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!


  1. Prayers said. You guys are awesome!

  2. Dearest Jeff and Crystal, I am so blessed by your commitment to Jesus to care for this precious child. I have read quite a bit of your blog (even from the beginning) and have wanted to comment so many times to let you know that I and my hubby and sometimes our kids, too, have been praying for you all. Today I finally created an account so that I can let you know that our prayers are with yours. Thank you so much for sharing your story. I have been blessed to read of God's miracles here and such good writing! Jesus bless you all, for His glory!! Ingrid Ryder (friend of Melonie and Adam)

  3. Praying for you guys! Hope today went as well as possible. Pics of TongJie always brighten our day! Thanks for the update. :)

  4. Have had you three in our prayers and have been so anxious to hear how everything went. What an ordeal (for all 3!) but you guys are troopers. Thanks for the detailed description of your "adventure"--will be looking forward more!

  5. Praying for you guys! He is precious.

  6. Praying, praying & praying! What a trooper TongJie is!!! Thinking of you guys constantly!!