Peyton was scheduled for her eye exam under general anesthetic this morning. This has already been rescheduled once due to illness. Last night, Peyton's heart rate was running higher than normal, so it was a little concerning. She's also been a little more congested than usual. By the time I went to bed, I was already having my doubts about this procedure actually happening. When we woke up, sure enough her heart rate was even higher and she had a low grade fever. At 7:00 this morning, I was calling the two numbers I had for people who might need to be contacted to cancel the procedure. Actually, they weren't the "right" ones for the immediate need of canceling, but I figured I could leave early morning messages and hope they would be returned. I wound up calling the main line to the hospital to see if I could be transferred to the procedure area. I actually wound up speaking to a friend of mine from choir who is an operator at MUSC. He put me through to the place I needed to speak with and within a couple minutes I'd spoke to a nurse and explained why I was having to cancel, and we were all set.
Peyton's a little better now than she was this morning, but she's just not herself. I did speak with the nurse practitioner in the pulmonary clinic to get some advice. I think we're ok to just watch and wait til tomorrow to see how she is doing then. We're hoping to see an improvement by then!
As for when the procedure will be rescheduled to, I am not sure - that phone call wasn't returned!
Thursday, March 17, 2011
Friday, March 11, 2011
Update
Things have been relatively quiet here since I last posted. No sudden middle of the night trips to the ER for a clogged g-j tube, or for any other reason for that matter!!
Peyton was scheduled for an eye exam under general anesthetic a week or so ago. However, that was the day she decided to have a temp of 102. It was cancelled and moved to March 17th, so we have that to look forward to next week.
Yesterday we saw the pulmonary doctor. It went well. No big changes at all. We're just to keep on doing what we're doing as far as those antibiotics go. We did get the one antibiotic switched to a different form which has helped out immensely with the g-j tube getting clogged. We had made this switch about a week ago. I let the doctor know and he is happy that it is working out. It looks like Peyton will be staying on the antibiotics for the long haul. We go back to the pulmonary clinic in 2 months, so that's another 2 months of antibiotics. She's developing thrush in her mouth from all the antibiotics. Two rounds of oral nystatin did nothing, so she's now on another antibiotic to target the thrush. That makes me happy. I don't care much for the oral nystatin as we have to be so careful to not let any get swallowed - we use those oral swabs to swab all around inside her cheeks and tongue. Glad to be on a different form.
We went to the semi-annual "biggest waste of time" genetics appointment today. Why do I call it that?? Because the very advanced testing she had done at Texas Children's Hospital in her first two years of life (we moved here when she was two and a half) is far more advanced than anything MUSC can do. The doctor spoke for a bit and basically said, "Yeah...it's some kind of genetic disorder...." Great. Thanks. Same answer as last visit....and the visit before....and the visit before that. I really wish Peyton was well enough to travel so we can go back to TCH and see her old geneticist. Who knows, perhaps we'd get the same answer there, although so much has changed in the past year, I'm certain (based on past experience) that the doctor would be sitting with us for a long time discussing her case. It makes me wonder if there's any testing available through TCH that isn't available here. Ugh.
Disney World with Moira was fantastic!! You can read about Moira's birthday here http://fontenblog.blogspot.com/2011/03/happy-birthday-moira.html and you can view pictures from our trip here http://www.facebook.com/album.php?aid=277941&id=690215792&l=6d1cf09192
Aside from this, we're still trying to get Peyton's full 84 hours of nursing each week covered. I figured February would be a challenge since that's when the increase happened. March....well, I thought we'd have a little more coverage. Here's hoping that we're able to get closer to 84 hours in April. We're currently running about 10 hours or so short each week. We got pretty close to 84 once or twice, but generally not. We're also still waiting to hear back to see if we have continuous coverage for the end of April so Ron and I can get away for a few days. Hard to make plans when you have no clue if you'll have the coverage you asked for over 2 months ago. Makes you wonder why there was the urgency to let them know the dates we were needing coverage for.
Please keep us in your prayers. Things have been incredibly stressful and frustrating in a few areas of our everyday life. Disney was awesome, but can only imagine how much more awesome it would have been if I wasn't so completely exhausted. All I want to do is sleep. I am so tired and worn out. I feel guilty for the state of my house constantly - it looks like the people who live here just don't give a care. I care...trust me...I just have ZERO energy. I feel like I'm so far behind on sleep that no amount of napping will ever catch me up.
I will keep you posted on Peyton's eye exam next week. It should just be a routine thorough exam, although there's always the possibility that something has to be done. One never knows!!
As always, thanks for your prayers!
Peyton was scheduled for an eye exam under general anesthetic a week or so ago. However, that was the day she decided to have a temp of 102. It was cancelled and moved to March 17th, so we have that to look forward to next week.
Yesterday we saw the pulmonary doctor. It went well. No big changes at all. We're just to keep on doing what we're doing as far as those antibiotics go. We did get the one antibiotic switched to a different form which has helped out immensely with the g-j tube getting clogged. We had made this switch about a week ago. I let the doctor know and he is happy that it is working out. It looks like Peyton will be staying on the antibiotics for the long haul. We go back to the pulmonary clinic in 2 months, so that's another 2 months of antibiotics. She's developing thrush in her mouth from all the antibiotics. Two rounds of oral nystatin did nothing, so she's now on another antibiotic to target the thrush. That makes me happy. I don't care much for the oral nystatin as we have to be so careful to not let any get swallowed - we use those oral swabs to swab all around inside her cheeks and tongue. Glad to be on a different form.
We went to the semi-annual "biggest waste of time" genetics appointment today. Why do I call it that?? Because the very advanced testing she had done at Texas Children's Hospital in her first two years of life (we moved here when she was two and a half) is far more advanced than anything MUSC can do. The doctor spoke for a bit and basically said, "Yeah...it's some kind of genetic disorder...." Great. Thanks. Same answer as last visit....and the visit before....and the visit before that. I really wish Peyton was well enough to travel so we can go back to TCH and see her old geneticist. Who knows, perhaps we'd get the same answer there, although so much has changed in the past year, I'm certain (based on past experience) that the doctor would be sitting with us for a long time discussing her case. It makes me wonder if there's any testing available through TCH that isn't available here. Ugh.
Disney World with Moira was fantastic!! You can read about Moira's birthday here http://fontenblog.blogspot.com/2011/03/happy-birthday-moira.html and you can view pictures from our trip here http://www.facebook.com/album.php?aid=277941&id=690215792&l=6d1cf09192
Aside from this, we're still trying to get Peyton's full 84 hours of nursing each week covered. I figured February would be a challenge since that's when the increase happened. March....well, I thought we'd have a little more coverage. Here's hoping that we're able to get closer to 84 hours in April. We're currently running about 10 hours or so short each week. We got pretty close to 84 once or twice, but generally not. We're also still waiting to hear back to see if we have continuous coverage for the end of April so Ron and I can get away for a few days. Hard to make plans when you have no clue if you'll have the coverage you asked for over 2 months ago. Makes you wonder why there was the urgency to let them know the dates we were needing coverage for.
Please keep us in your prayers. Things have been incredibly stressful and frustrating in a few areas of our everyday life. Disney was awesome, but can only imagine how much more awesome it would have been if I wasn't so completely exhausted. All I want to do is sleep. I am so tired and worn out. I feel guilty for the state of my house constantly - it looks like the people who live here just don't give a care. I care...trust me...I just have ZERO energy. I feel like I'm so far behind on sleep that no amount of napping will ever catch me up.
I will keep you posted on Peyton's eye exam next week. It should just be a routine thorough exam, although there's always the possibility that something has to be done. One never knows!!
As always, thanks for your prayers!
Thursday, February 24, 2011
Another G Tube Clog
Another day, another trip to the ER.
As I mentioned last time, I'm having to get up a couple times during the night to do Peyton's meds. I hadn't yet gone to sleep when it was time for the four midnight meds. I got halfway through and the tube clogged....again. I worked on it with increasing frustration and tears for close to an hour and a half before going to Ron and telling him she needed to go to the ER.
I wound up leaving home at about 1:50am. Not much traffic between here and MUSC at that time of day. Got to the parking garage in record time. There was no one waiting in the children's ER waiting room. We were back in a room in no time. A resident was in to see Peyton right away. The attending saw we were checked in before we even got back and she thought ahead and ordered the clog zapper stuff from central supply so that it would help reduce our wait time once in the ER. Before too long, the clog zapper solution was put into her tube. Unlike last time, the solution didn't go in easily, and it seemed like more wound up on Peyton than in her. I wasn't sure it was going to work like it did last time. In fact, after the hour passed (that's how long it has to sit for), the nurse came in to flush the tube. It didn't flush. She got a different syringe and tried again. It didn't flush easily, but eventually the clog just popped out of the tube into her stomach and we were back in business. We were out of there and on our way home.
We got home at about 4:30am. At that point, I'd been up for nearly 24 hours and was incredibly exhausted. I changed Peyton, gave her her meds that she missed, posted by insight for the daily bible study I'm doing, and then went to bed by 5:00. Woke up at 5:40 when my alarm went off, got up, showered, and got ready for the day...sort of. I did what I needed to to help get Moira fed and ready for school. The nurse arrived at 7:30. I updated her. Moira went to school. I went to bed and slept til noon. Still incredibly exhausted. I slept for maybe another 30 minutes later in the afternoon before Moira came home. The nurse left at 5:30pm. Our 5:30pm-10pm nurse called out sick. Hopefully she's back tomorrow. We have the back to back nurses again tomorrow...hopefully. I intend to try for a repeat of today - in terms of sleeping while the nurse is here. I do NOT intend to try for a repeat of my night.
Please keep praying for Peyton, but also for me. My frustration level and stress level is at an all-time high right now. It's like we keep waiting and waiting for things to work out and get easier...and they don't. I just want to be able to give Peyton her meds. Sounds simple enough, right?? Wish it were as simple as it sounds.
As I mentioned last time, I'm having to get up a couple times during the night to do Peyton's meds. I hadn't yet gone to sleep when it was time for the four midnight meds. I got halfway through and the tube clogged....again. I worked on it with increasing frustration and tears for close to an hour and a half before going to Ron and telling him she needed to go to the ER.
I wound up leaving home at about 1:50am. Not much traffic between here and MUSC at that time of day. Got to the parking garage in record time. There was no one waiting in the children's ER waiting room. We were back in a room in no time. A resident was in to see Peyton right away. The attending saw we were checked in before we even got back and she thought ahead and ordered the clog zapper stuff from central supply so that it would help reduce our wait time once in the ER. Before too long, the clog zapper solution was put into her tube. Unlike last time, the solution didn't go in easily, and it seemed like more wound up on Peyton than in her. I wasn't sure it was going to work like it did last time. In fact, after the hour passed (that's how long it has to sit for), the nurse came in to flush the tube. It didn't flush. She got a different syringe and tried again. It didn't flush easily, but eventually the clog just popped out of the tube into her stomach and we were back in business. We were out of there and on our way home.
We got home at about 4:30am. At that point, I'd been up for nearly 24 hours and was incredibly exhausted. I changed Peyton, gave her her meds that she missed, posted by insight for the daily bible study I'm doing, and then went to bed by 5:00. Woke up at 5:40 when my alarm went off, got up, showered, and got ready for the day...sort of. I did what I needed to to help get Moira fed and ready for school. The nurse arrived at 7:30. I updated her. Moira went to school. I went to bed and slept til noon. Still incredibly exhausted. I slept for maybe another 30 minutes later in the afternoon before Moira came home. The nurse left at 5:30pm. Our 5:30pm-10pm nurse called out sick. Hopefully she's back tomorrow. We have the back to back nurses again tomorrow...hopefully. I intend to try for a repeat of today - in terms of sleeping while the nurse is here. I do NOT intend to try for a repeat of my night.
Please keep praying for Peyton, but also for me. My frustration level and stress level is at an all-time high right now. It's like we keep waiting and waiting for things to work out and get easier...and they don't. I just want to be able to give Peyton her meds. Sounds simple enough, right?? Wish it were as simple as it sounds.
Tuesday, February 22, 2011
Clogged
Last time I posted, I commented on the fact that January was over so quickly. Here we are almost through February already!!
The past couple of weeks have been fairly quiet for the most part. That's always a welcomed treat for us! Today, however, was another crazy day! Once again, Peyton's g-tube clogged because of the antibiotics she is on for the mycobacterium. They are so thick and gritty. There's granules in the suspension that just make a big mess. Anyway, I tried for a while to free the clog and it just wasn't happening. We got Moira ready for school and we all headed out the door, with me dropping Moira and Ron off on my way to the ER.
I was not in a good frame of mind this morning. It is so incredibly frustrating to have to deal with this. I wish the worst thing about giving Peyton her meds was that she refused because they tasted bad! Oral anything is not an option, so everything goes through the tube. If the tube gets clogged, it's bad news. At least her feeds aren't interrupted because they are through the "j" portion of the GJ tube. The meds are through the "g" portion. I KNOW there is so much to be grateful for. I do. I really do. But today just got to me - and quickly. Between the clog itself, the fact that I had no choice BUT to go to the hospital and face a potentially lengthy stay today, the fact that I am completely exhausted, the fact that the meds she HAS to be on are the culprit, the fact that I don't even know if they are even working, etc. - I just wasn't in a good place. To a degree, I still am not in a good place. My head is throbbing. My neck, shoulders and back are hurting. I've spent a good portion of my day (at home - not in public!) in tears. I feel selfish saying this, but today I just wish I could have a "normal" day. I mean a REAL normal day.
Anyway, on my way to the ER, I thought, you know, it's Tuesday and it's daytime - maybe the surgery clinic is open. It's them that I have to contact about tube problems because they are the ones who had it put in. Gastroenterology won't discuss tube issues with me even though it involves feeding. Go figure. As luck would have it, the surgery clinic was not open today (specialty clinics operate on particular days of the week). However, the woman I spoke with did try to put me through to someone. When she got back with me, she told me that she discussed the situation and was having one of the physician's assistants from peds surgery paged. By this time I was over half-way to the hospital, so she said she should be able to get with me before I was having to park - ER and clinic are two different parking garages. A few minutes later, I did get a call back from the same woman, who let me know that I was to head up to where the surgery clinic meets and have the registration desk page the PA. At least this would save a lengthy wait in the ER.
For a walk-in, I didn't really have to wait long in the waiting room. However, the PA was still rounding over at the hospital with the surgery team, so I did have to wait for her. When she got to us, she attempted to flush the tube. She didn't try the clog zapper stuff that the ER had used a couple weeks ago. To be honest, I don't know that any clog zapper could have been injected into the tube because it was that bad. The tube has to be changed out ever 3 months. This one was due to be changed on March 7th, so she wound up calling radiology to see if they could work Peyton in for this tube to be removed and a new one placed. It has to be done in radiology so they can watch on the screen to make sure it's going into the right spot. They were able to take Peyton. Off we went to radiology.
I didn't have to wait too long in the waiting room in radiology. When Peyton was brought back, they took an x-ray to see the current tube's position. Then the radiologist and a couple other people came in and began working on the removal/insertion process. It's not a real quick procedure. Fast enough, but it's a little involved. Peyton did really well. Apparently the old tube wasn't exactly in the proper position. Not sure if that would have been part of the clogging problem - likely not - but it wasn't great that it wasn't where it should be. The new one is in the proper position.
Best moment of the whole hospital experience (which had me home a little after noon - about 4 hours at MUSC)....when the radiologist told me I had to be more diligent about flushing the port!!!! If there wasn't something in between me and him at the time he said it, he probably might have gotten the full effect of "the eye" that I was sure I must be giving him. It was one of those moments where you look around and say, "Oh, excuse me, were you talking to me???" Are you KIDDING ME???? As if between me and the nurses, knowing full well how thick and grainy those meds are, we're just going to put them through the tube and not flush with a decent amount of water??? In fact, we give more than we need to because of that!! Not to mention the fact that there's about twelve times a day when meds are going through the port, getting properly flushed
every single time!!! Seriously??? I'm not being diligent enough???? If you've read this blog even once or twice, I'm pretty sure you get that I'm diligent when it comes to Peyton's care!!
Anyway....we got back home and went on about our day. The nurse was here when we got home. She took over while I went and grabbed a power nap.
As far as other issues go, we don't see any particular improvement at all since Peyton began these antibiotics on 2/03/11. Actually, in general, most people who come into the house have commented on how she's more tired than before, that she looks tired all the time, how she's not doing certain things in therapy that she was doing even a month ago, etc. She's not "hospital" sick right now, but there's something different. Can't put our fingers on what it is, but she's changed. Even if it's not a huge, drastic change, she's changed.
So, when today happened, it was a clogged tube on top of the frustration of all of this. There is so much uncertainty. I don't personally feel like the antibiotics are going to have much of an effect on Peyton. We see the pulmonary doctor on March 8th, I believe. Perhaps at that time we'll know if Peyton is to continue on the antibiotics for several more months or if they'll just stop them.
With today's clog and hospital trip came a revised medicine schedule. Why? Because everything got delayed because she couldn't get her meds with the tube being clogged. Why the problem?? Because she's on 14 different meds right now. Because some are once a day. Some are twice a day. Some are four times a day. With the antibiotics, antacids and iron supplments cannot be given within so many hours before or after the antibiotics. She takes both antacids and iron supplements. One antacid has to be given 20 minutes ahead of other meds. There's a whole lot of pharmaceutical / gastroenterological mathematics that goes into making Peyton's med dosing schedule. Everything is spaced over the course of the day. You can't give some meds too close together, so you have to be sure you've got good spacing...for everything. Now, because of the clogging issues, Peyton's being switched from the suspension formula for one antibiotic to the oral tablet that one would normally swallow. Instead, we'll crush it up and "dissolve" in water. Trust me, it's not going to dissolve fully, so it becomes another clog risk. Maybe not as bad as the suspension. We'll see. So, remember, Peyton is on 24 hour continuous feeds. Now we have to stop feeds 1 hour before this med is given (twice a day) and hold for until 2 hours after the med is given. That means we only have 18 of 24 hours to feed Peyton. We have to give her 4 cans of pediasure and 300 cc's of free water in 18 hours. This means a rate of 69 cc's per hour. The absolute MAX the GI doc wants her at is 50 cc's per hour. Riddle me that one!! Increase the rate of the feed and we're risking more vomiting than she's already doing. We're increasing the risk of aspiration that she's already doing. Are you sensing my frustration???? Anyway, I've re-set the med dosing schedule and will now be up at midnight giving meds (assuming I actually went to sleep before then)...and 2:50 am.....SO much fun I can hardly contain my excitement at the prospect. I'll be working on trying to shift the meds so it's not so horrible a schedule, but it will take time. They can't just be shifted several hours ahead of where they are now all at once!
I'm having such a hard time right now. We're in a series about "Joy" at church right now. One week the message was so clear on how complaining can cause you to lose your joy. Along with probably everyone else there that day, I said I was going to try to stop complaining. Then we hear about how we are to praise God in all things. Yes, we should. I know it. I do. I just feel like during the past few weeks of this series on "Joy", most things in my life have been working completely against what I've been learning and loving about the series. That, in itself, is so frustrating!!
On that note, I have to say I am SERIOUSLY looking forward to a quick weekend getaway I have planned. Moira's 7th birthday is coming up on March 10th. In an effort to give her some really good "Mommy-Moira" time, instead of having a big birthday party with all kinds of kids coming, we decided to do something special just for her. My dad is traveling down here next week. On Friday after school, he, Moira and I are driving to Orlando. Saturday will be spent at the Magic Kingdom. Sunday we come home. Very quick trip, but it's much needed. In fact, I would venture to say that right now I need it at least as much, if not more than she does right now!! Ron has to stay at home with Peyton. We have regular nursing hours, not overnight, so one of us had to stay behind. Besides, even if they were overnight we'd have to have someone here locally willing to be a back up person trained and checked off in the event that something fell through with the nurse while we were away.
And in case you are feeling badly for Ron now....we did start talking almost a month ago about a getaway for just the two of us. Again, my dad will come down primarily to watch Peyton. We've been trying to get round the clock nursing coverage set up for April 29 to May 1 or 2 (no, we're not heading to the UK for the royal wedding...April 29th is OUR anniversary!). We have a couple nurses who've told us they are willing to do the shifts over that time frame, but nothing has been set so far - hard for us to make plans when we don't know what's happening. IF we can get this to work, it'll mean sacrificing some hours during the week ending April 29th and the following week, but it will afford us the opportunity to have a much-needed getaway. IF we can get this to work, this will mean that Ron and I will GET AWAY TOGETHER FOR THE FIRST TIME IN FOUR AND A HALF YEARS!!!!!!!!!!!!!!!!!! So...yeah...we are more than a little anxious to get the word that we have the coverage to go ahead and start planning. Right now it's in the "I have a dream" phase...really not believing it will happen. Hopefully it will become a reality.
Not too much else is going on for now. I think that's about enough isn't it?!?!
Please continue to pray for Peyton...throw a couple in for me if you think about it! Thanks!!
The past couple of weeks have been fairly quiet for the most part. That's always a welcomed treat for us! Today, however, was another crazy day! Once again, Peyton's g-tube clogged because of the antibiotics she is on for the mycobacterium. They are so thick and gritty. There's granules in the suspension that just make a big mess. Anyway, I tried for a while to free the clog and it just wasn't happening. We got Moira ready for school and we all headed out the door, with me dropping Moira and Ron off on my way to the ER.
I was not in a good frame of mind this morning. It is so incredibly frustrating to have to deal with this. I wish the worst thing about giving Peyton her meds was that she refused because they tasted bad! Oral anything is not an option, so everything goes through the tube. If the tube gets clogged, it's bad news. At least her feeds aren't interrupted because they are through the "j" portion of the GJ tube. The meds are through the "g" portion. I KNOW there is so much to be grateful for. I do. I really do. But today just got to me - and quickly. Between the clog itself, the fact that I had no choice BUT to go to the hospital and face a potentially lengthy stay today, the fact that I am completely exhausted, the fact that the meds she HAS to be on are the culprit, the fact that I don't even know if they are even working, etc. - I just wasn't in a good place. To a degree, I still am not in a good place. My head is throbbing. My neck, shoulders and back are hurting. I've spent a good portion of my day (at home - not in public!) in tears. I feel selfish saying this, but today I just wish I could have a "normal" day. I mean a REAL normal day.
Anyway, on my way to the ER, I thought, you know, it's Tuesday and it's daytime - maybe the surgery clinic is open. It's them that I have to contact about tube problems because they are the ones who had it put in. Gastroenterology won't discuss tube issues with me even though it involves feeding. Go figure. As luck would have it, the surgery clinic was not open today (specialty clinics operate on particular days of the week). However, the woman I spoke with did try to put me through to someone. When she got back with me, she told me that she discussed the situation and was having one of the physician's assistants from peds surgery paged. By this time I was over half-way to the hospital, so she said she should be able to get with me before I was having to park - ER and clinic are two different parking garages. A few minutes later, I did get a call back from the same woman, who let me know that I was to head up to where the surgery clinic meets and have the registration desk page the PA. At least this would save a lengthy wait in the ER.
For a walk-in, I didn't really have to wait long in the waiting room. However, the PA was still rounding over at the hospital with the surgery team, so I did have to wait for her. When she got to us, she attempted to flush the tube. She didn't try the clog zapper stuff that the ER had used a couple weeks ago. To be honest, I don't know that any clog zapper could have been injected into the tube because it was that bad. The tube has to be changed out ever 3 months. This one was due to be changed on March 7th, so she wound up calling radiology to see if they could work Peyton in for this tube to be removed and a new one placed. It has to be done in radiology so they can watch on the screen to make sure it's going into the right spot. They were able to take Peyton. Off we went to radiology.
I didn't have to wait too long in the waiting room in radiology. When Peyton was brought back, they took an x-ray to see the current tube's position. Then the radiologist and a couple other people came in and began working on the removal/insertion process. It's not a real quick procedure. Fast enough, but it's a little involved. Peyton did really well. Apparently the old tube wasn't exactly in the proper position. Not sure if that would have been part of the clogging problem - likely not - but it wasn't great that it wasn't where it should be. The new one is in the proper position.
Best moment of the whole hospital experience (which had me home a little after noon - about 4 hours at MUSC)....when the radiologist told me I had to be more diligent about flushing the port!!!! If there wasn't something in between me and him at the time he said it, he probably might have gotten the full effect of "the eye" that I was sure I must be giving him. It was one of those moments where you look around and say, "Oh, excuse me, were you talking to me???" Are you KIDDING ME???? As if between me and the nurses, knowing full well how thick and grainy those meds are, we're just going to put them through the tube and not flush with a decent amount of water??? In fact, we give more than we need to because of that!! Not to mention the fact that there's about twelve times a day when meds are going through the port, getting properly flushed
every single time!!! Seriously??? I'm not being diligent enough???? If you've read this blog even once or twice, I'm pretty sure you get that I'm diligent when it comes to Peyton's care!!
Anyway....we got back home and went on about our day. The nurse was here when we got home. She took over while I went and grabbed a power nap.
As far as other issues go, we don't see any particular improvement at all since Peyton began these antibiotics on 2/03/11. Actually, in general, most people who come into the house have commented on how she's more tired than before, that she looks tired all the time, how she's not doing certain things in therapy that she was doing even a month ago, etc. She's not "hospital" sick right now, but there's something different. Can't put our fingers on what it is, but she's changed. Even if it's not a huge, drastic change, she's changed.
So, when today happened, it was a clogged tube on top of the frustration of all of this. There is so much uncertainty. I don't personally feel like the antibiotics are going to have much of an effect on Peyton. We see the pulmonary doctor on March 8th, I believe. Perhaps at that time we'll know if Peyton is to continue on the antibiotics for several more months or if they'll just stop them.
With today's clog and hospital trip came a revised medicine schedule. Why? Because everything got delayed because she couldn't get her meds with the tube being clogged. Why the problem?? Because she's on 14 different meds right now. Because some are once a day. Some are twice a day. Some are four times a day. With the antibiotics, antacids and iron supplments cannot be given within so many hours before or after the antibiotics. She takes both antacids and iron supplements. One antacid has to be given 20 minutes ahead of other meds. There's a whole lot of pharmaceutical / gastroenterological mathematics that goes into making Peyton's med dosing schedule. Everything is spaced over the course of the day. You can't give some meds too close together, so you have to be sure you've got good spacing...for everything. Now, because of the clogging issues, Peyton's being switched from the suspension formula for one antibiotic to the oral tablet that one would normally swallow. Instead, we'll crush it up and "dissolve" in water. Trust me, it's not going to dissolve fully, so it becomes another clog risk. Maybe not as bad as the suspension. We'll see. So, remember, Peyton is on 24 hour continuous feeds. Now we have to stop feeds 1 hour before this med is given (twice a day) and hold for until 2 hours after the med is given. That means we only have 18 of 24 hours to feed Peyton. We have to give her 4 cans of pediasure and 300 cc's of free water in 18 hours. This means a rate of 69 cc's per hour. The absolute MAX the GI doc wants her at is 50 cc's per hour. Riddle me that one!! Increase the rate of the feed and we're risking more vomiting than she's already doing. We're increasing the risk of aspiration that she's already doing. Are you sensing my frustration???? Anyway, I've re-set the med dosing schedule and will now be up at midnight giving meds (assuming I actually went to sleep before then)...and 2:50 am.....SO much fun I can hardly contain my excitement at the prospect. I'll be working on trying to shift the meds so it's not so horrible a schedule, but it will take time. They can't just be shifted several hours ahead of where they are now all at once!
I'm having such a hard time right now. We're in a series about "Joy" at church right now. One week the message was so clear on how complaining can cause you to lose your joy. Along with probably everyone else there that day, I said I was going to try to stop complaining. Then we hear about how we are to praise God in all things. Yes, we should. I know it. I do. I just feel like during the past few weeks of this series on "Joy", most things in my life have been working completely against what I've been learning and loving about the series. That, in itself, is so frustrating!!
On that note, I have to say I am SERIOUSLY looking forward to a quick weekend getaway I have planned. Moira's 7th birthday is coming up on March 10th. In an effort to give her some really good "Mommy-Moira" time, instead of having a big birthday party with all kinds of kids coming, we decided to do something special just for her. My dad is traveling down here next week. On Friday after school, he, Moira and I are driving to Orlando. Saturday will be spent at the Magic Kingdom. Sunday we come home. Very quick trip, but it's much needed. In fact, I would venture to say that right now I need it at least as much, if not more than she does right now!! Ron has to stay at home with Peyton. We have regular nursing hours, not overnight, so one of us had to stay behind. Besides, even if they were overnight we'd have to have someone here locally willing to be a back up person trained and checked off in the event that something fell through with the nurse while we were away.
And in case you are feeling badly for Ron now....we did start talking almost a month ago about a getaway for just the two of us. Again, my dad will come down primarily to watch Peyton. We've been trying to get round the clock nursing coverage set up for April 29 to May 1 or 2 (no, we're not heading to the UK for the royal wedding...April 29th is OUR anniversary!). We have a couple nurses who've told us they are willing to do the shifts over that time frame, but nothing has been set so far - hard for us to make plans when we don't know what's happening. IF we can get this to work, it'll mean sacrificing some hours during the week ending April 29th and the following week, but it will afford us the opportunity to have a much-needed getaway. IF we can get this to work, this will mean that Ron and I will GET AWAY TOGETHER FOR THE FIRST TIME IN FOUR AND A HALF YEARS!!!!!!!!!!!!!!!!!! So...yeah...we are more than a little anxious to get the word that we have the coverage to go ahead and start planning. Right now it's in the "I have a dream" phase...really not believing it will happen. Hopefully it will become a reality.
Not too much else is going on for now. I think that's about enough isn't it?!?!
Please continue to pray for Peyton...throw a couple in for me if you think about it! Thanks!!
Subscribe to:
Posts (Atom)