3 Weeks Post-Op

Hellooooo Eli!

This little boy amazes me. He is completely back to himself... In fact, he is better than ever! This last Sunday we attempted to start potty training again and it appears that he is finally ready!! We have only had two accidents so far. At first he cried for his diapers but we convinced him to give it a shot ... And he hasn't asked for them again. Big boy!

His throat is looking good! He is on a regular diet now. But not chips or anything sharp yet. He still has some visible stitches in his mouth. So I'm thinking no using a straw until they have all dissolved. We have weened him off of all his movie watching. It helps that it has been so nice outside.

His school conference was last night. He hasn't been to school since before his surgery and his teachers were happy to see him. He was excited to go... But once we were there he played his 'shy child' card and wouldn't talk to them. Which was too bad because we wanted them to hear him talk. His b's and p's are more often and we've even heard some d and t sounds. I can't wait for speech therapy to start up again! (First week in May.) His teacher had a good progress report of him. Things we have witnessed at home too so no surprises. He can count to 14 on his own. Knows all of his colors. Can identify maybe half of the alphabet letters ... so we will work on that some more. Knows his shapes. Can stand and hop with one foot at a time. Good stuff!

He returns to his regular routine of school and daycare next week. I'm sure he will be happy about that!

2 Weeks Post-Op . Celebrating an Aunt

Last night Eli had a small night terror. The ice pop trick helped a little, but what really calmed him down faster than usual was Jim holding him while singing the ABC's. I honestly think he over did it yesterday. We attended a family dinner and he played HARD. There were many of his cousins there and he was trying to keep up with them, but was lacking the energy. We relaxed a bit with a puzzle before bed ... but would not fall asleep until sometime after 10:00 I think it was. Then the night terror was about an hour later. THEN ... we had to wake him at 6:00 to get dressed for our day.

Today we celebrated my aunt Deiza. She passed away this last weekend in her sleep. My memories of her are of a kind woman with a sparkle in her eye. Her daughter and I have birthdays close to each other and sometimes we celebrated our birthdays together out at their home. My cousin had the coolest toys ever and I loved going over there to play!  :)  They also had a HUGE garden that we would wander around in and eat strawberries or peas while trying to avoid the South Dakota grass hoppers. Yuck! Once I was coming back into their house and a wasp or something flew up from under their steps and stung me on the stomach. My aunt mixed up some mud and put it on the sting. I think I was more upset about the mud on me than the pain! She had been very sick for many years. But even still, she surprised me by coming to Eli's toddler shower. Although I will miss her dearly, I am happy that she is no longer in pain and suffering.

Eli did well on the three and a half hour drive to Ortonville. A few times he asked if we could go home. Typical for a three-year-old. :)  He met great aunts and uncles and cousins that he had not met before. They were happy to meet him. He was happy to hide behind me. He did give a couple of hugs and high fives, but not many. The ride home was the same. He is such a good kid. He should have taken a nap, but didn't. Instead he watched another couple of movies and played with his cousin Zeke and Aunt Bekki who rode with us. (Thanks Zeke, for helping him with his snacks and the movie player!) We were 10 minutes from home when he did fall asleep. He does NOT fall asleep when there is a movie on. No matter how tired he is or no matter how many hundreds of times he has seen the show.  :)  He went to bed early and easily ... but woke up often through the night, coughing and crying. He needs some quiet days at home now. To relax and recoup.

Day 10

Eli's last dose of Oxycodone was Wednesday. Exactly a week. His last dose of Tylenol / Motrin was last night. We are so happy! He ate a peanut butter sandwich dunked in milk and this morning he ate two pancakes! We are now weening him off of movies. We played outside last night and this morning. Today we are thoroughly cleaning the house. Jim scrubbed the floors before he went to work and the windows are open! Love the fresh air in here! In about five weeks Eli can start up with speech again. Not sure about school yet though. We have his conference on the 27 with his teachers so we'll talk about it then. He is napping right now. I am in his chair listening to him breath. Still not very even... And not a peaceful sleep. But better I think. **** Happy St. Patrick's day to all of you! We thought about going to the st. Peter parade.... But he wouldn't be able to eat any of the candy anyways. Next holiday! **** aaaah! One more day like today and our homes main level (and porch) will be clean and uncluttered! NICE!

1 Week

Surgery was last week today. Jim is with Eli while I am at work and I check in occasionally to see how it's going and what they have been up to. Just for my own piece of mind. Jim is a wonderful dad! (I love saying that!) Eli is slowly being weened from his meds. Which is tough because he so clearly needs them yet. They play, watch movies, go for car rides, take out easy. I think our biggest obstacle is for him to swallow. He doesn't like to (or remember to) swallow his saliva. As a result his throat dries out and he coughs and chokes and is in pain. During the night it is worse because he has been breathing through his mouth when he sleeps, so it dries out faster. Then he wakes up suddenly, and often, crying in pain. That's got to get better as his wound heals. Another week yet? Hopefully sooner. He ate rice today! And loved it. Jim made some Mexican style rice. I loved it too!

Day 7

Doctor day. Jim and Eli are on their way up to see Dr. Wood. I am anxious to hear what they say. **** Doctor appointment went well. I am so very relieved. Doc said that as bad as Eli was feeling, he is still doing much better than most kids who have this procedure done. And that in the next couple of weeks we should be seeing some big improvements. My heart goes out to these little ones. **** Doc gave the go ahead for him to eat soft foods if he can tolerate it. He had been asking for pancakes so he and Jim stopped on their way home. But they were too hard to swallow yet and it hurt. We'll try again in a few days. **** What a beautiful day today! We grilled some burgers and had a beer on the deck. Nice! Todays spoil Eli toy was a remote control truck. He liked it! It was fun for him to cruise it all around and under the parked vehicles in the driveway. And he is talking today too. So nice to hear his sweet little voice again. We so love this little tiger!

Day 6

Today our little boy is not speaking. He doesn't want to. When he does his poor little voice is very crackly. From crying or from the swelling I don't know. No expressions either. We picked up 5 more puzzles for him today. He gave a slight smile and looked pleased about it. So maybe that will cheer him up a bit to work on those today. Crocodile Creek makes some really nice puzzles that he enjoys. **** Make that 6 new puzzles for today! Jim sent me a photo at work that showed the two puzzles I bought him were completed. And they just got home! So I stopped on my way home from work to buy him the third puzzle in the set. And then we put them together again! They really are a good distraction for him right now. He didn't say one word through the first two. His throat was an owie and we were waiting for the medicine to kick in. But by the time we were putting the third one together, he was talking a little. We even had him smiling and laughing a little tonight. That was nice to see! His little voice is so raspy! **** Tomorrow is his doctor appointment at Gillette Children's. Hopefully everything is looking good! Prayers please!

Day 5

I do believe Eli slept better last night. He had some pain before bedtime but the oxycodone kicked in and all was well. At 1:00 I had to rouse him for some Tylenol and whoever was on the cooking channel caught his attention. She was making chocolate linguini with chocolate sauce and raspberries. He was liking what he was seeing and occasionally would let out an, "mmmmm!" Or an "Oooh!" When she was done he asked for some chocolate. But either the snack pack was a huge disappointment after watching all that, or it was too thick for his throat to enjoy because he only had one bite and then he was done with it. Otherwise he slept well and didn't wake up crying or fussing between medicines. **** Jim went back to work today so it was me and Eli this morning. After some puzzles we went outside for about a half hour to play. We got out the sidewalk chalk, bubbles, remote truck, bigger trucks, and then he rode his trike in the driveway a little. What a gorgeous day! After some lunch it was nap time. Wait, no it wasn't. No nap time today I guess. He must have been tired of sleeping so much and decided he wasn't going to take one today. **** Auntie Lisa and Uncle Shultzie (Bob) came over to visit and have dinner with us. Lisa brought him a puzzle ~ which he wasted no time in putting together a few times. About dinner time we could see how tired he was, almost falling asleep sitting up in a chair, and his pain was bringing him down. He was in pain and very unhappy for a while. Breaks our hearts. There is nothing we can do but wait for the medicine to kick in and try to get him to calm back down and relax. **** He sometimes wakes up coughing because he doesn't swallow while he is sleeping. So then his throat is dry and it is harder to swallow. Sometimes a squirt of water from the syringe is enough to calm him and the coughing down quickly. At other times he starts gagging and sounds like he is choking on something. That really freaks me out. I hope when the swelling goes down and he gets used to his throat more that it will quit. **** Back to work for me tomorrow.

Day 4

Todays goal was a BM. We have been giving him prune juice and we blended some peaches for him, but nothing. Today at naptime Eli woke up with quite a tummy ache, so Jim went out to get some suppositories. Yaeee. But it worked! His medicine seems to quite on him a little before the next dose is due, so that stinks. Today we watched Dragon a couple of times. And cars 1 & 2. I tried to sneak Tangled in there, but no, that wasn't going to happen! I know it seems like we have been watching a lot of movies... But they have been a fabulous distraction. plus, we have done the same three puzzles four times today. And twice yesterday. Not just the easy peasy ones either. One is for four-year-Olds and the other 5! I love that he enjoys puzzles! May have to pick up a couple more on Monday. **** Aunt Bekki stopped over today to visit. She brought him some DQ ice cream! He was happy to see someone else's face besides ours I'm sure!

Day 3

The swelling has definitely peeked today. **** Jim and Eli slept in the living room last night. I slept upstairs to catch up on some sleep. Jim works earlies tomorrow and Sunday so then I'll be on Eli watch for the next two nights. I woke up during medicine time because I could hear them. Eli doesn't like to be woken up, plus it hurt, so he would cry. Otherwise I guess he slept okay. Jim slid the couch and loveseat together to make a nice little sleeping area. so cozy! **** He drank a nice amount of broth for us. I'm so glad. gotta keep him hydrated! We put some puzzles together and are watching How To Train Your Dragon. It is almost med time. He is starting to be uncomfortable, but he has to hold out for another half hour yet. **** After four hours of Eli napping, I had to wake him up for his next dosage of ibuprofen. What a mess. His throat was dry from sleeping and he is not used to his new throat yet anyway... So he hacked some back out. I gave him a half dose more and that stayed down. Poor tiger. He took his antibiotic well so that's good. now we are watching the Dragon movie. Yeah!! :) Jim made a healthy batch of chicken broth this afternoon so we can alternate that with the beef broth he made. Smells so good in here! **** A nurse from Gillette Children's called us tonight to check on us. We shared our concerns with her and she made some notes and gave us some ideas. (E hasn't had a BM yet since the day before surgery... Jim made him a cream and prune juice shake (Yum!), and he is showing some signs of sleep apnea... which could be due to the swelling right now.) Tonight was bath night! Then a fudgescicle! Double woo-hoooooo! We have two humidifiers set up next to the sleeping area. We are set to have a better night! ****

Home!

It was a good afternoon for Eli. He played some, put together a few puzzles, watched Cars, drank some juice, ate some pudding and soup. We were all relaxing a bit. Jim made some homemade beef broth for Eli. So good and healthy! But then as night came upon us, the pain came back too. He didn't even want to swallow his saliva because it would hurt. I would say that the swelling has peaked now. ??? It's a challenge to explain to him that even though it hurts, it's better in the long run. He needs to keep the surgery area from drying out. He is resting on the couch now. I hope he can rest easy tonight.

the next day -post surgery

He keeps his IV hand under the blankets so he doesn't have to look at it.

We are doing good. Last night wasn't so bad. I didn't get much sleep, but Eli did and that was nice. he stirred and tossed around. I kept his tubes and wires straight to make sure nothing was crimped or getting pulled. They had no-nos on his arms when he first came out of surgery which was pure torture for him. We convinced the nurses we would watch him close if we could take them off. He fights us a bit when we try to get him to drink or eat anything. I know it hurts, but he needs to if we are to come home today. We just watched Madagascar 2 again. Oh, and the heart monitor stickers just came off. That was nice for him! **** after a nice nap and a little med boost...our little boy is now more himself! He is talking, teasing and laughing. HOORAY! **** Eli get's to come home! He drank enough juice to satisfy the charge nurse. Boy, was he happy to get the IV out of his hand.

This is what has been hiding under the blankets

Helping the nurse remove the wrappings

Yeah, I can make a fist again!

Orange Band-aid!

surgery day

"this was a necessary surgery"  (part of my mantra for the next month)

Jim just carried Eli back to the OR. Surgery should take about 30 minutes according to Dr. Wood. He is such a good little boy! He smiled and said bye to me with a sly little smile as they walked over. He is a trooper! **** Doc just came in and said it went well! Eli is in recovery now and we should be able to go to him soon. **** 11:00 he finally relaxed enough to fall asleep. He was very upset and agitated. At 11:30 they brought all of us to his room. Now we are napping. Poor baby is not happy. **** we are dozey from some good meds. We have How To Train Your Dragon playing and got a couple of sips of grape juice down. Jim and I took turns going to the cafeteria for lunch. We are all doing well. The swelling will peak tomorrow. Hoping it doesn't get too bad. Everyone here is so wonderful! We are thankful to be able to have Eli doctor here. **** Eli took some liquid Tylenol which hurt going past his throat and it upset him. He is good right now again. We read some books, he ate most of a mushed up popsicle, and now Cars 2 is playing. Another recommended by Eli movie.I sense that he is getting a little antsy .... We may have to find that wagon I saw around here and take a little spin around the circle. :) **** Well, never mind the wagon ride.He had a half hour spell of being very agitated, uncomfortable, and with a tummy ache. Now he is sleeping, thank goodness! It's going to be a long night for this little fella. Jim just had quite the experience trying to order a pizza to be delivered here. Took him 45 minutes to find a place, place an order with a twelve-year-old girl who didn't seem to understand her own language (which we think is English). We're still not sure if it's going to get here or not. Hahahahaha! **** pizza showed up! It was edible. Eli kept waking up because of his stomach ache so he got a med for that. Seemed to help. He is just miserable. From his owie mouth to the IV in his hand, heart wires stuck to his chest and a pokey ankle ID bracelet ... He would love to be free of it all. We would love that for him too! But now we're Chillin and movie #3 is starting, Madagascar 2! That is if Jim can figure out the TV/DVD player. :) ****

watching a movie

Fun Family Night

It is four bells! And now begins our fun family night! We have a hotel room (near the hospital - so we don't have to wake up so early to drive to Gillette's) with a pool! So we swim, relax and have a little fun. Eli appears to be over his cold. I have a little sniffle yet ... but will be 110% tomorrow! Thank you to Kathy and Clint for taking the Griswold for a few days. He will be happy with you and your cupboard of treats. Thanks for dinner last night mom and dad! And for playing with Eli while I got some of our things together. Love you all!

**** And now we are relaxing in our beds. Had a good night. Eli really enjoys the pool. Now we are trying to convince him to go to sleep. I think he's going to fight that one. He asked for his puppy Griz a minute ago. So cute! Well- we'll post again tomorrow. Thank you for all of your kind words and love. :)

Five days until surgery

If we can get rid of these colds by then!

A pharyngeal flap is a procedure that has been around for a very long time. It is done to improve nasal speech. In this procedure, the surgeon uses the back of the throat wall to form a small ledge that closes off the extra space between the soft palate and the back of the throat, allowing the person to more easily direct the flow of air through the mouth and away from the nose during speech.

This procedure is not without its problems. The scariest problem is that is can create or exasperate sleep apnea,which could,under the worst conditions, be life threatening. Another problem is that,mediate it creates an unnatural ledge,it can lead to more throat infections. A third problem is that it can in fact create a problem of HYPO-nasal speech (sounds like you have a cold).

Lots of people have had it done with very good results. For some it doesn't work as well. Eli's doctor has performed this procedure many times. So that's a comfort. Eli is such a sweet and wonderful little boy with a lot of spunk. He is going to do good. I know God is watching this little one. But still, please keep us, especially Eli, in your thoughts and prayers.