Wow! I can not believe it has been over a month since I have blogged on here! I guess when you have a CRAZY/SUPER BUSY Life, time flies without even realizing it. Sorry that I have not updated for awhile, I have wanted to, but with Payten being in and out of the hospital, kids starting a new school year and my computer being out of commission, etc. I just have not been able to. But thankfully things are seeming to calm down and my computer is back up and running, Yay! Anyways, back to the topic at hand, Payten! What to say about Payten....Allot has happened since the last time I blogged!
Last time I blogged Payten had just gotten out of the hospital after having her Phenylalanine test done. Which by the way came back normal, which means that the diagnosis GTP Cyclohydrolase Deficiency is confirmed, there is nothing else to add to it! The plan after the test was done, was to bring Payten back to the hospital for medication trials, which indeed did happen. Payten was brought back on August 16, 2010 and was discharged on August 18, 2010. We were on the understanding that we would be there for 5 days, but because Payten responded super well to the medication, we were able to go home sooner than later! That is always a good thing!
Payten was placed on Levodopa, Carbidopa and 5 HTP to help with her Neuro-Transmitter Disease (GTP Cyclohydrolase Deficiency). The reason she had to be hospitalized was to watch her vital signs and make sure it did not send her into Cardiac Arrest, etc. Luckily she did not have any problems with the medication! But that did not mean that there was no Drama! While there, Payten had issues with her vent, issues that were not new, but issues the hospital did not like and so they wanted to up size her trach and everyone was on the same page except for one of her Doctors and so we ended up leaving the trach alone and trying something else, which has seemed to help! I am happy that we found a solution, we could have done without all the drama, but all in all we came to a solution and that is all that matters.
Also while in the hospital, we had them do an ABR test (Auditory Brain Stem Response Test.) Just to give us an idea about Payten's hearing and if it is registering, etc. It came back that the Nerves and everything in the Ears are functioning and working correctly, but that there is a dramatic slowing when it gets to the brain. The Neurologist said that it is due to her Brain stem not developing/growing and he is hoping that the new medication she is on will help with this and in 6 months we will do the test again to see if there is any improvement. If there is then we know the medication has help, if there is not, then we will open that can of worms, but until then we will hope for the best. I am going to speak with her ENT Doctor and hopefully one of his Audiologist to find out what this means on the standpoint of therapies, etc. and how it affects the hearing, does she hear the sound, but it is not being processed, what???? Lot's of questions that need to be answered, so when I get those answers, I will let you all know!
When we got home from the hospital, we found out that Payten had a Sinus Infection that showed up on a CAT Scan that had been done in the hospital. So our Doctor put Payten on a 20 day run of Augmentum in hopes that it would clear. She seemed to be doing well, until a couple of weeks ago. She started having Mucus Plugs Galore. I was having to change her trach 2 to 3 times a day, not typical or normal, so that was red flag number one! Then her secretions became out of control, we were suctioning her every five minutes and still having plugs! Again something that is not typical or normal, red flag number 2. Then she became very lethargic, pale, her seizures increased and she was extremely irritable, she was tired, but was not sleeping well, and just plain miserable, red flag number 3. We went back and forth that whole weekend trying to decide if we should take her into the hospital or not. We decided to wait and see the PCP Doctor on Tuesday due to it being Labor Day Weekend. When we saw our PCP it was determined that she still had a Sinus Infection and needed to go on another 15 days of medication, Omniceft.
About an hour after we got home from seeing the Doctor, Payten went into a non-controllable shaking episode. Her whole body was moving uncontrollably and she was very agitated and combative. This went on for 3 hours, I was going to call 911 and to be quite frank, I should have called 911, but I tend to try to solve things on my own. So instead I put a call into the Neurologist who called me back a few hours later and said to go down on the Dosage of Medication. Which we did and it seemed to help a little, but not enough. Two days later he called me again to see how Payten was doing, which she was not well. She was crying non-stop, still having tremor like motions, and her secretions were still out of control. He informed me that he believes this was all due to Payten being over dosed on her new medication. He said that he had a feeling to go down and check her medication dosage in the Pharmacy. He found that the Pharmacy had made a HUGE mistake in the Concentration of the Medication and therefore was overdosing Payten by quite a bit and so she was having big side affects of the overdose. He said that the crying was probably from Hallucinations and that indeed the uncontrolled movements were Tremors. He said the secretions could have been due to the overdosage as well, but he was not positive, so to keep giving her the Omniceft. In other words, all of this could have been avoided if someone would have paid attention to what they were doing and did their job right. But instead a little girl had to suffer due to someone else's mistake. It truly makes me sick inside to think about it and what could have happened if we did not catch it in time. Thankfully my doctor listened to his intuition and checked her dosage at the Pharmacy.
Since stopping the Medication things have gotten allot better. Her demeanor has changed dramatically. She is happy again, she is sleeping again, and she is not combative any more! The tremor movements are still there, not as bad as they were, but she is still having them. Everyday seems to get less and less, so I hope in a few days it will be no more. Her secretions are still out of control, which makes me think that is more Sinus related, then Medication related, but who knows and the plugs are no more! Yay, I am not having to change the trach everyday! So I do not know what was up with that, but happy that they are gone! All in All Payten is getting back to her normal self. She is not fully there, but over time she will get there. I still think she has a Sinus Infection that is not clearing and have questions as to why that is. But we see her Pulmonologist next week and then her ENT the following and we should get some answers from them, let's hope we can figure this out, so that she does not have to suffer with this Sinus Infection any longer! We also found that Payten is growing Pseudomonas in her Poop from a stool culture the PCP had us get and she is on medication for that as well. I hope everything clears and we can get back to normal soon! Again I apologize that it has been so long, but hopefully now that life is calming down and I am seeming to get a grip on things, I will have more time to just sit and blog! Wish me luck with that! Have a good day, I know Payten is and that is always a good day for me! Goodbye, God Bless and take care! :)
Last time I blogged Payten had just gotten out of the hospital after having her Phenylalanine test done. Which by the way came back normal, which means that the diagnosis GTP Cyclohydrolase Deficiency is confirmed, there is nothing else to add to it! The plan after the test was done, was to bring Payten back to the hospital for medication trials, which indeed did happen. Payten was brought back on August 16, 2010 and was discharged on August 18, 2010. We were on the understanding that we would be there for 5 days, but because Payten responded super well to the medication, we were able to go home sooner than later! That is always a good thing!
Payten was placed on Levodopa, Carbidopa and 5 HTP to help with her Neuro-Transmitter Disease (GTP Cyclohydrolase Deficiency). The reason she had to be hospitalized was to watch her vital signs and make sure it did not send her into Cardiac Arrest, etc. Luckily she did not have any problems with the medication! But that did not mean that there was no Drama! While there, Payten had issues with her vent, issues that were not new, but issues the hospital did not like and so they wanted to up size her trach and everyone was on the same page except for one of her Doctors and so we ended up leaving the trach alone and trying something else, which has seemed to help! I am happy that we found a solution, we could have done without all the drama, but all in all we came to a solution and that is all that matters.
Also while in the hospital, we had them do an ABR test (Auditory Brain Stem Response Test.) Just to give us an idea about Payten's hearing and if it is registering, etc. It came back that the Nerves and everything in the Ears are functioning and working correctly, but that there is a dramatic slowing when it gets to the brain. The Neurologist said that it is due to her Brain stem not developing/growing and he is hoping that the new medication she is on will help with this and in 6 months we will do the test again to see if there is any improvement. If there is then we know the medication has help, if there is not, then we will open that can of worms, but until then we will hope for the best. I am going to speak with her ENT Doctor and hopefully one of his Audiologist to find out what this means on the standpoint of therapies, etc. and how it affects the hearing, does she hear the sound, but it is not being processed, what???? Lot's of questions that need to be answered, so when I get those answers, I will let you all know!
When we got home from the hospital, we found out that Payten had a Sinus Infection that showed up on a CAT Scan that had been done in the hospital. So our Doctor put Payten on a 20 day run of Augmentum in hopes that it would clear. She seemed to be doing well, until a couple of weeks ago. She started having Mucus Plugs Galore. I was having to change her trach 2 to 3 times a day, not typical or normal, so that was red flag number one! Then her secretions became out of control, we were suctioning her every five minutes and still having plugs! Again something that is not typical or normal, red flag number 2. Then she became very lethargic, pale, her seizures increased and she was extremely irritable, she was tired, but was not sleeping well, and just plain miserable, red flag number 3. We went back and forth that whole weekend trying to decide if we should take her into the hospital or not. We decided to wait and see the PCP Doctor on Tuesday due to it being Labor Day Weekend. When we saw our PCP it was determined that she still had a Sinus Infection and needed to go on another 15 days of medication, Omniceft.
About an hour after we got home from seeing the Doctor, Payten went into a non-controllable shaking episode. Her whole body was moving uncontrollably and she was very agitated and combative. This went on for 3 hours, I was going to call 911 and to be quite frank, I should have called 911, but I tend to try to solve things on my own. So instead I put a call into the Neurologist who called me back a few hours later and said to go down on the Dosage of Medication. Which we did and it seemed to help a little, but not enough. Two days later he called me again to see how Payten was doing, which she was not well. She was crying non-stop, still having tremor like motions, and her secretions were still out of control. He informed me that he believes this was all due to Payten being over dosed on her new medication. He said that he had a feeling to go down and check her medication dosage in the Pharmacy. He found that the Pharmacy had made a HUGE mistake in the Concentration of the Medication and therefore was overdosing Payten by quite a bit and so she was having big side affects of the overdose. He said that the crying was probably from Hallucinations and that indeed the uncontrolled movements were Tremors. He said the secretions could have been due to the overdosage as well, but he was not positive, so to keep giving her the Omniceft. In other words, all of this could have been avoided if someone would have paid attention to what they were doing and did their job right. But instead a little girl had to suffer due to someone else's mistake. It truly makes me sick inside to think about it and what could have happened if we did not catch it in time. Thankfully my doctor listened to his intuition and checked her dosage at the Pharmacy.
Since stopping the Medication things have gotten allot better. Her demeanor has changed dramatically. She is happy again, she is sleeping again, and she is not combative any more! The tremor movements are still there, not as bad as they were, but she is still having them. Everyday seems to get less and less, so I hope in a few days it will be no more. Her secretions are still out of control, which makes me think that is more Sinus related, then Medication related, but who knows and the plugs are no more! Yay, I am not having to change the trach everyday! So I do not know what was up with that, but happy that they are gone! All in All Payten is getting back to her normal self. She is not fully there, but over time she will get there. I still think she has a Sinus Infection that is not clearing and have questions as to why that is. But we see her Pulmonologist next week and then her ENT the following and we should get some answers from them, let's hope we can figure this out, so that she does not have to suffer with this Sinus Infection any longer! We also found that Payten is growing Pseudomonas in her Poop from a stool culture the PCP had us get and she is on medication for that as well. I hope everything clears and we can get back to normal soon! Again I apologize that it has been so long, but hopefully now that life is calming down and I am seeming to get a grip on things, I will have more time to just sit and blog! Wish me luck with that! Have a good day, I know Payten is and that is always a good day for me! Goodbye, God Bless and take care! :)
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