A Seven Month Update

I can't believe how quickly December rolled around.  I think we were several days in already when it really hit me that it's December already!  December 4th marked seven months since Peyton passed away.  Perhaps it was my pre-occupation with my upcoming surgery or the busyness of the season, but the 4th came and went smoothly.  That monthly marker usually hangs over me.  This month was the first month where it didn't weigh quite so heavily.  It is heavy, but I felt like the day passed by with perhaps a little more peace in my heart.

I realized recently that, in case you have been following the story about my own health issues here, I really haven't updated that in a long while.  So, unless you have been following over on my regular blog, you may not know what's up with that, between my ankle injury and the pulmonary embolism {PE}.  I was awaiting results from my ankle MRI.  I saw the Orthopedic Surgeon on October 30th as an already scheduled follow up visit from the first one I had after the ankle injury.  The MRI was scheduled after he learned about my PE.  The timing of the MRI wound up being such that he would have the results in hand when I saw him on October 30th.

The results weren't great.  I felt like things "weren't right" even before the PE slowed down my physical therapy progress.  The MRI confirmed they weren't right.  I didn't have a bad sprain and pulled ligaments.  I actually had a torn peroneal tendon.  What does that mean?  You can click on that term to pull up a link or, simply, you know the bumpy bone that sticks out on the outside of your ankle??  The peroneal tendon runs along the bottom side of that and down to your foot and up the side of your leg.  That tendon was torn when I rolled over on my ankle.  This type of injury is often seen after repeatedly doing that, which I have done for as long as I can remember - just never this bad.  The ligaments are loose and it causes the ankle to be unstable which, in turn, causes the ankle to turn over suddenly.  Ligaments can heal themselves over time.  Tendons really don't.  As soon as he was explaining this, I knew what was coming.  Surgery.

The problem with my case is that I have the recent history of PE.  The surgeon wanted medical clearance from both my Hematologist and Pulmonologist before proceeding with the surgery on my ankle.  A tentative date was set for November 21st.  On November 11th I had an appointment with my Hematologist.  He was all for me having the surgery, as he knew I was in a lot of pain.  However, he wasn't on board with it happening so soon after the PE.  Ideally, he would have liked for it to be at least 3 months from the PE which happened on September 30th.  Realizing the pain I'm in and the injury, he said anytime after the first week of December should be fine.  That meat postponing the surgery date.  The new surgery date was December 12th.

I was to show up at the hospital at 11:30am on the 12th {last Thursday} for 1:30 surgery.  Originally it was 2:30, be there at 12:30, so an hour earlier was fine by me.  He seemed to be running long, so things really didn't get rolling til closer to the original time, if not a little later.  Ron and I said our goodbyes as they wheeled my stretcher down the hall.  He was back out in the waiting room when we stopped.  Something was missing in the paperwork.  I'm not sure if it was an expired clearance from one of the other specialists I am seeing or if they were missing the clearance altogether, but something wasn't right and I couldn't go back to the OR til it was fixed!  Long story short, it had to do with the Hematologist.  They moved another guy to my time slot in the OR while that mess got sorted out.  I was in the OR at 4:35pm.

At 5:51 I was back in recovery.  That's what I first remember - someone giving that time as when I was waking up.  I was in quite a lot of pain.  I had to get IV pain meds a few times and then an oral med before they sent me home.  I was home by 7:00pm or so.

I wouldn't say my pain was out of control Thursday night.  Ron went and got my prescriptions filled, came home, and took care of my needs and I pretty much just went to bed right away.  I was in and out of sleep all night, but sometime in the early morning, I knew I'd have to get him to call the doctor's office for me to get something different or stronger for pain control.  I knew at 8:30am Friday that the meds I had weren't going to cut it.  I know the first 24-72 hours after surgery are the worst, but they shouldn't be spent in nearly that much pain.  He left a few messages and finally heard back from them at 4:00pm.  Let me tell you, that is a very long time to wait when you're in so much pain all you can do is cry, shiver with teeth chattering and pray for someone to whack you over the head with a shovel so you'd lose consciousness.  I kid with that last part but it was the worst pain I've ever experienced - and that is saying a lot considering all I've been through.

What ultimately happened is that my oxycodone prescription was already a hefty dose.  I was already taking the max dose at the shortest intervals with no effect whatsoever.   They changed the dosing schedule and the amount to take of that prescription at certain time periods so that three out of every four hours around the clock, I could get something.  It wasn't necessarily the same each time, but there was only one "off" hour out of every four.  If I didn't need it, I could skip but I had to stick to each hour being specifically as directed.  I wasn't skipping anything.  I finally got relief and Saturday morning was fairly good, all things considered.  The pain started to creep back up on me, but so were some of the side effects of taking that much pain medication.  I have been setting alarms round the clock to make sure I didn't miss any doses, but at some point early on during the night Saturday night, I realized that this strict schedule made sense on paper and upon review of it in writing...every time.  However, when it came to grabbing the bottle of meds and sorting out how much {1 or 2} to take, it wasn't computing.  It made me question things to the point where I knew what I should have taken at a certain time, but wasn't sure if that's what I'd actually done.  I realized the best solution, since my pain was actually lessening at that point, was to take nothing {I wasn't absolutely needing it} until I could get to the start of a new four hour cycle safely - where I wasn't somehow taking two doses with 2 pills in a dose within one 4 hour period.  Confused yet??  I kept setting those alarms just to be sure I wasn't losing any ground on pain control.  I wound up not taking any oxycodone until almost 1:00pm today!  I took some Tylenol in the morning, but that was it.  And I wasn't needing the oxycodone, so this was good!  I did start taking it in the afternoon and this evening ramped it up to the higher dosing, but I'm thinking that the end of the days are going to be bad, so get used to it.  The more frequent dosing caused me to go through my prescription faster.  At least I know that I can make it to Monday with what I have left.

Recovery so far hasn't been pleasant.  They were definitely right about the first 24-72 hours.  I'm now past the 72 hour mark.  As I said, I think the end of the days will be more painful.  It was with the injury before surgery anyway.  The peroneal tendon has been repaired and a couple ligaments tightened up.  I am now in a very heavy soft cast until I see the surgeon for a follow up on December 27th.  I don't know if I'll be put in another cast or just back in the boot at that time.

I am fortunate that Ron's mom had already been planning on visiting at this time before the surgery date was changed to December 12th.  She arrived on the 11th and leaves Tuesday.  It's been very helpful to have her here.  I really appreciate everything she has done. I also appreciate Ron and Moira's help.  Ron has taken a few days off.  With everything we went through earlier in the year, he's not got a lot of days off remaining, so it's a good thing it's almost the end of the year!  Ron and I already asked each other for forgiveness for ourselves for times when we might become frustrated or lose patience with the other.  I hate being in this much pain and being so dependent.  I don't like asking for help.  However, I simply cannot do things without help right now.  I am trying to do a little more each day - and more quickly than I probably would have if I hadn't had the blood clots to contend with.  Our main goal right now is to do our best to prevent that from happening again.  There's more of a risk after surgery anyway, but after surgery already having blood clots...that's a little different!

We did our best to help minimize Moira's concern for me and this surgery, but she's a worrier.  She's been through so much with us, especially this year.  I tried to play up the fact that I was excited to get the surgery over and done with so I could get on with the business of truly recovering.  I don't know how much she bought that but it was all I had.  She sees the pain I'm in now.  It's hard to put on a brace face when you want to scream in agony, but you do it anyway.  Or you try.  But she knows I'm hurting and she worries.  I find myself again playing up the fact that the worst is over and now I am really on the path to recovery and healing.  She probably doesn't know about the next few weeks of fear of blood clots happening that Ron and I worry about.  We are just praying that that won't even be an issue ever again.  She's such a strong girl.  I am proud of her.

Keep us in your prayers, please, as we go through this healing and recovery period.  It's a long road ahead, but as I keep saying to Moira, this time that road is leading to true recovery.  The worst is over.

Boston - Day 1

We made it safe and sound to Boston!  We took the trip over 2 days.  We spent the evening on Saturday with my friend Kelly in Virginia.  We got off to a little later start on Sunday (but that's ok!!).  Our Garmin has 2009 maps and is clearly now needing updated.  It took us a couple ways that clearly were not the quickest option so we probably lost a little time that way.  We had a LOT of heavy traffic both days, but only rain on Saturday (it was pretty bad in some places in North Carolina).  We drove through Washington, DC (which we could have avoided, but was fun to see anyway).  When we approached NY City, we decided to hop off and head into Manhattan for a "quick" tour.  It was fun, again, but lost time there.  Then the Garmin took us another way that was clearly not the fastest so we lost a little more time.  That way also had us come upon a very bad motorcycle wreck so we lost more time.  Not sure what happened but FDNY and NYPD were on the scene.  Other motorcyclists were off their bikes on the side and were crying and (I didn't see) the person was in the ambulance but was not being attended too.  Could not have been a good outcome and it was quite sad.  Once we got past that, we dealt with more heavy traffic along the way.  $52 in tolls later (thank you NJ and NY!!) we were into Connecticut.  We decided against the fastest route which would eventually have us on yet another toll road and just kept on going up I 95 towards Boston, where the Garmin dumped us into regular city traffic well before it was probably warranted.  Anyway, we made it in around 10:40pm.  Safe and sound but tired!

Today was Day 1 at Children's Hospital Boston. We saw two orthopedic specialists.  The first dealt with lower extremities, the second her upper extremities.

The second doctor (upper extremities) really didn't have much to offer.  Basically any surgical option would not be advisable for her because of her overall health but he clearly stated that any surgery to fix those shoulders would be counter productive.  He was not optimistic that it would fix anything and he said the failure rate, especially for someone like Peyton is very high.  In a nutshell, he stated that he tries to weigh hurt vs harm.  He did think that she probably experiences some pain as her shoulders pop in and out.  Sometimes not as we've seen, but when it gets stuck out of socket and we have a little more difficulty, it probably causes some issues with the muscle and then she winds up in more pain.  Pain management is the key but he said nothing that is happening with her shoulders is going to cause "harm" to her.  Keep on doing whatever we're doing therapy-wise.  He said we're not going to harm her.  He also said that there is no bracing that would help.  So, that wasn't the most exciting visit but he was very nice and gave honest opinions without being condescending!  If this was the ONLY appointment we were here for, I'd be a little unhappy but as it is part of a group of specialists she's seeing, it was good for him to weigh in.

The first doctor was lower extremities.  She had some concern about the possibility of pain issues arising in her neck - the spine being pinched somewhere.  Peyton had a series of neck x-rays done and they did not show anything, so that is good.  On examination, she did note some scoliosis.  I also mentioned in one of the doctor notes from MUSC they noted (on a chest xray) some compression at T8 (I think it was T8).  She said given her overall condition, these things are not surprising.  She didn't say anything about what to do about those - I think it is what it is unfortunately.  As far as her hip pain, she felt that it was clearly related to the hip popping in and out.  But she said there may be some neurological component there as well.  She talked extensively about what our long-term plan is for Peyton - what her plan of care is (i.e. DNR, life expectancy, etc).  Basically, what are we looking for for her - a surgical solution or comfort?  Of course I told her we want to do what helps her but if that is pain management and comfort, then that is fine.  She was really nice - not overly personable - but nice enough and definitely explained things thoroughly.  She described the surgical procedure that would be recommended - basically if you do one hip, you have to do both - the thigh bone is shortened and then re-angled into the hip socket, reshaping the pelvis, etc.  She said it is a high blood loss surgery and is a pretty major deal.  She wants all the specialists we are seeing to weigh in but she feels (as do we) that the effects of the surgery itself might be worse than what she's dealing with now.  Pain level now vs. post-surgery/recovery.  Will it work and for how long?  What benefit is there really for her long term?  I think based on the fact that there are other surgeries she theoretically could have (i.e. re-do her nissen fundoplication which is not working properly now, and the potential for mitral valve repair/replacement - cardiology said she would likely not survive that surgery if it became necessary...it's not TODAY...but could be one day)...those surgeries aren't going to be done, so it would likely be that this surgery would not even be an option for her because of her overall health.  All that said, she said she could DEFINITELY benefit from a Rhino brace.  (See google images here.  Peyton had one of these as an infant.)  She said when she's drawing up that leg (which she frequently does), she's putting it out of joint and it's staying there.  She said that the brace plus the oxycodone we're currently doing should be sufficient to help keep her comfortable....if comfort is what we are trying to achieve for her right now.  As to her stander, we can use it, but more in a sitting position.  Standing in it will clearly depend on her level of pain.  I think she is good with all therapies resuming but she did not offer any specific things that could be done.

So at the end of the day, do we have any real answers and an amazing solution to a big problem?  No.  This being the day with the two appointments that were the main reason for us being here, was it worth the trip considering all I just said??  Yes.  The doctor in Charleston didn't even offer the Rhino brace.  He doesn't think there's a problem.  He didn't describe the surgery at all.  It was good to hear everything she said even if there's no definitive solution to the problem.  I am glad we came.

Tomorrow Peyton will see the Pulmonary doctor.  This is good especially with her still dealing with the ongoing aspiration pneumonia.  She's still dealing with the IV meds for over a little over a week yet.  She isn't any better or worse at the moment.  We don't have any issues with the Pulmonary clinic in Charleston, but since we're here, we just wanted to see what they'd have to say about her overall respiratory health - just to see if there is anything they would add or change or recommend or test for, etc.

Ron and Moira walked down to Fenway Park this afternoon for a little look see.  Peyton and I stayed behind and napped.  I'm not sure what all we will do while we're here.  It is difficult getting out with Peyton considering all we have to bring every time we head out the door.  But I hope to get out and see some sites.

Please continue praying for Peyton's health to improve.  As I said, she's no better even while continuing on these two IV antibiotics.  But she's no worse, so I guess that's good.

OH...and as for Children's Hospital Boston, it's an amazing place.  It's huge.  Ron said when you walk in, it's like a train station.  There's just so many people everywhere.  I'll have to get some pictures.  While in the waiting room, I was really impressed with the volunteers helping kids to feel at home.  There are tables with coloring pages and crayons/markers laid out in every waiting room we saw.  They had clown comedians in the waiting room at one point.  They just did a really great job of making people feel at ease.  Kudos to CHB!

Still At The Hospital

As of Sunday night, we were waiting on peds surgery to come take a look at Peyton.  We were also waiting on an ultrasound which would help them see if there were actual pockets of infection in the abscesses.  Neither ever happened by the time Monday morning rolled around.  When the pediatrician did his rounds Monday morning, he took a look and decided to scrap the ultrasound altogether.  He had surgery paged and they came to take a look.  The redness had extended beyond where it had been.  The inflammation was a lot worse than the night before.  Clearly, the infection was spreading.

Peds surgery came around and they decided that it would be best for Peyton to have a little surgery to try to completely drain the abscesses.  There was discussion about how best to do that since she's not a good candidate for anything other than a complete general anesthesia.  They decided to take Peyton up to the procedure room in the PICU where they had a doctor up there administer and monitor her with conscious sedation.  He used ketamine and propofol.  I guess he gave her a pretty hefty dose because she was still fighting after all the ketamine was administered.  I was holding her hand and she had a tight grip the whole time. She was moving around a lot.  With the propofol she calmed down some, but she never closed her eyes.  She never went to sleep.  She never lost her grip.  It lightened a little, but never lost hold of my hand!  She fought that anesthesia.  She wasn't feeling the procedure (at least not that we know) but she was not out!

The procedure went well.  I got to stay with her the whole time.  I managed to stay on my feet this time!  :)  They didn't get as much out of the abscesses as they thought they would, but they did get some out.  The surgeon left in a piece of tubing.  There's two incisions.  The tubing runs in one opening and out the other about an inch and a half below the first opening.  Then the tubing is tied together in a knot on the outside.  I guess it holds the area open to drain.

As of this morning, the inflammation is way down and the area is less red.  It's still pretty red right around the main area.  Where the redness had spread is still red, but not bright red like it was.  It also  hasn't extended beyond where it had gotten to yesterday.

She's on a couple different antibiotics for now.  I haven't had any word as to how long she will be in the hospital.

You can read more on all this over here:

http://fontenblog.blogspot.com/2011/10/gods-armor.html

A Week Or So of Updates

Fortunately, there's not tons to report but a few things have happened in the past week or so.

The week before last, Peyton saw the Pulmonary doctor.  We're still concerned about the junkiness she has.  The doctor has her back on an antibiotic which will last for another week.  Oh joy.  She still sounds just as junky.

Last week we met with the Geneticist to go over results from the test that had been done when Peyton was in the hospital back in July - the on that might indicate whether or not Peyton might have a specific form of Muscular Dystrophy.  No news.  The first part of the test showed nothing.  The second part will take another 6 weeks.  Great.

I had surgery on my elbow on the 26th, making me unable to lift Peyton.  Our nursing hours were set to decrease to 40 hours but we managed to hang on to the paltry 56 hours we were given through 9/10/11.  THEN they drop to 40.  I'm not happy.  She had 84 hours a week in June then was cut back to 70 in July and then a few weeks later down to 56s and now it's about to be 40!  It's HORRIBLE. Read up on that situation over on my blog here:

http://fontenblog.blogspot.com/2011/09/being-flexible_04.html

And, last but not least, Peyton is in the hospital.  Oh joy.  Her whole GJ tube came out early last night.  She was admitted because it was Sunday and no one from interventional radiology is in on the weekend and they weren't paging them to come in either.  I should say, they spoke with IR, but they weren't coming in!!  We were very concerned about her being able to have it done at all even today because it's Labor Day!  Good news - she's about to have it fixed.  

What a week.

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.

Another Eye Surgery

Peyton had her surgery this morning. We had to be there for 5:30 am. We got home around noon. The surgery was much longer than I thought it would be. When the doctor checked her eyes, she counted no fewer than 5-6 chalazions in each eyelid, upper and lower. So that's at least 20-30 with there being more than 6 in a couple. After the surgery, the recovery area likes to keep them til they are alert and able to drink some fluids. She never really woke up. She stirred a couple times. I did finally get her to take a bottle but she was still pretty out of it. We got home a little before noon and she has been sleeping ever since. She stirred a couple times and took another bottle, but she's really out of it. I don't remember her being this wiped out after any general anesthetic before. Hopefully she'll perk up soon. Her eyes look terrible right now. I'm not really anxious to start giving her the ointment which has to go inside her eyelids. The doctor thinks she is aggravating the problem herself by rubbing her eyelids so much, so she's become very prone to getting them. We have our instructions on how to help her over the next several months. Hopefully that will break the cycle.

Glaucoma Update

We had a good report from the ophthalmologist (the glaucoma specialist) yesterday. Peyton went in to the hospital Monday for surgery. She was to have the tubes of the shunts in her eyes shortened as well as remove a chalazion from her left eye lid. The doctor performed the eye exam under general anesthetic and found that the shunt tubes did not need to be shortened at this time. He said that as her eye grows, the shunts will shift. So, whereas he felt it necessary to shorten them when she had her eye exam back in July, it was now not necessary. However, he did say that they are shifting in the direction of needing shortened, but they are not yet in a position where they will cause damage to her cornea. He wants to keep a close eye on this but doesn't want to do surgery until it's absolutely necessary. I suppose that is to minimize the chance of having to do it again later as her eye continues to grow. As for the chalazion, it must have gotten better, as he did not see that it was necessary to do anything about that either. So, if you're thinking this was all a waste of time and an unnecessary general anesthetic (Peyton's 15th), it really wasn't. She was due for her routine eye exam which must be done under general anesthetic. This is to check the pressures in her eyes. The doctor said her pressures are great. We'll repeat the exam in 3-4 months to make sure they are still good and to be sure the shunt is in a good position. The worst thing about yesterday's procedure was that Peyton's veins are terrible now and they had much difficulty finding a vein for her IV. This has been happening with the past several procedures. I had never seen this before, but they had to place the IV in her neck! Poor baby.

I took Peyton to the pediatrician last Thursday to have her cleared for sedation for the eye exam. Peyton is now 17 months and is 21 lbs 12 oz and is 31 inches long!! She got caught up on her vaccinations from 15 months and got her flu shot. The doctor also told me that she ought to see a dentist for a check up since she has about 16 teeth now. Since she is extremely sensitive to touch, it is impossible for me to get in even with one of those little baby toothbrushes you slip on your finger. The doctor told me not to worry about not being able to get in myself, but to see a dentist and make sure she's doing ok there. I wound up not using one of her recommended dentists as they weren't in my insurance plan, but I did call Texas Children's Hospital myself and found that they offer routine dental services to special needs children and children with complex diagnoses. So, Peyton has her first dental visit on Nov. 8th. It would not surprise me in the least if she had to have a routine cleaning done under sedation. I suppose I'll find out on the 8th.

Aside from that, Moira's cold is lingering on still. I'm starting to get my second cold in as many weeks. We're all enjoying our visit with my parents and will be sad to see them leave tomorrow. At least it's only about 2 months til we see them again. Hard to believe Christmas is in 2 months and 2 days!! Where did the year go???

Another Upcoming Surgery

Peyton had another sudden doctor visit yesterday. Instead of going to her physical therapy appointment, she wound up seeing her Ophthalmologist instead. Her left eye has been irritated and her eye lid was pretty red and swollen. Not wanting to take any chances with her eyes, Ron took her to the doctor. It turns out she has another "chalazion" in her eye lid. Basically it is a gland or duct that is clogged with oils. It becomes irritated and unable to drain, so it forms a lump in the eye lid. It's not a sty, although it's kind of similar. Since Peyton is scheduled for surgery on Monday, she will have this chalazion removed at that time. The surgery is to shorten the tubes in the shunts in her eyes.

Aside from that, she is doing quite well with her therapies. She's getting much stronger each day. We're still a long way from reaching many milestones, but I have a feeling like maybe Peyton being able to sit unassisted may be the next milestone she reaches. I think it's still a long way off, but she is getting stronger. Her head is still wobbly and she doesn't have great upper body strength, but hopefully in the next several weeks she might be able to sit on her own. We'll see. Only time will tell!!

We are looking forward to a visit with my Mom and Dad. They will be arriving tomorrow and will stay for a week. I'm sure they will see a huge difference in Peyton. Dad especially, since he hasn't seen her since Peyton's birthday in May.

We will see them again in just a couple months as we will be spending Christmas in Canada this year. We're driving. You can't take the oxygen tanks we have for Peyton on airplanes, so that means we have to drive. Fortunately, the kids are GREAT travelers. In July, we drove to Albuquerque - about 15 hours or so from here. We drove straight through and they didn't start to fuss until we were about 5 miles from our hotel! Hopefully that luck continues with this trip. It'll be too cold to pull in at a rest stop and let Moira run around on this trip!

I'll update regarding Peyton's surgery next week.

Ear Tubes

Peyton had her ear tube/adenoid surgery Friday morning. She was to have been first up, but they were waiting on her prior anesthesia records from her surgery on the 9th to see if there were any problems to be aware of for anesthesia. Since the child up 2nd was having a very quick procedure to remove his ear tubes, they put him in front of Peyton. Sure enough, the records arrived and 15 minutes later we were on our way back with Peyton. It was 39 minutes from the time I sat in the waiting room til her doctor came in to let me know how it went. She did very well. Her adenoids were blocking about 50% of the back of her nose.

We spent the night at the hospital, even though the procedure is out-patient. Since she has the sleep apnea issues, they wanted to monitor her breathing overnight to make sure that any swelling from the surgery was not interfering with her oxygen levels. Her oxygen saturation stayed mostly between 96-99% the whole time. The doctor came in this morning and said she was good to go. We were home just after 11:00.

Of all Peyton's surgeries (this was #11), this was probably the most minor. Of all the surgeries, this was the one that caused her to be the fussiest! It was a rough night for her last night, but she is doing well.

Neurosurgery Follow Up

Peyton had a good report from the Neurosurgeon yesterday. She is doing very well and the doctor is quite pleased. He removed the last remaining steri strip. The incision area is quite red but he said that is from the sutures which are under the skin and should get better shortly. If not, we'll go back to him. He ordered an x-ray to make sure that her neck is remaining stable when extended or flexed. It is. So, we ended on a good note and will return to see him in a month.

Next up...Friday's ear tube/adenoid surgery. Still a go. I am most anxious to have all of this behind us!

Post Surgery and Upcoming Surgery

Just a quick update to say that Peyton is doing really well since her surgery on August 9th. She has been just as mobile as ever since she came home on the 11th. She scared me at times with how mobile she was! I would have thought her neck would have been very sore and she would choose not to move it so much. Not the case! Actually, her doctor said that it's better for her to be mobile because it will heal faster.

In addition to the oxygen levels remaining at a really good level while she's sleeping, we've noticed a change in Peyton's feet. Since she was born, her feet have always been freezing. Now they're a normal temperature most of the time!

If all goes according to plan, Peyton will have her ear tube/adenoid surgery this Friday, the 24th. Her congestion from being intubated on the 9th has finally eased up and I think she's good to go for Friday. One more surgery coming up in September. This one is to shorten the tube of one of the shunts in her eyes. We found out that would have to be done back on 7/30/07, but the doctor didn't want to do it at that time since she had so much bacteria in her eyes at the time. It's apparently a very quick and simple procedure. It will be so good to get these surgeries out of the way.

Mom will be arriving on the 29th. Moira's looking forward to seeing Granny. I think she thinks Granny just lives at the airport and we just pick her up and drop her off as needed. On the 30th, Ron and I are off to Las Vegas until the 4th for some much needed R&R. It'll be the first time I've been away from Peyton since I was hospitalized in May 2006. I'm not feeling 100% great about leaving the kids, but I know they will be in good hands!

Will keep you posted on how Peyton makes out at her follow up with her Neurosurgeon tomorrow as well as her surgery on Friday.

Home!

Peyton came home today! We were home by about 11:00 or so this morning. She is doing really well after her surgery. She occasionally will get fairly fussy which leads me to believe she's still in some pain. I can't imagine her not having some pain! She is becoming more and more active, which is good. The doctors told us to just let Peyton be herself and not restrict her movement too much. We were told that if she can get moving her neck as she normally does, it will help her out in the long run.

She is still pretty congested, so hopefully we can get that knocked out pretty quickly. It makes me a bit nervous considering her hospitalization for her congestion back in May. However, I am sure they wouldn't let us leave today if she wasn't well.

Peyton's not 100% her happy little self, but she's getting there. She's definitely quite active now and is making us nervous with her head movements, but we realize it's good for her to move. We get to take the dressing off her incision tomorrow. How fun. She just has steri-strips holding the incision together. We will follow up with the Neurosurgeon next week.

Going Home!

Oh Happy Day! I just spoke with Sarah and she shared the wonderful news that Miss Peyton was seen by the neurosurgeon's resident and he has given his approval for her to go home at some point today!!

Peyton had a fairly decent night. She is still quite congested and is getting suction treatments. Two different pediatricians have been keeping tabs on Peyton because of this problem. She was given Benadryl to ease the congestion, which they feel is a normal after affect of the surgery. She is being moved around more today - being held upright in order to ward of pneumonia.

During the night and early this morning, she had some fussy periods because of the pain. I believe she got Tylenol to ease that pain.

Peyton's blood oxygen levels continue to be very good. After surgery, they were between 97 - 100%; Thursday night they were 89% and higher while she was having her breathing problems; yesterday, with her congestion, they were between 92 - 95%. This has totally baffled the neurosurgeon who thought the surgery "might help the apnea a bit". So far, she has not required her oxygen.

Once Peyton is home, she will have to be watched carefully. She has to be very careful regarding neck extensions, etc.

Hopefully the whole family can now get some rest and enjoy being home together again. Way to go Peyton! We continue to cover you in prayer and thank all of your prayer warriors.

Granny

Post-Surgery Update

After a very interrupted night, Peyton seems to be faring a bit better this morning. Yesterday, her breathing sounded very raspy and she was quite hoarse (stridor). When she was breathing, her chest was being sucked in. Last evening, when the neurosurgeon saw her, he was concerned about her breathing. Before long, there was a flurry of activity to determine the cause. Her BP was elevated a little too. After much poking, prodding and a chest x-ray, it was decided that the problem was caused by inflammation of the vocal chords as a result of being intubated during surgery. She is being given steroids by IV every six hours to reduce the swelling. After her first treatment, there was an improvement. This morning, her hoarseness has diminished, but she still has a lot of congestion in her throat.

Peyton is managing to take her bottle today, which is a good sign. When I spoke with Sarah, she was holding Peyton and I could hear that she sounded a little better. Although pretty tired, Sarah is quite pleased that things are a little easier for Peyton today.

Once again, thank you all for your prayerful support.

Granny

C1 Laminectomy

Sarah has asked me to update the site for her. Peyton came through her surgery very well. When I spoke to Ron an hour or so ago, she had been moved into phase two of recovery. Right now, they are waiting for her to be moved into her own room. The doctor was pleased with the surgery. Peyton was in some pain, so she has received medication for that. She is still pretty sleepy and has only stirred a few times. She isn't too interested in taking in any fluids - just a couple of drops. Since the discovery of her sleep apnea, she has been using oxygen while asleep. When Ron and Sarah went into the recovery area, Peyton was asleep without oxygen. She is in quite a deep sleep and her blood oxygen saturation was about 98% ~ so, she is able to breathe on her own at present. I'll leave it to Sarah to add in all of the details, which she will be most anxious to do and will do better than I can.

Thank you all for your love, support, concern and prayers.

Granny

Surgery

What a day. We went to see Peyton's Neurosurgeon for a follow up to the MRI she had last week. Back in November, her MRI of her brain showed something at the base of her skull/top of spinal column that they wanted to keep an eye on. Unfortunately the MRI cut off right at about this point. The problem was a new one so they weren’t expecting to need to see further down her spine. Last week’s MRI went further so they could get a look. The tightening that they noticed at the top of the spine has gotten worse and requires surgery. It’s one of those things that could be done now or could wait a bit, but then if you waited…what if something happened?? The big concern (one of the concerns) is that the sleep apnea she has is very likely caused by this problem and could get worse. The area of the brain above this problem area controls respiration. We didn’t delve into the “what ifs”, but decided that urgent surgery is the order of the day. She is scheduled for Thursday. We have to be at Texas Childrens for 6am on Thursday. He said the procedure is fairly simple.  Ok, I’m not the neurosurgeon, so perhaps that it is not actual “brain surgery” maybe makes it “simple”! It’s about a 30 minute procedure – decompression is what he called it. She’ll be in the hospital 2-3 days. They have to keep a close eye on her because of risk of infection, her apnea and generally because of her other issues.

So now we wait anxiously for Thursday to be over and done with. I will keep everyone posted as soon as I can once she is out of surgery. We appreciate your prayers!

ENT Update

I am back from the ENT doctor with Peyton now. This was a follow up to her visit 7 or 8 weeks ago. That visit was a consultation regarding her sleep apnea. However, in the process, he discovered she had an ear infection. She developed another ear infection a few weeks ago. That makes at least 4 ear infections since January. The doctor has decided she is a good candidate for having tubes put in her ears. He also felt that her adenoids should also be removed. So we are scheduled for surgery on August 24th.

Since the bulk of her hearing loss and sleep apnea are neurological, the surgery probably won't help too much with those areas, but it's possible that her hearing might have some improvement - at least perhaps what little bit she can hear unaided might be clearer. The adenoid removal might reduce some obstruction as far as the apnea goes, but probably won't do too much to help there. Hopefully after this surgery Peyton will be in better shape for having such things as her MRI and eye exams which require sedation. These keep getting rescheduled because she's gotten sick and can't be sedated. Hopefully if we can reduce the number of ear infections her immune system might stand a chance at clearing up the other issues.

More appointments this afternoon - will keep you posted.

"Doctor" Day

We seemed to be doing so well for a while. I guess we got used to that too quickly! Today is "doctor" day. Peyton had a check up with her opthalmologist. A couple weeks back, she saw this doctor. The doctor couldn't get a great look inside the left eye because of the recent surgery to put the shunt in. She decided to give it a couple weeks, have us come back and see if things improved. That was what today's appointment was about. The good news is that Peyton's right eye is looking great and the doctor expects to get good vision out of that eye, with a fairly substantial prescription. Unfortunately, one month post-surgery, Peyton's left eye would not cooperate. The doctor couldn't get a look inside the eye at all. The cornea is cloudy - an indication of increased pressure due to the glaucoma. Since there's a shunt in place, this should not be happening. She immediately got on the phone to the glaucoma specialist and sent us right over there. He looked at her eye and went ahead and scheduled an eye exam under general anesthetic with possible surgery for this coming Monday. It may be that all he needs to do is remove a suture but we'll see what he finds.

So, here we go with another general anesthetic (Peyton's 11th) and possible surgery (would be her 10th). The regular opthalmologist was rather grim this morning. She is deeply concerned with the left eye. The biggest concern is that if this glaucoma problem cannot be resolved as quickly as possible, Peyton could very well lose vision in her left eye permanently. News like that is never good to hear. We already have to much to deal with with her having moderately severe hearing loss. We have known all along that she also has great vision issues, but have always hoped that with a lot of correction she should do well enough. I can't imagine how much more challenging it would be if she winds up blind in one or both eyes.

We are off to the pediatrician this afternoon for some follow up lab work. Hopefully we come away with good news.

Still waiting on the results of the genetics testing done on 1/8/07. I'm getting anxious!

We have an appointment with a 2nd neurosurgeon in April to discuss the tightening at the junction of the spine/skull. The first didn't want to do surgery, which is fantastic, but it's an awfully serious thing to NOT get a second opinion on.

Moira's taking everything in stride. I told her I was taking Peyton to the doctor and she asked if Peyton was sick. I said no, it was just a check up. She asked if Peyton's eyes hurt. I said yes. Then she declared she wanted cake. This was at 6:45 this morning. She's been declaring that desire for days as, for some reason, she thinks every day should be her birthday!! Just over a month to go and then she can have her cake.

Will keep you all posted on how Peyton makes out on Monday. Thank you all once again for all the support you have given us. We are grateful for it and are mindful of all of your support every single day.

Neurosurgery Update

Peyton went to the neurosurgeon this morning. We are so happy to report that she does NOT require any form of surgery!! Thank God! The doctor felt that he could probably fade into the background in terms of Peyton's care because he really didn't see the need for any type of surgery at all. He was happy to consult though. He said we are to watch her development as we have been doing and if she ever starts to not do things that she once was doing or was trying to do, then that should raise a red flag and we'd have to figure out what was going on.

After that appointment, we went downstairs one floor to her opthalmologist for a check up. She had great reflexes in her right eye and none in her left. That was not unexpected since she just had surgery on her left eye on the 8th. We are to follow up in 3 weeks.

We're in between appointments now. Her nutritionist comes in an hour. Peyton was supposed to weigh 13.5 lbs by the 15th of this month and we had her at about 14.75 or so about a week ago. As of a couple days ago, we think she's probably pushing 16 lbs. She was to weigh 15.5 lbs by Feb. 15th, so if she's 16 lbs now, we're doing great! I'll keep you posted.

Thank you everyone who has taken the time to send messages to us or sign the guestbook on this website. Your support, as always, is much appreciated.