Tuesday, October 30, 2012

What we've been up to lately

TongJie has been doing fairly well lately, in regards to recovering from his cleft palate surgery two weeks ago.  The biggest difficulties right now have been sleeping and TongJie being extra clingy.  When I say he's extra clingy, I'm not exaggerating by any means . . . he wants me to hold him almost constantly at home.  The past couple of days I've started trying to wean him off of that a little bit, with the results being major tantrums each time.  Now that it's been two weeks since his surgery, we're hoping he'll start to be more comfortable with walking around on his own again.  Interestingly, he seems more comfortable being out of my arms when we're outside or in a different place other than home.  After tonight, we will be done with the arm restraints, so we're hoping that will allow all of us to sleep better.  We're also hoping that sleeping better will help TongJie to be a little more independent at home.

He seems to be recovering well from the surgery, but we'll know more on Monday when we go back to Children's for TongJie's first post-op appointment and Dr. Hopper can look in his mouth and tell us what's really going on.  I did get a few pictures of TongJie's new palate.  First, here are the "before" pictures, taken in August.  You can see the large cleft in the roof of his mouth.



And here are pictures of his mouth one week after the surgery:

Pretty big difference, huh?

We had fun raking leaves in our backyard on Sunday.  TongJie was using a stick to "rake" along with Daddy.  Then he used the real rake for awhile.



He's still been getting lots of good use out of his wagon.  He likes to put things in it and pull it around.


TongJie loves the cats and Albert, but sometimes I think the feeling is not mutual.

TongJie has still been riding his trike inside.  Here he's signing "help" because he wants me to help him down so he can come look at the camera.



Our neighbors were so thoughtful to give TongJie a basket full of wooden toys, made by our neighbor's father who recently passed away.  She said they were going through her father's things and found these wooden cars and trucks and knew that he would have loved to know that a little boy would be enjoying them.  And TongJie LOVES these special toys - he's played with them for hours already!  And I love them, not only because they're indeed very special and well-made, but because they give my arms a break from holding TongJie!  There are two old-fashioned cars:  

A train with three cars that connect:

Two semis with removable trailers, one of which actually has a little door that opens and you can put stuff inside:


A dump truck that actually dumps:

And a tractor with a removable trailer:
I think TongJie will be getting good use out of these for years to come!

On another note, I made a freezer paper stencil for part of TongJie's Halloween costume (more on that later, when we have pictures of it to post), and used the leftover cutout pieces to make a reverse version of the stencil on a shirt.  The one on the shirt turned out pretty good.  I used white fabric paint and a large brush to dab the paint on so it would have more of a worn look, instead of uniform white.



TongJie and I (and Albert) went for a long walk this morning in the rain.  It was a great opportunity for TongJie to get some use out of his new boots from Erika.




There were so many fun things to look at.  When we walked by the nearby school, they were blowing out the irrigation lines.  TongJie thought that was pretty exciting at first, but shortly after I took the picture, he got scared and wanted me to carry him until we were past the loud air-spewing sprinklers.

He liked to touch the moss growing on a rock wall, but then he would get a really funny look on his face.  He must have thought the texture was strange or something.


Albert had fun, but I think he would have preferred to move along at a little faster pace.  When TongJie is on foot, our walks go much, much slower!

When we got home, there was a gift on our door from our friends the Parkhills.  Inside was a yummy loaf of bread (TongJie and I already sampled some of it) and some fun stickers for TongJie.  He still doesn't quite know what to do with stickers, but he had fun with these puffy ones.


And that's what we've been up to lately!

Sunday, October 21, 2012

Day 5 after surgery

I don't know if I should say this or not, but . . . I THINK we might be through the worst part and things might be looking up with TongJie's recovery from his palate surgery on Tuesday.  Friday seemed to be better, until about two hours after bedtime when TongJie woke up inconsolable, and Saturday (yesterday) was decidedly worse after that nearly sleepless night.  However, today has been better for the most part and we're hopeful that it's a trend that will continue.  I'm sure TongJie will still have his setbacks, but the pain seems to be a lot better and he's pretty much completely off the Oxycodone now (thank goodness - that stuff was really messing with him!), plus he's getting used to life with arm restraints.  I mentioned in my last post a few days ago that the mitts seemed to be more comfortable for sleeping so we were putting those on him for naps and at night.  Well, he was able to get them off so we ended up having to duct tape them to his sleeves every time, and that made him so mad that he would work himself up into a tizzy trying to pull them off.  We decided to rethink our reasoning that the mitts would be more comfortable for sleeping, and last night put him to bed in his arm restraints.  That has seemed to work better, so for now that's what we're continuing.  He's getting used to the arm restraints and, although his positions of sleeping with them don't look at all comfortable to me, he's able to sleep a lot better because he's not mad.  It's funny, because when we were at the hospital, the nurses were all really pushing for the mitts.  They said that the mitts are the new thing now because the arm restraints are so restricting.  Thankfully, we had talked to our friend Meegan, whose daughter had the same surgery a couple years ago, and she painted a much friendlier picture of the arm restraints, telling us that her daughter got used to them and it was not that big of a deal.  I'm glad that we asked for a pair of arm restraints to take home with us to try, because otherwise they would not have given them to us.  

We went to the Farmers' Market yesterday morning to get out of the house and have a little distraction.  TongJie actually got out of my arms for a few minutes and walked around, but that was short-lived.  That's why there's only one picture:

He has been doing a lot better, though, and today was willing to walk by himself for quite awhile on a walk that we took.

I took him to Lincoln Rock State Park on Friday, when he was having a pretty good day.  Last time we were there, he loved picking up the acorns that are everywhere in Loop 1, so this time I brought a container to put them into.  It was good practice for getting used to maneuvering with the arm restraints on.  And it was a beautiful day!  In the video, you can see him doing the sign for "hear" when he hears a siren.  He's pretty good about not getting frustrated when he can't do the signs exactly where they're supposed to be, and we can still tell what he's talking about.

video


After we got home, he rode his new trike (a cool yard-sale find from a friend who's an expert yard saler) in the house, still with his jacket on.  He saw the trike sitting in our carport as we were getting out of the car, and he wanted to ride it so he pointed to the trike and signed "help."  He still hasn't figured out the pedals, but it probably won't be too long and he'll have it down.


Mealtimes are still difficult, but seem to be getting better.  I'm sure TongJie's mouth still feels really weird and probably hurts when he's eating and drinking, but he's mostly frustrated because he can't feed himself.  He's been doing much better with that, probably because he's beginning to resign himself to the fact that if he wants to eat, he has to let Mom or Dad feed him.  Since he can't reach his hands to his mouth, he's been picking up the spoon or the piece of food that he wants and putting it in my hand so I can then put it into his mouth.  That seems to work well, because he still has control over which food he eats and when.  When there's not food around to be had, we sometimes take the arm restraints off and let him drink by himself.  He's getting better about drinking out of an open cup, and he's been especially fond of drinking out of those little 8-oz disposable water bottles filled with different drinks.  The information we were given says the patients should not drink out of a water bottle, but TongJie has never put the entire top of the water bottle inside his mouth like many kids tend to do - he always uses it like an open cup (the way that most adults drink out of a water bottle), and we're always watching him closely.

This evening before bedtime, we were giving TongJie a break from his arm restraints, which we're supposed to do at least three times a day but he has to be closely supervised to make sure he doesn't stick a finger or object into his mouth.  He was sitting on my lap at the table while I worked on folding a mountain of laundry, playing with a toy hamster that our friend Kayla thoughtfully gave him as a get-well gift.  TongJie was worn out from the long day, and finally laid his head down on the table to rest.  Jeff grabbed the camera and tried to take a few photos.



He went to bed with hardly a hitch tonight, and with no Oxycodone, so we'll see how the night progresses and if I can stick to my earlier words about the worst part possibly being over.  Thanks for all your thoughts and prayers!

Thursday, October 18, 2012

Recovering from surgery

Well, we made it through the surgery!  Thanks to everyone who prayed for us, and we can still use the prayers because the recovery has been difficult.  TongJie had his cleft palate repair surgery on Tuesday, as well as getting tubes in his ears.  There was actually a third little procedure that the surgeon ended up not doing: TongJie was going to get a little incision in his nose that would allow it to be more free to grow out away from his face as his face grows, rather than flatter and wider.  However, when Dr. Hopper was able to get a closer look, he realized that the tissue in that part of TongJie's nose was not really able to be operated on the way he had planned.  He said it looked like maybe when TongJie had the lip surgery in China that he had a tube placed in his nose that may have gotten infected and messed up the tissue there.  Anyway, it's not a big deal that we have to put off that procedure, because TongJie will need to have another little one done on his lip sometime anyway and they will probably be able to be done together.  The main procedure was definitely the palate repair, and that is now complete.  Basically, the gaping hole in the roof of TongJie's mouth is now closed up, or mostly closed up.  This will help immensely with his speech, as well as eating and drinking.

We left for Seattle on Monday morning and had three pre-op appointments at Children's.  We were so fortunate to be able to stay with our generous friends Doug and Erika in their guest cottage.  We've stayed there before when we had a long day of appointments in Seattle last summer, and Doug and Erika have two boys close to the age of TongJie.  We had dinner with them, which was TongJie's last meal for awhile, and the boys got to play together before bed.  They were so kind to give TongJie a "get well" gift, as well as an awesome hand-me-down pair of little boots that their boys have outgrown.  TongJie loves the boots and spent time modeling them with both his diaper and jammies on Monday night.



He had his last drink on Tuesday morning before 7:00, and then we headed back to Children's Hospital.

He got prepped for surgery, and after the "happy juice" kicked in, he wasn't scared at all!


I went back to the operating room with him until he was asleep, and then the surgery began.  It was about 3 and a half hours, and we talked with Dr. Hopper, the surgeon, when it was completed.  Normally, the patients stay in the recovery room for one to two hours after the completion of the surgery and then the parents meet up with them in their hospital room, but we got a page from the nurses that I needed to go into the recovery room because TongJie was so upset.  He was in pain, confused, and really mad.  After two hours of crying and thrashing around, along with a little bit of sleeping, TongJie and I were able to go into our regular room where Jeff was already waiting.  We were really fortunate to get a single room for the night.  Had we shared a room that night, I would have felt horrible for the family next to us!  There was a crib in TongJie's room, but it went unused because he was terrified of it, and terrified of being set down.  He wanted to be held, mostly by me, the entire time, and he would cry and scream if I even tried to sit down.  Needless to say, it was a long night with hardly any sleep.  TongJie did sleep quite a bit in short bursts, and sometimes we were able to sit down in a chair when he was sleeping.  Wednesday morning, he finally ate and drank a little, and we were very happy about that because that meant we'd be able to leave that day!  We ended up having to move to a different room before we left, but that wasn't a big deal.  One of the nurses procured a little car stroller for TongJie to use, so we got out and about a bit and that helped distract him.  He really liked the car, and he was turning the steering wheel like if he was really driving it.  Here are some pictures of TongJie after the surgery, in the car stroller, and right before we got to leave to come home.




We finally got discharged and left the hospital around 2:00 and made it home around 5:00.  Boy were we glad to be home!  We noticed an improvement in TongJie's mood almost immediately when he was back in his own house.  We all slept better last night, even though we were up every four hours to give TongJie his meds.  I slept in his room on the floor, and will continue that for the next few nights.  Today has been difficult, mostly with eating/drinking.  TongJie really wants to eat and drink, but it hurts and feels strange so he gets really frustrated and refuses.  We're worried about him getting dehydrated, but so far he seems to be doing okay.  One of the meds, the Oxycodone, is making him not feel very good, so we're going to try to start weaning him off of that one if we can and see if he feels more like eating.  All in all, he's really been a trooper so far, but I know the next few days will still be rough.  The hospital sent us home with a pair of mitts and a pair of arm restraints, to keep him from putting his hands or objects into his mouth.  The mitts are a lot more comfortable, but they make him totally unable to use his hands.  They should be good for sleeping though, when he doesn't have to use his hands anyway.  He managed to get them off last night during the night so we got worried about using them and tried the arm restraints during his nap and he had a really hard time with that.  He literally had to be laying on top of me in order to sleep.  We're trying the mitts again tonight, with tightening them up really tight and safety pinning them to the sleeves of his jammies.  So far, it seems to be working.  I don't have a picture of the mitts yet, but I do have pictures of him in the arm restraints, which seem to be more practical for during the day when he's playing and using his hands.  He hates having the arm restraints put on, which is sad, but once they're on he seems to be fine.  I think he'll get used to having them on and pretty soon it won't be a big deal.  He gets frustrated that he can't sign certain words with the restraints, but he can still sign a lot with his arms out in front, and we pretty much know what he's talking about.  TongJie had a couple of short bursts of feeling a little better, and after his nap he perked up a little when we went for a walk and then played in our backyard on the swing.  He was actually smiling quite a bit on the swing, but I wasn't able to snap any photos of that.



Eating times are the hardest, because he gets so frustrated, and we have to keep trying to get him to eat or drink and that makes him mad.  So, tomorrow we'll see what happens.  We've been told that sometimes the third day after the surgery is the worst, so we're trying to gear up for another couple of rough days.  Jeff goes back to school tomorrow, which will also make it more difficult, especially for administering meds and ear drops.  As long as we can keep TongJie hydrated and manage his pain, I think we'll be doing good.  But, like I said at the beginning, we can certainly use lots of prayers!  And thanks for reading - this was a long blog post!