here is the story from start to almost finished..... grab some coffee... its long.....
may 1st, 2012,,, we went to motts childrens hospital at 0930 in the morning for surgery. tyler was less than thrilled the instant we arrived to our pre-op bay. the volunteers tried bubbles, light up spin toys, and therapy dogs to distract him from all the pre-op procedures. nothing was really hurting him, i think he was just sensing something was about to go down,, and boy was he right. after talking with anesthesia we decided to give him a little versed to calm him down. i was initally against this, but it did turn him into a happy guy. by the time it was his turn to go in he was smiling for no apparent reason, i think derek and i could have used some of that medicine. we both fought tears handing him over to the anesthologist. we didn't speak a word until we were in the waiting area scoping out the rest of our day. he went into surgery on time at about 1030. at 1130 i recieved a call from the circulator stating he is done being prepped, vented and iv etc... and they were just starting the procedure.
we continued to recieve updates about every 1 1/2 hours from the circulator basically stating everything was going well and they were continuing to work. we got some lunch, chatted with an old rn friend who happened to be on her lunch break, and then settled into the waiting room, which is also the main lobby of the new hospital. we did a lot of people watching in our 7 hour waiting time, as you can only imagine. i am sure we looked pretty hilarious with our feet propped on the endtables, phones plugged in charging, laptop on, and magizines spread all over. other families came and went, and there derek and i sat. we did wander around a bit, saw the new indoor playground, which honestly was nothing special. we also bought some shirt that said "hail to the little victors", this was somehow comforting to us while was waited.
as we sat, i was chatting with disney world travel agents online and derek was camper shopping....... odd behaviors,,, what can we say! we have a disney trip already booked and a new camper sitting in our driveway... whatever! the mda (head anesthologist) came down to find us to update us in person. we were very thankful to see a familiar face who had been with our boy all morning. although she was coming to tell us he had some oxygen problems while on the ventilator. they had resolved with tube adjustments and incresased vent settings. i am not sure if she was trying to comfort us, or give me the details i probably wanted, but then didn't really want to hear. none the less, we were updated.
we finally saw on the tracking board he was flipped to the recovery room at about 6pm. almost exactly dr buchmans prediction. we were called to the pacu shortly after that. seeing him for the first time was shocking for both derek and i. ty was calm and sleeping, but swollen and looked miserable. i forgot to warn derek about the possiblilty of him having a small tube in his nose just to keep his airway open and about his tongue being stitiched/taped to his cheek so if it fell to the back of this throat we had a way to open his airway,, opps.... so at the sight of the stitch and the nasal trumpet i had some explaining to do.
tyler was stirring and seemed comfortable. i did hold him for a bit as he was waking up. pretty soon we were packing up to head to our 12th floor room,, our penthouse. i held tyler in the wheelchair as the two pacu nurses gathered all the equiptment to transfer him. i kind of thought portable suction, oxygen sat monitor, ambu bag, in addition to oxygen tubing and iv stuff was a little over kill for a short elevator ride. little did i know within minutes my boy would be blue and lifeless. we arrived to the 12th floor, to our room. i stood up to place him in the crib. he immediately turned blue, and all his limbs stiffened. his jaw was locked and he was no longer alert. i said to the 4 staff in the room "he's blue, we need to bag him now". i say the phrase "we need to bag him" frequently in my job, and it just flowed out of my mouth and i was in rn mode. joe, the angel from pacu, did a jaw thrust to open is airway and with a smooth movement started to bag my boy. it took just a few breaths, and he came around. he was still very calm, just laid there, but at least he was pink and breathing. joe watched him for a few minutes and decided to take tyler back to pacu so the anesthesia department could watch him better. it is pushing 9pm when we made our way back to the pacu dept. we were the only patient there, and their last of the day. we had about six pacu nurses and a crna around tylers bed for hours. tyler had several incidents of oxygen desaturations as we waited in pacu to see how he would respond to being given more time for the anesthesia to wear off. at this point he was working hard to breath and requiring constant oxygen. it was determined we would benefit from constant monitoring in picu. the mom and the nurse in me totally agreed. so then we waited in pacu while another family was moved out to the general floor and tylers room was prepared for him. all in all we were in pacu for 7 hours. 7 hours in surgery and 7 hours in pacu. what a day.
as we made our way to pacu, the residents were questioning tyler having a febrile seizure versus a obstructive/hypoxic episode. he did have a fever of 103.7, but i was having a hard time considering a seizure. the more i look back on the situation, i think that was the case. that god it was the shortest seizure i have ever witnessed. he was very sleepy and out of it for hours after, i was unable to get him awake with voice and touch. so chances are he was having a post-ictal state. anyhow, we settled into our icu room. tyler was more and more fussy, which was good and bad. he was comforted by holding. he was being given oral pain meds which we didn't see any difference in his behaviors. he was moaning with each breath and jumping every few minutes. we struggled with this until 5am. finally we tried some morphine and he settled to sleep in his crib for over an hour. this was relief for my lap, but of course everytime i shut my eyes i had visions of the events of our day. i was awaiting the rise of the sun, and a new day.
the next morning, tyler was still pretty much the same, requiring constant oxygen. the attendings and residents made their rounds and had a mini conference outside our room, just like on greys anatomy. i was invited out to the pow-wow by the resident who knew i was a nurse. mid-way thru her history and physical speel, the attending left the circle and headed for tyler. he gently talked and examined him. i followed him to the crib. he was so nice and understanding to our situation. after he was done cooing to tyler, he turned to me, put his arm around me and said "you know this happened because u are a nurse, right" ? i said "i have known that since the 33 week ultrasound". he smiled and wandered to the next room. we pretty much hung out the rest of the day. i was able to get a spot at the inhouse ronald mcdonald house. it was on the same floor as the icu. i was able to get a shower and a nap in a quiet place. derek stayed with tyler, holding him and dosing with him. finally got tyler comfortable off morphine and switched to a stronger oral medicine. he was taking juice sparingly. by 6is on may 2nd, we were able to get him off his oxygen and off the iv fluids too. he was sleeping at intervals with the pain med. derek had bought the toddler chair up to his room, so tyler was pretty content sitting in it, vibrating his little butt.
by the morning of may 3rd. tyler was completely done with this whole experience. he was hitting us, kicking, turning circles like an alligator. he managed to clap his hand and arm board in frustration to a nurse trying to get vital signs. unfortunately i knew this fistyness was my boy, my old boy. it made me smile a bit that he was becoming less passive. he was very observant about who was in and out of his room, or who was in the hallways. i am sure he was planning his escape route out of wolverine land. when the doctors rounded on thurs morning both specialities, plastics and icu teams, thought we were good to be discharged sometime in the afternoon. i agreed and began working on getting him to drink. he had only a mear ounce in him at 10 ish when the nurse recieved a call from the residents saying he could go at noonish. yay,, she didn't have to tell me twice to start packing. tyler wasn't really eating enough to leave, but i thought things would go smoother at home. besides his sisters were tugging hard at my heart, by saying how much they wanted me home. i couldn't take it much longer. by 1230 tyler had been medicated for the ride home and we loaded him up. poor daddy had to wait a few minutes to get us to the car though when we were stopped by two more rn friends who happened to be in the lobby of mott's. good to see familiar faces during our journey. also, our last picu nurse was an ida grad and her kids go to ida. i am sure we will see her around our small town at some point. what a small world, but we made connections with many people while we were hospitalized and it helped ease our pains.
first night home was interesting. to sum it up, tyler was spitting meds, barely taking drops of liquads...... but he slept for a bit in his bed, and the rest of the night in his chair with me on the couch next to him.
he turned a corner this morning. he has had a few bites of yogurt and baby food squash. he has had a few ounces of milk. he has napped, and is now exploring the house. he is very wobbly on his feet but determined to pull up to the tables and windows to see the neighbors dog. he is playing with the phone, remote and his toys. he gave me one little grin so far, and i will take it. i am happy to see him crawling and pulling to stand. he wasn't trying any of this in the hospital. i think just in the last hour as i am typing, things are looking better. he has reached for what little keys i have left on my laptop more than once, thats my boy.
despite our one little blue/seizure episode, our family has nothing bad to say about our stay at motts. we didn't have a choice in having this surgery and i think it went as good as it could. tylers cleft was very extensive and his recovery could have been worse. we were give excellent care. from the nurses, to the doctors, to the techs and support staff, that motts is run like a well oiled machine. everyone doing their part to make the complete picture. it helps to that the new facility is top notch, clean and sleek. never once did i hear any staff complain or bad mouth another dept. it was all about tyler's needs. tyler was probably the least critical patient in that icu, but it felt like we were the most important. we saw babies on vents, multiple machines, and going thru horrific times. we know we are blessed with tyler's cleft issues. they are short lived, and a lot of those families were "living" at mott's trying to save their children. special things go on in that building everyday i am sure of it, i have experienced it.
i am sure there are more details.. but at the current time, this is all i can remember, enough right??
tyler just knocked the lamp off the endtable,, my boy is back,,, got to go !!!!!
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