Dec 25, 2013
We got moved again in the hospital. Now we are in the largest isolation room in the hospital. It has two sinks, it's own toilet, a shower, XBOX, and tons of room. The view overlooks the intersection of MLK Drive and 52nd Street. There is also lots of storage. I guess you get the nicest place in the hospital the longer you stay here.
The doctor got a hold of the surgeon. It turns out he will be in on Dec 27 and maybe even Dec. 26. Depending on the surgeon's recommendation, we could either be discharged Dec 27 or we could be here another 2 weeks. If he wants Rokus to return for surgery at the end of January, we would leave now then do the G. Tube placement and bowel reconstruction together. If he prefers G. Tube placement separately, Rokus could go into another surgery as soon as Friday, then we are here another 5-7 days before Rokie gets released.
The GI specialist feels comfortable sending Rokus home even with his current weight and mildly low albumin levels. The netrologist feels comfortable with him going home as long as we have consistent lab results even if they are slightly outside the target ranges. The hospitalist pediatrician is still not comfortable with weight and albumin though. Then, we are waiting on the surgeon's opinion regarding surgery.
In summary,
1. We will always deal with renal failure and will likely require continuous blood pressure medicine.
2. His bowel reconstruction depends on the surgeon.
3. His esophagus is restricted and the GI team and surgeon need to work together.
Thursday, December 26, 2013
Dec 14-Dec 24
24 Dec 2013
The hospitalist pediatrician told us his concerns with Rokus are his albumin levels being low which are a good indicator of his overall health. The albumin is protein. Usually a sick child has low albumin. These low levels have only been recent so the staff is trying to figure out why. The other concern is Rokie's weight. He is underweight for his age. The doctor wants his weight to increase before is ready for discharge. Another concern is Rokus' esophagus. He has a constricted esophagus so he can't eat solids. This stricture doesn't allow him to get his nutrition orally and it continues to constrict if we don't dilate it. The doctors were unable to dilate it last time they tried so they want to put a G tube into his belly. Well, the difficulty now is the surgeon is on vacation and not available to assess Rokus. I told the doctors I want his opinion before a G tube placement. If he does surgery I want it timed with the initial bowel reconstruction surgery to limit the overall number of surgeries. This requires the surgeons opinion and since he is unavailable, we are at a crossroads indefinitely. Who knew nutrition and other fairly minor things would be so important?
20 Dec 2013
On Wednesday this past week, I learned that Rokus has a constricted esophagus. The medical staff wanted to figure out why he was unable to keep foods down so they explored his throat with a camera when they found the stricture in the esophagus. The stricture is approximately 3 cm long and the inside diameter of the esophagus is constricted down to about 2.5 mm, which is incredibly small. At the same time, while Rokus was anesthetized, the doctors investigated his bowels through his stoma and his rectum. Turns out, it appears he has very little scarring on his bowels which may be very very good for surgery. Perhaps it won't take too long to get his bowels reconnected instead of waiting a full year.
So, to deal with the stricture in Rokus' esophagus, the doctor tried to expand the throat by inserting a balloon-like devise and pumping it up. The problem was his throat was too small at the stricture and the balloon could not fit. This means they will soon need to install a gastic tube (G. tube) from the outside of the belly directly into the stomach. This will allow the doctors to attempt to insert the "balloon" tool from the stomach up the esophagus to the bottom of the stricture. Perhaps that will allow them the room to treat his esophagus.
The other things the doctors are working on are his fluids. He currently takes some medications, receives saline bolises through an IV and receives formula through a feeding tube. Over the course of today and tomorrow the doctors are removing the IV fluids from his treatments. If he responds well to the removal of fluids then we might be able to remove his IV line in his arm. If he gets rid of the IV line then some medical staff people want to send Rokus home. WOAH?!?!?! Home??? Crazy, right?! That is exciting but a bit nerve racking at the same time.
There are so many things to be ready for when thinking about bringing Rokus home. In order to receive immediate gastro-intestinal care we might be able to only drive as far as Santa Barbara instead of Oakland. We can probably draw weekly labs from Bravo Pediatrics in SLO. The OT & PT can be taken care of in SLO as well. There is also a home in Hayward called George Mark Children's Home. They provide temporary transition homes that allow families the opportunity to live as a family, take care of their child while there, and they have volunteer nurses 24/7 who can help out if you just need some support. It is not like the hospital where a nurse wakes you up every hour or being limited with personal time. At George Mark your family comes and goes as they please. You just get the opportunity to learn what it's like to care for your child at home without all the stress. We hope we will be eligible for it.
So, in summary, Rokus will continue to have an ostomy bag, will get a G. tube into his stomach from outside the belly, will receive treatments on his esophagus every other week, will need weekly labs for his vitals, electrolytes, and kidneys, and his bowels need to be reconnected at some point. All in due time. We will find out over the course of next week if he will actually go home.
14 Dec 2013
I got up to Oakland late Friday night, and during the night the nurse and I had to change his ostomy bag twice because it just did not want to stay on. Poor little guy just wanted to sleep and it just isn't easy sleeping in a large stinky mess of wet stool.
We are trying to figure out how to get him off IV support and we also are trying to thicken his stool. This will allow him to get off the IV and take medicines and formula orally. We also need him to keep trying to eat food so he can avoid any type of food aversion. Right now 80% of what he eats is immediately regurgitated. He did really well with a rice crispy treat bar. All fruit keeps coming back up but he continues to give eating a strong effort.
Rokus is really smart and understand a ton. He is starting to speak more. Today he said very clearly, "I want my Mama."
The hospitalist pediatrician told us his concerns with Rokus are his albumin levels being low which are a good indicator of his overall health. The albumin is protein. Usually a sick child has low albumin. These low levels have only been recent so the staff is trying to figure out why. The other concern is Rokie's weight. He is underweight for his age. The doctor wants his weight to increase before is ready for discharge. Another concern is Rokus' esophagus. He has a constricted esophagus so he can't eat solids. This stricture doesn't allow him to get his nutrition orally and it continues to constrict if we don't dilate it. The doctors were unable to dilate it last time they tried so they want to put a G tube into his belly. Well, the difficulty now is the surgeon is on vacation and not available to assess Rokus. I told the doctors I want his opinion before a G tube placement. If he does surgery I want it timed with the initial bowel reconstruction surgery to limit the overall number of surgeries. This requires the surgeons opinion and since he is unavailable, we are at a crossroads indefinitely. Who knew nutrition and other fairly minor things would be so important?
20 Dec 2013
On Wednesday this past week, I learned that Rokus has a constricted esophagus. The medical staff wanted to figure out why he was unable to keep foods down so they explored his throat with a camera when they found the stricture in the esophagus. The stricture is approximately 3 cm long and the inside diameter of the esophagus is constricted down to about 2.5 mm, which is incredibly small. At the same time, while Rokus was anesthetized, the doctors investigated his bowels through his stoma and his rectum. Turns out, it appears he has very little scarring on his bowels which may be very very good for surgery. Perhaps it won't take too long to get his bowels reconnected instead of waiting a full year.
So, to deal with the stricture in Rokus' esophagus, the doctor tried to expand the throat by inserting a balloon-like devise and pumping it up. The problem was his throat was too small at the stricture and the balloon could not fit. This means they will soon need to install a gastic tube (G. tube) from the outside of the belly directly into the stomach. This will allow the doctors to attempt to insert the "balloon" tool from the stomach up the esophagus to the bottom of the stricture. Perhaps that will allow them the room to treat his esophagus.
The other things the doctors are working on are his fluids. He currently takes some medications, receives saline bolises through an IV and receives formula through a feeding tube. Over the course of today and tomorrow the doctors are removing the IV fluids from his treatments. If he responds well to the removal of fluids then we might be able to remove his IV line in his arm. If he gets rid of the IV line then some medical staff people want to send Rokus home. WOAH?!?!?! Home??? Crazy, right?! That is exciting but a bit nerve racking at the same time.
There are so many things to be ready for when thinking about bringing Rokus home. In order to receive immediate gastro-intestinal care we might be able to only drive as far as Santa Barbara instead of Oakland. We can probably draw weekly labs from Bravo Pediatrics in SLO. The OT & PT can be taken care of in SLO as well. There is also a home in Hayward called George Mark Children's Home. They provide temporary transition homes that allow families the opportunity to live as a family, take care of their child while there, and they have volunteer nurses 24/7 who can help out if you just need some support. It is not like the hospital where a nurse wakes you up every hour or being limited with personal time. At George Mark your family comes and goes as they please. You just get the opportunity to learn what it's like to care for your child at home without all the stress. We hope we will be eligible for it.
So, in summary, Rokus will continue to have an ostomy bag, will get a G. tube into his stomach from outside the belly, will receive treatments on his esophagus every other week, will need weekly labs for his vitals, electrolytes, and kidneys, and his bowels need to be reconnected at some point. All in due time. We will find out over the course of next week if he will actually go home.
14 Dec 2013
I got up to Oakland late Friday night, and during the night the nurse and I had to change his ostomy bag twice because it just did not want to stay on. Poor little guy just wanted to sleep and it just isn't easy sleeping in a large stinky mess of wet stool.
We are trying to figure out how to get him off IV support and we also are trying to thicken his stool. This will allow him to get off the IV and take medicines and formula orally. We also need him to keep trying to eat food so he can avoid any type of food aversion. Right now 80% of what he eats is immediately regurgitated. He did really well with a rice crispy treat bar. All fruit keeps coming back up but he continues to give eating a strong effort.
Rokus is really smart and understand a ton. He is starting to speak more. Today he said very clearly, "I want my Mama."
Friday, December 20, 2013
New Pictures
I added lots of pictures and a few videos from the last few months. Just click on the tab above labeled Pictures of Rokus.
Thursday, December 12, 2013
December 9-11
December 11, 2013
Rokus moved rooms today! He is no longer in the ICU. It is good and bad. Good that the doctors believe he's healthy enough to move on but bad that we get a lot less care. It is one nurse for four patients as opposed to one-on-one in the ICU. I am happy that he is getting better though.
Rokie's ostomy bag continues to fall off regularly and barely lasts four hours. The hospital staff does not seem to have any solutions after a few weeks now so I am taking it upon myself to figure it out.
December 10, 2013
Rokie's ostomy bag keeps falling off and it is really problematic. If it continues to do so then I don't see how we can go home. I hope we can figure something out.
December 9, 2013
Rokus is doing so much better. The nurses are giving us more breaks, coming to visit Rokus, and just see our miracle child. So many nurses and doctors are really surprised at how well he is doing. Unfortunately though, his kidneys and bowels are still not healing. They both want the opposite treatment. The kidneys want lots of fluids through the GI tract and the bowels want very little. Rokus is also learning how to eat again. He seems to vomit everything he eats but at least he has the desire for food.
Since I visit him on the weekends, all the fun places at the hospital are closed so Rokie and I make up our fun activities. He loves riding in his wheelchair. He always asks for walks so he can leave his bead and return to a "normal" life again. I took him down to the cafeteria and there we kicked around a ball and I made him chase it to develop his muscles. Everyday he gets stronger and gains balance.
Rokus moved rooms today! He is no longer in the ICU. It is good and bad. Good that the doctors believe he's healthy enough to move on but bad that we get a lot less care. It is one nurse for four patients as opposed to one-on-one in the ICU. I am happy that he is getting better though.
Rokie's ostomy bag continues to fall off regularly and barely lasts four hours. The hospital staff does not seem to have any solutions after a few weeks now so I am taking it upon myself to figure it out.
December 10, 2013
Rokie's ostomy bag keeps falling off and it is really problematic. If it continues to do so then I don't see how we can go home. I hope we can figure something out.
December 9, 2013
Rokus is doing so much better. The nurses are giving us more breaks, coming to visit Rokus, and just see our miracle child. So many nurses and doctors are really surprised at how well he is doing. Unfortunately though, his kidneys and bowels are still not healing. They both want the opposite treatment. The kidneys want lots of fluids through the GI tract and the bowels want very little. Rokus is also learning how to eat again. He seems to vomit everything he eats but at least he has the desire for food.
Since I visit him on the weekends, all the fun places at the hospital are closed so Rokie and I make up our fun activities. He loves riding in his wheelchair. He always asks for walks so he can leave his bead and return to a "normal" life again. I took him down to the cafeteria and there we kicked around a ball and I made him chase it to develop his muscles. Everyday he gets stronger and gains balance.
Monday, December 9, 2013
December 5, 2013
This week has been interesting. Rokie is much better than before, but we are having complications understanding what is the right treatment for his body. Basically, his kidneys and bowels need healing; however, the treatment for each organ is the opposite. What works for the bowels reduces healing for the kidneys and vice versa. The doctors say that if Rokie is able to take foods orally then perhaps he can help heal both the kidneys and bowels simultaneously. As of today, they are wanting us to challenge him with any foods he is really interested in just to see how well he does. I am praying he can improve and process real foods quickly. If he can do that over the next 1-2 weeks then he can avoid an additional surgery. Come on Rokie. You can do it.
After today's meeting with the doctors, it sounds like Rokie won't come home this month.
As far as his long-term care is concerned, the doctors believe he will need regular checkups his whole life. His kidneys are at least 60% failed right now. We don't know if they will ever be 100% healed. We hope his bowels will function normally even though sections have been removed. He currently has an ostomy bag that we will be responsible for taking care of. Whenever he comes home, there is a chance he will have an IV and feeding tube.
After today's meeting with the doctors, it sounds like Rokie won't come home this month.
As far as his long-term care is concerned, the doctors believe he will need regular checkups his whole life. His kidneys are at least 60% failed right now. We don't know if they will ever be 100% healed. We hope his bowels will function normally even though sections have been removed. He currently has an ostomy bag that we will be responsible for taking care of. Whenever he comes home, there is a chance he will have an IV and feeding tube.
Monday, December 2, 2013
Music Therapy
Thank you loyal reader "Miz" for the tip! We now have the song that Joe, Stephanie, and Olivia put together for Rokie playing from the top of the blog!
December 1, 2013
I spent a lot of one on one time with Rokie today. He still hates the blood pressure cuff and thermometers but other than that, he seems used to hoses and IV lines.
Rokie slept horribly last night because the nurse kept waking him up hourly to do a blood pressure reading. Because of that, Rokie had very little energy to run, walk, or play today. Instead, he and I took a fieldtrip in the wheelchair around the entire hospital campus. He loved it. Wherever he pointed, I went. Eventually, he did climb through the tunnel on the playground, slide down the slide once, and explore a plastic toy house. Other than that, we cruised on wheels.
The doctors today have a plan to make a plan. Over the Thanksgiving holiday, the medical staff has been here and there. I raised my concern at this point there does not appear to be a clear course of action. He agreed. The doctors decided to introduce the Gastrointestinal (GI) specialists into the mix. This week, the ICU Intensivists, Surgery, Nephrology, GI, and other specialists will meet face to face to determine a game plan to be executed. We will know what that looks like later in the week.
Rokie slept horribly last night because the nurse kept waking him up hourly to do a blood pressure reading. Because of that, Rokie had very little energy to run, walk, or play today. Instead, he and I took a fieldtrip in the wheelchair around the entire hospital campus. He loved it. Wherever he pointed, I went. Eventually, he did climb through the tunnel on the playground, slide down the slide once, and explore a plastic toy house. Other than that, we cruised on wheels.
The doctors today have a plan to make a plan. Over the Thanksgiving holiday, the medical staff has been here and there. I raised my concern at this point there does not appear to be a clear course of action. He agreed. The doctors decided to introduce the Gastrointestinal (GI) specialists into the mix. This week, the ICU Intensivists, Surgery, Nephrology, GI, and other specialists will meet face to face to determine a game plan to be executed. We will know what that looks like later in the week.
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