Friday, April 6, 2012
Thursday, April 5, 2012
Tomorrow!
Here is the skinny.
1. Simon will have another surgery/procedure tomorrow at 9:00 a.m. They will be looking at the drains and seeing how everything is healing and if they can pull any of the tubes out. We are hoping for two, but are expecting one. Pray for two!
2. If everything looks good with the drains, we will be coming home. COMING HOME! Day 19 and we will be coming home. Me and Simon. Together in a car. He'll breathe outside air. Gary will be sleeping at home. All of our ducks will be under one roof. We'll eat together. Gary and I will tuck everyone in their own bed--including us. Home.
*3. As an aside, Simon's tumor came into play today for the first time. They are giving him antibiotics for longer than usual because his tumor, if given the chance, could be the perfect place for an infection to set in. They want to make sure that ALL of the infection is taken care of. Since there are no other cases to be found, the doctor is treating it as best as she can with the knowledge she has. Thankfully, our Father knows exactly how Simon is knit together: He did it Himself! Though we'll be home, he'll still have two or three tubes in him and antibiotics every eight hours given by a visiting nurse. So, if you still feel led to pray for us, this would be a good cause.
1. Simon will have another surgery/procedure tomorrow at 9:00 a.m. They will be looking at the drains and seeing how everything is healing and if they can pull any of the tubes out. We are hoping for two, but are expecting one. Pray for two!
2. If everything looks good with the drains, we will be coming home. COMING HOME! Day 19 and we will be coming home. Me and Simon. Together in a car. He'll breathe outside air. Gary will be sleeping at home. All of our ducks will be under one roof. We'll eat together. Gary and I will tuck everyone in their own bed--including us. Home.
*3. As an aside, Simon's tumor came into play today for the first time. They are giving him antibiotics for longer than usual because his tumor, if given the chance, could be the perfect place for an infection to set in. They want to make sure that ALL of the infection is taken care of. Since there are no other cases to be found, the doctor is treating it as best as she can with the knowledge she has. Thankfully, our Father knows exactly how Simon is knit together: He did it Himself! Though we'll be home, he'll still have two or three tubes in him and antibiotics every eight hours given by a visiting nurse. So, if you still feel led to pray for us, this would be a good cause.
Wednesday, April 4, 2012
Ifs. . .
I'm not yelling yet. I'm not woo-hooing yet. I'm not dancing around yet. I'm not jumping and acting all crazy so my kids ask me to stop yet. Not yet. Soon though.
Right now I'm whispering. Shhh. I'd like to tell you something, but I will whisper. Do I have your ear? I'll try not to be too breathy so it tickles your ear--I can't stand that! Simon might be coming home on Friday.
There are a few "ifs", so I've been spending some time with my Father God and talking with Him about it. I've also become a little more pushy. I think that it's o.k. Parents whose kids have been in the hospital for 17 days are allowed to ask a few more questions. They are allowed to call a doctor at home when the doctor didn't come in and visit them. (Yup, we did that.) They are allowed to bring in Ben and Jerry's ice cream so that the calorie count on their son goes higher. I'm normally not so pushy (I don't think so. Gary?!? Mom?!?), but I'm a mama bear and it is time for us to return to our cave. We need a little family time. I need me some Gary time.
So here are the ifs.
1. He needs to take in more calories. Someone somehow thought that Simon had lost huge amounts of weight since he got sick. Here is the thing. He isn't a big kid. He. Is. Chinese. Do you know lots of large Chinese people? There's that one crazy basketball star, but the Chinese excel in ping pong and something called snooker (?), not basketball or football. Let's do a search of all the Chinese players in the NFL. Hmmm. Yes, Simon has lost weight. He didn't have much to lose (again, Chinese small person. . . but so stinkin cute!). We'll get it back on him. We'll give him bacon and ice cream and fried fish and we'll make him lift weights. (Nope, we won't do that.) I think he'll be o.k. in the "returning back to normal size" category.
2. He needed to switch to an antibiotic that could be given at home. There wasn't one that could be taken orally. Boo. Dr. Dahl (the infections disease doctor that I called at home last night--pushy mama remember?) thought there might be one she could switch him to that was every eight hours that would cover his infections. She decided to do this today. TODAY! Do you know what that says to me? He might be coming home! Oops, that was a little loud. I have to remember to whisper.
3. The tubes. The plan (last I heard) was to inject contrast dye into his abscesses on Thursday and see what is going on. They aren't excited about sending Simon home with three tubes coming out of his belly. I'm not excited about that either although I'd still take him home! So we are really hoping and praying and praying some more that one or two (please!!) of the tubes could come out on Thursday. We really want those abscesses to be closed!!!
I'm planning on being at the hospital both today and tomorrow. This will be really hard for my other kids: especially Penny. Boy that girl gets very upset anytime someone comes over and mom might be leaving. She also wakes up screaming every night. It isn't fun. Last night she finally fell back asleep on the floor in front of her door. This child needs her parents to be home on a more regular basis.
So, if I get news tomorrow and if it is good and if your windows are open, you might hear me laughing and shouting and clapping and jumping from the 9th floor of Helen DeVos Children's Hospital. Then I might have to get on the phone and rent a trailer or something to get all of Simon's gear home. :)
Right now I'm whispering. Shhh. I'd like to tell you something, but I will whisper. Do I have your ear? I'll try not to be too breathy so it tickles your ear--I can't stand that! Simon might be coming home on Friday.
There are a few "ifs", so I've been spending some time with my Father God and talking with Him about it. I've also become a little more pushy. I think that it's o.k. Parents whose kids have been in the hospital for 17 days are allowed to ask a few more questions. They are allowed to call a doctor at home when the doctor didn't come in and visit them. (Yup, we did that.) They are allowed to bring in Ben and Jerry's ice cream so that the calorie count on their son goes higher. I'm normally not so pushy (I don't think so. Gary?!? Mom?!?), but I'm a mama bear and it is time for us to return to our cave. We need a little family time. I need me some Gary time.
So here are the ifs.
1. He needs to take in more calories. Someone somehow thought that Simon had lost huge amounts of weight since he got sick. Here is the thing. He isn't a big kid. He. Is. Chinese. Do you know lots of large Chinese people? There's that one crazy basketball star, but the Chinese excel in ping pong and something called snooker (?), not basketball or football. Let's do a search of all the Chinese players in the NFL. Hmmm. Yes, Simon has lost weight. He didn't have much to lose (again, Chinese small person. . . but so stinkin cute!). We'll get it back on him. We'll give him bacon and ice cream and fried fish and we'll make him lift weights. (Nope, we won't do that.) I think he'll be o.k. in the "returning back to normal size" category.
2. He needed to switch to an antibiotic that could be given at home. There wasn't one that could be taken orally. Boo. Dr. Dahl (the infections disease doctor that I called at home last night--pushy mama remember?) thought there might be one she could switch him to that was every eight hours that would cover his infections. She decided to do this today. TODAY! Do you know what that says to me? He might be coming home! Oops, that was a little loud. I have to remember to whisper.
3. The tubes. The plan (last I heard) was to inject contrast dye into his abscesses on Thursday and see what is going on. They aren't excited about sending Simon home with three tubes coming out of his belly. I'm not excited about that either although I'd still take him home! So we are really hoping and praying and praying some more that one or two (please!!) of the tubes could come out on Thursday. We really want those abscesses to be closed!!!
I'm planning on being at the hospital both today and tomorrow. This will be really hard for my other kids: especially Penny. Boy that girl gets very upset anytime someone comes over and mom might be leaving. She also wakes up screaming every night. It isn't fun. Last night she finally fell back asleep on the floor in front of her door. This child needs her parents to be home on a more regular basis.
So, if I get news tomorrow and if it is good and if your windows are open, you might hear me laughing and shouting and clapping and jumping from the 9th floor of Helen DeVos Children's Hospital. Then I might have to get on the phone and rent a trailer or something to get all of Simon's gear home. :)
Tuesday, April 3, 2012
Sunny Days
Hi.
Thanks for checking in again! I woke up last night and listened to the thunder storm--a favorite. I love them. I love listening. I love feeling cozy. I feel like it is a very special message to me from God saying "I know you love storms Shanda. Enjoy it. I made it for you." Then, I got to experience it again from the 9th floor at the hospital. We were sitting in it and Simon and I enjoyed watching it storm around us.
After a down day yesterday, well, we Spricks. . . we bounced back. We are making headway and just playing a "wait and heal and gain weight" game. Gary and I took a little class tonight to learn how to handle Simon's pic line in his arm. We'll be managing it at home. Doesn't that sound great? "At home." Lovely.
This is what is holding us back. Infection and Weight. The infection is a bit of a problem as there isn't an oral antibiotic that Simon can take and the antibiotic he is on isn't conducive to be given at home. See the problem? Also, one of his doctors thinks that he needs to gain a bunch more weight. Granted he has lost a bunch of weight, but he wasn't a large boy to begin with. Right now we are pushing the calories (Why can't I have this problem!!!). I even bought Ben and Jerry's ice cream for him in an effort to gets lots of calories and fat in my boy.
Overall I'm encouraged and hopeful, although I know that things may change tomorrow. For today though. . . it was good. We may come home this week-end or we may be there another week or two. When I get discouraged about it I remember an experience that Gary had in the elevator this afternoon. He was riding with another dad and they got to chatting. Gary shared that we had been in the hospital now for 16 days. The dad nodded and acknowledged that 16 days is a long time. Then he shared that his child was in for 139.
Simon will not be in for 139 days.
Simon will come home sooner rather than later.
We will all sleep under one roof.
We have seen God's Hand through His people.
We will see more of God's Hand through His people.
When I get to heaven I can try to gain weight too.
Thanks for checking in again! I woke up last night and listened to the thunder storm--a favorite. I love them. I love listening. I love feeling cozy. I feel like it is a very special message to me from God saying "I know you love storms Shanda. Enjoy it. I made it for you." Then, I got to experience it again from the 9th floor at the hospital. We were sitting in it and Simon and I enjoyed watching it storm around us.
After a down day yesterday, well, we Spricks. . . we bounced back. We are making headway and just playing a "wait and heal and gain weight" game. Gary and I took a little class tonight to learn how to handle Simon's pic line in his arm. We'll be managing it at home. Doesn't that sound great? "At home." Lovely.
This is what is holding us back. Infection and Weight. The infection is a bit of a problem as there isn't an oral antibiotic that Simon can take and the antibiotic he is on isn't conducive to be given at home. See the problem? Also, one of his doctors thinks that he needs to gain a bunch more weight. Granted he has lost a bunch of weight, but he wasn't a large boy to begin with. Right now we are pushing the calories (Why can't I have this problem!!!). I even bought Ben and Jerry's ice cream for him in an effort to gets lots of calories and fat in my boy.
Overall I'm encouraged and hopeful, although I know that things may change tomorrow. For today though. . . it was good. We may come home this week-end or we may be there another week or two. When I get discouraged about it I remember an experience that Gary had in the elevator this afternoon. He was riding with another dad and they got to chatting. Gary shared that we had been in the hospital now for 16 days. The dad nodded and acknowledged that 16 days is a long time. Then he shared that his child was in for 139.
Simon will not be in for 139 days.
Simon will come home sooner rather than later.
We will all sleep under one roof.
We have seen God's Hand through His people.
We will see more of God's Hand through His people.
When I get to heaven I can try to gain weight too.
Monday, April 2, 2012
I love my God!
A friend sent me this devotional today. It gives voice and vocabulary to what I've been thinking and praying about. I was also blessed today to have another friend babysit last minute so that I could go to the hospital and just be with Gary. We held each other, cried together, and encouraged each other. It was also great to see Simon. He was eating, smiling and in wonderful spirits (until I bathed him and made him take a walk!). He has bounced back from this procedure better than any of the others--another reason to give thanks. Thanks. I have a long list of thank-yous that I'll be writing at some point. I've been broken--another reason to give thanks. I've had to let people into my world. I've had to let go of my pride (messy house, dirty dishes in sink, crazy/fabulous kids) and just say "thanks". Perhaps that is one of the reasons for the delay in Simon's recovery. God knew it would take awhile. We are being delivered. Hope that you enjoy and perhaps the Holy Spirit knows that you need this like I did.
God as Deliverer
I was thinking about the name of Jesus. How it means "God saves," or, "God is our deliverer, our salvation."
Which got me to thinking about the idea of God as Deliverer, as opposed to, say, the preferred idea of God as Preventer. It made me realize how much I want God to be my Preventer more than Deliverer, meaning, I want him to prevent bad things from happening in my life. Prevent means it never happens to me. Deliver means I am in deep trouble and need God to rescue me. I think we all prefer the notion of God as Preventer.
And yet, God is so much more often presented in the Bible as Deliverer. My goodness, just read the Psalms. "Arise, O Lord! Deliver me!" (3:7). "Deliver my life from the sword" (22:20). "For he will deliver the needy who cry out" (72:12). And just think about the history of God's people; it is one deliverance after another. Paul's life is as well, which causes him to say, "On him we have set our hope, that he will continue to deliver us" (2 Cor. 1:10).
Not prevent. Deliver. It is a very different view of life with God.
Now, let me be quick to say that I believe God is also our Preventer. Scripture also presents him as our shield. And we have no idea all that he has shielded us from. Which is actually my point. You don't notice God as Preventer, or shield, because you don't know what was going to happen to you since God shielded you from it. All we experience is those things where we need God to rescue us, to be our Deliverer.
I think it would be helpful to come to terms with how much we'd all prefer God to be our Preventer. Because when we hold fast to this view, we experience a lot of turmoil with all those things that don't get prevented. Why did God...how come this...did I not.... You know how this works. Notice how when he doesn't prevent bad things from happening, it often throws us for a loop. We get shaken. We go to doubt, or some sort of self-accusation and blame. It causes a lot of distress.
But when we realize God is our Deliverer, it helps us not be thrown by the fact that we sometimes find ourselves thrown into the furnace. God has not abandoned us. We have not blown it. We understand God is far more Deliverer than Preventer, and we can then cry out with confidence "O God, deliver me" and wait with hopeful expectation that he will deliver.
By John Eldredge
Good news/Bad news
It isn't great to blog when you are feeling very raw, but I'm doing it anyway. Sometimes on a journey it is good to remember the real feelings and thoughts that aren't filtered--so that I can go back and see.
Good news: The first drain tube came out. Yeah!
Bad news: They discovered another abscess and put in a new drain tube. What?!?
I'm so teary and discouraged. I know he will be fine. I know His Maker holds him in the palm of His hand. I know I know I know. But right now I have tears pouring down my face and am wondering when this is going to end? When? Pastor Dominic talked in church yesterday about expectations. Well, I had some great expectations and them blam-o--what an explosion. This means more pain for my guy. This means more hospital time. This means more antibiotics and possibly a different kind. More pokes. More surgeries. More anesthesia. More bad.
Yup--it will also allow God to show us more of His goodness and grace. Right now though, I don't feel that. I don't feel the goodness and the grace. I just feel the effects of sin that is coming through suffering at the moment. I'll get there. I promise. I know God is next to us is a very real and personal way and that later I'll see.
I'm making an unexpected trip up there in a this afternoon to just be with Gary. We need to hug and pray and cry and love on Simon together. I'm thankful for folks who will drop their afternoon plans to come here for a few hours.
Good news: The first drain tube came out. Yeah!
Bad news: They discovered another abscess and put in a new drain tube. What?!?
I'm so teary and discouraged. I know he will be fine. I know His Maker holds him in the palm of His hand. I know I know I know. But right now I have tears pouring down my face and am wondering when this is going to end? When? Pastor Dominic talked in church yesterday about expectations. Well, I had some great expectations and them blam-o--what an explosion. This means more pain for my guy. This means more hospital time. This means more antibiotics and possibly a different kind. More pokes. More surgeries. More anesthesia. More bad.
Yup--it will also allow God to show us more of His goodness and grace. Right now though, I don't feel that. I don't feel the goodness and the grace. I just feel the effects of sin that is coming through suffering at the moment. I'll get there. I promise. I know God is next to us is a very real and personal way and that later I'll see.
I'm making an unexpected trip up there in a this afternoon to just be with Gary. We need to hug and pray and cry and love on Simon together. I'm thankful for folks who will drop their afternoon plans to come here for a few hours.
Sunday, April 1, 2012
tubes anyone?
Simon had another iv put in today. He is having a procedure done tomorrow morning at 9:00 a.m. Sedation, contrast (to see what the abscesses are doing), ct scan and possible removal of one or more tubes. He doesn't like to go downstairs: scary. He's been there three times to be sedated already. So, could you please. . .
Pray for calm for Simon.
Pray that everything is looking good--healing like it is supposed to.
Pray that tubes may begin coming out!
Pray that he begins to eat more and can become self-sustaining.
Pray that both Simon and Gary get a good night of sleep.
Hopefully the next time you hear from me I'll be able to report that he has less than five tubes in him. Wouldn't that be fun?!?
Thanks a ton!
Pray for calm for Simon.
Pray that everything is looking good--healing like it is supposed to.
Pray that tubes may begin coming out!
Pray that he begins to eat more and can become self-sustaining.
Pray that both Simon and Gary get a good night of sleep.
Hopefully the next time you hear from me I'll be able to report that he has less than five tubes in him. Wouldn't that be fun?!?
Thanks a ton!
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