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 30

Today is Day 30.  If you missed yesterday's post, you can read that HERE.

This morning got off to a busy start.  By 9:00 am everything was loaded up and ready for going down to Nuclear Medicine for her gallium scan.  This scan was in the room across the hall from where she was on Monday and used a different type of camera.  Unlike the scan on Monday, Peyton had to be transferred from her bed onto a table for the scan.  They put a slide board under her and then shifted her onto that, then onto the table, then removed the slide board.  It was the easiest way to transfer her, but it wasn't without some discomfort.  Thankfully she was able to get some additional Morphine during the process.  She had also had her Ativan prior to going down there.  All in all, the entire experience {transfers and scan itself} did not appear to be too painful for her.

The process of scanning her took around an hour.  She was scanned from head to toe.  What they were looking for was to see where the gallium from the injection on Monday had concentrated.  It settles around areas of infection, abscesses, fractures, and so on.  They were hoping for at least an 80% chance of getting a clear picture of what's going on with Peyton's leg.

Later in the day, we heard that they did in fact find a couple large areas of infection.  Peyton's right thigh was quite lit up on the scan, meaning that there is a lot of activity going on there.  We were told that there is infection in the tissue.  There was also a second area of infection.  Bones are encased in a membrane called the periosteum.  One thing that we have known is that she has a very large sub-periosteal hematoma - a collection of blood / bruising between this layer and the bone.  We were told that this area was also an area of infection.  These two areas obscured the bone so much {how they lit up in the imaging} that they could not tell if the bone itself contained an infection.  Since there is an infection in the sub-periosteal area, the likelihood of there not being a bone infection would be slim.  This is what we were told.

Later on, the Infectious Disease team came in.  We heard an updated version of the story.  I am not sure how many doctors have weighed in on the imaging from the gallium scan - or what their specialties are - but there is some dispute among them now as to what is going on in her leg.  Is it infection as we were told originally after the scan?  Perhaps not.  There's not a consensus on the issue at the moment, so right now we are kind of back to square one in terms of what we know about what this area of concern with her leg is.  The idea of going down for more scans had been mentioned when we were down in Nuclear Medicine.  That wasn't going to happen after we found out it was an infection.  Now that they aren't sure, Peyton is going to have more imaging done tomorrow.

For now, we just wait and hope that we can get a clearer answer tomorrow.  I know everyone is trying their hardest to figure this out, although it was kind of disheartening find out one thing and then find out it may not be that after all.  It's just one more day.  She's already on the antibiotics she would be on if it is an infection after all, so it's not like she's not getting appropriate treatment.

In other news...

It has been days since Peyton has smiled.  She has earned the nickname "Grumpy Cat" on the floor.  Don't know Grumpy Cat??  Here's a picture of Peyton channeling her inner Grumpy Cat:

Peyton received some more beautiful flowers yesterday!

I'll keep you posted on how the next round of imaging goes.  Hopefully we'll have some answers tomorrow.

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 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 22

Today is Day 22.  You can read the two parts of my Day 21 post HERE and HERE.

Today was a semi-quiet day.  I say that mostly because Peyton has been sleeping almost the entire day.  I think yesterday was pretty difficult for her with her new leg issues.  Her day today did not start off well either.  She was awakened only to go right into her respiratory treatments.  She was not wanting any part of that this morning and we all knew it.  Poor baby.  Fortunately, her repositioning in bed and her treatments coincided with her dose of morphine, so I hoped she wouldn't be feeling too much pain for long.  Between her leg and her shoulder being constantly dislocated, I feel so awful every time I have to move her in any way!

This is Peyton's leg as of this evening:

There's not a huge change from this morning.  In fact I would say that there has been no change today.  Between last night and this morning, though, I would say that it may be every so slightly improved in that it is not as "angry" looking.  It's definitely red.  It's also still pretty warm.  It also looks more inflamed.  There is still a lot of concern for her leg.  If there is an infection present, we have no way to know how deep the infection runs.  Is it just in the tissue or does it go into the muscle or the bone?  

The attending decided that we should probably have the doctor from Infectious Disease take a look and give his opinions.  We go way back with this particular doctor.  In fact, he goes to our church so we see him fairly regularly.  A year or two ago, Peyton had gone through a period of respiratory illnesses which would not go away no matter what course of antibiotics we tried.  We say the ID doctor and he took care of her for a while.  Now he is back on her case with this leg issue.  The thing with the leg infection is that if it is just in the tissue, it's a 10 day course of antibiotics.  If it is in the bone, then it means 8 weeks of antibiotics.  So, they definitely want to figure out where the infection lies as there is a huge difference in the treatment plan.  The problem is that right now there is really no great way to figure this out.  Peyton is not a good candidate for sedation right now, and if she were to have an MRI, she would most likely require sedation.  She isn't moving that leg around a whole lot, so maybe there is a way they can try without sedation.  I don't know.  They will speak with whomever they need to speak with to figure out the best course of action for Peyton.  Right now, her leg is a main priority and, as far as the main resident is concerned, we're not out of the woods with her leg yet.

Just before the ID doctor came in, one of the people from the Hands of Hope hospice program stopped in to check in on Peyton.  She can't be officially admitted into the program until she is discharged to home, but she wanted to check in and see what has been going on since we last spoke.

Many thanks, again for all the love, prayers, support, and so on.  We truly appreciate everything everyone is doing.  If you are new here, welcome.  And thank you for your prayers for Peyton!

Not Well At All

This morning, Peyton seems to be a little worse.  When I woke up, she was covered in multiple blankets.  Her temp was apparently low overnight (low 96's).  She's been wearing bipap continuously the last couple days.  She was going to be going down to xray, so she was switched to a nasal canula for transport.  When I took her mask off, we noticed her face was very puffy.  She's also pretty lethargic today and her mouth is pretty dry.

We went down to xray, which turned out to be a non-event.  Whatever was ordered was apparently called off for now, so after getting her all situated on the xray table, with oxygen tank and hooked up to the monitors, we had to get her back into her crib with all of that stuff to head back up to her room.

The doctors were by this morning.  While they were out in the hall, I had to suction Peyton.  What I got out was unreal.  Her secretions are SO thick they are almost solid.  There are mass quantities.  They are also darker yellow now.

She is not as well today as she was yesterday.  We don't know what is going on.  I am trying to be strong, but this is unreal.  I don't blame the doctors for not knowing what's going on with her.  They are doing all they can with what they know.  She's on 3 antibiotics.  She' s on IV fluids.  I don't know that there is more that can be done but I just wish we knew what we were dealing with!

Dermatology is supposed to come by to look at the rash on her hand.  Cardiology is now being consulted because of the edema (face/feet).  Infectious Disease is still weighing in.  GI is on board because of the bleeding from the j tube.  She's on the Peds service, although the PICU docs were there for her last week and they are aware of her being in the stepdown, not to mention that they were there for her endoscopy yesterday.  Ortho consulted regarding her dislocated shoulders.  Neurology has been involved as has Neurosurgery.  And Pulmonary is also involved.  That's 10 specialties in case you didn't take the time to count.  11 if you count the Dietician.

So, I would say that they are covering all their bases.  I wouldn't concern yourself with thinking that they aren't doing everything they can at this point!  :)

As always, I will keep you updated.

Update

We made it through the weekend!

Peyton is feeling better still.  She still sounds kind of junky and has a lot of secretions, but overall, improved from last week.

We had her follow up appointment with the Infectious Disease doctor who, as it turns out, also attends Seacoast!  He is so nice.  Anyway, he said she sounded better today than she did at the appointment just the day before Peyton went into the hospital, so that's encouraging.  He stopped her antibiotics.

Please keep praying that she continues to get better and that we do not start a cycle of one hospitalization after another with ongoing respiratory issues like we had last year!

We're Back...

....in the hospital.   :(

Peyton woke up this morning and her oxygen saturation was low, so I wound up keeping her on oxygen throughout the morning.  I actually had to increase it to more than twice what she normally gets when she's sleeping.  In addition, her heart rate was a little higher than normal.  By the time the home nurse came at noon, her heart rate was over 160 and she was still on oxygen, although I'd been able to lower it a bit.  She also had a temp of 101.4.  She called the Infectious Disease doctor and he recommended that we bring her to the ER...so we did.

We got into an ER room quickly and the doctor was in very shortly thereafter.  Within minutes, we knew she was being admitted.  Same old respiratory issues as before, it would seem.

I just saw the doctor and he said she's looking better than what was described.  I would agree.  I don't know if it's the heavy duty antibiotics she is on, prayer, someone watching over her, or what it is, but she's quite improved.  We'll see how the night goes and how her chest x-ray looks tomorrow.  I'm not sure how long she'll be in the hospital, but they are well aware of her history and are keeping a watchful eye on her!

Will report back tomorrow on how she's doing!

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

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

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

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

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

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

Fervent Prayer Needed

Peyton saw the Infectious Disease specialist this afternoon.  We saw him for the first time a couple weeks back and he changed her antibiotics.  She actually went downhill for a bit afterwards - enough to where we were starting to get a bit concerned about needing to go to the ER, but it never got to that point.  We saw him today as a follow up.  Peyton is no better or worse right now than before the antibiotics were changed.  Therefore, it's not likely this mycobacterium which has been making her so sick.  As for what it is, I have no clue.  However, there's no point in keeping her on antibiotics for this if they aren't actually making her better.  The last thing we need is to keep all kinds of antibiotics going and discovering down the road sometime that she's become resistant to them.

So now we wait.  We really need lots of prayers for Peyton now.  This is her first time off all antibiotics since the beginning of February.  Even before that, she spent the better part of the year before off and on antibiotics.  We're concerned about what happens now that she's off of them.  I expect the next couple days might continue as usual, but I worry about the days and weeks after that.  The last thing we need (yes, I realize this is a second "last thing" in this entry!) is for her to be winding up in and out of the hospital like she was all last year.  So please please pray for her health to remain stable (or even just get better altogether!!!) and we aren't thrown into chaos again.

James 5:16 "...The effective, fervent prayer of a righteous man avails much." (NKJV)

Proverbs 3:5 "Trust in the Lord with all your heart, and lean not on your own understanding." (NKJV)

Will keep you posted on how things go.

Busy Busy Busy

Peyton has been 5 for a whole week now!  

Peyton has managed to stay ER-free since May 3rd!  This is somewhat of a milestone in and of itself.  Prior to this, we were showing up at the ER every 2-3 weeks!  Big praises to God for allowing this bit of peace in our lives!

This past week has been quite busy with lots of appointments.  I'd like to say we're through with appointments for a while, but we're not. Here's an update on what's new with Peyton:

We saw a new doctor last Monday.  This one is an "Infectious Disease" doctor.  The pulmonary clinic had consulted with him a few times on Peyton's medicines for her respiratory infections, so he offered to see her himself.  The thrush we've been treating for a few months, according to him, is not thrush!  I'm not sure he knows exactly what it is, but he knows what it's not.  We're no longer treating for thrush.  It could just be a nasty coating on her tongue from all the meds she takes.  As for the treatment for her respiratory illnesses, he's made a change.  The pulmonary clinic had already taken Peyton off of the one antibiotic which was clogging the tube.  It was changed to a different one.  She is also on a second antibiotic.  Has been this whole time.  The ID doctor has taken her off of that one and put her on a new one.  So, she's on two new antibiotics now.  She's taking zythromax and zyvox.  If she starts to show some improvement in the next four weeks, she'll continue on this treatment plan for a few more months.  What's a few more months considering she's been treated on double antibiotics continuously since February 2nd.  If there is no change, we'll stop the antibiotics altogether, as we would have basically determined that the bacteria we are trying to treat with these antibiotics is probably not what is causing her to get so sick.  She's been on the new drugs (combined) for nearly a week.  The only change I'm noticing is in the form of horrible, nasty diarrhea. She's spent the better part of the last year and a half on antibiotics, and this has become a way of life...but this...this is worse than anything she's had in a while.  Poor Peyton.  Hopefully it will improve in time.

On Thursday, Peyton saw the GI doctor.  She's in the 43rd percentile for weight, weighing in at just a little over 38 lbs.  There's no muscle to that weight.  What "excess" there is is in the form of flabby little upper arms, a face that's rounding out, a belly that's getting bigger, etc.  Don't get me wrong...Peyton is NOT FAT.  Far from it.  We discussed her weight.  It's been stable for the past little while, which is good.  We don't really need for her to be gaining weight right now.  That doesn't benefit anyone.  The doctor is happy with where things are at from his perspective, but suggested that if her weight increases a bit, to cut back on her pediasure by half a can a day and replace that volume with water or pedialyte so she doesn't lose the fluid intake.  For now, we'll keep doing what we're doing.

On Friday, Peyton had her 5-year check up with her pediatrician.  It was relatively uneventful.  It resulted in a call to the genetics clinic to discuss some possibilities with the doctor and how to go about testing.  This has to do with one of my prior posts where I had said that there was something brewing.  I'll keep it under wraps for now, but might involve some Genetics testing (if possible) in the form of a muscle and/or skin biopsy.  After speaking with the geneticist, I'm not sure what she'll have tested (if anything), but he's going to see her on June 1st rather than wait til our previously scheduled appointment in September.  As for the 5 year check up, all went well.  The doctor had recently traveled to Lourdes, France with a group of "malades" (pilgrims) to visit the shrine there.  He'd actually talked with us prior to all of Peyton's serious illnesses of late about going on this trip.  It would have been last year's trip, I believe.  Peyton just couldn't go - the people who determine eligibility for the trip felt it probably wasn't in her medical best interests at the time, since she required certain equipment.  Now a year has passed and, while we'd love to go, unfortunately I'm sure it's not even an option with everything we're dealing with now.  Anyway, the pediatrician told me that some of those people were asking for Peyton and they prayed for her at the Grotto, which was really special.  He gave me a little bottle of holy water from Lourdes for her.

We will start out this coming week with a visit to the ENT Monday morning.  Should be fairly straight-forward.  This is an area where we could get into "things which we don't want to get into".  When Peyton was at her worst over the summer/fall, Ron and I made some decisions with respect to her treatment plan/care which meant deciding to NOT do certain things.  One of those things is a trach.  There are a few surgical options which *might* potentially help Peyton - they all would involve a trach.  Not doing it.  Those decisions are fairly personal and they were made with much thought and with Peyton's best interests in mind.  So, as for the ENT visit, I expect him to NOT go into surgical options, because he knows what our decisions are.  I expect him to check her ears, nose, and throat.  I expect he'll say the tubes look good (as no other doctor recently has indicated they are anything other than "good").  I expect he may reference her sleep study which she had a few months back.  Maybe we go over that.  Maybe we discuss how the bi-pap is going.  I expect we'll be on our way fairly quickly.

This week ahead is our last week with our current nursing agency.  We'll move on to another phase on the 31st when we do the admission with the new agency.  I've got an email in to them to see if they have an idea of what our first week will look like in terms of staffing.  Prayers are very much appreciated for this!!

We also have Peyton's IEP meeting with the school, so we'll see how they think she's doing and what our summer plan is.  School is out on June 3rd!  That sure crept up on me quickly!  June 1st is the aforementioned genetics appointment.  Back to the ID doctor on the 6th.  I think after that we might just catch a bit of a break from doctor appointments!!  There always seems to be one or two times a year when we're just overloaded with doctor visits.  April/May has been one of those times.  Glad it's winding up!

Will update on how those last few items turn out.  Praying for improved health for Peyton now that she's settling into these new antibiotics.  Praying for some rest for her (she's not sleeping well) and for me (I'm not sleeping well)!

Update

Peyton is doing well after the events of 4/8/11 which I wrote about on 4/9/11.  We have periodic concerns about the tube and whether or not something happened to it internally, but she is acting fine.  I never did hear back from the hospital regarding my complaint.  I will be contacting them to see if they're even doing anything about it.  I did hear back from the PA in surgery and she spoke to the surgeon.  His response was that if we wind up back in the ER with tube issues, tell the nurses to page both of them.

Peyton saw her Neurologist today.  It was a lengthy visit where the doctor spoke a whole lot about a lot of stuff.  We didn't really come out of there having learned anything new, but it was a good opportunity for him to assess her current situation.  He's very pleased that she's been out of the hospital for as long as she has been (since mid-November!!).  He's always thinking, so he will continue to think and see if he can come up with some ideas on how to proceed.  The problem is that there are so many issues with her, it's hard to say where some things are stemming from.  Is her physical regression a result of decline in overall health?  A result of her neurological impairments?  Are those impairments worsening?  Is there another underlying problem?  He'll see her back in six months.

I spoke with the nurse practitioner in the Pulmonary clinic today.  Peyton's had thrush in her mouth for 8+ weeks now.   She's had two courses of oral Nystatin.  That was followed by a course of Diflucan.  None of these worked, so the NP spoke with the doctor, who wound up contacting a doctor in Infectious Disease.  Remember, Peyton has been on so many antibiotics for over a year now, but has been on continuous antibiotics since February 2nd for the mycobacterium which was found in her lungs.  She will continue on those antibiotics for some time.  As a result of all the antibiotics, she's had thrush now for well over 8 weeks and it's not responding to meds.  The ID doctor recommended another round of Diflucan, but a stronger form.  Finally her tongue started to look much better.  Not normal, but much better - if you'd have seen it at its worst, you'd be amazed at how it looks now.  As that course of antibiotics was winding up last week, I contacted the Pulmonary nurse practitioner to find out what we should do since it wasn't completely gone.  Another round of the higher strength Diflucan was prescribed.  We're now a few days into another 2 week course of antibiotics.  We'll see what happens.

When the nurse spoke with the doctor in ID, he suggested that perhaps we bring Peyton in to see him in the Infectious Diseases clinic.  This makes sense - she's had this mycobacterium for so long, plus this seemingly incurable thrush, plus the fact that they actually found some yeast (aka thrush) in her lungs when she had that bronchoscopy a few months back.  We see this doctor in mid-May.  I think we actually saw him once when she was in the hospital, so he's not completely unfamiliar to us.  Although, I'm sure he was in complete "precautions" get up (gown, mask, gloves) when Peyton was in the hospital, so I couldn't tell you what he looks like!

That's about all that's new tonight.  Praying that Peyton's tube issues have resolved.  Praying for the thrush to finally go away.  Praying that someone, someday may have some answers regarding all of Peyton's issues.