Tuesday, November 20, 2012

Surgery for the Buggle

The most important news is the surgery DID go really well, and Jackson was a champ with all the prep!  We got to Fairfax Surgical Center at 6:15 for his 7:30 surgery.  Graham was not allowed up on the surgery floor, so the plan was for him and Josh to wait in the waiting room while I went with Jackson.  First they took us upstairs to another waiting room.  Then, a really nice nurse came to get us and took us back to begin preparing for the surgery.  The first thing she did was give Jackson a new teddy bear--it was super cute, and he has joined ranks with Momo and Waxie Bear Doggie.  His name is Old MacDonald :)  She took his vitals and he got changed into a hospital gown and special socks.  I also got a special suit to put on so I could go in the OR with him as he was put to sleep.  From there we went into the playroom, that's right, the PLAYROOM the center has!  BRILLIANT!  The walls were painted really cute and there were some little toys and a big area with cushions to climb on or to relax on to watch TV.  
They were PACKED! They kept bringing kids and parents into this room before really any of us were taken back to surgery. It was finally our turn, and we met with another nurse before Dr. Nathan came to see us. Jackson's hives came back right around his birthday, and they were in full force this morning. That caused a little concern for the anesthesiologist, but we were finally good to go. Jackson wanted me to carry him into the OR, and as soon as we got into the room that's when he started to cry. The anesthesiologist and the nurses were perfect--they were super nice, but really efficient. They had me lay him right down and immediately started the gas for him to go to sleep. As soon as he was asleep (which took longer than usual, I was informed...), they told me to head to the waiting room.
The surgery only took about half an hour, and Dr. Nathan came out to tell me it all went well. And, that his tonsils and adenoids were indeed really large and swollen :( From there a nurse took me back to the recovery area. Let me set the scene: the shape of everything was like a semi-circle. The nurses' desk was the flat side and then there were large recliners in curtained off areas arcing along the outside. There were probably eight or nine little areas. They all faced the desk and there were a few TVs set up so the kids could watch TV as they "rested." When I came in, Jackson's gurney was already at his chair and he was NOT happy! They had me sit in the chair so they could put him on my lap. I had NO idea what to expect. The anesthesiologist had described this to me as, "...he'll be a bit silly when he comes out..." "Silly" is FAR from the truth :( He was an absolute bear....and a big one at that! He was not all the way awake right away, but he was screaming, "Let me out! Let me out!" He just kept screaming and screaming. Plus, he was kicking and wriggling all around trying to get loose from me. It was just awful. I kept talking to him and telling him I just wanted to snuggle him and hold him, and I couldn't "let him out" just yet because those were the rules. I tried to hug him and love on him the best I could. He is pretty big these days and STRONG! I ended up with a bruised nose and a little bloody lip from a couple head butts I wasn't able to avoid. The nurses were really proud of me, which helped me along for a while, but, then I just was getting tired! It was awful seeing him like this because it was SO FAR from my normal Jackson :( The nurses pumped him to the max with drugs to help him calm down, but nothing seemed to be touching him. I was the most nervous about him tearing out his IV, but they just took it out once the meds were in since they couldn't give him any more. As they took it out, we saw he had almost pulled it out anyways :/ The nurses were really encouraging, and one of them finally offered to go get Josh. I told her I would love that, but he had the baby. She acted like it was no big deal, and a few minutes later, my knight in shining armor arrived! That's when I started crying--so not helpful to anyone! Josh took over, and I know he was surprised by Jackson too! He had him in some serious wrestling holds, and Jackson wriggled right out. His strength was crazy! In the midst of this, it just felt like chaos because they do tons of kids' surgeries in the morning. They were constantly bringing someone into recovery and all of the parents were just trying to calm them all down. It was like a horror movie! 
Finally, after about half an hour of yelling, screaming, crying, kicking, wriggling and fighting, Jackson calmed down. It was such a sigh of relief to see his eyes finally focus on us (and the TV), and to just let us hold him and relax. We "rested" in recovery for 2 hours before we got to leave. He was asleep by that point and slept the whole way home. 
I felt good getting Jackson settled at home--hopefully he did too!  The reclining couches were especially nice for this whole recovery!  Jackson got snuggled up with a special pillow, his Transformers blanket, and his three friends.
It was like having two infants that first day since Jackson would be awake for a bit, take another dose of Tylenol-3, take a nap and repeat. It was a little hairy before we really got on top of the meds--Jackson was really upset and saying he couldn't breathe. We assumed he meant his throat hurt (he was breathing just fine). Graham blessed us with a four hour nap once we were home, so we ALL got some rest then! Thank goodness! We immediately had our wonderful neighbors offering food, playmates, balloons, and movies. They are wonderful, and we are so lucky :)
(This is pretty much the same picture, but with the balloons from the Bashores in the foreground!)
A little snack before bedtime.  Funny enough, Jackson really didn't eat many popsicles.  He did like ice cream.  He also didn't want much to do with frozen Gogurts, even though he likes those usually.
The first night went really well. He woke up a couple of times, but it was time for medicine anyways, so that took care of what he needed. The next day went well--he mostly vegged, but had a few bursts of energy. The third day he was more lethargic again. I tried to get him outside for a little fresh air. We walked over to Izzy and Mary's to raid their Disney movie collection. Jackson ended up passed out on the floor of the family room watching a movie--SO glad he was sleeping, but a little pathetic to look at! 
Sunday was a fussy day all around (having an infant makes it tricky to fully tend to your recovering four-year old...). Josh and I thought Jackson's voice was the sweetest thing! It was a little squeaky and raspy at the same time. But, it must have sounded weird to him, and he wasn't real big on talking. It was interesting to watch him try to communicate without talking, but sometimes he got super frustrated, and that was sad. He would get really upset which could not have helped his sore throat :( He also really just wanted Goldfish crackers to eat. Skipping crunch foods was tricky for sure. His appetite came back pretty quickly. We took all of the valves out of his cups since that put stress on his throat, and he couldn't use straws. I was kind of planning on all sorts of "special" straw drinks to help keep him hydrated. But, I think we did ok.
Right around day five, Jackson started waking up multiple times in the middle of the night! It was just awful! Sometimes, he was calmed by a dose of medicine (at this point we were still using some Tylenol-3, espcially at night), but other times it was just a guessing game of what would calm him down. He was inconsolable, but sometimes he just needed to go to the bathroom, have a drink of water, or it was something really random that took us forever to figure out. Oh, yeah, and he ONLY wanted ME! And, guess who was available to nurse Graham when he also woke up in the middle of the night? ME! To his credit, Josh tried to help, but Jackson only wanted me. I suppose I should look at it as a compliment? LOL These night wakenings continued until the two week mark, pretty much. We finally stopped the Tylenol-3 completely and moved to a combination of Motrin and Tylenol. That seemed to help, and it also seemed to help once he finished the antibiotic post-surgery. I researched online and lots of parents reported this problem at night, but no one really has a solution! OY! Some teenagers had written responses about how this really feels since none of our younger kids can really describe it. They said it feels like you have swallowed glass when you wake up in the middle of the night. I had had Jackson's humidifier running full blast the whole time, but we moved it right next to his bed, and this seemed to help. After a few nights of long, inconsolable bouts, he was placated with medicine or a snuggle. We talked to him about it too, and gave him the words to use to ask for medicine and explained that Mommy and Daddy wanted to help him, but we couldn't if he was just yelling and screaming. That did actually help!
Josh went back to work on Tuesday, which happened to be Election Day! The boys and I definitely ventured out to go vote, and we also ran a few errands. The next day was pretty busy too, so Thursday was a well-deserved down-day. We also were hoping for Jackson to go back to school on Friday! We had planned the surgery around a couple of days Jackson already had off of school. So, he was slated to go back after all the other kids had had a break too. I gave him some Tylenol right as I dropped him off and prayed he would feel ok. I got a call after a couple of hours saying he was sad and wanted me. Of course, I went right over, and he came over and hugged me, but once I told him it wasn't time for medicine, he wanted to stay and finish the morning. That was fine with me! I sat in the parking lot with Graham and read my book :) When he went back the next week, I explained to the teachers that I gave him medicine as I dropped him off, and it wouldn't be time for another dose until pick-up time. He did MUCH better--he got a little teary at snack, but they successfully distracted him. By this second week our big issue was he would get bouts of strong ear pain. We were rotating between Tylenol and Motrin pretty much around the clock. The pain seemed to strike him when he started to eat, but he was starving! He would take a little rest, and then usually finish eating. This was what I was nervous about with school though--we didn't expect them to take a break to calm him down if he got super upset! I talked to him before drop-off about being brave. I also kissed his palms and told him he could hold my kisses against his ears if they hurt. He seemed to like that ;)
 Some time in the first week of recovery, Jackson's hives came back in full force :( He was super itchy, especially during his night wakings. Our routine in the morning and the evening was: antibiotic dose, Tylenol dose, Benadryl dose, vitamins, and slathering of Aveeno all over him! The hive have subsided in their intensity, but are still around. I have NO IDEA what they are from...still....
We are now a good two weeks past the surgery, and I feel like things are finally back to normal! He has gotten up a few times still in the night, but he just needs to be tucked back in. There are no more restrictions on his diet, and we are just looking forward to our check-up next Tuesday! I'm anxious to hear how things look! As far as we can tell in Jackson's short life, he has gained Josh's and my high tolerance for pain. If he was as uncomfortable as he was letting on during his recovery, I can only imagine how much everything REALLY hurt! I felt just awful watching him go through all of this, but thankfully a few people who had already done it mentioned they regretted it right away. I was right there with them, but I do know the payoffs from this tough recovery will be big!
Here are some tips from what we learned:
If you are thinking of leaving your younger child with friends while going to the surgery, DO IT! I second-guessed myself, and didn't want to bother anyone so early in the morning, so we took Graham with us. It would have been WAY better if Josh and I both could have concentrated on Jackson and tackled the recovery situation by giving him all of our attention. 
If you are expecting or planning to have another baby, do the surgery first! Graham wasn't doing anything wrong, but Jackson's needs were much more than usual--it was quite exhausting!
At night time, write the times the medication should be given on tape/slips of paper and line the doses up. The first couple of nights, we set an alarm for the dosing times, but in the middle of the night you can never remember if you actually gave the dose or went back to sleep! 
On a related note, make a chart to keep track of the medications and the times you give them.
Use a humidifier on full-blast at night.
A heating pad on low tucked in a pillow case can be soothing to sore ears.
We took the valves out of the sippy cups, which made it easier for Jackson to drink, but also made for more of a mess. I gave Jackson a big plastic mixing bowl to keep his cups in since the large bowl sat more balanced on the couch next to him.
Really try to go with the flow and follow your child's lead. Jackson really didn't have much energy, so we spent a lot of time watching movies and resting, but when he did want to play, we did!
I tried to stick to the No Crunchy Foods rule, but for other things he wanted, I let him try them, and figured it it hurt his throat, he would tell me.
This whole experience was one of the top three hardest things I've ever done.  I am thrilled to be on the other side of it, but I don't think I'll ever forget how helpless I felt.  I couldn't do anything to help Jackson when he was so upset coming out of surgery or in the middle of the night.  And, it was frustrating to be needed by someone ALL the time!  Josh tried his best to give me a break when he got home, but it was just hard to make that happen with two little guys wanting me.  As much as I needed time to myself, I also couldn't not be there for them.  And, the age old saying comes true again: There is no harder job than parenthood.  But, the payoffs are good.  Jackson is so pleased that he is feeling better!  I just hope he could tell that we were working so hard to keep him comfortable during his recovery.
And, here is a shot of our littlest buggle on the morning of surgery :)

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