Post by wheezie on Aug 5, 2007 7:14:06 GMT -5
The following e-mail was sent to me from my daughter last night:
Yes it says prayer request! Unfortunately tonight should be the night where I say yeah Camden is done with antibiotics tomorrow and we are done! ---- But this is not the case. Beginning last Sunday Camden started vomit again with eye pain, sensitivity to light and low grade temps. The Pediatrician was baffled and so were we. We got through the week with him having periods where he was fine and periods where he was so sick. On Friday afternoon we went to see Infectious Disease expecting to find out how long we could expect symptoms. The doctor was wonderful, but we were only in the office for about 15 minutes when she told us these were not the symptoms of Camden's Lyme Meningitis, but of a secondary issue that can happen!! We were in shock as she told us that he might have what they call "Pseudotumors" surrounding his brain and spinal cord (which cause increased intra cranial pressure{ICP}). We were told to go right to the ER at Maria Ferrai Children's Hospital (Westchester Medical) for another spinal tap where they would measure the pressure in his spinal/ brain. Of course again we thought get the tap, get some meds and go home!! Well... You have to have a CT Scan before you can have a spinal tap for ICP. So we waited for many hours with a hungry, tired, ill child (You can imagine how great that was!). We had the spinal tap late and waited for the results and then the Infectious Disease Doctor would let us know what to do after speaking with Neurology. In the mean time Camden's blood work showed the his White Blood Cell Count (WBCS) was 2.2 (normal starts at 5.5), but praise God his white blood cells in the spinal fluid went down to 5 from 55 (meaning the meningitis is clearing). At 3am we had a very awake and cranky four year old (one of the anesthesia meds makes him hyper after) and we were told that he had to be admitted for observation. They were concerned about the ICP increasing again (it was 33 and should be below 20 -- {they lowered the pressure to 8 by taking off fluid }) and they were also concerned about the low WBCs -- we would need consults from many doctors in the am. We were also told there were no beds. We tried to have a good attitude, but the ER is loud and uncomfortable. Camden's nurse that night was Keisha who was my good friend Chris Howard's preceptor when he began nursing! She worked extra hard and insisted we get a bed (I think Cam's WBCs helped us too, but gotta love having friends of friends!) We were sent to the hematology/oncology floor and 4 am. Camden still woke up at 7am and was cranky in the morning! But he felt better when breakfast arrived and he could have his bagel. We saw Dr. Li the infectious Disease gut in the early morning (about 8 ish), but had to see everyone before we knew more info. At 11 am we saw Dr. Tugal (who remembers me from working down there) She is a hematologist/ oncologist. She told us that Camden would need another procedure today under anesthesia -- a bone marrow aspiration (or biopsy if you will) to determine if Camden has Leukemia. By now Tracey and I had our heads spinning around in circles!! We were really sleep deprived and were being told scar news!! And now had a cranky child again because again we were withholding food! The biopsy took ten minutes and a VERY long hour of waiting. NO CANCER PRAISE GOD!! He did have some abnormalities that may be viral or an auto immune disease. So he bought another day of observation and more tests and if he is gonna stay tomorrow he may as well stay until Monday to get his central line out! (Praise God for his central line because he isn't getting any "pinches") SO down to business (PRAYER):
1. The Neurologist is wanting to wait before medicating Camden for the ICP - she thinks he may be cured--pray that he is cured! If not he needs a medication to help him get cured. He will also need to see an eye doctor to make sure the ICP isn't effecting the nerves of his eyes.
2. After feeling reservation about the central line removal and speaking with Chris too. Pray that the doctor's use wisdom in deciding when to pull the line. I am worried that they will pull it before all the test results are back and he may need something else through it.
3. Pray that he has a virus that will just go away and his WBCs will just go back to normal. Auto immune diseases can be horrible!
4. Pray for Tracey as she deals with all of this and the other kids and her car that got smashed up last week and work. Pray for her sleep too. It is very nice that they provide cots, but they are by no means comfortable and the nurses come in the room many times through the night, so even though the place looks like a hotel at least every four hours you are reminded it is not!!
5. Pray for the kids
Yes it says prayer request! Unfortunately tonight should be the night where I say yeah Camden is done with antibiotics tomorrow and we are done! ---- But this is not the case. Beginning last Sunday Camden started vomit again with eye pain, sensitivity to light and low grade temps. The Pediatrician was baffled and so were we. We got through the week with him having periods where he was fine and periods where he was so sick. On Friday afternoon we went to see Infectious Disease expecting to find out how long we could expect symptoms. The doctor was wonderful, but we were only in the office for about 15 minutes when she told us these were not the symptoms of Camden's Lyme Meningitis, but of a secondary issue that can happen!! We were in shock as she told us that he might have what they call "Pseudotumors" surrounding his brain and spinal cord (which cause increased intra cranial pressure{ICP}). We were told to go right to the ER at Maria Ferrai Children's Hospital (Westchester Medical) for another spinal tap where they would measure the pressure in his spinal/ brain. Of course again we thought get the tap, get some meds and go home!! Well... You have to have a CT Scan before you can have a spinal tap for ICP. So we waited for many hours with a hungry, tired, ill child (You can imagine how great that was!). We had the spinal tap late and waited for the results and then the Infectious Disease Doctor would let us know what to do after speaking with Neurology. In the mean time Camden's blood work showed the his White Blood Cell Count (WBCS) was 2.2 (normal starts at 5.5), but praise God his white blood cells in the spinal fluid went down to 5 from 55 (meaning the meningitis is clearing). At 3am we had a very awake and cranky four year old (one of the anesthesia meds makes him hyper after) and we were told that he had to be admitted for observation. They were concerned about the ICP increasing again (it was 33 and should be below 20 -- {they lowered the pressure to 8 by taking off fluid }) and they were also concerned about the low WBCs -- we would need consults from many doctors in the am. We were also told there were no beds. We tried to have a good attitude, but the ER is loud and uncomfortable. Camden's nurse that night was Keisha who was my good friend Chris Howard's preceptor when he began nursing! She worked extra hard and insisted we get a bed (I think Cam's WBCs helped us too, but gotta love having friends of friends!) We were sent to the hematology/oncology floor and 4 am. Camden still woke up at 7am and was cranky in the morning! But he felt better when breakfast arrived and he could have his bagel. We saw Dr. Li the infectious Disease gut in the early morning (about 8 ish), but had to see everyone before we knew more info. At 11 am we saw Dr. Tugal (who remembers me from working down there) She is a hematologist/ oncologist. She told us that Camden would need another procedure today under anesthesia -- a bone marrow aspiration (or biopsy if you will) to determine if Camden has Leukemia. By now Tracey and I had our heads spinning around in circles!! We were really sleep deprived and were being told scar news!! And now had a cranky child again because again we were withholding food! The biopsy took ten minutes and a VERY long hour of waiting. NO CANCER PRAISE GOD!! He did have some abnormalities that may be viral or an auto immune disease. So he bought another day of observation and more tests and if he is gonna stay tomorrow he may as well stay until Monday to get his central line out! (Praise God for his central line because he isn't getting any "pinches") SO down to business (PRAYER):
1. The Neurologist is wanting to wait before medicating Camden for the ICP - she thinks he may be cured--pray that he is cured! If not he needs a medication to help him get cured. He will also need to see an eye doctor to make sure the ICP isn't effecting the nerves of his eyes.
2. After feeling reservation about the central line removal and speaking with Chris too. Pray that the doctor's use wisdom in deciding when to pull the line. I am worried that they will pull it before all the test results are back and he may need something else through it.
3. Pray that he has a virus that will just go away and his WBCs will just go back to normal. Auto immune diseases can be horrible!
4. Pray for Tracey as she deals with all of this and the other kids and her car that got smashed up last week and work. Pray for her sleep too. It is very nice that they provide cots, but they are by no means comfortable and the nurses come in the room many times through the night, so even though the place looks like a hotel at least every four hours you are reminded it is not!!
5. Pray for the kids
BCS Improved Poster Award 
