2011 Gabe's Medical Journal
U of M Cleft Clinic 2011
Orchiopexy
Pharyngeal Flap Family Fun Main Page Home Page 
Gabe's pharyngeal flap Surgery - June 8, 2011
This is not a medical journal in a scientific sense. Instead, it is a series of observations on the process. It is intended to be kind of fun and also clue people in on what goes into a day at the hospital with a 4 year old. A Pharyngeal flap is a surgery that is fairly common with children the have cleft. To dumb it way down, often times kids with cleft have shorter than normal palates. This causes them to have trouble when they make certain sounds. Gabe has been in speech therapy for some time. He has progressed very well. At this point, this procedure should help him progress even further. The surgery stretches tissue from the roof of his mouth to the back of his throat, this simulates normal palate action. . It is not uncommon for kids with cleft palate to have several surgeries over the course of their childhood. Gabe already had the initial palate repair and lip repair done when he lived in China. For more information about pharyngeal flap check out these links:
Wikipedia
Johns Hopkins

Date

Time Journal Entry
6/13/2011 Daily Summary The day went pretty well. Gabe is still resistant to taking his pain medication and it is very clear that he still needs them. Gabe and I had some alone time while Maddy went to the Parks and Rec program for 3 hours in the morning. This is the same program I went to as a kid, and the same program I taught when I was in college one summer. Lunch went well, Gabe has now progressed to very soft noodles. So Mac and Cheese is probably like a steak dinner for us. The evening was rough. The kids would not settle down. We ended up having visitors all night and a very restless sleep. Gabe was definately in pain but refused his medication, then would fall asleep. Paid for it the next morning.
6/12/2011 Daily Summary Gabe is getting better each day. It is something that we need to watch. He is great until his pain medication wears off. Then he crashes pretty quickly. He is starting to get impatient about his limited food choices. He is think it is not very fair that we get to eat regular food, while eats mush. He is right, but sometimes - you just need to follow the plan.
6/11/2011 Daily Summary Today Gabe was even more active then before. He is pretty much back to normal in many ways. He had pain issue only twice and again it was a chore to get him to take his medicine. He will for sure be out all of next week, before he can return to school. Two big reaons: 1. Giving him the right kind of food is very important. It is also very time consuming. 2. Making sure he is somewhat careful with his injury. It needs about a week in order to heal. We have an appointment on Thursday with the surgeon. That will give us a very good idea if we are on track to getting him back into his normal activities.
6/10/2011 Daily Summary At this point, the blog is pretty much to an end. I will keep it up for about a week longer, but only with daily summaries of information. Gabe did very well most of the day. It went surprisingly well having them both home alone. Gabe had liquids all day. Mashed potatoes for lunch and puddings, yogurts, ice creams, etc. He does have some pain. Our biggest problem is trying to get him to take his pain medication. The codeine aspect of the medicine has a pretty bitter after taste.
6/9/2011 19:05 Gabe is fast asleep in the car. We are heading for home.
6/9/2011 18:59 We are finally all done and leaving the parking facility. Free at last, freee at last.
6/9/2011 18:20 Finish packing up all of our things. We have one more stop to make before we can leave the hospital. Need to stop by and get his perscription for his pain medication.
6/9/2011 18:05 RN Deb comes back and removes the IV equipment from Gabe. This of course is pretty scarry for our little guy, but he gets through it. He is not happy when we try to get him dressed. He does not want to part with his hospital pajamas. Who can figure out the mind of a four year old...
6/9/2011 17:45 Maddy and Julie arrive. Gabe is doing very well. Shortley thereafter we talk to the RN Deb. We all agree that it is time to go home. We start the process.
6/9/2011 17:42 Gabe sort of eats dinner
6/9/2011 17:15 Order dinner for Gabe.
6/9/2011 17:02 Having quiet time with Mickey Mouse (of course) and a popsicle. We are now on backwards time, as the popsicle is coming before the dinner. We are going to try some soup and see how that goes. Gabe is excited that mommy is coming in just a little while.
6/9/2011 16:10 He seems to be back at it. We have visited the toy room again as well as went to the lounge with the great view of the skyline. He rides the bike and scooter like a pro. He really seems to be ready to go.
6/9/2011 15:01 The pain meds are finally administered. He does not like the aftertaste of the codeine. The hard part is that he needs the med, but the taste seems to be worse. Then if it is forced, well that start a vicious cycle. We will probably try tylenol without the codeine and see if that is effective.
6/9/2011 14:38 He is now able to get up and walk down to the play room. Shot some baskets and had a little soccer game. He really liked playing with the kids video game. Talked with Nurse Deb and we are going to get him some pain medicine.
6/9/2011 13:46 He is awake again, he is having a little pain and is not interested in getting up and walking around. Going to see nurse to find out when he gets his next pain med.
6/9/2011 12:47 He is sleeping now. He really needs the rest.
6/9/2011 12:13 He had lunch and ate a fair amount of mashed potatoes. This made him very happy. He seems very happy and does not have pain at this point.
6/9/2011 12:05 RN Debbi visited again, and we discussed getting Gabe ready for discharge. We also talked about his eating and his well-being. He is drinking and eating enough soft stuff right now. His pain seems to be much better. He also got unhooked an is down to only saline in a little portable water holder.
6/9/2011 11:15 Surgeon came for a visit. She said that everything is looking very good for Gabe. He is on track for discharge, probably after dinner early this evening. She also said she can definately hear improvement in his speech. We discussed a little bit about after hospital care. He will be on liquids or puree until Monday. After that we move into chopped stuff.
6/9/2011 09:42 Finished his Chocolate Soup breakfast. This is pudding and milk mixed. He was able to eat a whole snack pack this way. He also had some chocolate milk. I was also able to get him to have some sprite, which helps keep his mouth clear of debris. This is important to keep bacteria from getting in there. Obviously it will be a while until he can brush his teeth.
6/9/2011 09:25 First attempt at getting him to eat fails. He is still a little scared. We tried having a tea party with the little cups but that did not work. So we are trying a timer, with TV shutdown if food not eaten. This is starting to work.
6/9/2011 09:05 RnN Deb visits with Gabe. He seems to be doing well. We discuss pain management and determine that he is ready to come off of the morphine. He is no transitioning to Tylenol with oxycodone. We will see how this goes and determine if this meets his needs. This also keeps him on track for discharge this afternoon if all other things go well.
6/9/2011 08:21 Gabe walks with mommy to say goodbye. Julie is off to work. Gabe is a little sad about mommy leaving, but as is typical he recovers pretty fast.
6/9/2011 08:10 Gabe is doing better, but still in pain. Get the overnight report from Julie. Gabe vomitted a couple times overnight. He seems to be doing much better. Still a little groggy. Into Iron Man at the moment.
6/9/2011 07:59 Arrive at hospital - delay at security desk while waiting for many people to process through.
6/9/2011 07:20 Dropped off Maddy at school for before school program. Traffic is a little thick - routing through the city .
6/9/2011 06:18 Rise and shine!
6/8/2011 23:27 Last post of the night - another big day tomorrow.
6/8/2011 20:45 Get home, and get everyone settled. Story time with Maddy.
6/8/2011 20:00 After more sleeping, we wake him up so that Maddy and I can say good night. He is not happy about the separation, but decides that he wants his mama. So Maddy and I had for Home. I will get a full report in the morning and post how he did over night. Should be very informative.
6/8/2011 18:35 Gabe gets another round of morphine via IV. This will help with the pain, as he is still in discomfort. Nurse thinks that he should be able to start eating puree foods, pudding, etc. by 6:00 am tomorrow. Otherwise everything is looking good. The surgeon will be back tomorrow to inspect the wound. He could be discharged as early as late afternoon tomorrow or maybe the next day.
6/8/2011 18:32 Food arrives! Gabe is REALLY REALLY HUN-GA-RY. In fact he downs two containers of jello within 30 minutes. Kung Fu Panda seems to be taking his mind off of things for a bit. Maddy and Mom review a really cool kindergarten annual review book. Very cool. Gabe and I hold hands, eat jello and watch the show.
6/8/2011 18:15 After getting third degree about length of absence. Quickly order massive quantities of jello, apple juice and popsicles. Need to clarify a status so the food will be delivered. Julie rushes down to get food. He of course is very unhappy since Maddy is eating and he is waiting. Tough for any four year old, really tough when you have not had solid food for 24 hours plus. Poor little guy.
6/8/2011 18:10 The first complaint about this hospital, the grill was painfully slow. Also find out that jello is not sold down here. Need to hurry up and get upstairs to place an order through room service...
6/8/2011 17:55 Gabe is awake again, and now very owly. He is very hungary and wants to eat. Problem is he can only have clear liquids, jello and popsicles. Also find out that the cafe closes at 6:30, so need to hurry Maddy and myself down there to get the food.
6/8/2011 17:35 Arrive back at hospital. Gabe has been pretty quiet the whole time. He has been up a few times, but dosing most of the time. He and mommy are in the exact same position as when I left them. In fact the same video Mickey Mouse Clubhouse is still on, cycling in some kind of nightmarish infinite loop.
6/8/2011 17:00 Send out email to all the peeps letting them know about how Gabe is doing. Trying to wrap up things and get out the door. Need to unglue Maddy from TV.
6/8/2011 16:45 Post a very rough version of this journal plus update home page. Mistakes and pictures, etc. will come later. Trying to hurry.
6/8/2011 16:00 Get Maddy at the bus stop - only one more day and she will officially be a first grader. I think the young folks would say something like OMG. We rush around and get a few things for Julie, feed the dogs, get a snack, etc.. We decided earlier that soccer was out. So as soon as I get a post and email out its back to the hospital.
6/8/2011 15:20 Leave hospital to pick up Maddy from Kindergarten. Took a route with less freeway. Gonna be tight.
6/8/2011 14:51 Iron Man not working. Put in Mickey Mouse Clubhouse. This seems to do the trick. Eyes are getting heavy. Lots of blinking. Ah asleep and resting. Good for him it has been a very rough day.
6/8/2011 14:49 Gabe and Mommy curl up and cuddle while watching Iron Man 2. That in a nutshell is a boy at age 4. Eyes are getting heavy and now he will be getting somerest soon.
6/8/2011 14:44 Mommy catches up. This is a huge relief for Gabe - anxiety is dropping a bit. The effects of the pain killer (morphine) is also starting to catch up with him. His first set of vitals are on track!
6/8/2011 14:34 Gabe is out of recovery sooner than expected! Of couse because we thought we had more time, Julie had gone down to the cafe for some refreshments (yes coffee). Gabe is definitely in a lot of pain. I do not think I have seen him this uncomfortable and confused. Of course holding hands with your dad helps a little bit. The nurses did not want to wait, so we went to his room right away - mommy will catch up.
6/8/2011 14:13 Consult with the surgeon. Surgery went well. He is doing well. The doctor felt that his cleft repair in China went very well. Probably 45 minutes before we can see him.
6/8/2011 13:58 Gabe is in recovery room - Reports are his very fusy and sore.
6/8/2011 13:25 Return from lunch at Chicago Deli - waiting in the waiting room. I am doing web pages, julie is playing solitaire - very exciting...
6/8/2011 12:58 Gabe is in surgery
6/8/2011 12:35 Gabe is very brave and is brought to OR. The anesthetists were great. Went to sleep without a hitch.
6/8/2011 12:20 Consultation with the anesthetists.
6/8/2011 11:54 Consultation with our doctor who will perform the pharyngeal flap surgery. Went over after care and expected time. Likely to not eat anything for a while. One to two days in hospital. liquids and pureed foods for about 4-5 days, followed by soft foods chopped. Main concern is to avoid issues around bleeding. He will need to take it easy.
6/8/2011 11:20 Visit with Children's Life. We had the same person from last time and she was wonderful. They picked a flavor for the anesthesia. They also got to race hot wheels on the bed. A little later, we had a very special visitor who is a patient who gave Gabe a Pumba stuffed animal. Very nice!
6/8/2011 11:07 First donut request of the day. This was the first time he complained of hunger since our "popsicles" breakfast.
6/8/2011 10:30 Paged and brought to the preparation room. Gabe was very happy to see mommy, as she had just joined us after arriving from work.
6/8/2011 10:16 Waiting in the waiting room to get into our room. Gabe is really enjoying the cozy coupe truck. He also likes the mechanical globe
6/8/2011 10:15 Complete Check-in procedure for surgery. Very quick process. Helped that we pre-registered and that the medical report was faxed in advance by Gabe's pediatrician. Gabe got his wrist band, Eyore also got his wrist band. This is very important of course.
6/8/2011 10:14 Checked in at security. We got name tags with pictures on them for me. The actually used my photo from last time. I suppose it pays to be a frequent flyer.
6/8/2011 10:10 Arrive at Children's Hospital and park. Lucky and got a spot close to the door on the skyway level. Gabe is in great spirits and is excited to have his Buzz Lightyear backpack. All smiles so far.
6/8/2011 09:40 Wheels up! After the pre-requisite scurrying about, we get the van loaded and head for Children's Hospital. No issues with traffic.
6/8/2011 08:51 Last Minute Pandemonium - Without fail, it always comes down to the end. Finished up gathering all the stuff for the over-night bag. Get all of Gabe's toys and videos. Double check the paperwork. Quick shower and shave - could be a while. Quick check of sanity - yep that seems to be in tact too. Gabe is in a great mood. Mickey Mouse Clubhouse can do wonders for the soul of a four year old boy.
6/8/2011 08:50 Got Maddy off to the bus stop. Second to last day of kindergarten - wow that went by fast.
6/8/2011 08:45 Forgot Lunch - Last minute lunch for Maddy, as we forgot to pack it earlier. Must be distracted or something.
6/8/2011 08:30 Mickey Mouse Clubhouse to the rescue! Gabe has settled down now after being pretty upset about not getting breakfast.
6/8/2011 08:07 "Popsicles Breakfast" - At this point in the process Gabe is very restricted in to what he can consume. Water, Apple Juice and Popsicles are about it. So I forced him to drink a full glass of water and then we shared a popsicles, he is slowly starting to calm down.
6/8/2011 08:05 Jam and Bread Fall Out - Fixed Maddy jam and bread for breakfast. This caused Gabriel to be very unhappy. I think it finally dawned on him that he was not going to be getting food for a while. Big tears and unhappiness. At first he would not even accept the alternative - a popsicles.
6/8/2011 08:00 Shin Guard Hunt - Tearing up the house trying locate Maddy's shin guards - she has a game tonight (if she goes) and she needs to be all ready just in case.
6/8/2011 07:45 Gave Gabe a glass of water to drink. It has been so hot and dry lately that I wanted to make sure that he was properly hydrated, as we will not be given any more water for some time. He will also not get an IV fluids until his surgery.
6/8/2011 07:30 Gabe is into Jake and the Neverland Pirates. It seems to be keeping his mind of off being HUNGRY or as he says it HUNG-GA-RY.
6/8/2011 07:22 Gabe is reading the clock over and over again, wondering when we can get up. Trying to stall to keep him out of the kitchen.
6/8/2011 07:10 Almost out of my drowsy state. Trying to explain about what he can and cannot eat. Also reminding him that we are going to see the doctor today. He of course asks about shots and pokes. He seems to be ok, but has no idea what is coming.
6/8/2011 07:00 Of course - how could you not start your day off with Mickey Mouse Club House...
6/8/2011 06:55 Alarm goes of again, time to get going. The kids have migrated to our bed. Gabe is in great mood. His response the alarm - I like that song!
6/8/2011 06:15 The alarm goes off for the first time - hit snooze. Repeat (several times). Normally early is ok with me, but staying up late last night trying to fix a page issue makes me tired.