So we got everything thrown together quickly (yes, it often takes more than 48 hours to get everything we need to be gone for less than 24 hours). Since this was taking place in an outpatient center, we were responsible for all of his medicine, tube feeding, supplies, pump, etc in addition to packing all the usual stuff of pjs, clothes, favorite stuffed animals and blankets, as well as a few snacks and drinks. Anyway, we got it all together!
Check in was 7pm, but they don't want Eli sleeping after 3pm the day of the study. Since we knew he'd sleep on the way to Indy, he and I left about 1:30 that day and went to my sister's until it was time to head to the office. That way his nap was done in plenty of time and shouldn't affect his nighttime sleep.
We checked in before 7 and were taken to a huge room. It had a hospital bed, a couch that pulled out for me to sleep on, a tv with DVD player, and lots of room for Eli to use for showing off. And he put it all to good use. About 8, the tech came in to start attaching everything Eli was going to have to sleep with. He had three or four EKG patches on his chest, about 15 electrodes on his head, five electrodes attached near his eyes and on his cheeks, three electrodes taped to his left leg, and a sensor taped on his neck under his chin. In addition to that he had a wire that ran over his head down to his nose. Attached to that wire were two small wires that went into one nostril each. Over all that he had another tube that went into his nose and hooked over his top lip into his mouth. That was for monitoring his breathing whether it be through the nose or through the mouth. He also had a pulse ox taped to his toe (gave him his "red toe" he was used to wearing during hospitalizations). To finish off the ensemble he had two sensors individually strapped to his chest to monitor the rate and depth of his nighttime breathing. There was a video monitor over his bed and an audio monitor so the tech would not only see his vital signs, but she would also be able to see and hear him every moment of the night.
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| Looks comfy, doesn't it? If you look closely, you can see the wires going into his nose and the small tube that went over his top lip. The blue tape on his head secured all the wires and electrodes attached to his head and face. That way his nighttime movements didn't affect them much. |
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| This is from the other side of his bed. Again, you can see the tape securing all his wires. There's a box in the front of the picture, just by the pillow. That's the "brain" that all those electrodes fed into. A blanket was kept over it so Eli wouldn't be tempted to fidget with it. There were more monitors to the left of his bed that had different readings on them as he slept. Most of them were quiet and we didn't really notice those through the night. |
I was worried that he would have trouble falling asleep in a strange place, especially after all the equipment was hooked up to him, but he did well. He fussed a lot as the wires and electrodes were being attached, but once they were on he just snuggled on my lap and went to sleep watching a movie. He woke about 3:30am and went back to sleep once I weaseled my nearly six-foot pregnant self into his narrow hospital bed with him and his equipment so we could snuggle. The real challenge was getting OUT of the bed without falling. I asked the tech in the morning if she saw me and she said they did (three techs in the monitor room) and they were impressed. He woke up again about 4:20 but quickly went back to sleep with the same snuggling. Again, I weaseled out and back onto my couch. I had just fallen asleep when the tech came in at 5:10 to unhook him and release us. We had been told he'd be out between 5 and 6 in the morning. It took about an hour to get him unhooked, cleaned up from all the sticky residue, dressed, and pack all our stuff. He asked for doughnuts so we stopped at Dunkin' Donuts and at McDonald's before heading home. He slept most the way home and woke as we pulled into our driveway at 9am.
We had been told it would be about a week before getting the results. On Thursday we had a call from the ENT nurse practitioner, Jenni. She said there's no doubt Eli needs his tonsils and adenoids removed. His sleep study came back showing severe sleep apnea. Eli's normal oxygen saturation range is 88-92%. During episodes of sleep apnea his sats dropped to the upper 70s. The whole night he was sleeping, he never got into a deep sleep. They're actually surprised he doesn't wake up more through the night than he currently does. Our only guess for that is because he is a heart kiddo, he gets whatever rest he can. Even with his severe sleep apnea, we don't see him not breathing through the night. Jenni said she's not surprised that we can't see it. His body has compensated for a variety of things over his short life and this is just another thing it's covering for.
Sleep apnea is very hard on the body, especially the heart and lungs. It puts a lot of stress on those organs and Eli's are already very stressed. We also think this may help his daytime activity. Most of us will be very tired and slow the day after a night of little or bad sleep. Kids react differently. They often do the opposite, meaning they are hyper or very, very active through the day. That describes Eli perfectly. He's a very busy boy who doesn't have much attention span, is constantly on the move, and doesn't listen to mommy or daddy like we'd hope. We've had several explanations for this behavior including he may have some chemical imbalance in his brain due to his strokes, he could have Attention Deficit Disorder, or it could be that he's a busy four year old boy. Also, he has said some things lately that confirms to me he has some memory of being in his hospital bed after his strokes and not being able to move. Maybe he's making up for lost time! And maybe none of his behavior is related to his poor sleep, but regardless he needs this done so his heart and lungs don't have to work harder than they already have to.
So the plan is to take him to the OR to place tubes in his ears, culture the fluid trapped in his ears that will be released with the tubes, and remove his tonsils and adenoids. Surgery is set for Thursday February 26. We don't have a time yet, as they are trying to work him in. We'll find out more details the week before surgery.
What we do know is that even though a tonsillectomy and tube placement is fairly routine, Eli will not be coming home that night. Often kids do, but any child (forget Eli's special heart and other issues) whose sleep study comes back with the severe results Eli's did will have to spend the night. Jenni said it's sometimes on the regular unit and sometimes it's in the PICU. She cannot imagine a scenario where Eli would not be in the PICU. When she said that, I told her she hadn't said anything that frightened me yet! These kids with severe sleep apnea need their tonsils out, but the initial post op period can be tough. They often have trouble controlling their oxygen saturations so that would be especially concerning for Eli. He could possibly come home the next day if his sats are continually within his normal range and if he's swallowing well. However, she cautioned us that he could be there for two or three days. Again, that's not any information we didn't expect!
Eli's surgery will be up in Indy at Peyton Manning Children's Hospital where all his other surgeries have been. We know he'll have a pediatric cardiac anesthesiologist for the surgery and we've been asked to give a couple choices of who we want. Of course we're nervous for yet another surgery (because nothing is ever simple with any heart kid, especially with Eli's complex issues, strokes, and history of staph) but we know it's for the best for him. He snores like no child should and the results of this study are alarming. He needs this.
We'll update with more information as it falls into place. Thanks for the continued prayers and support!
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