Taylor will be in the ICU at least through the weekend, but they said he's been steadily improving. He's been on morphine a good bit of the time to keep him calm, so he's only been awake a handful of moments over the last 2 days. You can be sure all of us have been constantly holding his hands, rubbing his legs and speaking words of encouragement into his ears along the way.
They felt good enough about his condition that they're inserting a feeding tube today at 1 so he can begin getting formula again. (It's been 3 days since he's eaten food! Ugh) Tough little fella.
The doctor is set to review the latest chest x-ray with us in a few hours...hopefully it mirrors what the stethascopes have been telling us. The other way they determine how well he's doing is how long he can stay off the oxygen before his stats drop. When we entered the ICU, he couldn't be off the mask 2 seconds without it dropping. Yesterday, he could go about 3-5 minutes. The goal for him to check out of the hospital will be 24 hours off oxygen without his stats dropping. (Stats meaning oxygen saturation, heart rate, # of breaths/minute...etc)
Lane and I understand from many different sources there are huge numbers of prayer chains all across the country in effect for Taylor. We're overwhelmed with the outpour of love, affection and concern all of you have expressed. With the improvement Taylor has seen in the past 48 hours, it seems some of you have pretty solid ties with The Big Man upstairs! We are so fortunate to have friends and family like you. We count our blessings everyday. Thank you thank you thank you.
Love,
The Carter and Taylor families
Friday, December 31, 2010
Wednesday, December 29, 2010
Scary Times Indeed...Taylor Enters Intensive Care Unit
At 1:30 this afternoon, after another horrible night of no sleep, constant monitoring and unsuccessful respiratory treatments, the head doctor decided Tay needed to enter the Intensive Care Unit where he could receive the utmost care. Once he "turns the corner," they should be able to downgrade him back to a normal hospital room...a room where, best case scenario, we'll be in another 7 days.
The reason for the move to the ICU? Taylor is fighting two illnesses, pneumonia and the RSV virus <click here for more info on RSV>. His immune system is pretty low, so he's having a hard time fighting off these viruses. RSV is similar to the common cold...the only treatment is to give a lot oxygen, continually suction the mucus in the nose and throat...and give the body time to build up antibodies to fight it off. Typical children don't require hospitlization. They will fight it off within 7 - 10 days. Taylor has been receiving oxygen through a nostril ventilators 24 hours a day since he's been here. He wasn't getting enough oxygen and his lungs were having to work too hard to suck in enough air so ICU was the next logical step.
He now has a more permanent IV, something called a PICC. It's an IV line that starts in his arm, enters the vein and goes all the way up, just above his heart. Through this, they can administer all of his medications as well as nourishment (b/c he can no longer eat/drink on his own). The best part...they can pull blood samples from this as well, so he doesn't have to be a pin cushion two or three times a day. He also has an oxygen mask taped to his face 24hrs a day.
The head doctor used the word "precarious" to describe Taylor's condition right now. Quite a juxtaposition of events....finally after battling his seizures for 9 months, we get them under control, only to have him fighting for his life from pneumonia. Not ideal, but we have faith in Taylor's ability to fight through this.
We're in good hands. Taylor has proved to be a strong little tyke. He's just pretty amazing.
Mom or Dad or both are always by his side 24 hrs a day...along with his pals, Ellie the Elephant and Hobbes.
Thank you again for your prayers, concerns and well wishes for Taylor. God definitely has a plan for him.
The reason for the move to the ICU? Taylor is fighting two illnesses, pneumonia and the RSV virus <click here for more info on RSV>. His immune system is pretty low, so he's having a hard time fighting off these viruses. RSV is similar to the common cold...the only treatment is to give a lot oxygen, continually suction the mucus in the nose and throat...and give the body time to build up antibodies to fight it off. Typical children don't require hospitlization. They will fight it off within 7 - 10 days. Taylor has been receiving oxygen through a nostril ventilators 24 hours a day since he's been here. He wasn't getting enough oxygen and his lungs were having to work too hard to suck in enough air so ICU was the next logical step.
He now has a more permanent IV, something called a PICC. It's an IV line that starts in his arm, enters the vein and goes all the way up, just above his heart. Through this, they can administer all of his medications as well as nourishment (b/c he can no longer eat/drink on his own). The best part...they can pull blood samples from this as well, so he doesn't have to be a pin cushion two or three times a day. He also has an oxygen mask taped to his face 24hrs a day.
The head doctor used the word "precarious" to describe Taylor's condition right now. Quite a juxtaposition of events....finally after battling his seizures for 9 months, we get them under control, only to have him fighting for his life from pneumonia. Not ideal, but we have faith in Taylor's ability to fight through this.
We're in good hands. Taylor has proved to be a strong little tyke. He's just pretty amazing.
Thank you again for your prayers, concerns and well wishes for Taylor. God definitely has a plan for him.
Tuesday, December 28, 2010
Hospital Food Isn't That Bad...
Unless you've eaten it 20 of the last 40 days!
We're still hunkered down here in the Children's Mercy of Kansas City. Taylor is still battling the pneumonia. We're four days into the antibiotics and haven't seen as much improvement as we were hoping. The good news is his condition hasn't worsened. He's getting a little more sleep now (and so are mom & dad)...a welcome break after the previous 5 restless nights.
The doctors are hoping that his immune system just needs a little more time to get up to speed, due to the seizure drugs and their suppressing effects. Because Taylor is such a unique, complicated case, it seems every doctor in the hospital has taken on his case.
It looks like we'll be here at least a few more days. We'll do our best to keep the blog updated.
Taylor appreciates your continued concern. :)
We're still hunkered down here in the Children's Mercy of Kansas City. Taylor is still battling the pneumonia. We're four days into the antibiotics and haven't seen as much improvement as we were hoping. The good news is his condition hasn't worsened. He's getting a little more sleep now (and so are mom & dad)...a welcome break after the previous 5 restless nights.
The doctors are hoping that his immune system just needs a little more time to get up to speed, due to the seizure drugs and their suppressing effects. Because Taylor is such a unique, complicated case, it seems every doctor in the hospital has taken on his case.
It looks like we'll be here at least a few more days. We'll do our best to keep the blog updated.
Taylor appreciates your continued concern. :)
Saturday, December 25, 2010
UP....down......UP....down....UP...
UP...down...UP...down...UP...
Taylor's health is a constant roller coaster this week.
Most importantly, he is still seizure free. Lane frets anytime I write or speak that phrase. She worries that doing anything more than thinking those words will jinx his record. When Tay started back on the powerful ACTH steroid shots, the doctors warned us of two things...the first is that he would be incredibly irritable and uncomfortable most of the time. They were right. Since Wed Dec 15th, there has barely been 10 mins in his wakeful hours that he hasn't been moaning, groaning and swaying his head in general discomfort. It has been one of the saddest things in my life to witness...just having to stand by and constantly whisper encouraging words into an inconsolable child. The docs make a strong argument when they say, "If two weeks of extreme discomfort saves Taylor's life, then so be it."
The second warning was that ACTH actually lowers the immune system, making it easier for him to pick up colds & viruses...sicknesses that could progress into the more deadly pneumonia. Well, Taylor's temperature started to spike on Thursday evening and he developed a croopy cough that wouldn't subside. A trip to the ER on Christmas Eve confirmed our worst fear...pneumonia in 3 different areas of his lungs. I won't go into the details, but I can say this...of all 418 days of Taylor's life, I've never seen him look this ill.
Now the good news. Actually, the great news. 12 hours of pumping antibiotics, IV fluids, Tylenol, Ibuprofen and a slew of other holistic measures into Taylor has him turning the corner today. At 3am, Taylor looked like a new kid. He was suddenly very content, lucid and wasn't irritated at all. In fact, he almost looked like he was waking up from his 9 month stupor for the first time...taking in and understanding his surroundings. It was pretty amazing. We interacted together for 3 hours and had the best time. The docs think he will remain in the hospital for another 3 or 4 days, but that he should continue to heal and recover just fine. I believe it's a sign of even better things to come.
Below is a pic of Taylor snoozing in Santa's lap this morning.
Merry Christmas everyone.
Taylor loves you.
Taylor's health is a constant roller coaster this week.
Most importantly, he is still seizure free. Lane frets anytime I write or speak that phrase. She worries that doing anything more than thinking those words will jinx his record. When Tay started back on the powerful ACTH steroid shots, the doctors warned us of two things...the first is that he would be incredibly irritable and uncomfortable most of the time. They were right. Since Wed Dec 15th, there has barely been 10 mins in his wakeful hours that he hasn't been moaning, groaning and swaying his head in general discomfort. It has been one of the saddest things in my life to witness...just having to stand by and constantly whisper encouraging words into an inconsolable child. The docs make a strong argument when they say, "If two weeks of extreme discomfort saves Taylor's life, then so be it."
The second warning was that ACTH actually lowers the immune system, making it easier for him to pick up colds & viruses...sicknesses that could progress into the more deadly pneumonia. Well, Taylor's temperature started to spike on Thursday evening and he developed a croopy cough that wouldn't subside. A trip to the ER on Christmas Eve confirmed our worst fear...pneumonia in 3 different areas of his lungs. I won't go into the details, but I can say this...of all 418 days of Taylor's life, I've never seen him look this ill.
Now the good news. Actually, the great news. 12 hours of pumping antibiotics, IV fluids, Tylenol, Ibuprofen and a slew of other holistic measures into Taylor has him turning the corner today. At 3am, Taylor looked like a new kid. He was suddenly very content, lucid and wasn't irritated at all. In fact, he almost looked like he was waking up from his 9 month stupor for the first time...taking in and understanding his surroundings. It was pretty amazing. We interacted together for 3 hours and had the best time. The docs think he will remain in the hospital for another 3 or 4 days, but that he should continue to heal and recover just fine. I believe it's a sign of even better things to come.
Below is a pic of Taylor snoozing in Santa's lap this morning.
Taylor loves you.
Tuesday, December 21, 2010
Taylor has his 1st Seizure-Free Day in 9 Months !
We're walking on egg shells and we know it may not last, but Taylor had his first day in almost 9 months without a seizure!
Memphis Hospital discharged him this morning for the holidays with a pretty positive report. Not perfect, but positive. The high dose drugs he's taking are really doing a number on him, but he's fighting through it with extraordinary strength.
On our drive back to Atlanta after New Years, we'll stop back in Memphis for a check-up appt.
Please keep praying...
Memphis Hospital discharged him this morning for the holidays with a pretty positive report. Not perfect, but positive. The high dose drugs he's taking are really doing a number on him, but he's fighting through it with extraordinary strength.
On our drive back to Atlanta after New Years, we'll stop back in Memphis for a check-up appt.
Please keep praying...
Thursday, December 16, 2010
Memphis Docs Try Different Approach
This is a difficult post to author.
Taylor is 13 months old but he's operating on the level of a 2 month-old. He has been experiencing these seizures for almost 9 months now. When we checked into the hospital in Memphis on Monday, the doctors...who are some of the best in the world in dealing with Infantile Spasms... were very honest with us. They said, typically, children that have experienced uncontrolled Infantile Spasms for this length of time are extremely complicated to treat effectively. They told us to expect an uphill battle, but they would be leading the charge very aggressively.
Just to give a brief recap, since the beginning of August when Taylor was correctly diagnosed, he has taken 3 major medications:
1) ACTH - steroid shots given by mom&dad twice a day. These knocked out most of his seizures, but he was still having 4 or 5 a day. He was also very irritable, gained a ton of weight and was generally a floppy, nonactive mess. After 7 weeks, we took him off of that and started him on...
2) Vigabatrin- No change in the # of seizures, but suddenly he was active again, rolling around and fairly happy with no appetite for solid food. After 6 weeks on this, the Atlanta docs decided to ween him off of this and start...
3) Topamax- Shortly after starting this low dose drug, Taylor started having increased seizures...15 to 20 a day. Finally, our appt with Memphis docs arrived...
Each of those medicines, we started out at a low dosage and worked our way up over several weeks.
The Memphis docs have a very different approach to treating patients. An approach that really makes sense. They hook up 27 electrodes to Taylor's head to analyze his brain patterns while they administer high-dose medicines. You see, even when Taylor isn't having a seizure episode, his brainwaves are abnormal from this epilepsy. The overall goal is to completely suppress the seizures and normalize his brain activity so he can begin learning again. In Atlanta, we would only do an EEG every few months to check to see if the slow drug treatments had been effective. In Memphis, the doctors have proven that fast, high dosage treatments usually bring positive results quicker than the slow method. Their theory is, the faster you can suppress the seizures and normalize the brain wave activity, the better chance the child will have at pulling through this.
They did give us some positive news Monday night after the initial tests came in. They were pleasantly surprised with Taylor's MRI and his EEG readings. For a child that's been experiencing these seizures this long, they usually see atrophy in the brain scan and a very irregular brainwave pattern, especially during sleep. Taylor's MRI was nearly perfect and his brainwaves were only slightly irregular...even during his sleep. That gave them confidence that Taylor may have a better chance than was originally expected.
As we were already taking a medium dose of drug #3 with a mixture of a little of drug #2, the Memphis docs ratcheted up both doses to high levels. As we expected, it brought his seizure level down to about 5 a day again, but his brainwave pattern was still a little irregular. The docs decided to stop #3 completely and reintroduce Drug #1 in a high dose right off the bat....mixing with drug #2. We are in day #2 of this course of treatment. They said it would take 3 solid days of this to get a true measurement of where we stand.
I apologize for the rambling update, but thought it necessary to pass along the info.
I returned to Atlanta last night to get a week's worth of work in. Today, Dick Taylor joined Lane and Taylor at the hospital in Memphis. When they're done on Saturday, they will all drive back to Kansas City. I'll meet them there to spend Christmas & New Years.
Taylor needs your prayers now more than ever. We really appreciate your Love and support.
Happy Holidays. Here's a pic of Tay right out of his bath, just before checking into the hospital:
Taylor is 13 months old but he's operating on the level of a 2 month-old. He has been experiencing these seizures for almost 9 months now. When we checked into the hospital in Memphis on Monday, the doctors...who are some of the best in the world in dealing with Infantile Spasms... were very honest with us. They said, typically, children that have experienced uncontrolled Infantile Spasms for this length of time are extremely complicated to treat effectively. They told us to expect an uphill battle, but they would be leading the charge very aggressively.
Just to give a brief recap, since the beginning of August when Taylor was correctly diagnosed, he has taken 3 major medications:
1) ACTH - steroid shots given by mom&dad twice a day. These knocked out most of his seizures, but he was still having 4 or 5 a day. He was also very irritable, gained a ton of weight and was generally a floppy, nonactive mess. After 7 weeks, we took him off of that and started him on...
2) Vigabatrin- No change in the # of seizures, but suddenly he was active again, rolling around and fairly happy with no appetite for solid food. After 6 weeks on this, the Atlanta docs decided to ween him off of this and start...
3) Topamax- Shortly after starting this low dose drug, Taylor started having increased seizures...15 to 20 a day. Finally, our appt with Memphis docs arrived...
Each of those medicines, we started out at a low dosage and worked our way up over several weeks.
The Memphis docs have a very different approach to treating patients. An approach that really makes sense. They hook up 27 electrodes to Taylor's head to analyze his brain patterns while they administer high-dose medicines. You see, even when Taylor isn't having a seizure episode, his brainwaves are abnormal from this epilepsy. The overall goal is to completely suppress the seizures and normalize his brain activity so he can begin learning again. In Atlanta, we would only do an EEG every few months to check to see if the slow drug treatments had been effective. In Memphis, the doctors have proven that fast, high dosage treatments usually bring positive results quicker than the slow method. Their theory is, the faster you can suppress the seizures and normalize the brain wave activity, the better chance the child will have at pulling through this.
They did give us some positive news Monday night after the initial tests came in. They were pleasantly surprised with Taylor's MRI and his EEG readings. For a child that's been experiencing these seizures this long, they usually see atrophy in the brain scan and a very irregular brainwave pattern, especially during sleep. Taylor's MRI was nearly perfect and his brainwaves were only slightly irregular...even during his sleep. That gave them confidence that Taylor may have a better chance than was originally expected.
As we were already taking a medium dose of drug #3 with a mixture of a little of drug #2, the Memphis docs ratcheted up both doses to high levels. As we expected, it brought his seizure level down to about 5 a day again, but his brainwave pattern was still a little irregular. The docs decided to stop #3 completely and reintroduce Drug #1 in a high dose right off the bat....mixing with drug #2. We are in day #2 of this course of treatment. They said it would take 3 solid days of this to get a true measurement of where we stand.
I apologize for the rambling update, but thought it necessary to pass along the info.
I returned to Atlanta last night to get a week's worth of work in. Today, Dick Taylor joined Lane and Taylor at the hospital in Memphis. When they're done on Saturday, they will all drive back to Kansas City. I'll meet them there to spend Christmas & New Years.
Taylor needs your prayers now more than ever. We really appreciate your Love and support.
Happy Holidays. Here's a pic of Tay right out of his bath, just before checking into the hospital:
Wednesday, December 8, 2010
Taylor Tours the Hospital Circuit...
Taylor's seizures had increased from about 6 a day to about 15 a day over the Thanksgiving week so the doctors had us check back into Children's Hospital here in Atlanta for a few tests. Taylor had a spinal tap...not fun :( We'll receive the results back from that in 2 weeks. We also did a 48 hour video monitored EEG and sleep test. (They should call it a "No Sleep Test" b/c the lights have to stay on all night and it's not comfortable having 28 electrodes glued to your head <see pic below>.....miserable!)
Friday, we meet with our Atlanta neurologist to go over his opinion on that visit.
Sunday we head to Memphis to check into Le Bonheur Hospital for 5 days. There, we'll meet with some of the best doctors in the world that specialize in Infantile Spasms. It's a way for us to get a 2nd set of eyes on Taylor. While there, he'll get another very detailed MRI and a 5 day EEG while administering various drug treatments.
Please keep up your prayers for Taylor. We really appreciate your continued Love and positive thoughts.
Below is a picture of Taylor getting some Great Grandmother Love...
Merry Christmas to everyone.
:)
Sunday we head to Memphis to check into Le Bonheur Hospital for 5 days. There, we'll meet with some of the best doctors in the world that specialize in Infantile Spasms. It's a way for us to get a 2nd set of eyes on Taylor. While there, he'll get another very detailed MRI and a 5 day EEG while administering various drug treatments.
Please keep up your prayers for Taylor. We really appreciate your continued Love and positive thoughts.
Below is a picture of Taylor getting some Great Grandmother Love...
:)
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