It was another very early morning for me - up since 3:00am for the second day in a row. This time it was because Peyton had slept the entire day (Monday) and decided to go insane at about 3:00am Tuesday morning. First off, she woke up really fussing, which worried me. She was drenched in sweat but she was hot. I thought initially the fever had broken, but instead, her temp was 102.7!! I gave her some Tylenol. Shortly thereafter, the fever must have broken because she went from fussy child to crazy active child, rolling all over her crib flipping herself from one end to the other. That was it, we were up for the day.
It was a crazy day of phone calls and chatting online about her status - enough that it make me forget to pick Moira up at school!! Ok, so I knew I had to - it just didn't occur to me to check the time while I was busy! I happened to glance at the clock on my computer and it was 9 minutes past dismissal time. Good thing we live close! I was out the door so fast, I nearly ran over the 2 home nurses who were just coming in to draw labs from Peyton! That would be me personally, not me with the car!! So, I made it to the school and sped through the pick up line - not a single car was ahead of me. Imagine that! Actually, if I leave right AT dismissal time from home, I can make it and be within the last 10 or so cars to go through, which is ok. I guess those few minutes make all the difference. Frankly, I was stunned the line moved that fast! At least there were still cars within a few feet of the school property, so it's not I abandoned her. Poor kid!!
So what made my day so crazy?? Phone calls. Non-stop phone calls!
First off, the endoscopy coordinator who I spoke with yesterday called me early this morning to check on Peyton's status - when was her last fever, what was it, what was her temp now, how is she doing, etc. We discussed the issues of anesthesia being the potential snag in the plan to get the bronchoscopy and endoscopy done this week. Given that she did have a 102+ fever overnight, it was really cutting it close. She said sometimes they like to wait 2 weeks after a fever, but with Peyton's general health, if you wait for the "right" time, you'll never find it - and if you schedule something for when you *think* the right time will be, surely you'll wind up rescheduling, just as I have done with her sleep study, which is in it's 3rd or 4th rescheduling, currently set for 1/30/11. I explained how Peyton wound up hospitalized due to illness days prior to her salivary gland surgery and that they kept it on the schedule in the hopes she'd be well enough. She had a fever then and the surgery was fairly close to 24 hours after the fever broke, if that. She took that into consideration so she could let the anesthesia team know, as there would be reports in the system on how well she did under those conditions.
Later in the day, I received a call from the pulmonary clinic. It was the nurse practitioner who I'm always talking with. She wanted to give me a heads up as to what was going on because apparently this whole endoscopy/bronchoscopy thing has caused quite the drama between pulmonary and gastroenterology. I just field calls and do what they tell me - no drama here. Not there, apparently. I'll spare you all the details, as I could go on for about an hour about that. Suffice it to say, a note is in the system from anesthesia from today stating that they are ok with proceeding with the procedure tomorrow (Wednesday). The GI doctor wanted labs drawn, so that was the reason for the home nurses coming as I was heading out the door. There was more drama around that between that agency and the hospital (because of failure to communicate WHEN the procedure would be), but long story short, they were drawing labs this afternoon.
So, the bronchoscopy and endoscopy have been coordinated between the pulmonary doctor and the GI doctor. Peyton and I have to be there at 7:00 in the morning and she is the first one on the schedule. Aside from looking for a potential cause for the gastric bleeding, they'll be able to get down in her lungs, get samples and maybe try to figure out what's keeping Peyton so sick this past year. As much as I don't want them to find anything wrong at all, I would love to get some answers so we can work on a solution, assuming there is one.
Please send up some prayers for Peyton for this procedure to go well and for us to hopefully find some answers. Thanks! Will update tomorrow.
Tuesday, January 4, 2011
Monday, January 3, 2011
Getting Sick
Well, we successfully made it through the holiday season without Peyton getting sick and winding up in the hospital - just as we prayed for!
(insert sound of needle scratching across a record here)
Today being the first day after the holidays, when people are heading back to work and back to school, was the day Peyton became sick. Again. She seemed just fine all day yesterday until bedtime. She just would not go to sleep. she was fussing a lot, which is just not typical for her. She required a lot more suctioning. Then it became a situation where she was coughing and becoming hoarse with all the coughing. It was like she was trying in vain to clear something from her airway but couldn't. Suctioning wasn't helping. She was gagging a lot and threw up a couple times. I, myself, had been under the weather for the past few days, so was still kind of out of it myself last night. I got up a couple times to help Ron, but had to go lie back down.
Then came nearly 3:00 in the morning this morning. Peyton was still awake,still screaming and crying, and still inconsolable. It was somewhere around this time where Ron and I switched off and he tried to grab a little sleep while I sat with her. Her heart rate had gone way up, which is consistent with a fever. Her temp was only 99.5. A little later on it was 100.7. Then it was 101.7. I gave her some Tylenol and just sat with her and rocked her for ages. I finally swaddled her and held her close. I rocked her and cried and prayed for her. April, if you are reading this, I can't tell you how often I looked at your painting over her crib and prayed Jeremiah 29:11 over her last night. It truly was comforting having it right there to look at while struggling to console her.
Peyton catnapped for maybe 20-30 minutes but then suddenly awoke with the inconsolable screaming again. Then she started to gag like she was going to throw up. I managed to get her in her crib and get the suction going before she did. Once again, she had some of the bloody material in what came up. Not good. So, on top of whatever was going on with her, the gastric bleeding reared its ugly head.
I swaddled her and rocked her some more but somewhere around 5:40, I just had to put her down. I took a time out, grabbed my laptop, logged in to www.youversion.com so that I could read my daily bible readings so I could try to start my day right. Well, continue my day - it started at 3:00am. I'm taking part in what our pastor has called the "Daily Wisdom Challenge". Read about that over here: http://fontenblog.blogspot.com/2011/01/happy-new-year.html
I am glad I took the time to do that, although I did find it more of a challenge to come up with a 140-character-or-less piece of wisdom to tweet about this morning. God created sleep - and Sarah saw that it was good. Evening came, and morning came....with no sleep. (fyi, that was not the kernel of wisdom I imparted on my fellow Seacoasters at 6:00 this morning)
While Peyton slept, I grabbed a quick shower so I would be ready for when the nurses came this morning. We had two nurses today - one was orienting as a possible back up. Ron and I were on the fence during the night as to whether or not to go to the ER. We decided to hold off until the nurses came and until I could talk to the nurse practitioner in the pulmonary clinic. That would be the tougher one. She's in clinic all morning, so I knew I wouldn't speak with her until after noon. I figured either she'd be find with nursing care until I could speak with the NP, or she'd be bad enough where we'd just wind up going to the ER anyway, so it wasn't too big a deal to me to have that be the case.
Just as I expected, the NP called me back just shortly after noon. I had left a message with all the details of Peyton's condition - increased heart rate, lower oxygen, fever (up to 102 by that point), increased work of breathing, lethargic (who wouldn't be with no sleep all night??), etc. She was going to call in an antibiotic prescription for Peyton to get started on. I mentioned to her that I'd called the GI clinic last week about the continued gastric bleeding but hadn't heard back. I also mentioned she'd had blood work done in the GI clinic on 12/16/10 and had heard nothing back on that. I figured since they've spoken to each other regarding Peyton recently, perhaps she could act as an intermediary for me and get the information from them that I've been waiting on.
Later this afternoon, I received a call from someone from the GI clinic. She basically said upfront that the GI doctor and pulmonary doctor spoke about Peyton and she needs to have a bronchoscopy and endoscopy ASAP. They want to do it Wednesday. I mentioned Peyton is sick with a fever. She said they are aware. That tells me the level of importance. If they are willing to sedate her (yes...another general anesthetic is involved) while she is under the weather, it must be serious. The nurse I spoke with in the GI clinic indicated that this gastric bleeding she's having just isn't good. She spoke with the endoscopy coordinator and the only thing that could hold up the procedure from happening on Wednesday is if Peyton's fever doesn't break. Anesthesia won't be wanting to sedate her if she's had a fever. This all came about late in the afternoon, and it's been like prayers are being answered because for the first time since the wee hours of the morning, her heart rate is back in the 130s/120s (still a bit high, but not creeping up to the high 160s/low 170s as it was at its worst!). True, she's had a 3rd dose of Tylenol since it all started, but nothing has helped until now.
Please pray with us that Peyton's fever breaks, first and foremost, and that the antibiotics (which are quite strong and aren't usually prescribed for children) kick in ASAP so she can have her procedure on Wednesday. They're going to call me tomorrow to check in on Peyton. I'm praying I can tell them she's vastly improved. And, should she have the bronchoscopy and endoscopy as planned, please pray with us that whatever is causing this gastric bleeding is healed and the bleeding stops. The last thing I want to hear is that Peyton requires some sort of surgery. As we know from our visit to the surgeon a few weeks back, it is possible that what is going on is all part of the decline in her overall condition.
We covet your prayers for Peyton's healing from this illness and from the bleeding she's been having. Thank you!
(insert sound of needle scratching across a record here)
Today being the first day after the holidays, when people are heading back to work and back to school, was the day Peyton became sick. Again. She seemed just fine all day yesterday until bedtime. She just would not go to sleep. she was fussing a lot, which is just not typical for her. She required a lot more suctioning. Then it became a situation where she was coughing and becoming hoarse with all the coughing. It was like she was trying in vain to clear something from her airway but couldn't. Suctioning wasn't helping. She was gagging a lot and threw up a couple times. I, myself, had been under the weather for the past few days, so was still kind of out of it myself last night. I got up a couple times to help Ron, but had to go lie back down.
Then came nearly 3:00 in the morning this morning. Peyton was still awake,still screaming and crying, and still inconsolable. It was somewhere around this time where Ron and I switched off and he tried to grab a little sleep while I sat with her. Her heart rate had gone way up, which is consistent with a fever. Her temp was only 99.5. A little later on it was 100.7. Then it was 101.7. I gave her some Tylenol and just sat with her and rocked her for ages. I finally swaddled her and held her close. I rocked her and cried and prayed for her. April, if you are reading this, I can't tell you how often I looked at your painting over her crib and prayed Jeremiah 29:11 over her last night. It truly was comforting having it right there to look at while struggling to console her.
Peyton catnapped for maybe 20-30 minutes but then suddenly awoke with the inconsolable screaming again. Then she started to gag like she was going to throw up. I managed to get her in her crib and get the suction going before she did. Once again, she had some of the bloody material in what came up. Not good. So, on top of whatever was going on with her, the gastric bleeding reared its ugly head.
I swaddled her and rocked her some more but somewhere around 5:40, I just had to put her down. I took a time out, grabbed my laptop, logged in to www.youversion.com so that I could read my daily bible readings so I could try to start my day right. Well, continue my day - it started at 3:00am. I'm taking part in what our pastor has called the "Daily Wisdom Challenge". Read about that over here: http://fontenblog.blogspot.com/2011/01/happy-new-year.html
I am glad I took the time to do that, although I did find it more of a challenge to come up with a 140-character-or-less piece of wisdom to tweet about this morning. God created sleep - and Sarah saw that it was good. Evening came, and morning came....with no sleep. (fyi, that was not the kernel of wisdom I imparted on my fellow Seacoasters at 6:00 this morning)
While Peyton slept, I grabbed a quick shower so I would be ready for when the nurses came this morning. We had two nurses today - one was orienting as a possible back up. Ron and I were on the fence during the night as to whether or not to go to the ER. We decided to hold off until the nurses came and until I could talk to the nurse practitioner in the pulmonary clinic. That would be the tougher one. She's in clinic all morning, so I knew I wouldn't speak with her until after noon. I figured either she'd be find with nursing care until I could speak with the NP, or she'd be bad enough where we'd just wind up going to the ER anyway, so it wasn't too big a deal to me to have that be the case.
Just as I expected, the NP called me back just shortly after noon. I had left a message with all the details of Peyton's condition - increased heart rate, lower oxygen, fever (up to 102 by that point), increased work of breathing, lethargic (who wouldn't be with no sleep all night??), etc. She was going to call in an antibiotic prescription for Peyton to get started on. I mentioned to her that I'd called the GI clinic last week about the continued gastric bleeding but hadn't heard back. I also mentioned she'd had blood work done in the GI clinic on 12/16/10 and had heard nothing back on that. I figured since they've spoken to each other regarding Peyton recently, perhaps she could act as an intermediary for me and get the information from them that I've been waiting on.
Later this afternoon, I received a call from someone from the GI clinic. She basically said upfront that the GI doctor and pulmonary doctor spoke about Peyton and she needs to have a bronchoscopy and endoscopy ASAP. They want to do it Wednesday. I mentioned Peyton is sick with a fever. She said they are aware. That tells me the level of importance. If they are willing to sedate her (yes...another general anesthetic is involved) while she is under the weather, it must be serious. The nurse I spoke with in the GI clinic indicated that this gastric bleeding she's having just isn't good. She spoke with the endoscopy coordinator and the only thing that could hold up the procedure from happening on Wednesday is if Peyton's fever doesn't break. Anesthesia won't be wanting to sedate her if she's had a fever. This all came about late in the afternoon, and it's been like prayers are being answered because for the first time since the wee hours of the morning, her heart rate is back in the 130s/120s (still a bit high, but not creeping up to the high 160s/low 170s as it was at its worst!). True, she's had a 3rd dose of Tylenol since it all started, but nothing has helped until now.
Please pray with us that Peyton's fever breaks, first and foremost, and that the antibiotics (which are quite strong and aren't usually prescribed for children) kick in ASAP so she can have her procedure on Wednesday. They're going to call me tomorrow to check in on Peyton. I'm praying I can tell them she's vastly improved. And, should she have the bronchoscopy and endoscopy as planned, please pray with us that whatever is causing this gastric bleeding is healed and the bleeding stops. The last thing I want to hear is that Peyton requires some sort of surgery. As we know from our visit to the surgeon a few weeks back, it is possible that what is going on is all part of the decline in her overall condition.
We covet your prayers for Peyton's healing from this illness and from the bleeding she's been having. Thank you!
Tuesday, April 22, 2008
What Was Once Lost...
Ok...so I either have apologies to make or thanks to give to God for slapping me upside the head just now. I just got a phone call from Texas Children's Hospital's heart center. Someone turned in a hearing aid. The lady remembered me and knew exactly who it belonged to. I'm sending a courier over now to get it. So, why when I had what was arguably the most miserable day in recent memory, I pretty much lost all hope and faith. Why I cannot hang on to those words “Have Faith” is beyond me! To top it off…does anyone watch the show “Eli Stone”?? If not, it's a high-powered attorney turned humanitarian as the result of a brain aneurism which causes him to hallucinate about the next big case, which winds up being a pro bono case which will have a great impact on the “lowly” people who need the help of someone like him. His hallucinations often involve the music of George Michael, or George Michael himself. So, perhaps I've gotten too “in” to the show where I've had George Michael's song “Faith” on constant replay in my mind. I think I need to pay more attention to the little voices in my head!
God bless whoever turned in the hearing aid! And thank you to all of you for giving me encouragement.
Monday, April 21, 2008
If It's Not One Thing....
Peyton went to Texas Children's Hospital this morning for her echocardiogram. This test was the result of the past few months of frustration which began with the ill-fated trip to the cardiologist way back in February. The visit where I drove all the way out there only to find out they had no information on Peyton, therefore no appointment. After a lot of runaround, an echocardiogram was finally scheduled. Typically they will sedate the kids. Since Peyton has sleep apnea, this wasn't an option. So, I was already curious as to how this would play out today. In my heart I think I knew what the end-result of today would be. I should have just not gone and saved myself a lot of bother. After rearranging my schedule to have this done, well, wouldn't you know, they couldn't do the echo. Peyton was too fussy and was moving around too much to get anything accomplished. The tech was not pleasant at all and she made me feel guilty for not being able to keep my child calm. Well excuse me for having a seriously developmentally delayed child who is extremely sensitive to people touching her! The only alternative was sedation, but since the sedation orders were nixed, they couldn't do anything. Besides, with the feeding restrictions prior to sedation, even if they could do it, they couldn't do it today. I said she can't have the light sedation because of the apnea - that was why the orders for sedation were cancelled. I also said the reason she was having the echo was BECAUSE of the apnea. I said why the appointment was not scheduled to be done under a general anesthetic was beyond me. I was SO furious. I just sat in the lobby and cried and vented to Ron on the phone for a while before getting on the road. I should just expect by now that this is our luck.
So, on the drive back, I happened to glance back at Peyton to discover only one hearing aid in. First chance I got, I pulled off the freeway and did a thorough search. Nothing. I drove all the way BACK to the hospital. Of course, the garage was full, so I had to go to another and walk all the way back. I searched the area in the garage where we'd been. I went to the first floor reception. They hadn't had anyone drop off a lost hearing aid. I went to lost and found. Nothing. I went back up to the 20th floor cardio lab. They searched the linens. Nothing. I went back to the garage and searched again. Nothing. Of course, anyone I actually spoke with didn't seem the least bit interested so I wasn't able to leave my contact info. Hard to do when people just turn their backs on you and move on to their next bit of business.
So, after a horrible start to the morning in the echo lab, we're now down a hearing aid. And, yes, it is the SAME hearing aid which was already replaced. The warranty covers 1 replacement in a 3 year period. So, yeah, this one's on us.
In a continuation of this wonderful day, I'm off shortly to what will probably be Peyton's 3rd last therapy session for who knows how long, as the provider will at that time force us to pay $100 per visit (twice a week) in anticipation of problems with the insurance company. Nothing I say does anything to help. They are adamant that the insurance is going to pull the same stunt after 25 visits as they did last year when we wound up with over $1,600 in denied claims which still remain unpaid. According to my HR and the insurance company, 2008 claims ARE being processed in accordance with our plan and each claims is reviewed for medical necessity as we long-ago passed the 25 visit mark with this diagnosis (they review for necessity after 25 visits and then every visit after that is individually reviewed for necessity - it just happens that mid-Oct. through Dec. were denied and as of her first 2008 visit, all claims have been approved which just seems a little fishy). Anyway, again, nothing like the feeling of not being able to provide your child the things she needs.
I'm not having a good day at all and, in fact, am pretty much at an all-time emotional low where this is concerned. I'm just so tired of the runaround we get everywhere we go. I'm tired of things not being done that need to be done. I'm tired of so much more. But I have to wake up (insanely early) each day, throw a smile on my face, and pretend each and every day that life isn't they way it really is...because let's face it, sitting at my desk at work crying all day isn't really professional. And that opens up a whole other issue....maybe another day.
Why things have to be so difficult every time I turn around is beyond me. I just wish we could all get a break down here. Last I checked, I didn't think any of us did anything to deserve what life keeps throwing at us.
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