Tuesday Morning

Weilong went outside for a little while this evening. Mostly he sat on some pillows on a chair and complained because he couldn't ride his bike or anything else. But he was soon tired and had to go in. I love to see the normal facial expressions return and the attitude! He's grouchy and bored until the other kids get home from school, then he enjoys playing video games and just having them to hang out with. Sorry, Weilong, that I'm not a good playmate for you!

Today he had a bit more headache than yesterday. Tow ibuprofen and one tylenol. But no vomiting and no lortabs! He has successfully swallowed 3 of the sodium tabs today also. I think he needs 5 a day to get 1 gm of sodium. I'm not sure if he'll ever be able to take that many, but I'll keep trying.

Monday

Another Good Day! Weilong is continuing to improve. He only had two ibuprofen tablets during the day for pain, no lortabs. The salt continues to be a problem though. I got some buffered salt pills at the drugstore and gave him one, telling him it was for leg pain which he continues to have. He vomited about 5 minutes later.

But he kept one down when he took it during supper. I put lots of salt on all his food and try to get him to eat extra salt with fruit, but he gags. I'm concerned because the symptoms of not getting enough salt are fatigue and muscle cramps. He moans about being tired most of the day. He has every reason to be tired, he had 5 different surgeries in the last few weeks. But when they were testing his blood at the hospital, it was low on salt and they kept giving him those nasty pills which he rarely kept down. And I have my orders to make him eat that teaspoon a day. Now I can't wait til the next blood test to see what his sodium level is. Hopefully we can stop the salt pills.

Also he lost half a pound yesterday. I don't know how with all the eating, but he did. I suspect it has something to do with the low sodium. Salt makes the body retain water, and without enough of it he would loose water weight. So, I am on a mission to make him eat salt. Yesterday I made him french fries with lost of salt, and fried rice with tons of soy sauce. Today I am going to make the Chinese dumplings he loves to eat, dipped in soy sauce. I salt his food extra before bringing it to the table. I'm also slipping unflavored peidalite with electrolites into his drinks.

But mostly I'm thankful that his head isn't hurting very bad. He plays normally with the other kids, except he's weak and can't move around a lot. He is bored before they get home from school though!

Sunday

Weilong continued to improve today! His appetite is good, and his pain is controlled with the oral meds. I don't think he's getting enough sleep, but next week while the other kids are in school I plan to make him take a nap every day. Boy will he hate that.

I'm so thankful for the improvements. I can see the love of life returning to his little face. Don't you just love that smile?

Please continue to pray for the headaches to stop. He wakes up with a terrible one every morning. I bring him a drink and an ibuprofen to the bed, he takes it and lays there for a bit. Then I help him up to the couch and bring him his favorite breakfast burritos. If his head is still hurting after that I give him half a lortab. Today he has only taken 1 lortab and a couple of ibuprophen. But last night I had to give him a lortab about 2:30am. His sleep was more restless than it has been. Overall I am pleased with his recovery and appetite. Just a little concerned about the continuing headaches.

My snoring is not a secret any longer

Weilong told me that when the doctors and nurses would come into his room at the hospital and I would be snoring that they would stop in their tracks, turn their heads and give me the longest most amazed look (with their eyes and mouths wide). You should see him imitate them.

I'm completely humiliated. Weilong is laughing. He loves it.

A Good Day

Weilong had a good day today. He has a headache, but motrin and just a bit or the lortabs are making it bearable for him. Sometimes he is pain free for a while. I'm so thankful for those times. No crying today from pain. No vomiting.

He is able to eat and keep down regular food. I'm letting him eat anything and everything he wants. He's the boss.

He enjoyed reading the cards and opening gifts that people have sent to him. I wish I had gotten a picture of all our kids gathered around this big pile of stuff in the middle of the boys' room floor. I could hear them excitedly opening things and reading things for a long time. But I was zonked on the couch and enjoying the sound of those happy voices with my eyes closed. Such a peaceful time it was for me. I loved hearing them all talking and playing together. I haven't been home for a while and was shocked at the number of cards and gifts he had received. I would like to thank everyone personally, but am afraid the kids may have made that impossible by mixing up everything. Weilong asked me how everyone knew he was sick? And why do people in America love him and send him things? I don't think he knows how sweet he is, though I tell him all the time.

I got him into the tub and gave him a good bath tonight. I was shocked at how thin he is. I have never seen a body this emaciated. It really scares me. He looked in the mirror and said he looks like a bone. He's right. His little underwear slides down his hips. You can see every rib and really every bone in his tiny body. I am urging him to eat as much as he can five or six times each day. Trying to get him to eat nutritious foods as possible and giving him drinks that are high in nutritional suplements. I think I'll call his pediatrician Monday and see if he has any suggestions. Tomorrow I'm going to get some boost and mix it with ice cream to make him milkshakes.

Weilong is sleeping now, so I think I will too. I have several pictures I need to upload but am just too tired. I will try my best to upload them tomorrow. I feel worse now than after those long trips to China. Like jet lag or getting over the flu or something. But it is so healing to be home. Weilong needs lots of rest and good food and I am so happy he can get them now. He hated the hospital. It's so nice not to hear him crying to go home.

God is GOOD. He's watching over my boy. He's brought us through a very difficult situation. He's see us through to the end.

Finally HOME

Weilong is so glad to be home. Yesterday was wonderful. He watched some TV and played video games with his brother and sisters. He had headache, but the oral meds controlled it. He and I went to bed about 11 pm (finally) and he was still asleep when I got up at 7 this morning.

He wanted to sleep in, so I let him. Then about 7:45 he started yelling and crying and holding his head. Suddenly his head had started hurting him and woke him up. I was so anxious to help him that I promptly gave him a Lortab. After about half and hour he was asleep again, and slept for about 2 hrs.

Then he woke up and promptly vomited, which made his head hurt very bad again. I think the problem was that I gave him the Lortab on an empty stomach. So, all day he was in pain and I think he vomited 4 times. Once I got an ibuprofen to stay down for about an hour. I have tried to get him to drink all day. He got down some chicken broth about 2 and I thought it was safe to give him half a Lortab. Wrong. He vomited within 60 seconds. Up came all the broth, but no sign of the pill. I think it may have stayed down because he slept for a couple of hours after that.

He began to wake up every once in a while and I gave him sips of pedialite. He didn't like it but I threatened to take him back to the hospital if he couldn't drink a little.

Finally about 8 he woke up and was in no pain at all. He came into the living room and wanted a breakfast burrito. We were afraid it would make him sick, but he kept begging so we finally got it for him. He ate it quickly and wanted more. We made him wait half an hour and fixed him another. He ate it all and wanted more food. We said he must wait at least half an hour. He laughed and joked and teased me like normal. I got him to take another ibuprofen.

Then, just as quickly and the pain went away, it came back. Not as fierce, but enough to put him back on the sofa with his pillow and blanket. Now we're all watching the Wiggles with him, all of us. Everyone wants to be right in the room with him and we are all praying that the headache leaves again. I'm afraid to give him another Lortab though he can have one every 4 hours.

If he isn't eating and drinking normally tomorrow I will have to take him back to the hospital. He is so skinny.

What a wild roller coaster ride it has been. The doctor told me he would have headaches for the next month as his body absorbed the blood in and around his little brain. I hope they get fewer and less severe. This is no fun. But at least we're home, much better than that old hospital. God has brought him this far, he will not leave us now. He will complete the work He has started in our boy.

I'll upload the pictures I took of him eating those burritos in a little bit. He even gave me some very big smiles. They are for you, Mrs Wolff. He is sorry he was asleep when you stopped by.

We're going home

Weilong was so excited last night that he could not sleep. Honestly, it was after 12:30 before he finally turned off the tv and tried to sleep. He kept talking to me about what we would do when we got home. And he reminded me several times "I love you mom". I have missed those words from my little boy.

I cannot get him awake this morning. He's as cross as an old bear. He cries when anyone comes into our room and insists that he's sleepy and tired. I'm afraid they'll keep us here all day if he keeps this up!

They said it would take a couple of hours to process the paperwork. I'm watching the clock. But you know they have a whole handful of pills waiting for Weilong if only I can get him awake. I won't mention pills to him til after he eats a little breakfast.

We're going home. We're going home. We're going home. Thank God, We're going home.

Wed Night

We had a good day today! Weilong isn't in the best of moods, but he is eating and taking his meds orally thank God. He had salt tabs today and didn't vomit them up. It took a truly heroic effort on his part though. And he must take more in about 2 hrs, then again at 6 in the morning. He doesn't know yet, I thought I'd spare him the anxiety.

Gary brought the other kids up and we all had a meal together in the cafeteria. It was so good to just eat together. Weilong is much better when the others are here. He talks and plays with them and life seems normal again.

Then we had a wonderful surprise when we returned to our room. Weilong's best friend at school, Zach and his family came to visit. And they came bearing gifts. But the best gift of all was just seeing Zach. Weilong tells me every day that I pick him up from school that Zach is his best friend. It was hard for him this year because Joseph didn't get in his class. I'm so glad Weilong has wonderful friends like those two boys. Weilong shared a secret with Zach. He wants me to take him to school Friday or Monday and shock the whole class. It will just be a short visit, but he has been planning and dreaming of it for days. He swore Zach to secrecy. I will have to check with Mrs Wolff to see if it is ok, but I think it will be fine. I'm not sure if Weilong will return to school much this year. The neuro told me the headaches will persist for the next month, until his body has absorbed (can't remember the word he used) the blood in his little brain.

He has had pain today, but it is manageable. I hate to see him with a headache most of the day. But the doctors think it will be temporary. And I believe they are right.

So, if all goes well tonight, and I believe it will, we are headed home tomorrow. I wonder how early I can get them to release him. Hopefully before the other kids get home from school. Weilong is still saying "I wanna go home" every 5 minutes. Honestly, it's driving me insane. But it is much better than hearing him cry in pain, so I don't think I'll complain too much.

I haven't had the chance to take many pictures over the last few days. I'm utterly exhausted and Weilong is very demanding. I know it's hard to believe, but he is. But mainly it's me. I am so tired that I don't think I could stand to be here much longer. I actually feel like I have the flu. I know I don't, but every bone in my old body aches. I think I just need a few good nights of sleep. And the weekend is coming up so I think I'll get it!

I pray that Weilong gets a good sleep tonight. I just got them to give him a Lortab because his little head is hurting pretty good. If we have to take morphine, then he will not get to go home tomorrow.

Maybe my next post will be from home!

Wed Morning

Wonderful News! Weilong may get to go home tomorrow. He has a headache still, but not too bad. About a 2 on a scale of 1-10. And he keeps repeating "I want to go home".

The PA for neurosurgery came in and was pleased with how things are going. She said that WL can go home tomorrow if he doesn't vomit today and if his pain is controlled with oral meds. But the endocrinologist has the final word. Weilong's sodium (salt) level has been low and he has not been able to tolerate the salt pills.

This morning he ate 3 french toast sticks. Then he bravely swallowed 5 pills, including something for low thyroid hormone, something for upset stomach, something to keep his body from loosing salt, a mulitvitamin, and a motrin. After the nurse left he told me his stomach hurt from all that medicine. I tried my best to distract him. Please God, don't let him start vomiting again.

About an hour later the endo came in and said Weilong can go home tomorrow if he takes all his meds today and doesn't vomit. Oh, Happy Day. He said when we get home I am to give Weilong one full teaspoon of salt a day all at one time. He may eat it on tomatoes, or his favorite, Watermelon. Also he doubled the levoxyl for thyroid. I know it will be hard for a while, but Weilong can surely eat that teaspoon of salt with something.

Tuesday Night

Weilong had a great day yesterday. No pain until about 7:30 last night. He went outside in a wheelchair. He was whiny and bored and kept repeating his mantra "I want to go home". But he was in no pain.

Gary came up and stayed with him while I went home for a quick shower and to pick the other children up from school. I also picked up chicken lo mein for Weilong. We all headed back to the hospital and spent a very wonderful hour and a half as a normal family. Weilong ate and laughed and played with the others. He especially loved the watermelon that Mary brought to us. He teased Gary and insisted that Gary owed him a whole watermelon. So wonderful to see the smile and hear the precious little laugh.

Then his head started hurting and I quickly sent everyone else home. I asked for a motrin, but they only had tylenol. I told them I didn't think it would help him, but they gave it to him anyway, promising to send for motrin. An hour and a half later he was still hurting and I kept asking for the motrin. They brought two tubes of liquid motrin. Now, Weilong cannot take liquid meds, he throws up every single time even at home. The nurse was vexed at him and told him he would just have to hurt until they got time to get the motrin. I lost my temper and told her I would go to the drugstore and get the motrin myself. She could see that I was upset and quickly apologized to Weilong for talking like that to him. And they quickly got him a motrin. But by that time the pain had gotten a little out of hand. I rubbed his little head and tried to comfort him, but at 11 I had to ask for something else. They were still miffed at me and didn't speak, but brought him a morphine shot. I didn't argue, though I would have preferred a vicodin. Soon Weilong was asleep. He slept pretty well for the most part. A little restless, and angry when they would come in for vital checks and a blood draw.

I will admit that my strength is almost gone. I need some zz's in my own bed and to get away from here for a while. I'm not sure how much longer I will be able to handle this. It has been over 3 weeks now. Please pray for Weilong to get to come home soon. Gary talked with the doctors today and they say he needs to be able to take meds without vomiting, and his pain should be controlled with oral meds.

Tuesday Morning

He feels a bit better today, Thank God.

He actually has the tv on. Yesterday it was a darkened room with no sound at all. And he just complained that there is nothing good to watch on TV! He's right of course.

Last night we both got some sleep. Weilong got morphene about 10 pm, and he also vomited about 10 pm. But he was feeling a bit better because he talked with me until about 11 when we both decided we could sleep a little. He was telling me all about kindergarten last year and remembering the things they did in class. He said they could either have a snack or play on the computers. He said he loved the computers better than snacking. No wonder he's so skinny! He weighed 20.2 k when we got here and about 3 days ago it was 17.4. I tell him he must eat 5 times a day when I get him home.

So, we slept pretty good until about 3am when he needed another dose of pain meds. But that was good because all day yesterday he needed it every 3 hours. Now for the best news, he has not asked for morphine since then and that was 6 hours ago.

All yesterday he had to use the little plastic urinal in bed, but this morning he let me pick him up and stood beside the bed to use it! He was shaking, but he stood up for a few minutes. I was so happy.

I have raised the head of his bed a little bit also. Yesterday he needed it flat with his feet elevated a bit. Read up on low csf pressure headaches if you get a chance, cause that's what he had. So far the raised bed isn't making his headache any worse. He says it still hurts, but doesn't want any meds for it. The morphine gives him very bad dreams and he wants to stay awake.

I made a deal with the PA today. If they will not make Weilong take any meds orally, I will get him to drink and eat a little bit. They came in very early this morning urging him to try and take those dang salt tablets. He is so afraid he'll vomit that he doesn't even want to take a sip to drink. And they have to bring up those nasty old tablets.

Also, they are going to stop waking him so often during the night. He complains bitterly every time they come into our room.

I'm sure this is way more detail than anyone wants to know. But after the awfulness of yesterday, I just couldn't help writing the good stuff.

Counting my blessings

Weilong just fell asleep. And I need to stop a moment and think of all the good reports before the pain of today wipes me out completely.

1) The shunt is OUT. And the doctor is very positive about Weilong being able to do without it. Remember, nothing has drained out of it since last Sunday, over a week ago. And Weilong could not go home until the shunt was removed, so we're one step closer to home.

2) The headaches and vomiting are probably caused by a combination of two things. The anesthesia. He always gets sick after that. And the loss of csf from the shunt removal. The dr told us he is not surprised by the headaches and vomiting because of the csf loss.

3) God is still God and still loves Weilong. Even though I am at my very very weakest point today, HE is strong. I can take comfort from that fact.

4) I am thankful for the love and support of my friends and family.

5) His mercies are new every morning.

Now, I'm going to take a little cat nap while I listen to the soft snore of Weilong. And when he wakes up and needs me, I'll be here, ready to comfort him and pray for him. My pastor stopped by earlier and prayed for us.

Trying to recover

We had a pretty bad night. It seems that Weilong always gets sick after being sedated. And I was a bit upset that the doctor had left orders for only tylenol and motrin for his head pain. We have been in that awful cycle of vomiting and headache all night.

He cannot take meds for the headache because he vomits them back up. I have made an ass of myself again by demanding meds be given via IV so that he can keep them on his stomach. The nursing staff hates me, I can feel it. They avoid me if at all possible. Those who know me know I'm not pushy. But after hearing my boy cry, scream, kick and punch things from pain for a while, I seem to loose control and become the most demanding of mothers. I was able to get him one shot of morphine last night which allowed him to sleep for several hours. Then this morning he woke up vomiting and that gave him a headache and he vomited the motrin/tylenol. So I have been out to the nurses station every 15 minutes or so demanding to see a doctor (nurses cannot give meds without a prescription).

Finally, I got to see the PA and she prescribed anti nausea meds through the IV and morphine for pain. Hopefully we can get through this hard day and be on the road to recovery.

I am "down" today and need all the prayers I can get. Watching your child suffer like this is the worst thing imaginable.

The PA told me that they think Weilong's head pain is caused by traces of blood in his little brain. They were visible near the shunt, caused by the shunt. His little body is having to absorb them. Also, removing the shunt probably caused a little more blood to be released. She said it will just take time.

==============Later 1:30 ==============
Still vomiting and terrific headaches. They have him hooked back up to a monitor because of the morphine I think. Minutes seem to last days. But blessed naps between the vomiting episodes. Dr said Weilong lost some csf during surgery last night and that is probably what is causing the headaches and vomiting. It takes time for the body to rebuild csf. The dr was very positive. And he says the little boy who got kicked in the head by a horse is doing well. Thank God.

Please pray for my precious boy's peace of mind. He keeps saying that his head will never stop hurting and he will never go home. He desperately wants to go home. So do I. I paint word pictures of how it will be when we get home. He wants to visit Nana and YeYe and go to the beach again. I promised we would do those things. We are planning a fun summer.

Shunt has been removed

It was a very quick one this time. About 40 minutes I think. We're back in our room already. Weilong's head hurts pretty bad as you may imagine. He says he is very hungry, but we are on clear liquids for a while.

We asked about going home and the dr said WL's sodium level must be stable. He says he hopes by the end of the week we'll be home. We hope much sooner than that. Weilong has vomited the sodium pills all day long. I'm trying to get them to give it in his IV for tonight because he says he will vomit again if he tries to take pills.

Please pray for the child who had emergency surgery. His name is Cody Long and he is 2 yrs old and was kicked in the head by a horse.

more later.......

Waiting for Shunt Removal

Surgery has been delayed til 8:30 or 9:00 due to an emergency in the OR.

Weilong's head is hurting pretty bad right now. Maybe he's anxious about the upcoming procedure. Also he is hungry and thirsty having had nothing since breakfast.

So we wait.............

It's coming OUT

Weilong is waiting for them to take him to surgery and remove this nasty old shunt. They were supposed to do it at 5, but there was an emergency and the surgery room was needed. They say it will be soon.

We are praying for a complete recovery. Weilong's sodium level has been consistently too low and he is still vomiting the sodium pills. He cannot go home until it is normal. Also, he is still having headaches and feet and leg pains. But our family thinks they will go away when the shunt is out.

Of course the dr says that he may have to put it back in tomorrow, or next week, or next month. But we don't think so. Nothing has drained out of it since last Sunday, nothing. And it has been shut off since early Tuesday morning.

So, please join us in praying for a complete recovery.

I will try to post again tonight when we get back to this room. I'm not sure how long we will be in recovery, but they tell me this is a very easy, simple surgery.

Thank you all, especially CFC for all the prayers, love and support.

A few pictures

Weilong can walk slowly down the hall and go to the bathroom by himself! He played a video game today on the big tv in the family room. He likes to look at the fish. He is eating as much as he can so that he can go home soon.

He is very homesick, says he doesn't feel good, and continues to have headaches. Not the terrible ones, but headaches none the less. Please pray that these nasty headaches cease. I want my cheerful happy boy back. I miss him so bad. And I want to take him home.

Here are a few pictures taken in the last couple of days.

A little bump in the road

The neurosurgeon has decided to wait until Monday to remove the temporary shunt. He says there is a little more fluid in Weilong's ventricles than he wants to see there. He also says Weilong has been through a whole lot in the last couple of weeks and he doesn't want to rush things.

Weilong is so disappointed. He's bored, tired, and wants to go home. His head hurts just a little he says. But almost the only thing I can get him to say is I want to go home. Still very whiny. I don't blame him at all. I'd be more than whiny.

I gave him a quick sponge bath and put some normal pj's on him. They took out his IV. Then they cleaned and changed the dressing on the little shoulder port which was pretty painful for him. I had taken him for a spin in the wheelchair earlier, so I have urged him to nap a little bit right now. Then he'll have a bite of lunch and I'm sure he'll feel much better.

Gary stayed here with him last night and let me get a little sleep. For some reason I didn't rest well. I guess I was just concerned about Weilong.

My refrigerator decided to stop working. It did this about a month ago, I called a repairman and when he got there it was working fine. So I got a nice big service call charge for nothing. But this time we unplugged it, waited a while and plugged it back in. It has been over 24 hrs and it still won't run. Shannon is going to sit with him while I look at new ones.

Puppy??

Weilong has always wanted a puppy. He said he had 3 dogs and 1 cat in China. We have resisted because it is hard enough keeping the house clean now and I don't fancy having doggy doo in my floor.

Here's what Weilong did.

While waiting for surgery we watched Lady and the Tramp on the hosp tv. It brought back all Weilong's longing for a puppy. He asked me again if he could have one. I wimped out and told him he would have to ask Dad. I knew Gary would say no. Well, the little stinker waited til after the unexectedly long surgery which required 3 pints of blood. And the first thing he did was hoarsely call for Gary. "Dad, don't go yet. I have a question." Course Dad leaned in close and listened to the whispered question. "Can I please have a puppy?" My tough husband melted like a cube of ice on an August day in Texas. He said yes, if Weilong would promise to take care of the puppy and clean up after it.

Now Weilong is trying to decide what kind of puppy he wants. He wants a small dog which is nice because TX is too hot for a doggy to stay outside in the summer and I just couldn't stand a large dog inside.

Any suggestions on a small dog that is good with children are welcome. My house will never smell the same again. But my boy will be happy.

Better and Better

Weilong is much improved today, except he is still grouchy! He was awake most of the night because he slept the afternoon and evening. But he has only taken tylenol and motrin for pain in the last 30 hours. Thank God the awful headaches have passed. He has a little headache, but not the awful one that wouldn't go away. And no vomiting all day yesterday. This morning he ate breakfast by himself!

We got another CT scan at 5am. I haven't heard from the neurosurgeon yet today, but expect them to take out the temporary shunt tomorrow. Then they want to watch him for a couple of days before releasing him. This shunt is under the scalp and exits his chest so it requires surgery to remove it. That is why they need him to stay a couple of days afterwards.

Weilong and I had a disagreement this morning over his taking the salt tablets. Last night the nurse came in at midnight and I pretended to be asleep. Weilong cried, but he took the salt tablets for him. He complained the rest of the night about his tummy hurting. This morning he flatly refused to take them. He cried and whined and just drove me nuts. They tell me he can have convulsions if his salt level continues to drop. So, I insisted. He reluctantly swallowed two of the huge square tablets. I was so glad. He also had to take 4 other smaller tabs for different things. So, he was left with two salt tabs which he flatly refused to take. The nurse left the room and said she would be back in 15 minutes. Weilong chewed me out, and said he could not, would not take those two remaining pills. I was upset, so I just left the room and sat in the hallway. After about an hour the nurse talked him into taking them and I came back in here. This is a scene that is repeated every 8 hours. I wish he didn't have to take this med. I know it is awful to take and hurts his little tummy.

So, today promises to be even better than yesterday. Gary is coming up and we are going to take Weilong out for a ride in the wheelchair. Gary promised to bring Weilong some kung pao chicken and he is looking forward to it. I need to sneak home for a quick nap, shower, and clean clothes. I feel very tired today. And tomorrow will be hard because of the shunt removal surgery. But after that is over, we'll soon be home!! God has been so incredibly faithful and answered all our prayers for Weilong.

++Just learned that the salt level last night (taken at 4am) is 138. Normal is between 135 and 145. PTL