August 21, 2017 10:20 pm
It was another rough start today. It took two hours to get the CT scan done because the doctor's orders were incomplete ... twice. Then we went to ST. Things were actually going pretty well in ST when a doctor interrupted the session and told us that he needed to end it and that we needed to go with him. Mary knew it couldn't be good. As we were walking down the hall, the doctor said, "I need you to go back to your room and wait until Dr. Winetraub gets there." Mary said, "Okay," then as we were parting ways, he added, "Oh yeah, and Josh is NPO." Then Mary knew it was really bad. NPO means nothing to eat or drink, which meant that they were considering surgery.
And they were. The results of the scan showed that Josh is "overshunted," meaning that the shunt is draining too much fluid from his brain and the brain is collapsing in on itself. This has allowed fluid to accumulate between his brain and his skull in the frontal lobe area. This is actually more dangerous than hydrocephalus. Winetraub and the neurosurgeon spoke and debated surgery, but decided to turn off the shunt for a day and give Josh another CT scan tomorrow morning. They will determine the next course of action after they get the results of that scan.
Later, Dr. Rubin came to see Josh to ensure that the shunt had been turned off completely. It had. He also need to evaluate Josh's situation to determine whether emergency surgery to drain the excess fluid was necessary. Fortunately, after his quick evaluation, he decided no surgery would be necessary. He ordered an MRI for Wednesday morning. The MRI will tell him not only the fluid levels, but if there is any infection in the fluid.
Josh fell asleep during PT ... while he was walking. This happened likely because he was given Xanex before the CT scan this morning. So the therapist cut his class short and put him to bed. Thirty minutes later it was time for ST again. Mary told that therapist that Josh was sleeping and she thought it was in his best interest to miss class. The therapist agreed. So Josh slept ... for just over six hours! He has had a TERRIBLE time sleeping at night, so we hope all this mid-day "nap" doesn't catch up with him now.
After dinner (and after pushing his wheelchair around his room over and over and over again for about 30 minutes), Josh agreed to go to the rec area to play some games, so Paul took him there. They played Foosball and air hockey for about an hour and then came back to the room. We thought Josh would be tired, but he still had energy to wheel around in the room for another 30 minutes or so. He finally told us that he was tired. Earlier, the nurse had told Josh to let her know when he gets tired. Paul had a great idea: let Josh handle this himself. So Mary gave Josh the room phone, helped him dial her number (it took him 5 tries to dial just 4 numbers correctly), and Josh told his nurse that he was ready for bed. That was quite an accomplishment for Josh!
As we head into tomorrow we are very concerned about Josh's situation. With his shunt now turned off, he will again start to build up fluid in his ventricles -- hydrocephalus. This time, it's intentional, but we dread the same result as last time -- lethargy, lack of connection and interaction, and regression. We understand that this is necessary to fix the problem, and we also understand that getting the shunt at the right setting will take time and patience. But we are both struggling with the prospect of going through this all again. If this doesn't work, the next strategy is to inflate his ventricles for two weeks and then drain them. Dr. Rubin said that, "The brain will stick to the bone flap so that when the ventricles drain, the brain won't collapse in on itself." If this happens, we will have to return to Swedish Hospital for another 2 weeks. And if at any time the pressure in the frontal lobes gets too great, Josh will need surgery.
That's life with a brain injury -- a long, long road with many ups and downs.
It was another rough start today. It took two hours to get the CT scan done because the doctor's orders were incomplete ... twice. Then we went to ST. Things were actually going pretty well in ST when a doctor interrupted the session and told us that he needed to end it and that we needed to go with him. Mary knew it couldn't be good. As we were walking down the hall, the doctor said, "I need you to go back to your room and wait until Dr. Winetraub gets there." Mary said, "Okay," then as we were parting ways, he added, "Oh yeah, and Josh is NPO." Then Mary knew it was really bad. NPO means nothing to eat or drink, which meant that they were considering surgery.
And they were. The results of the scan showed that Josh is "overshunted," meaning that the shunt is draining too much fluid from his brain and the brain is collapsing in on itself. This has allowed fluid to accumulate between his brain and his skull in the frontal lobe area. This is actually more dangerous than hydrocephalus. Winetraub and the neurosurgeon spoke and debated surgery, but decided to turn off the shunt for a day and give Josh another CT scan tomorrow morning. They will determine the next course of action after they get the results of that scan.
Later, Dr. Rubin came to see Josh to ensure that the shunt had been turned off completely. It had. He also need to evaluate Josh's situation to determine whether emergency surgery to drain the excess fluid was necessary. Fortunately, after his quick evaluation, he decided no surgery would be necessary. He ordered an MRI for Wednesday morning. The MRI will tell him not only the fluid levels, but if there is any infection in the fluid.
Josh fell asleep during PT ... while he was walking. This happened likely because he was given Xanex before the CT scan this morning. So the therapist cut his class short and put him to bed. Thirty minutes later it was time for ST again. Mary told that therapist that Josh was sleeping and she thought it was in his best interest to miss class. The therapist agreed. So Josh slept ... for just over six hours! He has had a TERRIBLE time sleeping at night, so we hope all this mid-day "nap" doesn't catch up with him now.
After dinner (and after pushing his wheelchair around his room over and over and over again for about 30 minutes), Josh agreed to go to the rec area to play some games, so Paul took him there. They played Foosball and air hockey for about an hour and then came back to the room. We thought Josh would be tired, but he still had energy to wheel around in the room for another 30 minutes or so. He finally told us that he was tired. Earlier, the nurse had told Josh to let her know when he gets tired. Paul had a great idea: let Josh handle this himself. So Mary gave Josh the room phone, helped him dial her number (it took him 5 tries to dial just 4 numbers correctly), and Josh told his nurse that he was ready for bed. That was quite an accomplishment for Josh!
As we head into tomorrow we are very concerned about Josh's situation. With his shunt now turned off, he will again start to build up fluid in his ventricles -- hydrocephalus. This time, it's intentional, but we dread the same result as last time -- lethargy, lack of connection and interaction, and regression. We understand that this is necessary to fix the problem, and we also understand that getting the shunt at the right setting will take time and patience. But we are both struggling with the prospect of going through this all again. If this doesn't work, the next strategy is to inflate his ventricles for two weeks and then drain them. Dr. Rubin said that, "The brain will stick to the bone flap so that when the ventricles drain, the brain won't collapse in on itself." If this happens, we will have to return to Swedish Hospital for another 2 weeks. And if at any time the pressure in the frontal lobes gets too great, Josh will need surgery.
That's life with a brain injury -- a long, long road with many ups and downs.
In my prayers every day I thank God that your are there, Eden. I know being away from your little family is hard, but you are making history now.
ReplyDeleteI can't imagine what you are all going through. We love you and pray for you daily. Carole and David
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