Hospital Life...Day 34

Today is Day 34.  If you missed yesterday's post, you can read that HERE.

Prior to this admission, Peyton's longest ever hospital stay was 17 days.  Today, she doubled that record.  34 days.

It was a relatively quiet day today.  Yesterday I talked about that fine balance between controlling her pain and the fact that the pain meds tend to lower her respiratory rate a little too much.  We had to deal with that issue a little bit today.  Her Ativan dose was lowered because of this today.  For the most part, though, Peyton slept today.  She had a couple moments where she was on the uncomfortable side.  Diaper/linen changes always bring her to a new level of pain, but outside of that she seemed relatively "comfortable" today.  I'll take that.

She had her foley catheter removed today.  It had been placed earlier last week because Morphine has the side effect of urinary retention.  It's felt that with the Fentanyl patch, this may not be an issue.  We will find out soon enough.

Aside from this, everything pretty much stayed the same for today.

Tomorrow, Ron and I will celebrate 13 years of married life.  Who'd have thought it would be from a hospital room.

Hospital Life...Day 32

Today is Day 32.  If you missed yesterday's post, you can read that HERE.

It's April 26th.  It was on March 26th that Peyton's home nurse and I took her to the ER with what wound up being a new fracture; the femur this time.  What was supposed to be a one night stay for pain control has turned into 32 days {and counting} involving fractures, pain control, a couple blood transfusions, albumin and iron infusions, several potassium infusions, and the list goes on.  A "simple" fracture set off a chain of events in Peyton's body which have brought her into a completely new season of declining health, to the point where we haven't been sure how this is going to play out.

We weren't sure exactly how today was going to play out.  Last I had heard, there was still some uncertainty as to what the latest gallium scan showed.  We were hoping that it would show us definitively whether or not there is infection in her leg, and if so, if it was just in the soft tissue or was it deeper down, including into the bone.  There was also the thought that Peyton might need to go down for another series of scans today.  

Yesterday was so difficult for Peyton considering all the transfers from the bed, onto the table and back {a couple times over}.  She was in a lot of pain from everything she'd endured for the scans.  In addition, the doctors are really trying to get her pain controlled, and they decided that they would transition her from the continuous Morphine {with extra bolus doses every couple hours or so as needed} to a Fentanyl patch coupled with extra Morphine doses if needed.  That transition began at about 3:00pm yesterday.  At 3:00am this morning the continuous Morphine was stopped and a new regimen for the extra Morphine doses was implemented.  She is also still able to get Ativan every so often if she needs it.  

In hindsight, I think it would have been better to start the new pain regimen today as opposed to yesterday, giving her another several hours on the regimen that she seemed to be doing {sort of} ok on.  Not knowing how well her pain would be managed with this new regimen made me a bit nervous. She did have more issues with pain control today.  A plan had to be worked out to get her to a good place {at least a plan to get her into a good place...not sure she's quite there yet!}.  A contingency plan also had to be worked out for the weekend just in case this plan doesn't work out as hoped.  Hoping and praying that her pain is a little more controlled as we settle into the night and over the weekend.  Last weekend was pretty rough.  I don't want to get back to that again!

As for Peyton's leg, it does appear that it is infection, but it is not clear as to how deep it goes.  It does appear to be pretty extensive but whether the bone is involved or not is another question.  Because it is unclear, and because of Peyton's pain issues and just her comfort and what we desire for her care in general, we didn't go ahead with any other scans today.  The doctors are going ahead and treating this as if it did include a bone infection.  What this means is that she will continue on her course of antibiotics for several more weeks.  She has already been on them for two weeks.  The risk of stopping them now and assuming it's not a bone infection is not worth it if it does happen to be in the bone.

In other news...

We have been truly blessed by the generosity of so many people.  I've mentioned many of the ways in which people have blessed us over the past month.  One woman from church has been so sweet to me, coming up here several times with food and coffee and magazines.  She belongs to a group at church called Missional Moms.  They have been praying for Peyton and have been wanting to help our family in some way.  One mom had the idea of cleaning our house for us.  A group of ladies mobilized quickly to set up a date and time this week to come and do just that.  For as many ladies who wanted to actually do the cleaning, there were as many who were quick to volunteer their time to babysit all of the children of those ladies so they could do this for us.  Today was cleaning day.  I cannot tell you how grateful we are for their generosity - for their time, their willingness to do this, their elbow grease, and so on.  I am just as grateful to the moms who spent the morning at a nearby park minding the children of these ladies so that they could be in our home.  Thank you ladies from the bottom of my heart.  I know it was a huge coordinated effort to make this happen and it was so very much appreciated!!

A little later in the day, we had a couple visitors.  It was one of the nurses and one of the techs from this unit.  They were in street clothes.  They came in with a little gift for me.  They knew that today had the potential to be another challenging day with the possibility of more scans.  Fortunately that didn't happen, but we did have pain issues to contend with.  Many of the people around here are becoming familiar with this blog, but some are also finding my other blog the Fontenot Four.  If you are familiar with that blog, then you know that I receive a monthly Birchbox that I also review on the blog {I buy it myself...no one compensates me for that!!}.  Anyway, these two ladies know my love of Birchbox and decided to give me a little treat with their own version of one!  I have to say, I'm pretty impressed with their version!!  It was so sweet of them to think of me and to do this for me.  I really really appreciate their thoughtfulness.  

This evening I made it all the way down to the first floor!!  Ron spent several hours up here and we went to the cafeteria together.  Like a date almost.  A whole 10-15 minutes at most.  You have to realize that this was newsworthy because I haven't been to the first floor of this building in 32 days.  I am on the 7th floor with Peyton.  Radiology is on the 3rd floor.  When we had the family conference a few weeks ago, it was on the 8th.  Any family dinners that the volunteers put on from time to time are also on the 8th.  We got some dinner and went back up to my "home" on 7.

It's weird when I think about it.  32 days.  I haven't set foot outside in 32 days.  I haven't ridden in or driven a vehicle in 32 days.  I haven't used a hair dryer in 32 days.  I have had what I "affectionately" call "hospital hair" for 32 days.  My hair air dries funny.  "Normal" for me is more like my picture under the "About Me" tab in the top right of this blog.  I haven't cooked a meal in 32 days.  I haven't done laundry in 32 days {although I have an amazing husband who has...and I do get fresh clothes every day!}.  I don't have a huge supply of personal items here.  It is absolutely amazing how little one really needs to get by on a day to day basis.  As a side note, I don't think there has ever been a time in my 40 years where I've gone 32 days without being outside or riding in a car.  Isn't that just bizarre??'

We are heading into the weekend and we will have a new attending.  Our 7th.  However, we're back to one we've had before.  We've had Dr. M, Dr. T, Dr. S, Dr. W, Dr. B, Dr. McB {with Dr. W coming back one day this week to fill in}, and now we're going back to Dr. W for the next week.  All have been amazing.  The transition from one to the next always seems a little scary because you don't know what the know coming in and how things will go {or at least that's what you'd think}.  But truthfully, I have never felt like anyone dropped the ball on anything or that someone didn't have all the information.  It's been seamless.  That's saying something considering we're talking six different attendings in just over a month.  I am so thankful for each of them and for the perspective each has brought to this case.  I know it's a challenging case and I'm just so grateful for all they are doing for our precious girl!!

Please keep praying for Peyton, especially for her pain control.

Hospital Life...Day 27

Today is Day 27.  If you missed yesterday's post, you can read it HERE.

We continue to battle with Peyton's pain.  I just feel so helpless when I see and hear her in so much pain.  The Morphine dose that is given continuously has gone up, but it keeps needing to go up.  She is also still requiring additional doses for breakthrough pin.  Last night they began a new regimen where they would give her three doses of Morphine, 10 minutes apart and then keep the continuous Morphine going.  The theory is that would get her to a higher level and hopefully sustain her  longer.  In theory, that should have lasted 8 hours.  It did not.  She was given an additional dose in the early morning hours.  At 7:00 this morning they were able to repeat the 3 bolus regimen.  That should have held her til 3:00pm but she needed an additional dose about an hour or so ago.  She is not crying out just now, but she's very fidgety.  She can't get comfortable.  She looks so tired and wants to sleep, but can't get there.

The team had one of the PICU doctors come have a look at Peyton.  He actually just left.  He actually did a procedure on Peyton over a year ago to drain a couple abscesses that she had.  They consulted with him to see if he might have any additional thoughts on what we could do to manage Peyton's pain.  Above all else right now, we need {and want} to keep her comfortable.  She is not.  He agreed with the current plan with the Morphine, but I think that he may be discussing with the people here about increasing the rate.  He also discussed the possibility of administering something like Valium or Ativan or something in that family to help settle her.  Failing that, he has another idea in his back pocket if she maxes out on the narcotics.  We will see if we get to needing that.

Peyton's heart rate has been increased between last night and now.  It's been in the 140s-160s.  When agitated, I've seen it jump even higher.  Diaper changes and any sort of movement is so incredibly painful.  I can't stand crying in front of people, but I just can't help it now.  To watch your child suffer like this is just more than I can bear sometimes.  I try to be strong for her, but there are times when I just have to walk to the bathroom or just sit down for a moment.  I just keep praying for relief for her pain.  That relief seems very difficult to find.  She's had some, but eventually the pain just intensifies and we're right back to the pain and suffering.

In the outside world, Ron's mom is visiting.  She bumped up her visit so she could come lend a hand with Moira.  Moira, of course, is loving it.  They are pretty close, so I am very happy that they are going to get to spend some good quality time together.  When I heard where they went for brunch after church today, I told Ron they needed to hook me up, so I expect to see them in a little while!

I'll keep you posted on how Peyton's pain is doing.  Hopefully I have a better report next time.

Hospital Life...Day 26

Today is Day 26.  If you missed yesterday's post, you can read it HERE.

Today has pretty much been a continuation of yesterday in terms of pain management.  The level of Peyton's continuous dose of Morphine has been increased a couple of times.  She has needed frequent "rescue doses" today.  That means that she needed frequent bolus doses for intermittent breakthrough pain.  The pain is still pretty intense when she has the breakthrough pain.

Peyton needed to be weighed today.  Not sure why, but the weights they've been getting are not always consistent despite the bed being zeroed out prior to weighing her.  Today's weight was up from yesterday's.  In the process of zeroing out the bed, Peyton had to be lifted up off the bed and held while the zeroing out process took place.  Just one push of a button and the bed zeros the weight of the bed.  However, the wait seemed to take forever today.  It wound up being three people holding Peyton while this happened.  In the process of lifting and holding her, she screamed so much and was in so much pain that she began breath-holding.  Her face started turning bluish purple and her oxygen saturation dropped into the mid 60% range.  Then she'd scream but she wasn't taking good breaths.  When we finally were able to set her down, it took a while for her to calm down sufficiently to get her color back and her oxygen saturation back up.  It is heartbreaking to see her in that much pain.

We have a new attending for the weekend.  Peyton has seen him perhaps two or three times on previous hospitalizations.  In fact, I want to say the only times we've had him were on days she was being discharged, so we don't have a whole lot of experience with him.  As it turns out, he seems to be yet another wonderful addition to the team.  Ron happened to be here when they rounded today.  He and I were both very impressed with this doctor.  He seemed to us to be both interested and concerned for Peyton, as well as sorry that she is experiencing all these challenges. 

As for Peyton's leg, I honestly think it is now worse.  It may not be as red, but the coloring of the area has changed.  The redness has crept up the top of her leg a little bit.  Her lower leg and foot seem puffy today.  No fevers and her white count wasn't high, but the doctor wanted to discuss things with Infectious Disease to see if we needed to add on another antibiotic.  Right now, it isn't looking like we will.  Ron and I are quite concerned about her leg.  And her pain. 

I just wish I could take her pain on myself so she wouldn't have to be the one suffering.  It is heartbreaking.  Thank you for all your comments, emails, calls, etc.  We truly appreciate your love and concern for Peyton.

Hospital Life...Day 24

Today is Day 24.  If you missed yesterday's update, you can read that HERE.

Not a whole lot happened today, but it was a hard day.  Since switching to the Morphine pump yesterday, it seems that either Peyton's pain has intensified or the dose isn't where it needs to be. She is experiencing a lot of breakthrough pain.  It happened a couple times yesterday but several times today.  She gets respiratory treatments three times a day.  These involve putting a vest on her which is hooked up to a machine.  It vibrates at various intensities to help get the junk loosened up in her lungs so it can be coughed up or suctioned out.  The process of raising her up to get the vest on became absolutely intolerable for Peyton today and absolutely heartbreaking for me to watch.  Diaper changes aren't much different.

The continuous Morphine dose was increased this afternoon and the doctor wrote for a bolus amount which could be given in the event of breakthrough pain, although it's probably only allowed every so often.  The Toradol, which was added a day or two ago, is only a temporary pain killer.  She can only get up to 6 doses, so it won't be long before that's not an option.

Peyton had a visit from her school physical/occupational/and speech therapists today.  It was so nice of them to come by to see her.  I so appreciated the company and their generosity as well.

Moira had her 9 year old well check up after school today.  She's in the 50th percentile for weight and 10th for height.  She is 4' 1" now.  She may be short in stature, but she's big in energy, spirit and love for her sister.  While they were there, Ron filled the pediatrician in on what's been going on with Peyton.  He is her pediatrician as well, but she sees so many specialists that she doesn't really see him too often except for well check ups.  He did not know that Peyton was in the hospital.  I wasn't sure if he would have known or not.  I wasn't sure how that worked - if they were notified that one of their patients was in the hospital or if they just received copies of the discharge notes.  It wasn't long after Ron texted me to tell me how Moira's appointment went that the pediatrician was up here seeing Peyton as a visitor.  It was unexpected but very much appreciated.  As with all of Peyton's caregivers, I truly appreciate all that he has done for her.

I didn't get a chance yesterday to get a group of photos loaded on to my computer, edited, and watermarked, so I'll share them with you now.  I was going to post a picture of Peyton today, but her pain just breaks my heart too much right now.  Instead, I'll share with you something I did with Moira yesterday!

MUSC has a playroom they call "The Atrium".  It's right on the same floor Peyton is on.  It's open during certain hours of the day.  Children who are in-patient and who are able, as well as their siblings, can go to the atrium when it's open.  There are a lot of activities for kids of all ages: reading, painting, "house", dollhouses, music, air hockey, Wii, and even a separate little lounge area for ages 12+.  We had fun in there for a little while last night before they closed for the evening.  Allow me to share with you those pictures.

 

Your prayers for Peyton are greatly appreciated.  Her pain is intense and it is so hard for me to watch as her mother.  I can't imagine what she must be going through.  I'm sure there will be more discussion about pain control in the morning.  In addition, we'll be talking about those respiratory treatments.  I believe we still need to keep up with the actual breathing treatments {nebulizers and inhalers} but I just don't know if continuing doing the vest is in her best interest right now.  If her comfort and pain management is such a priority, doing the vest treatment is totally counter to all of that.  Pray that Peyton gets some relief soon.  As for her leg, there is no change.  That is the other huge concern.  Pray for that as well. 

It's just a heavy day.  First there is Peyton and everything going on with her.  There's so much going on in our country that is so sad.  Then I saw the news today that a young woman from our church passed away suddenly and unexpectedly.  While I did not know her personally, I knew who she was and I knew she followed {at one time if not recently} Peyton's story and was touched by it.  My heart is heavy for her and for her family and friends.  I didn't know her, but I had a couple message exchanges with her on facebook over the past year or so.  I am honored to have touched her life in some way and am saddened by her passing.  I wish I'd known her better and I will miss seeing her smiling face around church.  If you can remember her family in your prayers, I am sure her friends and family would appreciate it.

Hospital Life...Day 23

Today is Day 23.  In case you missed yesterday's update, you can read it HERE.

Today started out with the delivery of this to my room, so Wednesday and I got off on the right foot!

Peyton's leg really is not getting any better.  In fact, I thought it may have even looked a little more red today.  If not more red, it definitely looked more swollen to me.  It is also still very warm to the touch.  There is a high level of concern for Peyton's leg.  The doctors are treating her with antibiotics for a possible infection.  The question is - where is the infection: tissue or in the bone?  There is a huge difference in the course of treatment, so this morning it was felt that we really need to get an MRI.  The problem is that Peyton would have to be sedated and she is not a good candidate for sedation right now.  The question became how would we do this without causing her harm.  Do we attempt to do it without sedation?  If we went that route, there's the possibility she wouldn't be still, so she'd be unnecessarily exposed to radiation with poor image results.  Ultimately it was decided that an MRI was not the best approach.

Instead of an MRI, we have opted to have a type of bone scan done.  They will inject tracers into her and they will go to where the infection is.  The problem right now is that the femur fracture itself will attract these tracers because of the cells surrounding it to try to heal it.  The injection needs to be done a day ahead of the scan, so either we inject Thursday and scan on Friday or inject Sunday and scan on Monday.  The doctors want the radiologist reading the report to be one who is very familiar with what is going on, hence the delay over the weekend.  We could scan on Friday, but nuclear medicine has said that there's about an 80% chance that they will be able to tell where the infection is.  If we wait until Monday, it is possible for that number to improve.  We have opted for Monday.  Infectious Disease and the Gen Peds team agree with this decision.

Here's the thing.  First of all, we aren't even 100% certain this is an infection.  So if it's not, then what is it??  Second, if it is an infection, where is it and how is it responding to the antibiotics that were already started to treat it.  There's no concern over whether or not the type of antibiotic is right or not.  It is the right one to be on regardless of what type of infection it is - a cellulitis or an osteomyelitis.

We are waiting until Monday to scan.  The big "what if" is what if Peyton's leg gets worse over the weekend.  If it gets worse by tomorrow morning, we can bump up the scan possibly.  But if it's over the weekend, what do we do?  The answer is probably not much.  She's on the right antibiotics, so it's not like changing them will help.  Looking ahead and just thinking of the "what ifs", there's the potential for surgery.  I am not saying she needs surgery.  Right now she doesn't.  But suppose she did.  Peyton is not a good candidate at all for a surgical procedure of any kind.  I won't get into all of that, but suffice it to say, we need for the antibiotics to work and for this infection to get better.  And if it's not an infection, whatever it is needs to clear up now!

Aside from the leg, pain management is huge for Peyton right now.  There was a huge discussion this morning about pain management.  Rather than have her on Morphine scheduled every few hours, she is now on a morphine pump with a lower dose which is given continuously.  She is also getting Toradol as of today.  She'll get up to 6 doses.  It has some anti-inflammatory properties, so hopefully that will help alleviate some of her inflammation in her leg to make for a better-read bone scan on Monday.  Pain management is huge.  Peyton's pain is huge.  It is so sad to see her in as much pain as she has been in.

Ron came up today to spend some time with us.  Before he arrived, I was texting him an update.  People keep telling me I can turn autocorrect off.  However, these days it's a pretty cheap form of entertainment.  I keep it on.  I almost always catch any mistakes and correct them before they go through as a message.  Today, however, one slipped past me and I honestly did not even catch it until it was gone.  I always wonder how people don't realize they've sent what they've sent but I get it.  Just being too quick to check, this is a portion of my message to Ron this afternoon.  Maybe it's not as funny as I apparently think it is, but it provided a much-needed laugh this afternoon.

So...yes, a Morphine pump was set up.  That's quite the contraption.  Another syringe pump added to Peyton's IV pole.  I did not realize that the Morphine was kept under lock and key at the bedside!  I promise, you can trust me!!  On this set up, left to right, we have her lipids, TPN, Morphine, and other meds set up to run through her line.  She has a port but it all still eventually goes into one single line into her chest.

No one is getting away with the Morphine around here!

The addition of the Toradol required additional equipment.  The current set up is now officially the biggest IV set up Peyton has ever had.  It's not just a matter of having a pump for each item.  Some meds are not compatible with the TPN so how it is set up is extremely important.

I am grateful today for lunch brought in for me by a dear friend.  I may not have had an "exciting" "different" sandwich {it was chicken salad}, but it was from someplace I've never heard of much less tried.  It was absolutely delicious and I'll have to try that place out one day when we're out of here!  I appreciated the lunch, dessert and especially the company.

Dinner this evening was another family dinner provided by a volunteer group.  It was actually put on by Wendy's.  You went in to the room, grabbed a "to go" bag which had a plate, napkins and cutlery in it.  Then you went over to a table where they were serving up Wendy's chili.  There were baked potatoes but the line up was huge tonight and we missed out on those.  Then you went to the next area where you could get a chicken sandwich or a hamburger.  I got a burger and was even asked if one was going to be enough {this is after already having picked up a bowl of chili}.  Indeed one was enough.  Then you went to a final table where they fixed up your sandwich with lettuce, tomatoes, pickles, etc.  These family meals are often meals made by a church group or another organization {last night it was pharm students}.  It's not every night.  It's random.  But when they happen, they are so appreciated.  They are provided free of charge for the families of children in the hospital.  What a blessing.  It was one less thing to worry about today.

This afternoon, Peyton was moved to a new bed.  Same room.  Just a different bed.  She is starting to have some skin breakdown on her backside.  One of the residents {I believe} made the suggestion to move her from her regular hospital bed to one with an air mattress.  So, that is what was done.  It will sense pressure points and help to provide more support and comfort for Peyton and hopefully help to avoid further breakdown.  The transfer from one bed to another, having two beds in this room {thankfully it's that huge room we were moved to a while back!}, and removing one bed was interesting to watch, but the three nurses who did it handled it very well!

Ron and Moira came back this evening and I spent some time with Moira in the play room.  It was good to spend that time one on one with her.  That room is on the same floor as the unit Peyton is in, so I could leave the unit but still be nearby just in case.  We certainly hadn't banked on a 23+ day hospital stay way back on March 26th so we're trying to do what we can to make this work.  We've talked to the child life specialist here and despite how I am feeling torn about being here and not at home, I am assured that my feelings are normal for what we are dealing with and how we are handling the situation is good.  You do the best with what you can in the situation you've been given.  That's all you can do.

Thank you again for your continued prayers and support.  It means so much.  Please continue to pray and ask others for prayer for our sweet girl.

Hospital Life...Day 21 {Part 2}

Earlier today I wrote about an issue that came up with Peyton's leg.  You can read about that HERE.  This post is to update you on that situation.

Here is the original picture I posted:

That is what we woke up to this morning.  It did not look like that at all last night or through the night.  Anyone who saw her leg seemed shocked the overnight change.  An ultrasound was ordered and Ortho was contacted.  The felt that the splint could be removed.  In addition to this change in her leg, her x-ray from yesterday showed a new fracture.  How a fracture happened with her leg in a splint for three weeks is beyond me, but it did happen.  The ultrasound revealed no DVTs {blood clots}, so that was good.  However, we are still concerned over the possibility of an infection in her leg.  After a couple of hours out of the splint, this is what her leg looked like:

Peyton is a high risk candidate for anesthesia and surgery, so our fear was that something surgical might need to be done - even if it was "simply" to drain it.  Fortunately, right now, it seems that that isn't going to be necessary although we certainly appreciate any and all prayers for this situation to resolve quickly.  We do not want any infection developing at all.

Nutritionally, the TPN appears to be helping, so that is a good thing.  Her labwork where that is concerned is trending in the right direction.  However, some labs came back from stool studies that were begun shortly after Peyton was admitted a few weeks ago.  One of the results showed a deficiency in her pancreatic function which could be contributing to her malabsorption issues.

The highest level of concern today has been for Peyton's leg.  It was ranking pretty high today.  We are still obviously concerned about the possibility of infection - how deep it goes - is it in the muscle?  the bone?  We're not sure about any of that just now so she is on a second IV antibiotic which should cover any type of infection.  Hopefully things will be looking much improved in the morning.  Because of all of today's issues, the doctors have increased Peyton's morphine dose and added in regularly scheduled Tylenol along with scheduled morphine doses every 3 hours.  It seems to be helping some.  She has to be in pain.  I don't know how she couldn't be!

Many thanks to friends of ours for providing dinner.  We appreciate the trip you made to the hospital with it when you knew Ron was up here with me rather than at home.  Thank you so much.  It was delicious!!

Thank you, also, to a group of "Christian lady" blogging friends who have been praying for us for so long, who sent these beautiful flowers to the hospital to brighten up Peyton's room.  They are beautiful and smell wonderful!

Thank you also to one of my blogging friends who created this sweet button for bloggers to add to their sidebars in support of Peyton.  I really appreciate this.  It's perfect!  {If you want the code, let me know!}

Hospital Life...Day 21

Today is Day 21.  Three weeks.  If you missed the Day 20 update, you can read that HERE.

I am writing this update early today because we could use some serious prayers for Peyton.  This morning when the resident came in, we pulled back the sheet to look at Peyton's leg.  Her thigh went from simply looking swollen and slightly red to looking like this:

She paged Ortho and an ultrasound was ordered.  She hasn't had the ultrasound as of yet, but hopefully she will soon.  The team just rounded.  The nurse had {per Ortho's instructions} removed the splint.  When the attending looked at her leg, her leg actually looked worse than what you see above.  This goes down to her knee.  It's hot to the touch.  Looking at the x-ray from yesterday, there is a large hematoma present but the concern right now is that there is infection settling in there.  Depending on what the results of the ultrasound are, she may also require an MRI which, of course, would require sedation.  That is a concern for her.  She is a high risk for surgery should that be necessary.  But, as my mother would always say, "Don't go borrowing trouble."  One thing at a time.  In the meantime, the doctor is going to start her on a second antibiotic to cover any sort of infection brewing.

As we wait for an ultrasound, please say some prayers for her that this isn't anything major that would require surgery.  It may even be that it just needs drained, but that's still a risk.  I wanted to post this now so we could get all of Peyton's prayer warriors going with this in mind this morning.

Thank you so much.  We appreciate it and I will update later when we know more.  

{The follow up to this post can be found HERE.}

Hospital Life...Day 20

Today is Day 20.  In case you missed yesterday's update, you can check that out HERE.

There is not a lot of news to report today.  Peyton is about the same as yesterday.  She continues on her IV antibiotics for a possible infection. 

Peyton was supposed to have her right femur x-rayed tomorrow, but it was done today instead.  Had Peyton gone home from the hospital 19 days ago, tomorrow would have been her 3-week follow up with Ortho for the fracture to check on it's healing.  Her thigh and knee are still quite swollen.  If there is a difference in size {for the better}, it is not much at all.  I'm no radiologist, but I saw the x-ray on the portable machine.  Ouch!!  Poor Peyton.  Just looking at her leg makes me want to cry.  It's so swollen and she has got to be in a lot of pain.  She is still in the newest splint, and I assume that will continue for a while.  Just for my peace of mind, I would want her to!  When she had the tibia fracture back in February, she got to a point in the three weeks her leg was splinted where she would move her leg around as much as she was able.  That isn't happening this time around.  That is a little worrisome to me.

There is still no talk of a date to go home, as things still need to be sorted out with her labs, TPN, pain management, and so on before that can happen.  To be honest, I have fears about going home.  We will have her admitted to the hospice care program, so that will be helpful, but it also puts us in a new season of Peyton's life.  When I see how Peyton is today, I see a pretty sick child.  I see an improved version of the girl laying in that bed a couple weeks ago, but nothing has changed with what's going on on the inside - the underlying condition.

I try my best to not worry about the things I shouldn't worry about - whether it is with Peyton or things on the outside world.  I am trying my best to only be concerned with today, but then things creep into my mind....like who is the next attending going to be and when will the change happen.  Will they be as familiar with Peyton as they need to be?  Have they been with her before?  Again, I get ahead of myself by worrying about these things, but still I worry.

Tomorrow we wrap up three weeks in the hospital.  Thank you again to everyone for their kindness, support, prayers, etc.  We truly appreciate it!!

Keep up the prayers!!

Hospital Life...Day 19

Today is Day 19.  If you missed the Day 18 update, you can catch up HERE.

Last night, Peyton's heart rate began to rise a bit.  It was concerning to find it back in the 130s-150s.  It was higher than it has been lately once again this morning.  She also didn't quite look "herself" yesterday.  Ok, well, that could be said for the past 19 days, but considering how she's been the past few days, yesterday was a negative change.  I thought her eyes maybe looked more purple or sunken.  She was a bit more irritable and wanted nothing to do with smiling for anyone today.  Her temperature had also been a little higher than it had been both yesterday and today.

When the doctors rounded, they decided that it would be a good idea to get a chest xray.  I don't know what that showed officially.  They also drew some blood and did a urine culture.  Her white count was up a bit.  Rather than take any chances with Peyton, they began some IV antibiotics.

A couple of the nurses on the floor gave Peyton a "spa" treatment when they were cleaning her up today.  One decided that the ties from one of the yellow disposable gowns that they wear when going into rooms on contact precautions {as they do in Peyton's room} would make good pigtail ties.  They also gave a pedicure to match her manicure from the other day.  I thought that was so sweet of them.

Aside from what seems to be some kind of new infection brewing, it's been a quiet day.  Ron and Moira came up this afternoon as did one of Peyton's home nurses.  I think it's a "tired" day all the way around.  I took a nap late this afternoon.  I feel marginally better now.

We shall see what tomorrow brings.

Hospital Life...Day 12 & 13

It seems like yesterday was a busier day than I thought it would be when I wrote the Day 12 update.  I thought I would take a moment now while it's quiet to write a quick post on how the rest of the day went.

Peyton's leg began to swell above the splint again.  It hadn't gotten completely better by any means, but it was a little improved.  However, it was actually quite swollen, going further down towards the splint.  It was warm to the touch, tight feeling, and red.  I called the nurse in to come and look at it.  The splint definitely seemed like it was too tight around that area.  Her toes still looked good, so we weren't worried about lack of circulation down her leg.  Of course, because the splint is involved, Ortho needed to be paged.  This was mid to late afternoon yesterday.  They weren't really responding so peds came and looked at it and they got back on Ortho to get them to come over.  The issue was not that we thought it was a problem that could be addressed by Ortho - it was that she has a problem with her leg and the splint may need to either come off or be re-done a little more loosely.  At some point around 4pm or so, we were told the Ortho doctor on call was down in the ER with a trauma and would be up in about 30 minutes.

LONG story short, he came by sometime after 10pm.  Maybe closer to 11pm or later.  He'd been paged multiple times.  No one up here was happy.  When he did come in {and I will spare you the actual conversation}, we were definitely made to feel like our little swollen leg wasn't as much of a priority as the slew of traumas that were apparently coming in to the ER.  I will tell you that our nurse last night was not impressed in the slightest.  Nor was I.

As a sidebar, here is my word of advice to anyone in medical school, in the medical profession, or anyone who is seeking to be in the medical profession.  You need to check your ego at the door.  No patient is more important than another.  I'm not speaking clinically - I agree that there is a triage system in place for a reason.  However, when you come up to a patient room, you need to be aware that that body lying there in a bed hooked up to all kinds of stuff...that is a person.  And those bodies in the room watching over that person...there's a good chance that that is their family.  And if you take a moment to look at the patient's chart for half a second, you might find out that the person and family in that room might just be dealing with something that is potentially life-threatening.  So, what you consider to be an inconvenience or interruption to some, perhaps, more "exciting" medical drama down in the ER, might just be something that is of extreme importance to the people waiting upstairs for hours for you just to hopefully give some relief to that child.

All that said, a little while later, that doctor was back and one of the issues we wanted resolved was taken care of.  I am not thrilled with that whole experience, but I am not going to allow it to define this hospital stay.  It doesn't.  It was just a bump in the road of this whole experience.  Peyton has received excellent care this whole time.  While we did have a not so nice experience, I want to place more emphasis on a) what can be learned from this as I shared above, and b) that there are people in the medical profession who are willing to go to bat for you when something like this happens.  Peyton's nurse was right there when it happened and I can assure you that when she left the room, people in the right places knew what happened.  I had more than one apology for the experience from people who weren't even there.  I want to focus on the good of the situation and how things can be made better if there is just a better understanding of people's situations.

With regard to the swelling, prior to Ortho coming in, the peds attending came back in the evening to check on Peyton.  They are being very cautious about how much testing is done - whether it's in the form of x-rays or lab work.  If there isn't something obvious or they aren't sure what they will do with the results, there's a good chance that they will hold off.  They are being very cautious about how much they are putting Peyton through.  After much discussion, it was decided to put her back on an IV antibiotic to cover any type of infection that might be happening.  They also decided to get a urine sample and some blood.  I haven't heard back on those things specifically.  It did appear that Peyton might have been dehydrated so they gave her a bolus of fluids as well.  It seems strange to think she's dehydrated when she's retaining all this fluid.  It's just that the fluid she's retaining is not in the right places.

This morning, Peyton looks much the same as she did last night.  The bolus seems to have helped a bit.  She has been having a lot of diarrhea lately so that's probably why she's been dehydrated.  The addition of the IV antibiotic won't help in that area.  Her hemoglobin is very low again this morning.  I want to say it was around 8.6 or so yesterday {maybe a little higher}, but this morning it was 6.7 and then 7.1 when they rechecked. Recall that it was 7.2 when they did the blood transfusion a little over a week ago.  The team hasn't rounded yet, but I am going to assume that another transfusion is likely.  She may also need albumin.  Peyton has also gotten a couple infusions of potassium because that is also low now.  They want that number to be around 3.5 and hers was in the 2s {maybe lower but I can't remember how low it got}.  Today it's 3, so they may do another one.  Lots to look forward to.

I mentioned that Peyton's attending had rotated off and the new one came on for the weekend.  When he came back in last night, we wound up having a bigger talk about the whole picture.  I know that the doctors have this optimism but as the mom, just sitting her watching Peyton, I would love to be that optimistic {and I'm not sure on a scale of 1 to 10 just where their optimism lies}, but I honestly don't see how we can get to where she needs to be to even consider going home.  If that is the road, it's a very long one.  When we sat down to talk, he felt that maybe my "mom radar" was going off about things as my responses to his questions earlier in the day were maybe not ones he expected - perhaps lacking in the optimism would be the best way to describe that.  Anyway, you know, I hate crying in front of people here.  I don't know why.  I cry on my own no problem.  It was a good talk.  I am sure I needed that.  I know we're all on the same page as far as how much we do for Peyton, but it was good to let my thoughts known as well so they know where my mind is at.

After finishing that thought, the residents were by and discussed the Ortho issues and the issues with her potassium, hemoglobin, albumin, etc.  So, we will see what happens today and I will update later.

Hospital Life...Days 4 & 5

First of all, today is National Doctor's Day!  Did you know that?  What better place to spend it than in the care of some of our favorites.  Well, ok, I can think of better places to spend it.  That said, I want to take a moment to thank the following for all they have done for Peyton.  I know I'm going to miss some, but here goes:

Cardiology - Dr. A. Savage
Endocrinology - Dr. R. Paulo
ENT - Dr. D. White
Gastroenterology - Dr. R.B. Pillai / Dr. J.A. Quiros
General Peds Team {in-patient} - Dr. D. Mills, Dr. R. Teufel, Dr. P. McBurney, Dr. S. Mennito, Dr. A. Summer
Genetics {Boston Children's Hospital} - Dr. W-H Tan
Genetics {MUSC}- Dr. G.S. Pai
Neurology - Dr. S. Kinsman
Neurosurgery - Dr. S. Glazier
Orthopedics - Dr. J. Mooney
Pediatrician - Dr. J. Quinn
PICU Team {in-patient} - Dr. F. Tecklenburg, Dr. S. Webb, Dr. J. Cochran
Pulmonary - Dr. C.M. Bowman & Dr. I. Virella-Lowell
Surgery - Dr. C.D. Smith

And these are just some of the outstanding physicians who care for Peyton.  There are countless other doctors who have impacted our lives - from when we lived in Houston and when we went up to Boston.  Then there are the countless residents, fellows, medical students, Anesthesiologists, Radiologists, ER doctors, and other specialists who have been consulted along the way.  The above list, for the most part, are the people we see most frequently.  I mention the hospital doctors because Peyton is in the hospital frequently and when she is in she is often in for a while.  These people are people who recognize us even when we aren't in the hospital and we're just passing in the hall on the way to a regular out-patient appointment.  The in-patient doctors are ones with whom I have had the extremely difficult discussions with about what to do in the event that Peyton suddenly needs medical intervention to stay alive.  These people are important.  You don't forget the ones with whom you have had those conversations!

So...a very heartfelt thank you to all the doctors who have cared for Peyton in the past and present.  Saying "thank you" seems insufficient.  But thank you!

~~~~~

Now, on to the update on Peyton's health.

I was so tired yesterday that I couldn't even think of writing an update.  I tried to sit down to do it, but it wasn't happening.

If we back up to Thursday {Day 3}, you know that Peyton was moved from the regular unit to the PICU step down unit.  I didn't really talk about why.  When Peyton woke up that morning, she was extremely irritable.  She'd been getting oxycodone and morphine for her pain as often as she could get it and, yet, she still seemed to be in a lot of pain.  When the respiratory therapist was in, she noticed how unlike Peyton this behavior was, even for being sick.  Later in the morning, another respiratory therapist was in with her for treatments.  As she was working with her, she grew concerned because Peyton was only taking 6-8 breaths a minute.  Instead of being extremely agitated and irritable, Peyton was pretty much out of it.  Not much activity at all.  She went from one extreme to the other.  We didn't know what was causing either one!  She called the respiratory therapist who had been in earlier.  They called in the nurse.  They eventually called in the doctor.  A lot of assessing went on and, long story short, it was decided that she could be better observed in the PICU step down unit, so she was transferred.  They did consult with the PICU team, who did come down to assess her themselves.  This is a good step to take just in case something were to happen that would send her to the PICU itself.  Through all of this, though, we really didn't know what was causing her to be so sick.

The doctors were quite concerned for her on Thursday.  There was a lot of unknown in terms of why she was behaving the way she was.  Rather than just jump to the thought that there was some neurological issue going on, they decided to see if it was all of the heavy pain medications.  They gave her a drug through her IV called Narcan.  This drug basically reverses the effects of any opioids in the system.  She has had no morphine since then and very little oxycodone.  While the drug was being administered, Peyton grew clammy and cold and then began throwing up a lot.  She did become agitated again and her respiratory rate did increase.  Eventually, though, she became pretty sleepy again.  Throughout the time she had been in the hospital, her heart rate had been pretty high.  Normally when she is asleep, it's between 70s-80s and it was in the 150s while she was sleeping.  While awake it's in the 1-teens to 120s normally, but it was anywhere from the 130s to 160s during this time.

The lab work through Day 3 wasn't showing any infectious process, although it certainly seemed like she had some sort of respiratory virus.  They did find that she had more CO2 in her system than she should, so it was recommended that she go on her bipap, even when awake, to help with her respirations.  This did seem to help a bit and her CO2 levels did come down.  More lab work was done.  Additionally, she was sent for a head CT and a shunt series to check to see if her shunt is working properly, and a fully skeletal survey to see if there were any additional fractures.

During the night of Day 3/4, it was decided that Peyton needed to be given IV antibiotics, so those two were started.  We also got the results of the skeletal survey and it did show a new hand fracture.  Nothing is to be done about that in terms of splinting it.

This is Peyton right before her transfusion.

On the morning of Day 4, Peyton's labs were showing that her iron level was very low.  Additionally, her hemoglobin had been dropping.  On Wednesday it was 8.9.  On Thursday it was 8.1.  On Friday, though, it was 7.2.  It was decided that Peyton definitely needed a blood transfusion.  She had never had one before, so this was another "first".  That was started around 3pm and ran over about 3 hours.  At the end of it, she seemed a little more "pink".  Oh, she certainly didn't look "well", but she looked better!  Aside from this, there was just a lot of "watching and seeing" and continuing with the IV antibiotics.

Today is Day 5.  Peyton looks so much better.  Again, not "well", but vastly improved.  She's agitated today.  Last night her right thigh was swelling above the splint.  It had been getting more swollen throughout the day, but is looking a little improved this morning.  Also, yesterday her left index finger became pretty red and swollen.  They did another hand x-ray and it apparently doesn't show a fracture there, but that's not to say there isn't one.  To look at it, I would guess there is one.  The resident said it could take some time to heal before it shows up better on the x-ray.  There really wouldn't be anything to be done for it anyway.  Peyton's hemoglobin is up to 8.6!  They will, of course, keep an eye on that to make sure it doesn't drop again.  They did find some blood in her stool and a small amount of bacteria growing in her urine sample.  They'll keep an eye on all of that as well.

This is Peyton right after the transfusion.  Just a little more "pink" than before.

Peyton looks quite a lot better this morning.  Again - not "well" but if you'd have seen her on Thursday morning, you'd see a huge improvement now.  Our heartfelt thanks to the anonymous donor who gave blood {type O negative} so that Peyton {also type O negative} could receive this much needed boost to her system.  If you are a donor, thank you.  It's because of people like you that she was able to get this blood.  If you aren't and don't have any health reasons not to donate, then would you consider donating?  You never know when you or someone you love will need blood!  As it turns out, I wouldn't have been a match even if I could have done a direct donation.  Our types don't match.  So that makes me even more grateful to donors today!  Thank you!!

Yesterday was Good Friday.  I wrote a post on my personal blog about the fact that Peyton was receiving blood on that day of all days.  You can read that post HERE.

As for today {Day 5}, we'll just watch and see and make sure nothing gets worse.  She was throwing up a lot yesterday and she has already thrown up a little today.  She may have a little bug.  We will not be home for Easter tomorrow.  This will be the first holiday that Peyton has spent in the hospital.  She did, however, get a nice little Easter basket yesterday from the volunteers.  I think Moira will benefit from the contents more than Peyton, but it was very nice to receive.

I will keep you posted as always.  And, as always, prayers are very much appreciated!  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.

\

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!

Research Studies

Peyton has been doing about the same as usual for the past couple weeks.  She is still having issues with maintaining good oxygen levels, so she is spending most of the time on oxygen via nasal canula.  Her heart rate continues to be a little higher than normal as well.  Earlier this week, Peyton completed a two week course of antibiotics. We weren't really sure what was going on, so the pulmonary doctor put her on antibiotics just in case she had something brewing.  It doesn't seem to have done anything at all.  I spoke with the clinic the other day and she is going to start on an oral steroid for about 4-5 days to see if anything changes.  She quite possibly has some inflammation so it may help with that.  We shall see.

In other news, just prior to Christmas, we finally completed all the paperwork that was necessary for the Manton Center for Orphan Disease Research at Boston Children's Hospital.  This is the research center that Peyton has been brought into to see if they can unlock the mystery of her genetic disorder.  We sent in the research consent forms - one for each of the four of us.  A couple weeks ago we spoke with one of the people at the Manton Center regarding the study and what our next step would be.  We are awaiting kits from them which will have everything we need to have blood samples from Ron and I and a saliva sample from Moira sent back to them.  We'll take that to the lab at MUSC here and they can coordinate the delivery of the samples.  Boston Children's Hospital has Peyton's blood already, so hopefully there is enough for them to provide to the Manton Center.

Peyton's Geneticist in Boston is wanting to look at a specific gene based on the research he has done which has him believing her to have an exceedingly rare copper disorder {think in terms of her being one of 5-10 people in the world or quite possibly even more rare than that}.  If it is normal than they will move on to whole exome sequencing.  Right now, through regular testing, Peyton could have whole genome sequencing done to the tune of about $10,000.  When the Geneticist at MUSC mentioned this to us, it was not covered by insurance.  I am not sure if that has changed.  This test is, by far, the most advanced genetics testing available to the public.  Whole exome sequencing is still being done on a research level.  That testing is even more advanced than whole genome sequencing.  So, if she has this test, it will be the most advanced testing known ever.  It will be covered through the research study, so that is good!

This particular research study is on-going.  This means there's no end.  They will continue to work to find answers for us.  It's for patients like Peyton who have exhausted all other options of testing and who still remain undiagnosed.  The study is anonymous, so any labels pointing to Peyton are removed. She becomes a number for research purposes.  However, should they find anything, it will be reported back to her Geneticist in Boston.  Nothing will go into the patient record since it's an anonymous study If there are findings, we would have to go through a clinical lab {as opposed to the research lab} so that the findings could be officially be added to her medical record.  The clinical lab would require new samples for their requirements.

If nothing turns up in whole exome sequencing, then they will keep on researching and testing.

In addition to this, I was given the name of a doctor at the the National Institutes of Health in Bethesda, MD.  He had been up at Boston Children's Hospital and our geneticist up there had spoken with him about Peyton.  They are very much on the same page about what they think is going on.  This doctor is apparently a world expert in copper disorders.  While Peyton has a copper disorder of some kind, if you were to google copper disorders, I'm pretty sure I could tell you that none of the ones you will find are what she has.  She doesn't match up it the known copper disorders, yet the copper in her system is virtually non-existent.

This doctor at the NIH is doing clinical trials with copper supplementation.  It was up to us, but our geneticist spoke with me about contacting him to see about getting into that trial. What this means is that if we go this route, there are a lot of tests to have done on Peyton prior to starting any copper supplementation.  We were already planning on having this testing, but for sure it would have to be done before receiving any copper supplementation, regardless of where we would get it from {Bethesda or perhaps eventually Boston}.  We are working with Peyton's neurologist here to coordinate her having a lumbar puncture.  Similar to testing for meningitis, but the requirements for her test are much more strict {I will say that - they require a "pristine" sample.}.  She will also require a skin biospy at some point.  I am not sure if that will be done at MUSC or Boston Children's Hospital.

I have emailed Dr. K in Bethesda about the clinical trials so that I can introduce myself and to find out his thoughts on Peyton's participation in the trial.  I haven't heard back yet, but it's only been a couple days.  If we get in on that, we'll try to coordinate things so that we go to Boston and Bethesda in the same trip.  Apparently the Bethesda trial covers expenses so perhaps that's a separate trip that's covered.  Peyton cannot fly {impossible with all the equipment she requires}, so unless they get her a medical flight and have her stay in a hospital there, I'm pretty sure we'll have to drive.  It's on the way to Boston so it wouldn't be out of the way on a trip up there.

Aside from all of that, I have a new blog design!!  If you're here, then I'm sure you noticed it!  If you can believe it, I did it all by myself!  I'm pretty excited about how it turned out.  I hope you like it too.

Aside from Moira being down with the flu right now, I suppose the only major newsworthy item to report is that Ron's company recently {last week} had a surprise round of layoffs.  It was a tense day when that happened.  While we waited to hear if the cuts were finished on that day, we discussed a back up plan.  It isn't pretty...but it's a plan.  Thankfully, Ron's department was spared cutbacks, so all is well.  It made the news here.  I'm not sure how extensive the coverage went, but if you heard about layoffs at Blackbaud...that's where he works.

I will update you with any further developments on this whole research thing or if anything comes up with Peyton's current health issues!