Much to the chagrin of the doctors who work with James, and think that my daughter, Hannah, should go to medical school (or, at the very least, nursing school), Hannah would rather take a class about herbs... and maybe be an herbalist.
This giveaway could help her move in that direction!
Friday, June 25, 2010
Thursday, June 3, 2010
Happy times
I think the hardest part for me this surgery (besides praying and wondering about pain management) was the fact that James was doing so great before surgery. It is not so difficult to hand your baby over to the surgeon when you know his life depends on it... and he looks like he is depending on you to help him.
It's a little different when he looks the best he has in five years... and you're sending him anyway.
I believe it won't be long until James is back up to full speed and, since pain management has not been the nightmare this time that it has been in the past, I really have no regrets. Already his little belly looks more like that of a little boy and less like that of a war-torn veteran. That is certainly something to be grateful for... and I am!
I am also grateful for some sweet time yesterday. Just about the time I was wondering if this was our day of trouble since James had gone so long without food or drink, the Big Apple Circus clowns that are permanently assigned here showed up. They occupied James for about 45 minutes and I think they had just as much fun as we did!
If you want to see MORE pictures you can go here!
It's a little different when he looks the best he has in five years... and you're sending him anyway.
I believe it won't be long until James is back up to full speed and, since pain management has not been the nightmare this time that it has been in the past, I really have no regrets. Already his little belly looks more like that of a little boy and less like that of a war-torn veteran. That is certainly something to be grateful for... and I am!
I am also grateful for some sweet time yesterday. Just about the time I was wondering if this was our day of trouble since James had gone so long without food or drink, the Big Apple Circus clowns that are permanently assigned here showed up. They occupied James for about 45 minutes and I think they had just as much fun as we did!
If you want to see MORE pictures you can go here!
Preparing for the best
Yesterday was a good day. The last day, hopefully and Lord willing, that James will ever have had an ostomy bag. Already his little belly looks so much better than it has in the last three years! Not to say we don't still have a long road of healing ahead of us.
We do.
There are lots of things to share from yesterday, but for this post, I'll stick to the surgery and what we are looking at for the next while.
After the surgery, Dr. Parker came out to let us know how things went. He was pleased, but remains cautious. His cautions have to do mostly with the fact that James had Hirschsprung's disease as a baby. Once a child has Hirschsprung's disease, any subsequent blockages or enterocolitis are automatically 'blamed' on Hirschsprung's, because they might have missed some bad sections of intestines (they remove those parts that have no nerve cells). At any rate, while we and the oncologists were assuming all along that the enterocolitis that necessitated the ileostomy was caused by James' chemo (vincristine, in particular), the surgeons were assuming there were missed sections with Hirschsprung's disease.
So... what that means is, while the surgeons are in favor of re-connecting James, they will remain only cautiously optimistic until James' colon 'proves itself' with use over the next 6-12 months.
This was not a surprise to me. But after surgery, Dr. Parker spent a good bit of time re-iterating everything that could go wrong over the next 6 months to a year and what we need to watch out for. He does believe we likely have all the bad sections of colon removed, but he can't prove it. The only way to prove it is to hook it all up and try it out.
While surgery went well, they won't call it a success for a while yet.
Now that surgery is done, we look forward to the best case of good things that need to happen.
Over the next days, we need to continue to manage James' pain. I am truly encouraged by the epidural. It blocks the pain from about the bottom of his rib cage to about an inch below his belly button. He does have some breakthrough pain and there are meds prescribed to cover the breakthrough pain. So far, James has been pretty good about telling us when it hurts. Us is limited to me and Hannah though. When other people are in the room, he either closes his eyes or puts on a brave front until they leave! Of course, if we don't know he hurts, we can't do anything to help relieve the pain. Please pray for wisdom here.
Hopefully in the next 2 to 3 days, James will have bowel sounds (or tummy rumbles), pass gas, and stool. All that will be the first steps to prove that this 'is working'. And then he can start taking clears by mouth. In the meantime, poor guy is sure licking his lips a lot! We are putting salves on his lips and he can have a swab with water to 'whet his whistle'. Zorro has been a great comfort so far. Pray it holds! And the tummy rumbles, gas and other proof come just at the right time--after things are healed enough to handle the activity.
Once he tolerates clears, we'll be watching for any bloating (a bad sign of things gone wrong) and if all is well, James will be able to eat some 'normal' food. Then we will watch again for any sign a bloating (still a bad thing) and proof that things are moving like they should.
Dr. Parker said if everything works 'best case', we should be able to go home Tuesday or Wednesday. If anything doesn't, all bets are off. I, for one, would love to home next Tuesday or Wednesday. Even more than that, I would love for everything to work 'best case' and to give God the glory for it!
We do.
There are lots of things to share from yesterday, but for this post, I'll stick to the surgery and what we are looking at for the next while.
After the surgery, Dr. Parker came out to let us know how things went. He was pleased, but remains cautious. His cautions have to do mostly with the fact that James had Hirschsprung's disease as a baby. Once a child has Hirschsprung's disease, any subsequent blockages or enterocolitis are automatically 'blamed' on Hirschsprung's, because they might have missed some bad sections of intestines (they remove those parts that have no nerve cells). At any rate, while we and the oncologists were assuming all along that the enterocolitis that necessitated the ileostomy was caused by James' chemo (vincristine, in particular), the surgeons were assuming there were missed sections with Hirschsprung's disease.
So... what that means is, while the surgeons are in favor of re-connecting James, they will remain only cautiously optimistic until James' colon 'proves itself' with use over the next 6-12 months.
This was not a surprise to me. But after surgery, Dr. Parker spent a good bit of time re-iterating everything that could go wrong over the next 6 months to a year and what we need to watch out for. He does believe we likely have all the bad sections of colon removed, but he can't prove it. The only way to prove it is to hook it all up and try it out.
While surgery went well, they won't call it a success for a while yet.
Now that surgery is done, we look forward to the best case of good things that need to happen.
Over the next days, we need to continue to manage James' pain. I am truly encouraged by the epidural. It blocks the pain from about the bottom of his rib cage to about an inch below his belly button. He does have some breakthrough pain and there are meds prescribed to cover the breakthrough pain. So far, James has been pretty good about telling us when it hurts. Us is limited to me and Hannah though. When other people are in the room, he either closes his eyes or puts on a brave front until they leave! Of course, if we don't know he hurts, we can't do anything to help relieve the pain. Please pray for wisdom here.
Hopefully in the next 2 to 3 days, James will have bowel sounds (or tummy rumbles), pass gas, and stool. All that will be the first steps to prove that this 'is working'. And then he can start taking clears by mouth. In the meantime, poor guy is sure licking his lips a lot! We are putting salves on his lips and he can have a swab with water to 'whet his whistle'. Zorro has been a great comfort so far. Pray it holds! And the tummy rumbles, gas and other proof come just at the right time--after things are healed enough to handle the activity.
Once he tolerates clears, we'll be watching for any bloating (a bad sign of things gone wrong) and if all is well, James will be able to eat some 'normal' food. Then we will watch again for any sign a bloating (still a bad thing) and proof that things are moving like they should.
Dr. Parker said if everything works 'best case', we should be able to go home Tuesday or Wednesday. If anything doesn't, all bets are off. I, for one, would love to home next Tuesday or Wednesday. Even more than that, I would love for everything to work 'best case' and to give God the glory for it!
Tuesday, June 1, 2010
Rescued!
It has been a good day. Thanks for your prayers and encouraging notes!
This morning we were able to have a 'homemade' breakfast at the Ronald McDonald house. They have an incredible kitchen set up, which gives us a lot of flexibility. What a huge blessing!
After breakfast, we headed over to the hospital. We decided to drive since we had things we would need to unload from the car. Tomorrow, I'm hoping to walk! We registered right away and visited radiology. The radiologist thought James' colon looked like it had grown some in the last several months, but the rest of his intestines 'looked pretty small'. I forgot to ask if there were any signs of blockage. Quietly I called out to the Lord, that He would rescue James and make a way for surgery... and that it would work.
Getting admitted to the hospital and getting to our room all worked pretty simply. Unfortunately, the emergency room here was very overloaded and the surgery resident and intern didn't have the order for James' bowel prep in by 6 p.m.! About 5:30 (I hadn't realized how time had passed), the nurse commented that if we didn't get the order soon, surgery might have to be moved from Wednesday! Well, that lit a fire under me and I started to make phone calls. Then I realized the surgeon's office was closed for the day! Yikes! I called the Nurse Practitioner we have worked with and left a voice mail. I started to call the answering service for the surgeon and then realized that if I answered the questions wrong, or the wrong surgeon was on call, I would get no help at all... "Oh Lord, here I am in my day of trouble! You promised if I called out to you, you would rescue me!" Just as I finished praying, my faith for this was so small, I had no idea how the Lord would work this one out. Just long enough to see my ugly doubt, and there was a knock at the door. Dr. Parker popped in... looking like he was fresh from vacation (he did just have an almost 4-day weekend!). Just in time, he got the orders in place, answered my main questions and chastised the intern and resident for not calling him and getting the orders in place. Thankfully, no harm was done to James and hopefully someone learned a valuable lesson!
Just another hour and a half of go-lytlely (they'll turn it off at midnight) and then he just needs to sleep for the night. They had hoped to be done by 9 p.m., but this gives James a little longer for drinking clears (he's eating homemade chicken broth as I type).
This afternoon, we met with one of the doctor's that run the pain team... All I can say is, "Why didn't they have a pain team for the last surgery!"... No... I'm so grateful they have come up with this idea! It's essentially an anesthesiology team that work to keep the children comfortable, especially after a painful surgery or procedure. The plan is, believe it or not, to use an epidural. The epidural enables the them to block the pain without slowing the gut. Dr. Li said that morphine will be available for breakthrough pain and that if the epidural works (there is a chance that it won't), James shouldn't need much morphine. This will allow him to get up and around. He won't be groggy and when his bowel sounds indicate he is ready, he will be able to drink and then eat. Please call upon the Lord with us and ask Him to bless this plan for His glory and James' sake.
So, tomorrow is the big day, some three years and 5 weeks after James got his ileostomy, he should get his take down.
Before then, we are hoping to get a good night's sleep. And I need to finish washing diapers!
"Call upon Me in the day of trouble. I will rescue you and you will glorify Me."
This morning we were able to have a 'homemade' breakfast at the Ronald McDonald house. They have an incredible kitchen set up, which gives us a lot of flexibility. What a huge blessing!
After breakfast, we headed over to the hospital. We decided to drive since we had things we would need to unload from the car. Tomorrow, I'm hoping to walk! We registered right away and visited radiology. The radiologist thought James' colon looked like it had grown some in the last several months, but the rest of his intestines 'looked pretty small'. I forgot to ask if there were any signs of blockage. Quietly I called out to the Lord, that He would rescue James and make a way for surgery... and that it would work.
Getting admitted to the hospital and getting to our room all worked pretty simply. Unfortunately, the emergency room here was very overloaded and the surgery resident and intern didn't have the order for James' bowel prep in by 6 p.m.! About 5:30 (I hadn't realized how time had passed), the nurse commented that if we didn't get the order soon, surgery might have to be moved from Wednesday! Well, that lit a fire under me and I started to make phone calls. Then I realized the surgeon's office was closed for the day! Yikes! I called the Nurse Practitioner we have worked with and left a voice mail. I started to call the answering service for the surgeon and then realized that if I answered the questions wrong, or the wrong surgeon was on call, I would get no help at all... "Oh Lord, here I am in my day of trouble! You promised if I called out to you, you would rescue me!" Just as I finished praying, my faith for this was so small, I had no idea how the Lord would work this one out. Just long enough to see my ugly doubt, and there was a knock at the door. Dr. Parker popped in... looking like he was fresh from vacation (he did just have an almost 4-day weekend!). Just in time, he got the orders in place, answered my main questions and chastised the intern and resident for not calling him and getting the orders in place. Thankfully, no harm was done to James and hopefully someone learned a valuable lesson!
Just another hour and a half of go-lytlely (they'll turn it off at midnight) and then he just needs to sleep for the night. They had hoped to be done by 9 p.m., but this gives James a little longer for drinking clears (he's eating homemade chicken broth as I type).
This afternoon, we met with one of the doctor's that run the pain team... All I can say is, "Why didn't they have a pain team for the last surgery!"... No... I'm so grateful they have come up with this idea! It's essentially an anesthesiology team that work to keep the children comfortable, especially after a painful surgery or procedure. The plan is, believe it or not, to use an epidural. The epidural enables the them to block the pain without slowing the gut. Dr. Li said that morphine will be available for breakthrough pain and that if the epidural works (there is a chance that it won't), James shouldn't need much morphine. This will allow him to get up and around. He won't be groggy and when his bowel sounds indicate he is ready, he will be able to drink and then eat. Please call upon the Lord with us and ask Him to bless this plan for His glory and James' sake.
So, tomorrow is the big day, some three years and 5 weeks after James got his ileostomy, he should get his take down.
Before then, we are hoping to get a good night's sleep. And I need to finish washing diapers!
"Call upon Me in the day of trouble. I will rescue you and you will glorify Me."
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