Hospital Life...Day 12

Weekends are a little quieter here.  There aren't so many people around, it seems.  The residents came by and then the team {a smaller version of the team that rounds during the week}.  I was sad.  The doctor who has been with Peyton from Day 1 went off service.  A new doctor is on for the weekend and then another new one will be on after the weekend.  Truly, there's no "bad" doctor on the list of doctors whose service she could be on, of all the ones we've ever seen.  But if I had to choose my top 3, these three would make up that list.  It's funny, because I had just had this discussion with Ron.  I knew that this was coming.  I shouldn't fear change so much. 

Since we're in it for the long haul, I had Ron bring a couple comforts of home for Peyton - not just me.  She's had her pink hippo since we went to the ER 12 days ago, but I had him bring her frog and her blanket from her crib at home.  We've got an animal theme going.  the purple elephant is new.  MUSC has a volunteer program called Happy Wheels.  Donations of books and toys are given and each Thursday, volunteers come around with a cart.  Each shelf of the cart has toys or books {one week it's toys, the next it's books} grouped by age range.  Peyton has been the recipient of several Happy Wheels items over the past few years.  The elephant was from this past Thursday. The frog is actually from one of her stays this past February.  What a great program to have.  If you would like to find out more and especially if you would like to contribute in some way, you can read more HERE.  As for the hippo that everyone seems to love so much, I received that myself as a "blogger perk".  Over on my personal blog, I was contacted by a company called Hullabalu and asked to do a review of one of their toys in exchange for the toy of my choice.  I gladly accepted the offer.  You can read about that over HERE.  It's too bad Dr. M went off service because Peyton's about to add another animal to the collection later today as I asked Ron to bring another specific item from home.  He was always commenting on her little friends.

As for how Peyton is doing, it is honestly so hard to say.  I had a talk with the doctor yesterday outside of the whole team being present and there is still the hope that we will get her back home.  Some of her lab numbers look a little improved {hemoglobin, albumin} but she just doesn't look good.  I took this picture yesterday.  She doesn't look well here and she doesn't look as "well" today as she does in this picture.

One concern that I have right now {since yesterday} is that her arms and hands have been icy cold.  Absolutely freezing.  Sometimes it's her entire arm through her hand.  Sometimes it includes part of her side and part of her chest.  Sometimes it's one arm/hand and not the other.  Sometimes it's patchy spots of coldness on both sides.  Along with it, she's so clammy to the touch.  She is sweating a lot.  If you run your hand through her hair, her scalp is wet and her hair is soaking wet in places.  Her temperatures have been up a little - in the upper 99s to 100.3ish.  For her, that's high.  Fever yet freezing cold to the touch.

I don't understand what is causing this to happen.  Is it something in her brain not firing right?  I'm not sure.  The doctor this morning said that it's possible that with the diuretics being given to take fluid away, there's a shift in her system that is causing the hemoglobin numbers to be falsely higher than they really are.  I can't explain it right - but it made sense when he explained it.  Her hemoglobin has been trending upward the last couple of days - enough to where they called off a possible blood transfusion on Friday.  It's possible her anemia is causing this issue with her body feeling so cold.  It could also be some sort of infection, although I think that's a small possibility right now, but certainly something to watch for.  They are obviously going to keep a close eye on everything.  The doctor said that it is possible she may need a transfusion and so not to be surprised if that does become necessary again.

Peyton completed a total 3 infusions of iron by IV yesterday, after being given once every couple of days.  The plan is to repeat an iron study on Monday to see where things stand.  Peyton's potassium is also really low.  I believe they had added some potassium to her list of meds {via g-tube} but it is quite a bit lower now, so they are currently giving her an IV infusion of potassium.  That will run over a total of about 3.5 hours.

Gastroenterology has weighed in.  They ordered some stool studies to be done.  She doesn't have c diff, so that's good.  Some of the studies are going to take some time to come back, but they are essentially looking to see what fats and proteins are being excreted in her stool.  They currently don't know where she is losing her protein.

I just want to thank the people who have been so good to us.  Neighbors who have helped out with Moira - you have no idea how grateful we are that you've been able to step in and help with her.  Friends, please remember Moira when you're praying for us because I know this is hard on her even if she doesn't say a whole lot.  I don't know how much she is aware of how sick her sister is.  We haven't had a "big" talk with her because we don't want to cause more harm than good, especially if it's done prematurely.  But she has to be aware on some level, so please pray for her.  Friends who have come to visit, brought food or snacks - thank you!!  Your company is so appreciated.  So is everything else.  But just to have company is huge.  When we're up here alone, it can start to feel pretty isolating, even if I do have the internet to bring the world a little closer to me.  Family.  Wow.  We were expecting Ron's dad and his wife to visit long before Peyton was hospitalized.  I am so grateful they still came even when the found out half the family wouldn't be home and that they got a chance to come visit with us up here.  We also had the unexpected surprise of having my cousin and his wife come to visit.  He just happens to be Peyton's godfather and they are vacationing in the Myrtle Beach area, which is maybe a couple hours north of here.  We're so grateful they came to visit!  

And then there's the medical side of things.  This is Day 12 and, honestly, until a little blip with the nursing this morning, I haven't had a single issue or complaint about anyone or anything.  Even with the issue this morning, everything is resolved and we're back to things being exactly as they were.  From doctors to nurses to respiratory therapists to nurse's aides to everyone else who has been involved somehow in caring for Peyton, please know that all you do is so very appreciated.  I know without a doubt that Peyton is a mystery.  A challenge.  I know that what's been going on has probably been frustrating.  As Peyton's mom, I watch and I wish I could fix things.  I don't know how it feels to be the professionally trained person who is supposed to be able to fix things only to keep coming upon more and more obstacles.

So, that's kind of where we stand for right now.  I'll be keeping you posted....

Hospital Life...Day 11

Today is Day 11.  Friday.

This morning when I woke up, I immediately could hear Peyton's junky sounding breathing.  I looked at the monitor and her heart rate was up in the 150s/160s.  She was a little fussy as well.  As soon as a nurse came in, I asked if she could get something for pain in case that is what this was about.  Her temperature was also up.  37.7 C {99.86 F}.  It seems that people generally want to see her hit 100.4 F before they get concerned, although she normally runs around high 96s to 97.4, so 99.9 is high for her.  She was also very sweaty.  A while later, she was clammy to the touch and her arms and hands were freezing.  I'm not sure what that was all about.  As I type this now, she's 100.2 so I think they've called the doctor.  Her right hand is like a block of ice right now.  Earlier it was her arm and her hand.

Peyton's hemoglobin and albumin levels have come up a bit, so she doesn't need any transfusions for now, so long as she keeps trending in that direction.  Her white count is up a little, so they'll keep an eye on that.  She received an iron IV infusion this morning {her third so far}.  Hopefully she will start maintaining appropriate levels on her own.

I asked this morning if it would be possible to speak to Peyton's doctor without the whole entourage.  I honestly don't mind when a team of 10 or so students/residents/doctors come in.  I had questions that I wanted to be able to ask and discuss without an audience.  So once they came around, he stayed behind and we talked about all the concerns I have for Peyton.

My biggest concern this past week hasn't been when Peyton will come home.  It has been if she will come home.  I've said before that this visit has brought us the closest to feeling like that is a definite possibility.  I think that's a legitimate concern.  I am reassured that the doctor is still optimistic that we can get Peyton home.  I think there's a lot to sort through before that happens.  I feel more encouraged by some of the labs that have come back, although to look at Peyton, I still see a very sick little girl.  If I posted a series of 11 pictures, one for each day of her hospital stay, you would probably notice differences, but I think you would agree she still looks pretty horrible.  When I sit here listening to her breathe, there are times when I wonder how she can breathe sounding as bad as that.

Peyton is unique.  She's hard to read.  She's challenging.  She can change in an instant.  The little positive changes that are happening are good.  No, they are great.  I'm very thankful she did not require that second blood transfusion, although if it does become necessary, I will be equally thankful for her to be able to receive it.  I believe we are still a long way off from heading out the door with her and a lot has to happen between now and then.  I also think a lot could happen between now and then.  My head understands the information I am getting.  I do hope and pray for the best outcome and that she will be able to make it home.

In my heart, though, I know her time with us is meant to be short.  I know that it's all in God's hands.  Regardless of what is done for her here, it's in His hands and His timing.  I wish I could visualize on a timeline where we are at.  But we can't.  She's so complex.  Peyton tends to do things Peyton's way and we just follow her lead.  I asked specifically about where we were at in terms of needing to call everyone in.  Right now, at this moment, his answer was that if people wanted to come see her and have a nice visit in Charleston while they're at it, then they should.  But we're not at the point where if people want to see her, they'd better get here today.  Of course, all of that is subject to change.

I guess I will use the phrase that my Ob/Gyn in Houston used over and over with regards to my pregnancy after a massive pulmonary embolism in 2004 and then treating my general health again after an even more massive P.E. in 2006 {2 weeks after Peyton was born} - I am cautiously optimistic.  Although I'd probably say I'm being far more "cautious" than "optimistic" right now.  If you wonder where Peyton gets her ability to overcome some medical odds, you might take a look at my own medical history.  Well, that and the power of prayer and God at work in our lives!

As the day progresses, we are just watching and waiting and praying.  I'm waiting on someone to come and see Peyton since she's developed this higher temperature.  In the meantime, I'll continue to be listening to some powerful worship music.  I realized when I checked my iTunes that I'd listened to Strong to Rescue, a song from the Seacoast Worship album by the same name, 190 times 207 times {just checked again!}.  However, right now, I'm listening to Kari Jobe sing her little heart out.  This is such a powerful song.  I am listening, praying and leaning on this now.

Please know how much our family appreciates all of the prayers and support of all the people this blog reaches.  I know it's reaching more people than we even know.  If you feel led to share Peyton's story so that she can be covered in even more prayer, by all means please do so.  I also know it's possible that some of her medical team may come across this blog and we can't even begin to express our gratitude for everything you are doing for Peyton.  Thank you.

Back to the Hospital

We thought we were in the clear when it seemed that Peyton did not get that nasty GI bug that Moira, Ron and myself all got.  Yet this morning, we wound up taking Peyton to the ER.  Not with a GI bug, but yet another respiratory ailment.

I've spoken several times lately about how Peyton is requiring oxygen during the day while awake - something that never used to be the case.  This has not changed for the past several weeks.  However, over the past couple of days, the amount of oxygen she is requiring during the day has increased.  She has also been a little on the junky side, with increased heart rate and the odd low grade fever here and there.  I've been in touch with the Pulmonary clinic about her condition and it was suggested that perhaps we might need to start a course of IV antibiotics.  We can manage this at home since she has a port.  By the time last night rolled around, I was thinking I'd definitely make the call to the pulmonary clinic to suggest that we get that started.  Peyton was sounding horrible and it didn't look like we needed to wait on this any longer.

Then this morning came around.  Peyton was hot to the touch so I undressed her and got a temp on her.  She had a temp of 100.8.  That may not seem like a raging fever, but you have to bear in mind that her "normal" is upper 96 degrees to mid 97 degrees.  And, of course, we're ultra cautious anyway, so 100.8 isn't anything to mess around with.  In addition, she sounded even worse and she just looked "off".  I made up my mind that we were going to have to take her to the ER, but I also knew we'd have to call the home nursing agency pretty quickly to call off her nurse for today.  She has transportation issues, so we would have to be sure to catch her before she left, as she has someone bringing her to work.  No sooner did I form that thought did the agency call me to say that she had called in sick so I guess for today it all worked out.  Ron got Moira on the bus to school and I got Peyton and her gear ready to go and we headed off to the children's ER at MUSC.

Ron dropped us off at the door and then went to park the car.  I went in with Peyton and we were taken back to a room pretty quickly.  Once in a room, it was mere minutes before a doctor was in the room.  It seemed almost immediate.  While we did bring her in because she was obviously sick, apparently she was sicker than we realized.  The doctor enacted their "rapid response" protocol immediately based on their assessment.  This meant that her port was accessed within minutes and a bolus of fluids was pushed through very quickly.  They gave her additional fluids shortly afterwards.  Antibiotics were ordered and given fairly quickly as well.  A second antibiotic was given not long after that.

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A lot of blood was drawn for labs and a chest x-ray was also done.  The x-ray doesn't look too bad.  We're still waiting on the blood work results.  The doctor was in several times.  We knew pretty early on that Peyton was going to be admitted to the hospital, but there was some concern over whether it would be to the PICU or to the PICU step down unit.  They eventually decided on the step down unit.  With the fluids and oxygen, Peyton's color and mood started to improve a little.  Her heart rate finally came down out of the 150s.

We didn't spend a horribly long time in the ER before Peyton was taken to a room.  She is under the care of the PICU doctors, as opposed to the general peds team.  She wasn't in the room long when her Neurologist came by.  He just happened to notice in their computer system that Peyton was in, so he came by to see what that was all about.  I was glad, since I was actually going to email him to let him know.  We discussed the lumbar puncture and other research type issues that are hanging out there for Boston.  He is thinking that if she is doing ok, he may be able to do the lumbar puncture on Thursday.  

In addition, he is talking about contacting the researchers {Children's Hospital Boston and NIH} to see what we can do about expediting some of the stuff that's hanging out there in the hopes that we can get her some form of treatment.  Of course, it's research and there are FDA guidelines and I'm sure other sorts of hurdles to cross, but he is hoping that somehow he might be able to take some of that from them and perform whatever needs to be performed right here at home rather than have her travel.  He is looking at it from the point of view of being "emergency and compassionate" reasons.  We will see what happens.  I would say that if someone said we were needed up in Boston in the next month, we probably wouldn't be going.  She needs to have all this stuff done, but it's getting to the point where it just isn't going to be feasible because of her medically fragile state.

We aren't sure what is going on.  There is the great possibility that what is {and has been} happening are not so much an illness as they are signs of her overall condition diminishing.  As the PICU doctor said, often children with severe issues like Peyton, over time, will become weakened in the areas involving swallowing, breathing, and so on and what appears to be an illness might actually be more of an inability to perform these functions well.  We just don't know.  I would suspect, though, that because of her increased oxygen requirement during the day that it is the latter.

In addition to all of this, Peyton's level of pain today must be excruciating for her.  She is on Neurontin and Oxycodone for pain, but it seems like that's not doing anything.  I noticed it first thing this morning.  I barely touched her leg and she began screaming out in pain.  I don't know what is different about today but it is unbearable for her to be touched or moved.

We pray.  We pray often and we pray hard for Peyton.  The problem is that we don't know which direction our prayers are supposed to take.  It is heartbreaking to see your child enduring so much.  You wonder how much a body can take.  In addition, this isn't something we've really talked about openly, but we're being asked questions that no parent should have to answer for their child regarding the "what if" scenarios.  As much as you are praying for Peyton, please pray for us that we will have the wisdom to make the best decisions for her.  Please feel free to share this site to people you know would be willing to pray for Peyton. She needs many prayers!!

Thank you!

And So It Continues...

That heading could apply to a couple things going on, so here goes:

Yesterday I asked for continued prayers for Peyton that she doesn't wind up getting sicker than she is now.  Please please pray. She wound up with a fever last night.  None today, thank God.  But she's not herself.  She sounds very junky when she's breathing.  She's becoming clammy every now and then throughout the day.  She's requiring oxygen support during the day.  Her oxygen levels keep dropping into the low to mid 80% range.  She began an antibiotic a couple days ago.  I don't see any difference for the better so far.  I a in touch with the nurse practitioner in the Pulmonary clinic since we visited on Tuesday.  I will likely try to get some input as to what things would need to look like for us to wind up going to the ER - since it's the weekend and all.

Home nursing.  If you've spoken with me lately, you'll know that the past few months have been so frustrating.  We let one nurse go at the beginning of October.  There are certain things that one just should never do on the job.  We were able to fill in her 40 hours with another nurse who, incidentally, we had to let go a couple weeks ago.  There are certain things that one just should never do on the job.  Not nearly as bad as the first one, but I don't think I am being overly demanding when I say that my expectations for a home nurse include a certain level of alertness while on the job.  Between that and recently getting our nursing hours increased, it's been very difficult to get people in here.  We had a temporary nurse {her regular patient was hospitalized and she was in need of hours at the same time we were needing a nurse}, but as of today that isn't an option for us {her patient is home again}.  They are pulling in nurses to fill in the gaps.  We'll see what next week's schedule looks like, but it's going to mean that we have about 4 nurses in here, which ideally is not good for Peyton.

Sigh.

Nothing is ever easy.  And so it continues...

Hello...It's Been A Long Time!

It has been a while since I posted!!  If you assumed that all was going reasonably well in our world, you'd be right.  Peyton's been holding her own for the past little bit.  Still really junky at times.  Still requiring lots of suction.  Occasionally getting a little sick, but never amounting to much.

Yesterday she had a follow up with the Infectious Disease doctor.  For the past couple weeks, she's had these off again on again low grade fevers...mostly on again for the past 5 days or so.  Her heart rate has been higher than normal as well.  Suction needs have been increasing.  He agreed that something was going on, but was hesitant to start her on anything unless we knew for sure that we had something really going on.  The last thing we want is for her to become immune to antibiotics.  He said that if her temps rose above 100.4 to give him a call.  So far, the highest has been only around 99.6.

What a difference less than a day makes.  Peyton woke up at about 4:30 coughing and gagging and definitely needing suctioned.  She was also throwing up a little.  She continued to cough.  It was like something was stuck but it wasn't coming up.   Poor little girl.  It just wasn't clearing so she continued to cough intermittently.  She finally settled around 5:00 but continued to cough a little here and there.  Then it was back to the throwing up a little again around 7:30 or so.  She felt pretty hot, so when I changed her diaper I checked her temp.  101.3!!  In addition, her oxygen was only at about 93% while ON oxygen.  That has improved a little.  Her heart rate, though, has been ranging between high 150s to low 170s!!  It should be in the very low 100s.  108ish, like.

Just after 8:00, I got on the phone to call the doctor.  He actually answered himself and I spoke directly with him right then!  He is concerned about aspiration pneumonia (or the risk of, at the very least).  He wants to start her back on some antibiotics today.  He said we should see a difference after about 48 hours.  If not, I'm to call back.

So, while we've had a pretty decent run of it, we're putting Peyton back on antibiotics.  We appreciate your prayers that she responds well and we see much improvement in the next 48 hours.

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! 

Post-Surgery & A Fever

Peyton is bouncing back from her surgery finally. She spent most of the weekend being very sleepy and eventually a bit on the cranky side. She was finally opening her eyes more than half-way by the end of Monday. She's doing better with that now. Now, though, she is starting to rub her eyes a lot more, which is something we do not want. That will introduce more bacteria to her eyes and worsen the problem. I think what's happening is that her eye lids are in the healing process and are probably very itchy right now. Hopefully she can tolerate the compresses and medication enough to give her some relief.

Last night, Peyton came home from her babysitter's with a 102 temperature and her breathing sounded extremely congested and "crackly". I had great fears about pneumonia developing as it did back in May. Ron's home with her this morning and I'll leave work early to be with her this afternoon. Hopefully she can see her doctor and rule this out. Ron said she sounds a bit better this morning and her temp is down a bit. That is good news.

All of this makes us feel like "Can't the Fontenots EVER catch a break??" It seems like we just can't. I know that better, easier times are ahead. I have to believe that. But just when you think things are looking up, something always comes up. I just feel so badly for her to be going through everything she goes through. It breaks my heart that that's what her life is right now.

I'm very anxious now for our vacation, which begins on the 21st. We'll be hitting the road around 3am on the 21st and driving as far as Illinois. The kids are great travelers, thank God, so that shouldn't be too bad. Just a long day. The next day we'll drive to Green Bay, WI to spend a night with family there and then on the 23rd we'll arrive home at my parent's house. Yes, it is a long drive, but right now I'm thinking it sounds GREAT compared to what our every day life consists of at the moment!! We need that break - the change of scenery and change of pace.

I'll keep you updated on how Peyton is doing.

To The ER

Because Sarah doesn't have access to a computer at the moment, she has asked me to send off an update on Peyton's condition. For the past 4 - 5 days, Peyton has not been feeling well. Since Sunday she has only been awake for a couple of hours in total and is very restless. On Saturday, she saw the pediatrician on call. In spite of looking ill, the doctor couldn't find anything wrong with her and sent them home. She continued to sleep most of the time, have a low grade temperature, refused to eat, had congestion and wheezing. On Tuesday, Ron took her back to the pediatrician's and she saw the same doctor as on Saturday. She agreed that Peyton looked worse, but still couldn't find anything wrong. At this point Peyton did have a fever. She did order some blood work. Later in the afternoon, the nurse called to let them know that Peyton's white count was up. About ten minutes later, the same nurse called back telling Sarah to bring her in first thing this morning.

When Peyton went to the office today, her own pediatrician saw her. She has sent them over to the ER at Christus St. Catherine's Hospital which is next door to her office building. She wanted Peyton put on an IV because she is dehydrated. Perhaps her lethargy is caused by this. Dr. Haney wants a chest x-ray done and an RSV test.

Sarah phoned a few minutes ago from the ER. After three tries, the IV has been started and Peyton is getting fluids in. The ER doctor has been in conference with Dr. Haney. Right now, Peyton is on her way for a chest x-ray. It is quite possible that she will be admitted, at least over-night for observation.

I know you will keep them all in your prayers. As soon as I know any further details, I (or Sarah) will update the site.

Granny

Peyton is Sick

We had such a good week last week! Then things turned a little for us. Peyton had a little fever on Saturday and was fairly fussy. At 6am Sunday, she woke up screaming which is very unlike her. She was burning up - had a temp of 102.2. We did everything we could to try to bring down the temperature, but she hovered between 100.5-102 almost all day. We talked to a nurse at the pediatrician's office first thing in the morning and she thought it sounded like we were ok to wait til Monday to see the doctor.

We saw the pediatrician on Monday and it looks like Peyton had some sort of virus and possibly a bladder infection. Her fever broke early Monday morning and did not return. She was able to go back to her daycare on Tuesday.

When the doctor weighed her, Peyton weighed in at a whopping 16 lbs 12 oz!!! This was fantastic news. Her goal weight for our next visit to the Gastroenterologist on 2/15/07 was 15 lbs 8 oz, so she's doing great. Our concern now is making sure all of her feedings are by bottle and not the tube. She was doing good til she got sick - probably 90% of her feedings were by bottle. Now it's the other way around. Hopefully that will change as she starts feeling more like herself.

I took Peyton to her glaucoma specialist this morning. Her eyes are looking pretty good. The left eye (the one to have the shunt put in most recently) is a little hazy, so probably the pressure is still up a bit, but it may go down over the next day or so as the suture inside is now at the point where it is dissolving. She needs to be fitted for a new contact lens for her left eye as her current one is not sitting in place properly.

All in all, it's been a good week, feeding issues and virus aside. We are still waiting the results of the genetics testing from the skin biopsy done on 1/8/07. Hopefully we won't have to wait much longer.

Moira's doing great. I can't believe she'll be 3 next month!! Where did the time go?? We're debating having her birthday party at Chuck E. Cheese. I'm sure she would love that.

Peyton's hearing and vision teachers are coming this afternoon. I'm sure that will go well. They haven't been here together before. They only share a few students. They wanted to make sure they were on the same page as far as what they were doing to work with her. That is a good thing.

Will keep you posted on how Peyton is doing. Seems like we've finally gotten into a good stretch where we don't have a whole lot going on with her!! I can handle the ordinary things like hearing/vision teachers and occupational therapy!