Today has been a big day for Mr. Theo. He was extubated (breathing tube removed) at 9:00 a.m. this morning. Shortly after that they took out the central line in his femoral artery. Prior to that, they had inserted an IV and he promptly yanked it out right after they took out the central line. Instead of sticking him again, they just left it and are giving him his steroids and methadone through the feeding tube. They took the feeding tube out but he wouldn't take a bottle--I think that I could have gotten him to do it--or if they would have let me try, I bet he would have breastfed. Anyway, they will have the SLP (speech pathologist) look at him again tomorrow and try to do a swallowing test. This afternoon they took out the ventric tube. So the only thing he's hooked up to right now is the feeding tube. And the heart rate and respiration monitors--but those are just the regular leads that are stuck to his chest--non-invasive stuff. Tomorrow they will probably try to get another IV in. Jamie talked with the oncologist Dr. Dunn today and she said taht the cancer was in fact the chortoid plexus carcinoma. They are waiting for one more stain to be returned and will talk to us further about treatment plans and such tomorrow. She did say that they would most likely put a port type thing in an artery near his heart to deliver the chemo since his little baby veins are not very cooperative as it is and could not stand sustained medication delivery (especially that nasty chemo--but it has to be done). That's all we know right now except that this kind of brain tumor is one of the most rare that exists. I will update you after we both meet with Dr. Dunn and the Heemonk team tomorrow.
Keep up the prayers and love and meditations and chants and whatever you are sending our way. I always feel I must reiterate how very much we appreciate and need those. We heard today from Jamie's Aunt Ruth that Theo is being prayed for all the way over in France and that a prayer network was begun at Lourdes and is probably all over Europe by now. So now it's gone overseas ~~
Love and Kisses--
Karla
Wednesday, August 31, 2005
Tuesday, August 30, 2005
The Latest News~~8/30/05 11:00 p.m.
Lots of news tonight~~
He has been taken off the fentanyl—which is like morphine—and put on methadone to counteract any withdrawal symptoms. He will be on the methadone for 4 days. He has been on the fentanyl for 9 days for pain.
They are planning on taking out the breathing tube tomorrow morning around 8:00 a.m. This is very good news. He is continuing to breathe on his own since Sunday evening and because he has been breathing “room air” they don’t anticipate his needing oxygen after extubation. After the breathing tube comes out, I will be able to hold him again which is some of the best news of all! The only thing better than that is that they may take his feeding tube out tomorrow as well. If not tomorrow then Thursday. They want to get a Speech/language pathologist to come observe him and to do a barium swallow test to make sure that he will not aspirate when he swallows. After that I will be able to breastfeed him again and Jamie can bottle feed him. That will be a wonderful day! I can't wait to hold him in my arms and feed him again. We have lots of breastmilk stored up in the freezer at the hospital too for bottle feeding. He was getting breastmilk through his feeding tube for a little while but then his sodium levels dropped very low. There is not very much sodium in breastmilk, but a lot in formula, so he has been getting formula exclusively for a while. Most likely, his sodium dropped because he was draining so much cerebral spinal fluid, which contains a lot of salt.
Speaking of that, they may take out the ventric tube tomorrow or Thursday. This is neurosurgery’s decision and I didn’t see Dr. Ward today, but the PICU doctor thinks the removal of that tube should be fairly soon as well. He is draining much less fluid and has not been "popped off"--unclamping the ventric to drain--for over 24 hours and the last time it drained, it was 7 ml less fluid than the previous time. This shows that he is not producing excessive amounts of fluid and that it is becoming more stable.
Other good signs are that he is coughing on his own to clear his lungs and crying. He cried tears for the first time tonight while he was coughing and the nurses were suctioning his breathing tube. He also cried when they were trying (in vain) to find a vein to do labs. They were thinking of taking out the central line in his femoral artery tonight but only if they could find a good vein to draw labs and to give his steroids (to reduce swelling). The central line has not been allowing them to draw back blood (probably because his artery is so small and maybe because it is clotting), and is causing his leg to be swollen, but they decided to leave it in because they couldn’t find an alternative. They think they will probably take it out tomorrow as well. It made me sad to see him cry, making no sound because the breathing tube runs between his vocal chords, tears just squeezing silently from his little eyes, but it showed that he’s much less sedated and that he is sensing and feeling more. His gag reflex is working well also, which is something the neurologists were looking for.
The PICU attending physician told me tonight that she had talked with the pathology people and they are 98% certain that the tumor was a choroid plexus carcinoma. They are still waiting for 2 stains to come back. The slides are sent out to very specialized labs and there is a lot of transit time. This is why it has taken so long. We will probably meet with the people from Hematology/Oncology tomorrow--they call them "Heem-Onc". The Heem-Oncs don't want to discuss a treatment plan until they are 100% certain what is was, but the 98% is a pretty good bet that it was the choroid plexus carcinoma. The choroid plexus is the structure in the brain that makes cerebral spinal fluid. The following information is from St. Jude Hospital's website (because I know ya'll would be looking up information--but don't look too hard because there is a chance it is something else--but most likely, this was it) :
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The choroid plexus carcinoma is sometimes called an anaplastic choroid plexus papilloma. In very young children, the lateral ventricles are the most common location of this tumor. Ventricles are cavities in the brain that are filled with cerebrospinal fluid, including the two lateral, third, and fourth ventricles.
The choroid plexus carcinoma grows within the ventricles. It eventually blocks the flow of cerebrospinal fluid, causing hydrocephalus (an abnormal increase of cerebrospinal fluid in the intracranial cavity). Headache and other symptoms of increased pressure are common.
<***this was the vomiting I saw and the abnormal motor movements***>
The choroid plexus carcinomas commonly grow into nearby tissue and spread widely via the cerebrospinal fluid.
<***this didn't happen because we caught it so early***>
Incidence
About 3 percent of the primary brain tumors in children are choroid plexus papillomas.
<***The benign form***>
They represent less than 1 percent of all primary brain tumors. Choroid plexus carcinomas comprise about 10 percent of all choroid plexus tumors.
Treatment Strategies
For choroid plexus carcinomas, treatment often includes surgery, chemotherapy, and radiation therapy.
<***He won't have radiation because he is so young***>
A second surgery might be recommended for recurrent tumors, followed by some form of radiation and/or chemotherapy.
Current Research
Stem cell transplantation as a part of treatment continues to be under study.
Scientists continue to study chromosomal abnormalities, genes, and proteins that may have a role in the development and metastasis (spread to other parts of the central nervous system) of pediatric brain tumors.
Clinical trials are underway to help develop chemotherapy drugs effective against these tumors.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I will let you know what the Hee-Moncs say, whether it is something different and what the inital treatment strategies are as soon as we know.
Keep praying and sending positive energy and thinking and speaking good thoughts. As my mom said today, "We won't speak or even think negatively concerning Theo".
Keep sending us your love--he is getting much better :-)
We love you all--
Karla
XOXOX
He has been taken off the fentanyl—which is like morphine—and put on methadone to counteract any withdrawal symptoms. He will be on the methadone for 4 days. He has been on the fentanyl for 9 days for pain.
They are planning on taking out the breathing tube tomorrow morning around 8:00 a.m. This is very good news. He is continuing to breathe on his own since Sunday evening and because he has been breathing “room air” they don’t anticipate his needing oxygen after extubation. After the breathing tube comes out, I will be able to hold him again which is some of the best news of all! The only thing better than that is that they may take his feeding tube out tomorrow as well. If not tomorrow then Thursday. They want to get a Speech/language pathologist to come observe him and to do a barium swallow test to make sure that he will not aspirate when he swallows. After that I will be able to breastfeed him again and Jamie can bottle feed him. That will be a wonderful day! I can't wait to hold him in my arms and feed him again. We have lots of breastmilk stored up in the freezer at the hospital too for bottle feeding. He was getting breastmilk through his feeding tube for a little while but then his sodium levels dropped very low. There is not very much sodium in breastmilk, but a lot in formula, so he has been getting formula exclusively for a while. Most likely, his sodium dropped because he was draining so much cerebral spinal fluid, which contains a lot of salt.
Speaking of that, they may take out the ventric tube tomorrow or Thursday. This is neurosurgery’s decision and I didn’t see Dr. Ward today, but the PICU doctor thinks the removal of that tube should be fairly soon as well. He is draining much less fluid and has not been "popped off"--unclamping the ventric to drain--for over 24 hours and the last time it drained, it was 7 ml less fluid than the previous time. This shows that he is not producing excessive amounts of fluid and that it is becoming more stable.
Other good signs are that he is coughing on his own to clear his lungs and crying. He cried tears for the first time tonight while he was coughing and the nurses were suctioning his breathing tube. He also cried when they were trying (in vain) to find a vein to do labs. They were thinking of taking out the central line in his femoral artery tonight but only if they could find a good vein to draw labs and to give his steroids (to reduce swelling). The central line has not been allowing them to draw back blood (probably because his artery is so small and maybe because it is clotting), and is causing his leg to be swollen, but they decided to leave it in because they couldn’t find an alternative. They think they will probably take it out tomorrow as well. It made me sad to see him cry, making no sound because the breathing tube runs between his vocal chords, tears just squeezing silently from his little eyes, but it showed that he’s much less sedated and that he is sensing and feeling more. His gag reflex is working well also, which is something the neurologists were looking for.
The PICU attending physician told me tonight that she had talked with the pathology people and they are 98% certain that the tumor was a choroid plexus carcinoma. They are still waiting for 2 stains to come back. The slides are sent out to very specialized labs and there is a lot of transit time. This is why it has taken so long. We will probably meet with the people from Hematology/Oncology tomorrow--they call them "Heem-Onc". The Heem-Oncs don't want to discuss a treatment plan until they are 100% certain what is was, but the 98% is a pretty good bet that it was the choroid plexus carcinoma. The choroid plexus is the structure in the brain that makes cerebral spinal fluid. The following information is from St. Jude Hospital's website (because I know ya'll would be looking up information--but don't look too hard because there is a chance it is something else--but most likely, this was it) :
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The choroid plexus carcinoma is sometimes called an anaplastic choroid plexus papilloma. In very young children, the lateral ventricles are the most common location of this tumor. Ventricles are cavities in the brain that are filled with cerebrospinal fluid, including the two lateral, third, and fourth ventricles.
The choroid plexus carcinoma grows within the ventricles. It eventually blocks the flow of cerebrospinal fluid, causing hydrocephalus (an abnormal increase of cerebrospinal fluid in the intracranial cavity). Headache and other symptoms of increased pressure are common.
<***this was the vomiting I saw and the abnormal motor movements***>
The choroid plexus carcinomas commonly grow into nearby tissue and spread widely via the cerebrospinal fluid.
<***this didn't happen because we caught it so early***>
Incidence
About 3 percent of the primary brain tumors in children are choroid plexus papillomas.
<***The benign form***>
They represent less than 1 percent of all primary brain tumors. Choroid plexus carcinomas comprise about 10 percent of all choroid plexus tumors.
Treatment Strategies
For choroid plexus carcinomas, treatment often includes surgery, chemotherapy, and radiation therapy.
<***He won't have radiation because he is so young***>
A second surgery might be recommended for recurrent tumors, followed by some form of radiation and/or chemotherapy.
Current Research
Stem cell transplantation as a part of treatment continues to be under study.
Scientists continue to study chromosomal abnormalities, genes, and proteins that may have a role in the development and metastasis (spread to other parts of the central nervous system) of pediatric brain tumors.
Clinical trials are underway to help develop chemotherapy drugs effective against these tumors.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I will let you know what the Hee-Moncs say, whether it is something different and what the inital treatment strategies are as soon as we know.
Keep praying and sending positive energy and thinking and speaking good thoughts. As my mom said today, "We won't speak or even think negatively concerning Theo".
Keep sending us your love--he is getting much better :-)
We love you all--
Karla
XOXOX
8/30/05
Not a lot of news to share today--which is pretty good news. He continues to do very well, breathing on his own, swelling going down, etc. The ventric tube, still inserted in his ventricle, is needing to be drained very infrequently. They clamped it off on Sunday and have been "popping off" every so often to drain the accumulated fluid. When his ICP numbers get in to the 20's for longer than a few minutes, they let it drain. The last time they did it was last night around 8:00 and prior to that it hadn't been done since the night before. When they drained it last, there was less fluid than the previous time they drained it. All these things are good signs. Once it doesn't need to be drained at all, they will take it out and then I can hold him again. To say I am looking forward to that would be the understatement of the year. I will be so happy to be able to hold him in my arms again.
We still have not heard anything on pathology. I am writing this from home, I met Jamie here for lunch during his break between classes. I will check when I get to the hospital, where I am headed in just a few minutes, to see if there has been any news.
Keep praying and sending positive energies.
My mom sent me this bible verse today:
For I know the plans I have for you, says the Lord. They are plans for good and not for evil, to give you a future and a hope. In those days when you pray, I will listen. You will find me when you seek me if you look for me in earnest.
Jeremiah 29:11-13
(Living Bible)
Love,
Karla
xoxox
We still have not heard anything on pathology. I am writing this from home, I met Jamie here for lunch during his break between classes. I will check when I get to the hospital, where I am headed in just a few minutes, to see if there has been any news.
Keep praying and sending positive energies.
My mom sent me this bible verse today:
For I know the plans I have for you, says the Lord. They are plans for good and not for evil, to give you a future and a hope. In those days when you pray, I will listen. You will find me when you seek me if you look for me in earnest.
Jeremiah 29:11-13
(Living Bible)
Love,
Karla
xoxox
Monday, August 29, 2005
Monday 8/29/05
Another good night last night and a good day today. He was able to breathe on his own yesterday around 6:30 p.m. and continued throughout the night and all day today. I have been back at work most of the day today in order to ensure that I keep all my benefits for Theo. I used up all my FMLA on maternity leave. All this happened the weekend just before I was scheduled to return to work. It wasn't as hard as I thought it would be, but knowing he is doing well is helping. Also, everyone at work is being so wonderfully supportive, that it makes things a little easier.
Another EEG was done today just to check and there are still no seizures, and there are none. Since the Codman was taken out and the ventric tube clamped, he has only had to be "popped off" --unclamped--and allowed to drain a few times. This is a good sign that he is not producing too terribly much CS fluid. His ICP has remained good (except for the times when it needs to drain) and he has continued to do well.
I am getting ready to head back to the hospital now. We're still waiting on pathology results.
Keep us in your thoughts, prayers and meditations.
Continued Love,
Karla
Another EEG was done today just to check and there are still no seizures, and there are none. Since the Codman was taken out and the ventric tube clamped, he has only had to be "popped off" --unclamped--and allowed to drain a few times. This is a good sign that he is not producing too terribly much CS fluid. His ICP has remained good (except for the times when it needs to drain) and he has continued to do well.
I am getting ready to head back to the hospital now. We're still waiting on pathology results.
Keep us in your thoughts, prayers and meditations.
Continued Love,
Karla
Sunday, August 28, 2005
Good news this morning! 8/28/05
Theo had a good night last night, fairly calm. They had taken him off his fentenyl(the pain medication) and were giving him doses of ativan when he would become active or begin fighting against all his tubes and plugs and such. They were hoping to be able to leave him off the pain meds but decided to resume the most recent amount (half the original dose) due to his struggling each time the ativan wore off. After that he slept peacefully with no problems.
He went for another CT scan this morning around 9:30 which was read soon after by the neurosurgeon on duty, Dr. Highsmith. The scan shows very good reduction of swelling and good movement of the brain back towards the midline. He also told us that they had tested the fluid that has been draining from his ventricles and it shows no infection or abnormalities. The fluid has been getting steadily clearer and less in amount, also, which is good. The neurosurgeon is currently removing the Codman monitor, the one which measures ICP (intercranial pressure) and is located just under the skull. The other measurement of ICP comes from the ventricular tube which is inserted directly in the left ventricle. This one they will clamp off. They are leaving it in just in case more needs to drain--which it probably will, but that's to be expected. The Codman removal and the clamping of the ventric tube are both very good signs of lowering pressure and more normal amounts of CSF (cerebral spinal fluid) production. He is going to stay on his fentenyl for pain and the phenobarbitol for any seizure activity that may occur, though it doesn't appear that there any is right now. He is doing very well right now.
I know that the great progress we are seeing is a direct result of all the prayers, meditations, chants and loving, healing energies being sent our way. Please continue to pray and meditate and to send out love and positive energies. One of our neighbors, a jazz musician, is playing a Thelonious Monk song nightly on his stand up bass for our Thelonius. Any lovingkindness and healing thought, actions and prayers you send our way makes a difference. I know that it does and I can feel it too.
We still have not heard anything on the pathology report. We will most likely hear something tomorrow or the next day. Again, I am still currently focusing on the immediate situation which looks really good right now.
Love,
Karla
He went for another CT scan this morning around 9:30 which was read soon after by the neurosurgeon on duty, Dr. Highsmith. The scan shows very good reduction of swelling and good movement of the brain back towards the midline. He also told us that they had tested the fluid that has been draining from his ventricles and it shows no infection or abnormalities. The fluid has been getting steadily clearer and less in amount, also, which is good. The neurosurgeon is currently removing the Codman monitor, the one which measures ICP (intercranial pressure) and is located just under the skull. The other measurement of ICP comes from the ventricular tube which is inserted directly in the left ventricle. This one they will clamp off. They are leaving it in just in case more needs to drain--which it probably will, but that's to be expected. The Codman removal and the clamping of the ventric tube are both very good signs of lowering pressure and more normal amounts of CSF (cerebral spinal fluid) production. He is going to stay on his fentenyl for pain and the phenobarbitol for any seizure activity that may occur, though it doesn't appear that there any is right now. He is doing very well right now.
I know that the great progress we are seeing is a direct result of all the prayers, meditations, chants and loving, healing energies being sent our way. Please continue to pray and meditate and to send out love and positive energies. One of our neighbors, a jazz musician, is playing a Thelonious Monk song nightly on his stand up bass for our Thelonius. Any lovingkindness and healing thought, actions and prayers you send our way makes a difference. I know that it does and I can feel it too.
We still have not heard anything on the pathology report. We will most likely hear something tomorrow or the next day. Again, I am still currently focusing on the immediate situation which looks really good right now.
Love,
Karla
Saturday, August 27, 2005
8/27/05
August 27
I am very tired today, even though I did get some sleep last night. Jamie stayed here at the hospital with Theo last night and is now at home napping. Theo is still stable, we are just waiting for the edema to continue to decrease and to see more and more higher brain function increase (voluntary movements, facial expression, visual tracking). They are going to do another CT scan either today or tomorrow to check on the swelling and the brain movement (hopefully more toward the norm). Everything else has remained the same. Little Theo is sleeping right now. They decreased his pain medication to see how he would respond and he got extremely agitated when the nurses were flushing IVs and clearing his breathing tube. He continued to fight and move and struggle, so to avoid his messing up any of his lines or tubes, he got a shot of ativan to calm the agitation. So he is sound asleep now. He looks very peaceful and sweet. He still has some hair--they didn't shave it all for the surgery-- but it is taped down under the bandages so he looks bald and the EEG leads left his skin irritated on his forehead, but he is still the most beautiful baby in the world.
I will be working 15 hours at the office next week and doing some work here from the hospital on laptop and with paperwork for about 15 hours to make up a total of 30 hours. I was told I could work 30 hours a week and keep my current benefits, but I must get back right away. I was out 12 weeks for maternity leave. How could anyone have forseen this would happen? The 30 hour a week schedule may work out pretty well. I can maybe work 10 hour days on Mondays, Wednesdays and Fridays while Jamie teaches his classes on Tuesdays and Thursdays, so one of us can be here every day of the week and both on the weekend. We are both holding up pretty well. All our wonderful friends and family have been just indescribably supportive, loving and helpful. Thank you all. Not to mention the thousands of people out there praying and meditating and chanting for all three of us--for healing and strength and faith. Thank you so much.
Again, we haven't got any news from pathology yet. We'll let you know when we do. Still no seizures and he continues to be on only the one medication for seizure. It is still looking good for now--just waiting and praying for the swelling to go down.
Keep up the prayers and love.
XOXO
Karla
I am very tired today, even though I did get some sleep last night. Jamie stayed here at the hospital with Theo last night and is now at home napping. Theo is still stable, we are just waiting for the edema to continue to decrease and to see more and more higher brain function increase (voluntary movements, facial expression, visual tracking). They are going to do another CT scan either today or tomorrow to check on the swelling and the brain movement (hopefully more toward the norm). Everything else has remained the same. Little Theo is sleeping right now. They decreased his pain medication to see how he would respond and he got extremely agitated when the nurses were flushing IVs and clearing his breathing tube. He continued to fight and move and struggle, so to avoid his messing up any of his lines or tubes, he got a shot of ativan to calm the agitation. So he is sound asleep now. He looks very peaceful and sweet. He still has some hair--they didn't shave it all for the surgery-- but it is taped down under the bandages so he looks bald and the EEG leads left his skin irritated on his forehead, but he is still the most beautiful baby in the world.
I will be working 15 hours at the office next week and doing some work here from the hospital on laptop and with paperwork for about 15 hours to make up a total of 30 hours. I was told I could work 30 hours a week and keep my current benefits, but I must get back right away. I was out 12 weeks for maternity leave. How could anyone have forseen this would happen? The 30 hour a week schedule may work out pretty well. I can maybe work 10 hour days on Mondays, Wednesdays and Fridays while Jamie teaches his classes on Tuesdays and Thursdays, so one of us can be here every day of the week and both on the weekend. We are both holding up pretty well. All our wonderful friends and family have been just indescribably supportive, loving and helpful. Thank you all. Not to mention the thousands of people out there praying and meditating and chanting for all three of us--for healing and strength and faith. Thank you so much.
Again, we haven't got any news from pathology yet. We'll let you know when we do. Still no seizures and he continues to be on only the one medication for seizure. It is still looking good for now--just waiting and praying for the swelling to go down.
Keep up the prayers and love.
XOXO
Karla
Friday, August 26, 2005
8/26/05
5/26/05
He looked really good this morning. Today is his three-month birthday.
He is continuing to move and to respond to external stimiuli. The neurologists seemed very encouraging. The only frustrating thing is that very little specifics can be given--we have to wait and see. He was unable to breathe totally on his own without the ventilator, but was continuing to breathe over it when they turned it down. That is because the swelling in the brain is continuing to keep many functions suppressed. Lower brain functions like reflex and response to touch or pain are reacting more strongly each day and the breathing (which is a higher brain function) is doing better also, which makes me think that as the swelling goes down more and more progress will be revealed in all areas--high and low. Other hihger functions are things like tracking with the eyes, recognizing faces and voices, smiling, displaying other social skills--he didn't have that many to start with but they are things like returning vocalizations, imitating noises we make, laughing during interactions. He had just started doing those things at home. He had been smiling consistently and returning smiles and sounds for about 2 to 3 weeks. So, I hope to see the return of his smile soon. But it will take patience and just waiting for his brain to heal. It will be impossible to tell if there is any permanent damage (which I don't believe there is) but doctors won't say anything obviously until all the swelling is down--which is happening, but slowly. There are still no seizures which is very good. He is only on the phenobarbitol now. The dilantin should be completely out of his system. This minute, they are removing the central line from the right groin and moving it to the left side since there was a clog in the line creating leaks around the site. Becuase of this, they upped his sedation meds for the procedure so he will probably be very groggy for a while afterward.
No pathology report yet, and really, that is still fine with me. I have enough to be thinking about right now without the next layer piled on. We know some further treatment will have to occur, but it can't happen anyway until all the swelling goes down and he remains stable.
I am having a little more anxiety today. I started taking reglan, a drug for stomach problems, ulcers, reflux, etc., but which has a side effect of increased milk production and lactation. I don't want to run out of milk while this is all going on and when he can nurse again, I want to give him all I can. In the meantime, I have been pumping and freezing the milk, but the amount I can pump has been slowly decreasing day by day. I can see an increase having just taken the medication for one day. But the medicine also has a side effect of increasing anxiety and feelings of restlessness and also drowsiness or dizziness--some people who take it can show signs of basket-case NOS, a little known clinical term (not really). I'm sure my circumstances don't help any. So to counteract, I have a script of ativan. I may stop taking the reglan all together--I only started yesterday--But I just really want to be able to give him something when I have the chance. We're also a little stressed about what will be happening with both our work situations and the longterm benefits (insurance, etc) and financial outlook. It could be a very long road.
Please do keep us all in your prayers for comfort and guidance--but mostly for little baby Theo's recovery. The nurses call him Mr. Theo! I do have a very positive feeling about him and I know he will be healed and will come out of all this whole and just as beautiful and bright as ever. Thank you again--I can't say it enough--for all your wonderful support, your emails, your prayers, your love, your encouragement, all the wonderful gifts of spirit and love--also for those of flowers, chocolate, food, pet care, house watching, baby blankets, balloons and stuffed creatures of all sorts. We love you all. Keep watching for the next installment.
Love,
Karla
He looked really good this morning. Today is his three-month birthday.
He is continuing to move and to respond to external stimiuli. The neurologists seemed very encouraging. The only frustrating thing is that very little specifics can be given--we have to wait and see. He was unable to breathe totally on his own without the ventilator, but was continuing to breathe over it when they turned it down. That is because the swelling in the brain is continuing to keep many functions suppressed. Lower brain functions like reflex and response to touch or pain are reacting more strongly each day and the breathing (which is a higher brain function) is doing better also, which makes me think that as the swelling goes down more and more progress will be revealed in all areas--high and low. Other hihger functions are things like tracking with the eyes, recognizing faces and voices, smiling, displaying other social skills--he didn't have that many to start with but they are things like returning vocalizations, imitating noises we make, laughing during interactions. He had just started doing those things at home. He had been smiling consistently and returning smiles and sounds for about 2 to 3 weeks. So, I hope to see the return of his smile soon. But it will take patience and just waiting for his brain to heal. It will be impossible to tell if there is any permanent damage (which I don't believe there is) but doctors won't say anything obviously until all the swelling is down--which is happening, but slowly. There are still no seizures which is very good. He is only on the phenobarbitol now. The dilantin should be completely out of his system. This minute, they are removing the central line from the right groin and moving it to the left side since there was a clog in the line creating leaks around the site. Becuase of this, they upped his sedation meds for the procedure so he will probably be very groggy for a while afterward.
No pathology report yet, and really, that is still fine with me. I have enough to be thinking about right now without the next layer piled on. We know some further treatment will have to occur, but it can't happen anyway until all the swelling goes down and he remains stable.
I am having a little more anxiety today. I started taking reglan, a drug for stomach problems, ulcers, reflux, etc., but which has a side effect of increased milk production and lactation. I don't want to run out of milk while this is all going on and when he can nurse again, I want to give him all I can. In the meantime, I have been pumping and freezing the milk, but the amount I can pump has been slowly decreasing day by day. I can see an increase having just taken the medication for one day. But the medicine also has a side effect of increasing anxiety and feelings of restlessness and also drowsiness or dizziness--some people who take it can show signs of basket-case NOS, a little known clinical term (not really). I'm sure my circumstances don't help any. So to counteract, I have a script of ativan. I may stop taking the reglan all together--I only started yesterday--But I just really want to be able to give him something when I have the chance. We're also a little stressed about what will be happening with both our work situations and the longterm benefits (insurance, etc) and financial outlook. It could be a very long road.
Please do keep us all in your prayers for comfort and guidance--but mostly for little baby Theo's recovery. The nurses call him Mr. Theo! I do have a very positive feeling about him and I know he will be healed and will come out of all this whole and just as beautiful and bright as ever. Thank you again--I can't say it enough--for all your wonderful support, your emails, your prayers, your love, your encouragement, all the wonderful gifts of spirit and love--also for those of flowers, chocolate, food, pet care, house watching, baby blankets, balloons and stuffed creatures of all sorts. We love you all. Keep watching for the next installment.
Love,
Karla
Thursday, August 25, 2005
The Beginning
I'm starting a blog to keep everyone updated on what's happening with our baby boy, Thelonius Luther. ~~I am starting by posting all the emails I have sent out and a brief synopsis of what happened prior to surgery. ~~~
Karla
He was totally fine on Saturday morning August 20th. We woke up at 6:30a.m., he nursed, went back to bed together and snuggled till 8:30 a.m.
(Jamie was in Roanoke helping his sister Meg with straightening out their mom's estate. For those of you who don't know, Jamie's mom Marge passed away the day Theo was making his way into the world. She left on May 25th, he was born May 26th at 12:02 a.m.)
Around 10:30 a.m. on the 20th, Theo got very pale, very lethargic and sleepy. He threw up twice and I called the pediatrician. She said to go the ER if he threw up again. I noticed as I was watching him that he was making very agitated movements on his right side, but not so much with the left. He was also having a hard time keeping one eye open. After the third time vomiting, we went to the ER at St. Mary's. After I explained what I noticed with the movements, a CT scan was ordered and blood was found in the brain. They sent us by ambulance immediately to MCV--the Medical College of Virginia--a teaching hospital here in Richmond. Once there, an MRI was ordered. Jamie got in town around 5:00 p.m. after my call. We were told that the blood in the brain was actually a tumor located in his right ventricle--the space in the center of the brain that holds our cerebral spinal fluid.
First Mail
5/22/05
I know this may be a big shock to many of you on this list, but I wanted you all to know and to ask for your prayers and positive thoughts, meditations, chants, anything you will send our way. My baby Theo, 12 weeks old this past Thursday has just gone down to the OR at MCV for brain surgery to remove a large tumor from the right ventricle of his little brain. I am writing this from the PICU family waiting area. He began vomiting on Saturday morning and a CT scan showed blood in his brain. A subsequent MRI revealed the tumor. No previous signs or symptoms that anything was wrong at all. He has been a bright, active, playful little boy until Saturday morning. Jamie and I are doing as well as can be expected. I am having trouble just believing any of this is really real. I am holding it together pretty well. I have positive feelings and am holding on to all hope. Best case scenario they can get it all out and he will be home in 4 days or so. He may have to have chemo, but maybe not if they can get it all. His neurosurgeon said it looks from the pictures that most of the tumor (6x6x6 centimeters--a little larger than a golf ball) is very easy to get to but there is one section where it is being fed my arteries attached to the ventricular wall. Some good news is that the tumor has not been growing in any grey matter and so any damage to the brain tissue will be minimized. Dr. Ward says that he operated on a kid with a similar size tumor , same spot, under the age of 1 who is a normal and healthy 11 year old boy now. My parents are here, we have a great deal of good support. Please just help me by sending out love, prayer and good thoughts and energy to my boy and to us as we go through this. Surgery should be done in about 6 hours--around 7 p.m. I guess. We are on the 7th floor in room 7-608, but I will post a mail when I know something. We'd rather not have a lot of visitors right now though please. Alice and Jessica will have information pretty quickly after I know if you would like to also go through them for those of you who know them.
Keep us in your thoughts and prayers---
Love,
Karla
Update #1:
Theo's surgery went very well. He is resting now in his room. They are monitoring him closely. The surgeons feel that they got about 95-98% of the tumor. With brain tumors, it is nearly impossible to get the whole thing out because of the delicate surrounding tissue. If you had a tumor on your colon for instance, the surgeon would take the whole thing out plus 2 or 3 centimeters of tissue all around the thing to ensure that all the bad cells are cut out, with a brain tumor, you clearly can't go scooping out extra brain tissue just to be sure. So, you get what you can see, but you can't see every little cell even with the magnification they use during the surgery. They will do an MRI in the morning to see how much is left and where. Once the pathology report comes back on the tumor, we will know what kind of tumor it is and what course of treatment will be most effective for getting rid of the last pieces. They don't know details yet, the pathology report will be back hopefully tomorrow or Wednesday. They do know from initially looking at a piece of it under the microscope that the cells are dividing, which means it is malignant, but it is not highly aggressive. They said the cells don't look very "primitive". The more aggressive and dangerous a cancer cell is the more primitive it is said to be, dividing quickly and destroying healthy tissue quickly. The less aggressive cancers divide more slowly, all the way up to the benign ones that just sit there and don't divide at all. We knew it wouldn't be benign because we were told that you just don't see tumors that size in the brain of a baby that young that aren't malignant-the question was how bad. They think from the cells they saw that it is not an extremely aggressive cancer. But we won't know for sure till we get the full report. After that, and the MRI, a determination can be made about how much chemo will eradicate the remaining cells. So please just keep up the prayers or what ever way you communicate with the divine or the Universe or whatever you call it.
I feel so much better just knowing there is no longer a big tumor in my baby's brain. He is not out of the woods yet, but he is doing ok and is stable right now. He will be in the PICU for a while. I'll be here every day this week. I don't have the number on hand, but if you want to call MCV and ask for the PICU and give them his room number you can probably get us that way or ask Lisa or Alice. Feel free to share info on his status with mutual friends. We want all the love and support and positive vibes possible. Thank you so much to everyone. You have all been so supportive and helpful and loving. I can really see and feel how much you love me and Jamie and Theo and please just know that I appreciate it so much. Everyone has been so wonderful. I know when you say "Let me know if you need anything", you really mean it. I will keep you updated.
Love,
Karla
Update #2:
5/23/05
We went home last night at about 11:30 p.m. and they called me at 1:30 a.m. to tell me that he was having some problems. I got back here at about 2:00 a.m. He had to have an emergency ventriculostomy last night around 2:00 a.m. a tube inserted into the ventricle in the brain to drain fluid. After some irregular pupil dilation, they did a CT scan and found increased volume of fluid and so needed to do that right away. This is not too abnormal--most kids would have had the thing in there after the surgery or they would have at least left an open hole for the possibility. His brain looked so good after surgery that his surgeon went ahead and closed the skull. This new thing is just a tiny hole that will close up quickly on its own after the tube is removed. So now they have an outside and an interior monitor measuring the ICP (intercranial pressure). He has good reflexes and movement today and they are now getting ready to begin feeding him breastmilk through his feeding tube (threaded through his nose to his belly). They will do the MRI this afternoon to get a better picture of what is left behind of the tumor and also how the fluid and the empty cavity (where they took the mass out) are looking.
That's it for now--I will let you know of any changes or when we get the pathology report back which might be back late today or possibly tomorrow (Wed.).
Keep up the prayers and good thoughts--
We love you --
Karla
Update #3:
5/23/05
He is doing well right now. We got the MRI and the neurosurgeon says it looks great. There is some tumor left, but we expected that. We won't know much about any further course of treatment till the pathology report comes back tomorrow. He will most likely have to have some chemotherapy but we don't know how much or when or anything. One of the drainage lines has been removed and it appears that the other one--the ventricular line put in last night, is working great and both sides of the brain appear to be beginning to "communicate" with each other. This is based on the fact that the existent drain from the ventricular line is not only draining excess fluid but blood waste from the surgical site on the right side as well (with that drain having been taken out). This is a good sign. His pupils have been responding well pretty much all day and he has had good reflexes. They just finished an hour of EEG monitoring which shows that he is having some mild seizure activity--when he has stiffening of his little arms and couple other signs, but they can't really tell us any long term information or anything. His brain has undergone major trauma, so a lot of it is due to the shifting and pressure, swelling, etc. They are going to leave the EEG going all night. We'll keep you updated.
Thank you to everyone again for all your prayers and love and support.
We are going home to sleep for a little while now.
Love,
Karla
Update #4:
5/24/05
He had a quiet night--we got a little sleep at home. Everything looked fine this morning. They ran the EEG all night since they saw the seizure activity last night. They started him on some anti-seizure meds last night and so it looked good after that. A short while ago, more activity was showing up on the EEG with a concurrent increase in his ICP numbers--ICP is the intercranial pressure which they are measuring with 2 different monitors one of which is the ventricular tube draining excess fluid that they inserted night before last. Anything below 20 on the ICP measurement is a good #. They started going up to 21, 22, 23, 24 and 25. The neurologists came back in to check. After a bit they saw that the ICP # was continuing to be high even when the EEG lines showed normal activity. It is not clear whether the apparent seizure activity is causing the elevated ICP #s. They are also not positive that what we are seeing on the EEG is actually seizure activity per se, but may be just increased electrical activity or discharge due to the amount of trauma his little brain has gone through over the past few days. They are treating it as seizure anyway to be safe and are increasing the seizure medication. The nurses are monitoring his ICP # and the neurosurgeons have been notified. Since everything is draining well, it's unclear why the numbers are elevated. They may need to do another CT scan later today, but we'll see. We were told this mornign that it may be 5-7 days before we get the pathology report back. Apparently, they have to do all sorts of stuff to the specimen to get all the information they need. So, the main thing today is to keep the seizure activity --or whatever is creating the activity on the EEG--under control and carefully monitoring the ICP. When I left the room, the numebrs were back down to 9, 10 ,11. Hopefully, they will just stay that way and continue to be low.
I'll keep you posted. Please just keep up the prayers and good thoughts, energies and meditations, etc.---Jamie just came in to say that they are taking him for a CT scan now.
Love--
Karla
Update #5:
5/23
The CT scan today did not show anything abnormal. No increased swelling or fluid, and actually showed that the brain had shifted a little bit more toward it's original shape--the right hemisphere moving back into the empty space left by the tumor and the midline moving more towards normal. This is pretty good news, cause the neurosurgeon said yesterday the only thing better he could have asked for on the MRI would have been more shifting back to the normal shape of the brain, so it shows improvement since yesterday. They now think that the increased pressure we saw earlier this morning must have been caused by the seizure activity. He is on 2 seizure medications and they are keeping him on the EEG for the rest of tonight. They will try taking him off one of the seizure meds tomorrow to see how he does. The main thing now is still controlling seizure activity, keeping the swelling going down, and keeping Theo peaceful and resting. The chief pediatric neurosurgeon said this evening that he will talk with the pathology people tomorrow to get at least a preliminary report on the pathology. The very detailed report will still take several days longer but hopefully we will know tomorrow what kind of tumor, how aggressive and maybe some idea of possible treatment plan. Everything is stable right now.
Everyone who is sending me mails, I am sorry if I don't answer each one, but please know that every time I read an encouraging word of your love and support and good thoughts, your brain tumor success stories, reports on prayer circles and on all the people we don't even know who are loving and praying for my baby right now, helps me to feel more and more hopeful, supported, and loved. The outpouring of love and support we have been receiving is really wonderful and so needed and appreciated. Each word of hope and encouragment gives me strength and takes away a little piece of the hurt in my heart. I know Theo can feel it too. Everybody who has offered to do things to help us out, thank you, I really will call you if I think of something. My dear friend Michael is taking care of Chloe and the cats during the day, and other than that, I can't think of anything that needs to be done right now.
I'll keep the mail coming as we hear news and as he progresses.
Update#6:
5/25/05
I have heard from some people that a part of one of my messages was misinterpreted--I didn't mean to imply that we don't want any visitors at all, I am just asking that anyone who is thinking of visiting call first. The doctors want Theo to have very little stimulation so he can remain as calm as possible. Plus only three visitors can be in the room at once. They don't generally count me as a visitor, but it depends on who is on duty at the front. There is a very nice family waiting area with lots of seats and a kitchen and this computer where people can be comfortable while waiting to come in the room, but if several people come at once, it can get crowded. And sometimes might just not be a really good time. So, please don't think we don't want to see you or want visitors, cause we do, I just ask that you give us a call in the room first to check.
Again, I can't thank all of you enough for al the continued love and support.
He is doign well right now, he's stable, had a quiet night. They are reading the EEG from overnight and if they look good are going to take him off the dialantin--one of the seizure medications he is on. The other one that is controlling seizures, phenobarbitol, is also helping reduce some swelling and keeping him a little sedated. They just reduced his pain medication a little bit to see how he would react. All the meds he is on are very, very small doses right now. Everybody is pretty happy with all the pictures so far (CT and MRI) and we are just waiting for the swelling to continue to go down in his brain. With all the swelling, it is hard to tell what things really look like in there and of course, we can't know any long term effects till further down the road. All his reflexes looked pretty good this mornign when the neurologists came in to see him--Dr. L says there is no loss of any movement since yesterday--it looks about the same, which is ok. He did tell me that the eyes moving around is ok, it's any big change or irregularity in pupil size that is the most concerning factor and his pupils look good right now. NO word from pathology yet, but honestly, I don't care about that right now. Right now, I'm mostly concerned about his current state, the swellign of the brain and the seizure activity. We will deal with the pathology report later.
Love you all--will keep reports coming-
XOXO
Karla
Karla
He was totally fine on Saturday morning August 20th. We woke up at 6:30a.m., he nursed, went back to bed together and snuggled till 8:30 a.m.
(Jamie was in Roanoke helping his sister Meg with straightening out their mom's estate. For those of you who don't know, Jamie's mom Marge passed away the day Theo was making his way into the world. She left on May 25th, he was born May 26th at 12:02 a.m.)
Around 10:30 a.m. on the 20th, Theo got very pale, very lethargic and sleepy. He threw up twice and I called the pediatrician. She said to go the ER if he threw up again. I noticed as I was watching him that he was making very agitated movements on his right side, but not so much with the left. He was also having a hard time keeping one eye open. After the third time vomiting, we went to the ER at St. Mary's. After I explained what I noticed with the movements, a CT scan was ordered and blood was found in the brain. They sent us by ambulance immediately to MCV--the Medical College of Virginia--a teaching hospital here in Richmond. Once there, an MRI was ordered. Jamie got in town around 5:00 p.m. after my call. We were told that the blood in the brain was actually a tumor located in his right ventricle--the space in the center of the brain that holds our cerebral spinal fluid.
First Mail
5/22/05
I know this may be a big shock to many of you on this list, but I wanted you all to know and to ask for your prayers and positive thoughts, meditations, chants, anything you will send our way. My baby Theo, 12 weeks old this past Thursday has just gone down to the OR at MCV for brain surgery to remove a large tumor from the right ventricle of his little brain. I am writing this from the PICU family waiting area. He began vomiting on Saturday morning and a CT scan showed blood in his brain. A subsequent MRI revealed the tumor. No previous signs or symptoms that anything was wrong at all. He has been a bright, active, playful little boy until Saturday morning. Jamie and I are doing as well as can be expected. I am having trouble just believing any of this is really real. I am holding it together pretty well. I have positive feelings and am holding on to all hope. Best case scenario they can get it all out and he will be home in 4 days or so. He may have to have chemo, but maybe not if they can get it all. His neurosurgeon said it looks from the pictures that most of the tumor (6x6x6 centimeters--a little larger than a golf ball) is very easy to get to but there is one section where it is being fed my arteries attached to the ventricular wall. Some good news is that the tumor has not been growing in any grey matter and so any damage to the brain tissue will be minimized. Dr. Ward says that he operated on a kid with a similar size tumor , same spot, under the age of 1 who is a normal and healthy 11 year old boy now. My parents are here, we have a great deal of good support. Please just help me by sending out love, prayer and good thoughts and energy to my boy and to us as we go through this. Surgery should be done in about 6 hours--around 7 p.m. I guess. We are on the 7th floor in room 7-608, but I will post a mail when I know something. We'd rather not have a lot of visitors right now though please. Alice and Jessica will have information pretty quickly after I know if you would like to also go through them for those of you who know them.
Keep us in your thoughts and prayers---
Love,
Karla
Update #1:
Theo's surgery went very well. He is resting now in his room. They are monitoring him closely. The surgeons feel that they got about 95-98% of the tumor. With brain tumors, it is nearly impossible to get the whole thing out because of the delicate surrounding tissue. If you had a tumor on your colon for instance, the surgeon would take the whole thing out plus 2 or 3 centimeters of tissue all around the thing to ensure that all the bad cells are cut out, with a brain tumor, you clearly can't go scooping out extra brain tissue just to be sure. So, you get what you can see, but you can't see every little cell even with the magnification they use during the surgery. They will do an MRI in the morning to see how much is left and where. Once the pathology report comes back on the tumor, we will know what kind of tumor it is and what course of treatment will be most effective for getting rid of the last pieces. They don't know details yet, the pathology report will be back hopefully tomorrow or Wednesday. They do know from initially looking at a piece of it under the microscope that the cells are dividing, which means it is malignant, but it is not highly aggressive. They said the cells don't look very "primitive". The more aggressive and dangerous a cancer cell is the more primitive it is said to be, dividing quickly and destroying healthy tissue quickly. The less aggressive cancers divide more slowly, all the way up to the benign ones that just sit there and don't divide at all. We knew it wouldn't be benign because we were told that you just don't see tumors that size in the brain of a baby that young that aren't malignant-the question was how bad. They think from the cells they saw that it is not an extremely aggressive cancer. But we won't know for sure till we get the full report. After that, and the MRI, a determination can be made about how much chemo will eradicate the remaining cells. So please just keep up the prayers or what ever way you communicate with the divine or the Universe or whatever you call it.
I feel so much better just knowing there is no longer a big tumor in my baby's brain. He is not out of the woods yet, but he is doing ok and is stable right now. He will be in the PICU for a while. I'll be here every day this week. I don't have the number on hand, but if you want to call MCV and ask for the PICU and give them his room number you can probably get us that way or ask Lisa or Alice. Feel free to share info on his status with mutual friends. We want all the love and support and positive vibes possible. Thank you so much to everyone. You have all been so supportive and helpful and loving. I can really see and feel how much you love me and Jamie and Theo and please just know that I appreciate it so much. Everyone has been so wonderful. I know when you say "Let me know if you need anything", you really mean it. I will keep you updated.
Love,
Karla
Update #2:
5/23/05
We went home last night at about 11:30 p.m. and they called me at 1:30 a.m. to tell me that he was having some problems. I got back here at about 2:00 a.m. He had to have an emergency ventriculostomy last night around 2:00 a.m. a tube inserted into the ventricle in the brain to drain fluid. After some irregular pupil dilation, they did a CT scan and found increased volume of fluid and so needed to do that right away. This is not too abnormal--most kids would have had the thing in there after the surgery or they would have at least left an open hole for the possibility. His brain looked so good after surgery that his surgeon went ahead and closed the skull. This new thing is just a tiny hole that will close up quickly on its own after the tube is removed. So now they have an outside and an interior monitor measuring the ICP (intercranial pressure). He has good reflexes and movement today and they are now getting ready to begin feeding him breastmilk through his feeding tube (threaded through his nose to his belly). They will do the MRI this afternoon to get a better picture of what is left behind of the tumor and also how the fluid and the empty cavity (where they took the mass out) are looking.
That's it for now--I will let you know of any changes or when we get the pathology report back which might be back late today or possibly tomorrow (Wed.).
Keep up the prayers and good thoughts--
We love you --
Karla
Update #3:
5/23/05
He is doing well right now. We got the MRI and the neurosurgeon says it looks great. There is some tumor left, but we expected that. We won't know much about any further course of treatment till the pathology report comes back tomorrow. He will most likely have to have some chemotherapy but we don't know how much or when or anything. One of the drainage lines has been removed and it appears that the other one--the ventricular line put in last night, is working great and both sides of the brain appear to be beginning to "communicate" with each other. This is based on the fact that the existent drain from the ventricular line is not only draining excess fluid but blood waste from the surgical site on the right side as well (with that drain having been taken out). This is a good sign. His pupils have been responding well pretty much all day and he has had good reflexes. They just finished an hour of EEG monitoring which shows that he is having some mild seizure activity--when he has stiffening of his little arms and couple other signs, but they can't really tell us any long term information or anything. His brain has undergone major trauma, so a lot of it is due to the shifting and pressure, swelling, etc. They are going to leave the EEG going all night. We'll keep you updated.
Thank you to everyone again for all your prayers and love and support.
We are going home to sleep for a little while now.
Love,
Karla
Update #4:
5/24/05
He had a quiet night--we got a little sleep at home. Everything looked fine this morning. They ran the EEG all night since they saw the seizure activity last night. They started him on some anti-seizure meds last night and so it looked good after that. A short while ago, more activity was showing up on the EEG with a concurrent increase in his ICP numbers--ICP is the intercranial pressure which they are measuring with 2 different monitors one of which is the ventricular tube draining excess fluid that they inserted night before last. Anything below 20 on the ICP measurement is a good #. They started going up to 21, 22, 23, 24 and 25. The neurologists came back in to check. After a bit they saw that the ICP # was continuing to be high even when the EEG lines showed normal activity. It is not clear whether the apparent seizure activity is causing the elevated ICP #s. They are also not positive that what we are seeing on the EEG is actually seizure activity per se, but may be just increased electrical activity or discharge due to the amount of trauma his little brain has gone through over the past few days. They are treating it as seizure anyway to be safe and are increasing the seizure medication. The nurses are monitoring his ICP # and the neurosurgeons have been notified. Since everything is draining well, it's unclear why the numbers are elevated. They may need to do another CT scan later today, but we'll see. We were told this mornign that it may be 5-7 days before we get the pathology report back. Apparently, they have to do all sorts of stuff to the specimen to get all the information they need. So, the main thing today is to keep the seizure activity --or whatever is creating the activity on the EEG--under control and carefully monitoring the ICP. When I left the room, the numebrs were back down to 9, 10 ,11. Hopefully, they will just stay that way and continue to be low.
I'll keep you posted. Please just keep up the prayers and good thoughts, energies and meditations, etc.---Jamie just came in to say that they are taking him for a CT scan now.
Love--
Karla
Update #5:
5/23
The CT scan today did not show anything abnormal. No increased swelling or fluid, and actually showed that the brain had shifted a little bit more toward it's original shape--the right hemisphere moving back into the empty space left by the tumor and the midline moving more towards normal. This is pretty good news, cause the neurosurgeon said yesterday the only thing better he could have asked for on the MRI would have been more shifting back to the normal shape of the brain, so it shows improvement since yesterday. They now think that the increased pressure we saw earlier this morning must have been caused by the seizure activity. He is on 2 seizure medications and they are keeping him on the EEG for the rest of tonight. They will try taking him off one of the seizure meds tomorrow to see how he does. The main thing now is still controlling seizure activity, keeping the swelling going down, and keeping Theo peaceful and resting. The chief pediatric neurosurgeon said this evening that he will talk with the pathology people tomorrow to get at least a preliminary report on the pathology. The very detailed report will still take several days longer but hopefully we will know tomorrow what kind of tumor, how aggressive and maybe some idea of possible treatment plan. Everything is stable right now.
Everyone who is sending me mails, I am sorry if I don't answer each one, but please know that every time I read an encouraging word of your love and support and good thoughts, your brain tumor success stories, reports on prayer circles and on all the people we don't even know who are loving and praying for my baby right now, helps me to feel more and more hopeful, supported, and loved. The outpouring of love and support we have been receiving is really wonderful and so needed and appreciated. Each word of hope and encouragment gives me strength and takes away a little piece of the hurt in my heart. I know Theo can feel it too. Everybody who has offered to do things to help us out, thank you, I really will call you if I think of something. My dear friend Michael is taking care of Chloe and the cats during the day, and other than that, I can't think of anything that needs to be done right now.
I'll keep the mail coming as we hear news and as he progresses.
Update#6:
5/25/05
I have heard from some people that a part of one of my messages was misinterpreted--I didn't mean to imply that we don't want any visitors at all, I am just asking that anyone who is thinking of visiting call first. The doctors want Theo to have very little stimulation so he can remain as calm as possible. Plus only three visitors can be in the room at once. They don't generally count me as a visitor, but it depends on who is on duty at the front. There is a very nice family waiting area with lots of seats and a kitchen and this computer where people can be comfortable while waiting to come in the room, but if several people come at once, it can get crowded. And sometimes might just not be a really good time. So, please don't think we don't want to see you or want visitors, cause we do, I just ask that you give us a call in the room first to check.
Again, I can't thank all of you enough for al the continued love and support.
He is doign well right now, he's stable, had a quiet night. They are reading the EEG from overnight and if they look good are going to take him off the dialantin--one of the seizure medications he is on. The other one that is controlling seizures, phenobarbitol, is also helping reduce some swelling and keeping him a little sedated. They just reduced his pain medication a little bit to see how he would react. All the meds he is on are very, very small doses right now. Everybody is pretty happy with all the pictures so far (CT and MRI) and we are just waiting for the swelling to continue to go down in his brain. With all the swelling, it is hard to tell what things really look like in there and of course, we can't know any long term effects till further down the road. All his reflexes looked pretty good this mornign when the neurologists came in to see him--Dr. L says there is no loss of any movement since yesterday--it looks about the same, which is ok. He did tell me that the eyes moving around is ok, it's any big change or irregularity in pupil size that is the most concerning factor and his pupils look good right now. NO word from pathology yet, but honestly, I don't care about that right now. Right now, I'm mostly concerned about his current state, the swellign of the brain and the seizure activity. We will deal with the pathology report later.
Love you all--will keep reports coming-
XOXO
Karla
Subscribe to:
Posts (Atom)
