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! 

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.

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.

In Other News...

With all the craziness in our lives, I thought it was important to take the time out to share a story which brought so much hope and joy to my life just a couple days ago.

I traveled to Canada on my own between April 2-7 while my mother had a mastectomy just 2 months after being diagnosed with breast cancer. With everything she has done for our family, I felt the urge to try to be there for her when she needed a hand. It was difficult for me to leave the kids, but I knew they were in good hands. I was anxious to see them upon my return.

Moira was so excited when I came back. She was still up when I arrived home late on the evening of the 7th. Peyton, however, was asleep and I wouldn't see her until after work on the 8th. I was quite anxious to see how she would react. It was a busy evening, as usual. I picked up Moira, went to the chiropractor, ran home to get her fed and changed and out the door to her Tuesday night faith formation class at church. Ron was picking up Peyton, but made it home in time to take Moira to church. So, when he got home, he literally brought Peyton in, put her on the floor in the living room, and ran back out the door with Moira. So, I was on my own for what was to come.

Peyton, as usual, was happy to be home. When I walked over to her, the smile on her face was incredible. She was SO thrilled to see me. It just made me so happy. Now, as you know, though Peyton is almost 23 months old, she cannot speak and does not say simple words like "mama" or "dada" or any of the usual first baby words. She makes a limited variety of sounds, but nothing you could call a "word". If we say "Up, up, up!" in this little game we have, she might respond with a simple "uh" - so she's getting the concept, but just doesn't outright say "uh" if she decides at any random moment that she wants picked up. Anyway, long story short...After a few moments of smiling and bouncing a little on the floor, as she does when she is excited, she started saying "mamamamamamama". Just a constant repetiton of the "ma" sound. Not so much "mama". But, given that she can say other sounds, and she chose at that moment to use the "ma" sound... Well, I nearly broke down. It was the first moment where I just knew that what she was saying was a recognition that I am "mama" to her.

So, it has been nearly 2 years of waiting anxiously for one of those big milestone moments which seem very few and far between. This one was definitely worth the wait. It was just one of those moments where, as difficult as things often are for us, it just goes to show that there is hope that things will improve and that SOMEONE is watching over us. And it all goes back to that day a few months back when Peyton's hearing aid was lost and found destroyed in the parking lot when I could really hear a voice saying "Have faith."