Before I attempt to get all of you updated on our happenings since about 4:30 yesterday afternoon, I think it only right to give you fair warning this post may be long!!! So, may want to grab a coffee, pack a lunch, and go to the bathroom before you proceed.
I have said before that if there is bad luck to be found, Keenan will run right into it! Now he always ends up just fine, but getting there is met with more obstacles than I could count, or even want to at this point. Thank goodness God is always watching over my sweet, little trooper, for without the assurance that God is in control, even when life is out of control, I would have no place to turn back to when I just don't understand and need reassurance. Now is another one of those times.
Kee has been on a seizure medication for 12 days and I have been watching him closely for side effects. This medication is one that can have a very serious side effect known as Stevens Johnson syndrome. Each day I have journaled the dose given and any side effects, which were none. That is, until yesterday. About 4:30 I noticed a couple of red spots on his ear and a little area of redness on his cheek. Talked to our neurologist and they were not alarmed at this point, so I tried not to be as well. Got in to St. Louis and as the evening progressed he felt feverish. The rash was also getting a little worse, but not alarming. I did talk to a nurse before bed, to try to calm the horrible pit in my stomach and the gut feeling I had about the medication. Needless to say, I did not give him his night dose (or his morning dose). No way, no how!!!!
I did manage to get some sleep, but never fell into a restful sleep. Moms will know what I mean. Oh, on top of my worries about this rash, Keenan's anxiety is high and he is not wanting the surgery at all. Who can blame him, right??? If I took my eyes off the "big picture" for even a moment, I would have pulled the plug and headed back home.
This morning when we awoke, the rash was worse. More red and on both cheeks. Also on his arms and some on his legs. However, the most concentrated area was his face. We called the hospital to make them aware of what was happening and they told us to come on in to the hospital a little early so they could evaluate and make a decision how to proceed. Keenan is quite upset and scared by now, wanting us to call off the surgery. I am hoping at this point they proceed because the odds of getting him back here without going completely nuts were not in our favor.
They evaluated and determined the rash was probably viral (but I was still not convinced). So, they decided to move forward. He did have a low-grade fever, but they felt it was related to the rash. Kee was pretty upset, so they gave him some medicine to help him relax and the medical team decided Brad could go in to the OR and stay until Kee was asleep. That made a big difference to him. Yea! We needed a small victory at this point.
After surgery they brought us back to recovery and let us know Keenan had aspirated during surgery. I guess it can happen, especially when the patient was already anxious and upset. So, now, on top of the rash, that is still concerning to me, we had the worry of fluid in his lungs with the possibility of pneumonia. No, I am not kidding!!!!! Did I mention it was not even noon yet?
So, as is so often the case, you do a lot of "hurry up and wait" at the hospital. The nurses and staff kept a close eye on his breathing much of the afternoon. He had to have one breathing treatment and has had oxygen close by his mouth off and on since surgery. The breathng improved, but one of the doctors still wanted to do a chest X-ray to have a better idea what was happenng. That sounded good to me...a definate answer about something...count me in!
The X-ray showed some grayness in a lung, so he would be given antibiotics for that issue. As far as the rash, I guess it was secondary to the lungs. We have spent the entire day in a little room in surgery recovery. At the time of my tying this portion, it was 6:55 and they were still trying to decide where to put him. It has been a long day in a very tiny room.
So, about 7:30 we finally made it onto a floor! A little to our disappointment, we ended up in a room with another patient. Oh well, there are worse things. Then we spent the next hour and a half going back through the last two days and current medications, with everyone but the janitorial staff.
FINALLY, at about 9:00 or so, two of the pediatric residents came in to do their assessment and get some history of the day from us. They listened to him breathe and said he sounded better than the X-ray they did, which can happen. So, they turned their focus a little more toward the rash. After assessing him, as best they could at this point in the day with no sleep, these two doctors did not think we were dealing with a worst case scenario of Stevens Johnson Syndrome. Now, whether the rash was viral or a reaction to the medication he was taking, they could not be certain. Her gut was a viral rash, but she wanted to start gathering some data that might be helpful, so she did a strep test and a viral test. This was a nose swab that can test for some of the most common viruses. At least I felt like something was being done to find answers, or at least eliminate some unknowns.
Due to the swab they did for staph, at 10:00 we had to move rooms. They wanted us to be in a private room just in case that test came back positive. Guess that was God "throwing us a bone" after a day that seemed to keep going and going and going...
At the time I finished this, Keenan was sleeping very peacefully. Brad was looking at pictures of Hondas, and I am doing what seems to bring me some comfort...writing. maybe a little bit of normal to end this bad day.
I was reading some scripture this afternoon as I waited and watched Kee, and I was reminded in Psalms that our God never sleeps. He doesn't even need a power nap. As I get ready to try to take in more than a power nap, there is comfort knowing that The Great Physician is watching over this WHOLE situation, the many facits of it, and has it under control. He will not turn His face from Keenan even for a minute tonight. Thank you Lord, for being faithful, even in those moments I doubt. Thank you for watching over him and keeping him safe.
I think tomorrow will look brighter. One of the residents told me this evening that the plan is to get us out of here tomorrow. She didn't really see an issue with that happening.
So, please pray that he continues to improve and has no more issues of ANY kind. Also pray that if there are answers we can know about this rash that they will be made knows through the cultures they took.
That is all. My brain, eyes, and mental capacity has been exhausted with this day.
Tammy
Tuesday, September 13, 2011
Tuesday, September 6, 2011
Update on Keenan
About 3:15 a.m, August 22nd, Keenan woke from his sleep and had a mild seizure. It lasted no longer than a minute and was indeed mild. It was scary, but Brad and I did not panic--too much. He recovered from it well and for that we are so thankful. However, it was a blow for both of us because this one occurred almost two years (to the date) as the seizures he experienced two days after Kaylee was born.
I spent the rest of that night after his seizure watching closely and trying to find ways to alter his schedule to allow him more time for physical and mental rest. (I think I found a couple for the short-term.) You see, I believe with all my heart this seizure occurred due to stress and exhaustion. He does physical therapy 3-4 times a week and has a rigorous school schedule being a BIG 1st grader (lots of walking, the demands of learning new things, and having a struggle with writing). No wonder, huh???
I spent the next three days or so watching him carefully. I also was very sad. While having a seizure is not the end of the world, it was unexpected and caught us off guard. After working through many emotions, I am thankful God allowed Keenan to have such a mild seizure and if it served as a "wake up reminder" that Keenan can't fit into the normal "box" that other kids do, then so be it.
Jump ahead a week to September 1st--the neurologist wanted to get an EEG to take a look at brain activity. So, the night before Brad and I had to keep him up until midnight and woke him up at 6:00. The EEG confirmed what we did not want to hear...abnormal, seizure-like activity.
Their recommendation was to start Keenan on a seizure medication. He could go another two years without an episode, or have one the next day. Since there is no way to know, or totally rid his world of triggers, that seemed to be the best course of action. For those of you who are not aware of his past history, Keenan had a few seizures, back-to-back, right after Kaylee was born. At that time he was put on medications to control them. Over the next 5 months we tried two medications and were unhappy with both of them. They altered our little boy in ways we did not like, so after some wise counsel and MUCH prayer, we decided to take him off the medication and see what happened. It was so nice to see our vibrant, bright-eyed little guy come back to us, and on top of that...no seizures (for almost two years anyway).
I think Brad and I are both hesitant to go the medication route, but we are trying a new medication that is known to be the "clean cognitive" drug because the side effects are typically mild. So, it was decided that try this medication and see what happens. If his body tolerates it well, that will be great!!!!! Peace of mind for his seizures and does not alter his personality or energy level in major ways would be the best news. I have prayed over that bottle of medication, that his body would not be allergic, due to a very serious side effect, and that his body would tolerate it just fine. I also pray each time he puts one in his mouth.
This medication is one that starts "low and slow" in the body. He won't be at full dosage for almost two months. Since he does not have frequent seizures, the doctor felt fine trying this medication and giving his body plenty of time to try to adjust to it. So far we have seen no changes. This is day five and he is only taking it at night right now. I am keeping a daily journal so I can keep a log for the doctor and myself. Time will tell, but I am hopeful. I have to be or I would lose my mind!!!!
Keenan's Surgery. A few posts ago I talked about the follow-up surgery Keenan would need for his heel cords and hamstrings. This is scheduled to be September 13th. Man, where did the time go???? We had a tough decision to make on this one--postpone it so he has time to adjust to school and his schedule, or push on and get this last procedure behind him. I deferred to Brad on this one because when the decision had to be made, I was mentally "spent". So, next Monday we will travel to St. Louis for his procedure on Tuesday. He should be released the following day, which would put us back home Wednesday. This surgery is very minor compared to the last one and will help the tightness he still experiences in his legs. Hopefully this will give him more freedom with his legs and allow for maximum benefit as time passes and he becomes more confident and secure.
Overall, he is doing well. His physical therapist continues to see him progress. While they are not huge in terms of what he is able to do, he is gaining more strength and endurance. A critical piece to all of this is confidence. As he tries small, new things regularly, my hope is that his confidence will increase as well.
Thank you for following this journey. It changes more often than I would like, but God is there at every turn. Even though each trial causes me to have new faith, a little different than what I needed for the previous one, God proves himself faithful. Sometimes it takes me a little longer to see His hand than other times, but as long as I am still looking for Him, I think I am in good shape and still on the right track. I will be in real trouble when I quit looking for all the ways He takes care of my family and me as we journey through this life.
Thanks for reading and please pray for his medication and the upcoming surgery. We would appreciate it more than you know.
Blessings,
Tammy
I spent the rest of that night after his seizure watching closely and trying to find ways to alter his schedule to allow him more time for physical and mental rest. (I think I found a couple for the short-term.) You see, I believe with all my heart this seizure occurred due to stress and exhaustion. He does physical therapy 3-4 times a week and has a rigorous school schedule being a BIG 1st grader (lots of walking, the demands of learning new things, and having a struggle with writing). No wonder, huh???
I spent the next three days or so watching him carefully. I also was very sad. While having a seizure is not the end of the world, it was unexpected and caught us off guard. After working through many emotions, I am thankful God allowed Keenan to have such a mild seizure and if it served as a "wake up reminder" that Keenan can't fit into the normal "box" that other kids do, then so be it.
Jump ahead a week to September 1st--the neurologist wanted to get an EEG to take a look at brain activity. So, the night before Brad and I had to keep him up until midnight and woke him up at 6:00. The EEG confirmed what we did not want to hear...abnormal, seizure-like activity.
Their recommendation was to start Keenan on a seizure medication. He could go another two years without an episode, or have one the next day. Since there is no way to know, or totally rid his world of triggers, that seemed to be the best course of action. For those of you who are not aware of his past history, Keenan had a few seizures, back-to-back, right after Kaylee was born. At that time he was put on medications to control them. Over the next 5 months we tried two medications and were unhappy with both of them. They altered our little boy in ways we did not like, so after some wise counsel and MUCH prayer, we decided to take him off the medication and see what happened. It was so nice to see our vibrant, bright-eyed little guy come back to us, and on top of that...no seizures (for almost two years anyway).
I think Brad and I are both hesitant to go the medication route, but we are trying a new medication that is known to be the "clean cognitive" drug because the side effects are typically mild. So, it was decided that try this medication and see what happens. If his body tolerates it well, that will be great!!!!! Peace of mind for his seizures and does not alter his personality or energy level in major ways would be the best news. I have prayed over that bottle of medication, that his body would not be allergic, due to a very serious side effect, and that his body would tolerate it just fine. I also pray each time he puts one in his mouth.
This medication is one that starts "low and slow" in the body. He won't be at full dosage for almost two months. Since he does not have frequent seizures, the doctor felt fine trying this medication and giving his body plenty of time to try to adjust to it. So far we have seen no changes. This is day five and he is only taking it at night right now. I am keeping a daily journal so I can keep a log for the doctor and myself. Time will tell, but I am hopeful. I have to be or I would lose my mind!!!!
Keenan's Surgery. A few posts ago I talked about the follow-up surgery Keenan would need for his heel cords and hamstrings. This is scheduled to be September 13th. Man, where did the time go???? We had a tough decision to make on this one--postpone it so he has time to adjust to school and his schedule, or push on and get this last procedure behind him. I deferred to Brad on this one because when the decision had to be made, I was mentally "spent". So, next Monday we will travel to St. Louis for his procedure on Tuesday. He should be released the following day, which would put us back home Wednesday. This surgery is very minor compared to the last one and will help the tightness he still experiences in his legs. Hopefully this will give him more freedom with his legs and allow for maximum benefit as time passes and he becomes more confident and secure.
Overall, he is doing well. His physical therapist continues to see him progress. While they are not huge in terms of what he is able to do, he is gaining more strength and endurance. A critical piece to all of this is confidence. As he tries small, new things regularly, my hope is that his confidence will increase as well.
Thank you for following this journey. It changes more often than I would like, but God is there at every turn. Even though each trial causes me to have new faith, a little different than what I needed for the previous one, God proves himself faithful. Sometimes it takes me a little longer to see His hand than other times, but as long as I am still looking for Him, I think I am in good shape and still on the right track. I will be in real trouble when I quit looking for all the ways He takes care of my family and me as we journey through this life.
Thanks for reading and please pray for his medication and the upcoming surgery. We would appreciate it more than you know.
Blessings,
Tammy
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