much. So we are reminded of how incredibly blessed we are to have been entrusted with them, and to have a strong partner to raise them with and build a life around.

Sleep and Not

Gillian has always been a snorer. Like, a slumbering bear kind of snorer. Which is pretty weird because she is so tiny. We figure she got it from her Grandaddy who is also a slumbering bear kind of sleeper. Not long after the girls moved into a room together, Gillian started waking up a lot. And this woke Addie up several times a night which equalled one completely exhausted mama (esp on work nights). So, we decided to let her fall asleep in our bed and move her. That worked for about 2 weeks, and then it started to wake Addie when we would move Gillian, which woke Gillian, which still=disaster and everyone awake. So, now Gillian sleeps with me in my bed, and Sean sleeps in Gillian's beautiful single bed (compliments of Nonni and Grandaddy) amid the fairies and flowers (he's secure enough to be ok with that!).

This arrangement has been going on for about 7 weeks now. And since it has been going on, I have had the opportunity to observe the way Gillian sleeps, and it has been enlightening. She is a fitful sleeper, she snores and mouth-breathes, and I can hear her stop and start breathing again. She literally sounds like she's trying to suck enough air to breathe through a straw, and the labored breathing stresses me out and has me in worry mode. In addition to that, she hasn't gained an ounce in a year, and we're stuck at 30 pounds soaking wet. She has been laying her head down at the dinner table because she's "so tired" and has had many meltdowns of late-all indications that she's not getting enough sleep. Recently, she started complaining of leg pain, which could also be associated with poor circulation. All of these things are classic signs of obstructive sleep apnea.

At her 4 year well child visit, the doctor noticed that Gillian had enlarged tonsils, but said if it wasn't bothering her to sleep we should just keep an eye on her. At the time, I hadn't put it together that she just wasn't sleeping well. I thought she was just waking up a lot and being a pain about it. Now I feel terrible because I didn't recognize that it was something potentially more serious. I took her to an ENT to have them assess her last Tuesday with the express aim to get a recommendation for a sleep study. The doctor put "special spray" in her nose (numbing) and stuck a camera down her nose to look at her adenoids. They were also enlarged. He said the tonsils were, on a scale from 1 to 4 (4 being so big they touch-who knew some people have tonsils so big they touch?), hers are a 3. Add big tonsils to big adenoids and it's no wonder she can't breathe well at night and snores. So, he ordered the sleep study. Remarkably, this was painless to schedule and is covered by insurance. I scheduled it for the Saturday following the ENT visit.

We were told to show up at 6:30 pm to get prepped. I talked up the whole thing to Gillian, about how we were going to have a date and stay someplace, just us. And that were going to try to see if we could figure out how to help her sleep better by putting little stickers all over her and seeing how she slept. We arrived, and out tech Chris was there to meet us. Pediatric patients show up a few hours before adults, and he said in a typical night there are usually 4 people there. The sleep diagnostic center was in the Resurrection Hospital complex, and the rooms resembled hotel rooms (except the surveillance camera pointed at the bed). It was warm and cheerful and had cute bugs and butterflies on the walls.

In the photo above, you can see the surveillance camera above the TV. There was a pretty sweet flat screen for Little Mermaid viewing, which made attaching her to all 27 wires muich easier. Seeing all the wires kind of brough me back to the NICU four years before, and it was really uncomfortable for me to see her like that...like some kind of parental PTSD. Luckily, she didn't seem to mind. Because she was spacing out watching Ariel and Melody (Ariel's daughter-Little Mermaid II is her favorite).

Chris hooking G up.

When all was done, we had 27 wires hooked up to this box, which we had to carry with us when she needed to pee at night. We told her the probes on her head (each a different color) would help her dream about extra colorful rainbows. In pediatric patients, there are 20 probes on their heads (apparently mini-seizures are common during sleep with children, and extra probes are needed to test for that). So, she had two probes on each leg. She had a belt around her abdomen and one around her chest (to monitor the synchronicity of chest vs. abdominal breathing, which can apparently be out of synch), she had a probe on her throat to measure snoring, a nasal cannula in her nose to measure nose breathing, and one sticking out from the nasal probe over her mouth the measure mouth breathing. They put the rest on her face (three on the chin) near her temples, and all over her head, which were attached with goopy water soluble paste and tape. The last one was an oxygen laser probe on her finger (to measure oxygen content in her blood). She was a sight, for sure. We brought stickers so that Gillian could "put some probes" on me so we could match. And she put some on Eloise (a bear Chris gave her when we first arrive, wearing-what else?-a pink shirt) and her baby Ariel doll.

Chris, the tech, said the sleep study can diagnose up to 600 different sleep disorders. He also said he played base in a speed metal band. I like him a lot. I like that he started by giving G a little bear with a pink shirt that Gillian named Eloise. I was thinking that his job would be great for a night owl. He said sleep studies are hard in kids (obviously-I would have a hard time sleeping with all those wires), but that the parent makes or breaks it. I wouldn't wish doing that on a child Addie's age on anyone. She would be ripping the probes out every other second.

I "slept" on the bed next to Gillian, and think she got about 7 hours of sleep, and I got about 4 or 5. Not ideal by any stretch.

Anyway, aside from a pause in the study after Chris had to wake Gillian to fix some equipment that had stopped reading (after this interruption, she was wired and had a hard time going back to sleep-FOR THREE HOURS), Gillian was an absolute rockstar. She totally earned that cheap, overpriced Ariel dress she had fixated on since seeing it at Target a few days before. He had to wake us up at 7:30, and then I got to try to wash the goop out of Gillian's hair (if any of you know Gillian, you know that she HATES washing her hair and getting water in her face and eyes, so washing it three times and scrubbing her scalp clean was like the third ring of hell for me). When she was all clean and clothed, we went out and got to look at the computer screen with all the readouts of her brain waves, and breathing, and snoring. They match up those patterns with the video surveillance to identify sleep stages and determine what is going on vs. what should be going on. It's very thorough, and as a scientist, I thought it was fascinating. Research indicates that kids who are diagnosed and subsequently have enlarged tonsils and adenoids removed have a marked improvement in sleep quality which leads to significantly improved behavior (sometimes reversing ADHD symptoms) and better daytime attentiveness, appetite, and general wellbeing.

We left the sleep center, went to Dunkin Donuts for some Munchkins (a G favorite), and then to Target to get her dress. She has worn it for three days. That and the wig...oh, WHY did I buy the wig (she has worn it daily and everywhere for going on two weeks)?

The test results will be available in 7-10 business days. Hopefully by next Wednesday. I am crossing my fingers that we get some answers, and that we can have her treated to help her get that vital sleep that affects every other aspect of her quality of life... as for me getting in the saddle with this whole thing-better late than never.