Decisions, decisions...
Our frustration is growing with the situation. We feel the way things are set up for radiation treatments are not in the best interest of the child patient.
Here's what seems to be happening. Kyler is woken up at 5:30 AM for his last opportunity to eat before the day gets going. He is typically not interested in food at that hour (who is, really?!?). Then starting at 6:00 AM he cannot have any food until after the treatment.
After radiation is done he says he is hungry but he needs to have some clear liquids before we start shoving steak and potatoes into his body. This is to minimize any throwing up right away. On the way home he gets a small snack and gets 'full' quickly. His sense of full has changed since his stomach has gotten smaller due to the forced fasting during the day. We have to strongly encourage him to eat. He says he is full or that he might throw up.
If things continue in this manner I imagine we will be told he has to get a feeding tube put in. This has caused us to seriously consider finding a facility whose treatment structure would be more conducive to allowing Kyler to sleep and eat in a more natural pattern (i.e. eight hours of not eating taking place while you sleep and receive treatment in the morning to allow for more opportunities to eat during the day).
I understand that pediatric anesthesiology is a very specialized field and there are only so many doctors to go around. However, it seems that the reluctance to restructure things to allow for treatment in the morning has more to do with finances that it does with what is best for the patient. It is easier to pay a surgeon one time to install a feeding tube than it is to pay for an additional pediatric anesthesiologist to come in early on a daily basis for six weeks.
Please pray that we will have wisdom on how to move forward and that we might discover what options are available.
On a positive note, Kyler has become, what we call at the Haskins house, a ‘pill pro’. He seems to have mastered the skill of swallowing pills. This is a big step for us because it makes so many of the things he needs easier to take. He is also getting better at learning how to calm himself down so he doesn’t get himself worked up to the point of gagging and throwing up. He is learning how to keep his cool and keep trying.
Please continue to pray that Kyler would be spared the typical side effects of radiation.
P.S. Kyler has the most expensive mouthwash I’ve ever seen. $45 for a bottle of some special stuff the pharmacy has to whip up in the back that is supposed to prevent some fungi or bacteria from growing in his mouth.
Here's what seems to be happening. Kyler is woken up at 5:30 AM for his last opportunity to eat before the day gets going. He is typically not interested in food at that hour (who is, really?!?). Then starting at 6:00 AM he cannot have any food until after the treatment.
After radiation is done he says he is hungry but he needs to have some clear liquids before we start shoving steak and potatoes into his body. This is to minimize any throwing up right away. On the way home he gets a small snack and gets 'full' quickly. His sense of full has changed since his stomach has gotten smaller due to the forced fasting during the day. We have to strongly encourage him to eat. He says he is full or that he might throw up.
If things continue in this manner I imagine we will be told he has to get a feeding tube put in. This has caused us to seriously consider finding a facility whose treatment structure would be more conducive to allowing Kyler to sleep and eat in a more natural pattern (i.e. eight hours of not eating taking place while you sleep and receive treatment in the morning to allow for more opportunities to eat during the day).
I understand that pediatric anesthesiology is a very specialized field and there are only so many doctors to go around. However, it seems that the reluctance to restructure things to allow for treatment in the morning has more to do with finances that it does with what is best for the patient. It is easier to pay a surgeon one time to install a feeding tube than it is to pay for an additional pediatric anesthesiologist to come in early on a daily basis for six weeks.
Please pray that we will have wisdom on how to move forward and that we might discover what options are available.
On a positive note, Kyler has become, what we call at the Haskins house, a ‘pill pro’. He seems to have mastered the skill of swallowing pills. This is a big step for us because it makes so many of the things he needs easier to take. He is also getting better at learning how to calm himself down so he doesn’t get himself worked up to the point of gagging and throwing up. He is learning how to keep his cool and keep trying.
Please continue to pray that Kyler would be spared the typical side effects of radiation.
P.S. Kyler has the most expensive mouthwash I’ve ever seen. $45 for a bottle of some special stuff the pharmacy has to whip up in the back that is supposed to prevent some fungi or bacteria from growing in his mouth.
| 9:25 PM
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