For those who are not on facebook and may not know : Jonathan was admitted to the hospital yesterday afternoon. On Sunday afternoon I picked him up from respite care and he was acting strange. Kind of out of and very mellow. On Monday he continued to be lethargic, spacey, and generally not feeling well. He was complaining of back pain and his head was tilted the right most of the day. I thought it would be related to a sinus infection. So I took him to see the pediatrician and she was unsure of what to do. She gave him antibiotics to try to keep him from getting worse and encouraged me to wait to see the oncology team.
On Wednesday he seemed to be a little better. His color was better and his energy improved. I thought maybe it was getting better and I woudn't need to call the team for their input.
On Thursday morning Jon slept in until 10am. When he came downstairs he was shaking like he was shivering. He said I am cold. So I put a sweatshirt on him and didn't think much else about it. Shortly after he woke up though I noticed that Jon was pretty pale in color, almost gray. Certainly not feeling well. He came and sat with me on the couch and we took his last scantron test for school. As we were sitting there his arms and legs and shoulders start jerking around. It was similar to the way our legs jerk when you are in a deep sleep. His lip was still shaking and quivering and twitching. I immediatly called Denver and told them I was on my way.
I thought maybe we were just having seizure activity. And I wasn't about to have a seizure and not be near the hospital. I was trying to convince myself though that I wasn't crazy and wasn't just seeing things. You would think I would learn to stop second guessing myself. By the time we got to the hospital he was dizzy and crying of intense chest pain. Odd pain for him. I had to put him a wheelchair because he was so dizzy and his legs were jerking a lot.
The normal happy talkative Jonathan who usually greets people with such enthusiasm was barely talking. He was falling asleep. His eyes were twitching and eyelids shutting involunatarily. The doctor came in and checked his hands. He said his color was awful and that he was not well. Intially he did not think it was anything neurological. He said he needed to be admitted because he was unwell with an unknown cause. They did blood work, started an IV with bolus of fluid, IV cortef, and IV antibiotics. Although there is no obvious signs of infection, we have been continuing with IV antibiotics and the stress dose of cortef.
This morning they thought his color was improved and energy level was increased. So they were talking about maybe letting us go home. The main concern was the shaking/jerky movements that are still constant. After they talked to the psychiatrist, the docs thought it might be tardive dyskinesia which is caused by taking anti-psychotic medications. So the psychiatrist suggested that they give him cogenten to see if it would stop the movements. If it did then it would be diagnositc of tardive dyskinesia. So the attending drs ordered the med. In the meantime, Jon was fooling everyone with his charming personality and incredible ability to act well when he is not. So the attending was convinced he was so much better.
Jon was sitting with me on the bed doing school work when the attending came in. He said it appeared he was better... I tried to warn him that he was actually in the process of crashing again. But...I don't think he listened. I told him his throat was hurting and he was getting groggy again. After the doc left I talked to my friend who prayed for the Lord to reveal whether there was something really wrong and that he would allow those who know Jon to be involved. Not even minutes later, the nurse practitioner who usually takes care of us came in. I was so relieved. She watched what was happening. And saw how now 10 minutes after the other doctor left Jon had crashed. He was in bed, unable to keep his eyes open, unable to have a conversation, and very lethargic. He was shaking like crazy. She said she really thinks its neurological. So she went to talk to the neuro-oncologist.
Shortly after she left the psychiatrist came to see Jon. He checked him out and said that it is not the medicine causing this problem. He doesn't have tardive dyskinesia. So he went to talk to the team to figure out what the plan is and what is going on. A few minutes later the social worker came in to check on him. While she was in the room the nurse came back with the congenten. I told her not to give it to him. Last thing we need is to give him some med he doesn't need!
A few minutes ago the Nurse Practitioner called and told me that the neuro-oncologist suggested we go home and come back next week for and MRI and MRA and other tests. He agreed that it could be neurological because of the way his mouth droops when he talks. The inpatient team had not gotten the memo that we were not treating tardive dyskinesia so they were still recommending congenten. I told her the psychiatrist said that was not what was wrong. So she asked me what I wanted to do...did I feel safer in the hospital? Of course, because we don't know what is wrong. How do I know I am not going to take him home and have his head hemorage or something. I asked her what she would do and she said she would stay here. She said she would let them know.
So we really still have no idea what is going on with the boy. All I know is that there is something wrong. Please pray that the Lord will give the doctors supernatural wisdom. Pray that he will give me the ability and confidence to know when to trust them and when to question them. We need to know what is wrong so we can fix it!!!!
Thanks friends for walking through this with us!