Hospital Life...Day 29

Today is Day 29.  I wrote yesterday's update late and just posted it right before midnight, so if you missed reading that, you can read it HERE.

Today has been yet another challenging day - and it's not over yet!  I thought I would get a quick update out while I'm thinking about it.  The list of items of things going on with Peyton is pretty extensive right now.

Last night, Peyton had a fever.  She was started on a second antibiotic yesterday but the night resident changed it to something else to cover for a possible hospital-acquired pneumonia.  Her chest x-ray didn't really show anything definitive in terms of a pneumonia, but that's not unusual for her - and it doesn't mean it's not a pneumonia.

I probably hadn't even mentioned this, but Peyton was transitioned down on the TPN nutrition and back up on her tube feeds.  She has been back on the tube feeds solely since Sunday.  They ran all the labs to check her nutritional status.  Her potassium should be at 3.5.  It was 2.1.  She had to be given an IV bolus of potassium over 2 hours this morning.  They re-checked that value and it came back as 2.2, so she is currently in the middle of a 4 hour IV bolus of potassium.

I haven't mentioned her hemoglobin lately because it has been holding steady for the past week, I think, in the mid-10s.  Over the weekend it dropped into the 9s and then into the 8s.  They've been monitoring it much more frequently.  This morning it was lower at 8.4.  It was rechecked this afternoon and it is now 7.5, only hours after being checked this morning.  It will be rechecked, but that's "blood transfusion low", so what they will do is recheck again in a little while and go from there.  It is possible Peyton will require another transfusion.

A lot of labs have gone in a poor direction since transitioning back on to tube feeds.  The reason for the transition is because of her pancreatic enzyme insufficiency which was recently discovered.  In order to receive her doses of the enzyme, she needed to be back up on her tube feeds at her goal rate {the rate she came in on from home}.  This enzyme insufficiency is a possible reason for her malabsorption and, therefore, malnutrition.  By giving her the enzyme, she should theoretically be absorbing the nutrients she was not absorbing prior to having to start her on TPN.  With the enzyme, she should theoretically have been able to transition her successfully back on to tube feeds since she would theoretically now be able to absorb everything once again.  This does not seem to be the case.

Pain management is still an issue.  They were going to revise the plan to taper her off the morphine and on to something else to help with some of the side effects of morphine.  One of the side effects is urinary retention.  She had to have a catheter put in every 4-6 hours after yesterday afternoon just so they could drain her bladder.  They decided to go ahead and put a foley in today.  The pain management plan is remaining where it was for now.

Peyton's leg still does not look good.  It is the strangest thing.  The redness gets slightly better and slightly worse.  There is a large bruise that appeared but then 30 minutes later it wasn't really there.  One of the residents is concerned that the reason for the drop in her hemoglobin might be due to a bleed happening in her leg.  An ultrasound has been ordered so they can get yet another look.

The gallium scan that was supposed to happen today {part 3 of the 3 step process} is now happening tomorrow.  Nuclear medicine decided that the gallium injected yesterday really needs to sit in her for 48 hours for it to concentrate in any "hot zones" so they can get the best possible images.  Since there is about an 80% chance of getting definitive answer from the scan in general, I am all for waiting until they feel like they can get the best images.

Right now, we are waiting on ultrasound, additional blood work to be done to check hemoglobin and potassium, and then we'll go from there.  I am sure there's more going on with Peyton than "just" this, so if I think of it, I'll catch you up in the next post.

As always, your prayers are appreciated!

Hospital Life...Day 25

Today is Day 25.  If you missed yesterday's update, you can read it HERE.

There is not much more heartbreaking than watching your child suffer in unbearable pain.  That was what most of today was like.

Let me back up though.

I was woken up by the doctor somewhere around 4:30 this morning.  That nearly did me in.  However, it wasn't what I was thinking it was going to be.  Apparently Peyton, by that point, had not wet a diaper in 12+ hours.  The nurse had already been watching this and they did a bladder scan and discovered she was retaining quite a bit of urine {I think the doctor said about a half liter}.  It's not good to retain, so they decided they were going to do a one-time in and out cath to empty her bladder.  The doctor was letting me know what was going on.  They gathered up their supplies and were just about to start opening packages up when they opened up her diaper to discover that she just peed.  Way to go, Peyton!  She did not have to be cathed, which was wonderful news.  That would not have been pleasant for her at all.

The resident came around just before 8am.  Once again, Peyton's leg looks no better.  She was sleeping, but she started to have this strange movement with her respirations.  We watched that.  He paged the other resident, who came in pretty shortly thereafter.  Meanwhile, Peyton did stir a bit, and when she did she did not appear to be comfortable at all.  When the other resident came in, Peyton was not making that strange movement.  It only lasted a short time anyway, but she hadn't repeated it.  She listened to Peyton and, while she sounded clear, she noted her breaths seemed long/slow.

The team rounded sometime just before noon.  I was, again, invited out to the hall with everyone.  It was quite a large group.  They went over everything system by system as they always do.  It's always interesting to hear what they have to say.  That took quite a while to go through everything.  Once that was done, they came in to the room.  Peyton was awake but having some discomfort which quickly escalated into the worst pain I have ever seen her in {or anyone for that matter - myself included}.  It went on and on.  She was absolutely inconsolable.  One of the big topics of discussion is pain management.  I was glad everyone was in the room to see what she goes through, although this was, by far, worse and longer lasting than anything I'd yet seen.

I was by Peyton's side for the most part but then I had to step back and I just cried.  I hate crying in front of one doctor, but it was everyone.  I just want to fix Peyton.  I want to make it all better for her.  And if I can't, I want to take her place.  And I can't do that either and I just feel so helpless.  It's worse because she cannot communicate in any way at all to let us know where she hurts or to let us know what makes it better...or worse. 

Peyton's physical therapist from the outside world came to visit and she walked in to all of this and I felt so bad that's what she walked in to, but it was so good to have someone in the room who wasn't there in a medical capacity just to stand with me through it.  We glanced at the clock at some point shortly after everyone had cleared out of the room and it was 12:45pm, so between being out in the hall and being in the room, these people were with Peyton the better part of an hour! 

Peyton's continuous Morphine dose has been adjusted upwards.  There are also orders written for "rescue doses" which are doses to be administered if needed for breakthrough pain.  She can get up to 3 in an 8 hour period I believe.  I would say that it was not until about 4pm that her pain was "controlled" to where she was actually sleeping soundly and not having intermittent periods of pain.  While our visitor was here, Peyton did rest some, but she'd stir a little here and there.

So how's the leg you might be wondering??  When the team came in on rounds, her leg was worse.  It was more red.  It appeared more swollen.  An ultrasound was ordered to see if they might be able to see any signs of an abscess.  They did not.  That doesn't mean she doesn't have an infection.  The bone scan will now be happening on Tuesday.

I had another sit-down today with one of the people on Peyton's team to address my concerns.  I am too overwhelmed, tired, emotional, etc. to get into that.  Today was really rough.  I think we have all been pushed far beyond our capacity.  That said, we are still trying to figure this leg thing out but mostly we are trying to keep Peyton comfortable.

If you are reading this and you are a part of Peyton's team {particularly if you happened to be present in the room this morning}, thank you for all of the concern you are showing for Peyton and for us as a family.  I know what it feels like to watch things unfold as her mother.  I know you are doctors and nurses and you don't have the personal investment in Peyton that we do.  But you're not machines either.  I don't know how you manage to remain professional {calm, collected, etc.} in situations like these.  I can't imagine it's easy for you to see a child in so much pain either.  I just want to thank you again for everything you are doing for her.

Praying for a peaceful night for Peyton.

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 7

Earlier today I posted a Day 6 & 7 update which included information on yesterday and the early part of today.  Today has been a busy {and not great} day, so I thought I would go ahead and write a post just in case tomorrow gets to hectic to post anything early on in the day.

I shared with you that Peyton's right leg has been swelling above the splint:

After the doctors rounded this morning, someone came by to do an ultrasound on the top exposed portion of her leg to see if they could see signs of a blood clot.  I haven't heard anything, so my assumption is that they did not.

Because Peyton is retaining so much fluid, the attending felt it would probably be a good idea to get an echocardiogram done to ensure that there is not excessive fluid building up around the heart.

On Sunday Peyton had a renal ultrasound to make sure that her kidneys were ok.  They were slightly enlarged but did not show signs that urine was backing up back into them.

She did receive the albumin infusion today.  I am not sure what, if any, effect it has had on her at this point.  If anyone has any ideas on why this infusion is in the old-timey glass IV bottle, please let me know.  We're all curious!

The swelling in the picture at the top is mild compared to how it became as the day wore on.  It became increasingly puffy.  The swelling migrated towards the groin area as well as around the back.  In addition, the redness was moving up towards her hip in one area.  It was warm to the touch also.  The nurse, at my suggestion, marked the redness with a pen so we could see if it was spreading.

Peyton was just so incredibly uncomfortable today, so they decided to move her from the crib into a regular bed.  It's well padded, so there's no risk of her falling out.  It's bigger so there's more room for all the extra pillows and blankets that are being used to prop her in different positions in the efforts to redistribute the fluid that is pooling.  It's also a lot more comfortable for her.

That said, it was pretty obvious that Peyton's room was too small to accommodate a regular sized bed, so the nurses put together a plan to relocate her to a larger room.  A patient was discharged, the room cleaned, and Peyton was moved in to her new space this afternoon.  I must say that next time we wind up in this unit I'm going to have to put in a special request for this "suite"!!

What you see in the above picture is probably only about half of the room!!  This room is huge.  Honestly, it has no additional amenities than the previous room except that it has more space to spread out.  It's got the same couch.  I think it's a bit of a storage spot for additional chairs, so we have 3 guest chairs in here instead of the usual 1.  And I've only just noticed that there are no creepy sea creatures on the walls of this room!!  That's ok.  It's a corner room and two walls are pretty much solid windows so it's got the best view.  Much more comfortable in this room!!

There are probably multiple reasons why this swelling could be happening, but we have to be very careful with Peyton so that we are making sure that we do the right thing for her.  As of right now, I still don't have a final answer as to why this is happening.  One of the times a doctor was called in, they decided to call for Ortho to come and look at it.  The feeling is not that the swelling is related specifically to the fracture.  However, if the splint would need to be removed, then we need Ortho involved.  The same doctor who put the splint on was the one who came up to see her.  He did not feel that the swelling was bone-related.  He did, however, cut a section of the top of the splint about two inches down to create a split to allow for more "breathing room" for the swelling.  If I were to have taken a picture a little while ago, you'd probably say that the swelling has gone down significantly.  I would have to say that the split in the splint probably just allowed for the swelling to shift and redistribute to other areas.

Peyton did not have a good day.  She just had a rough day.  She was pretty sleepy but also very irritable when she was awake.  She's not comfortable in terms of just dealing with that swelling.  She's not herself.  She's gone downhill and we don't know what's at the root of it.  I'm sure everyone here would love to have answers, but they just aren't coming.  It seems like there were some little improvements, but then there are other things that are worse.  I don't know.  This is just so difficult.

Still At The Hospital

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

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

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

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

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

You can read more on all this over here:

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

How Our Weekend Went

What...a....weekend.

Saturday morning was all about the Race For The Cure.  We actually got out as a family.

We got home from the race around 11:00am.  The nurse arrived at noon.  When she arrives, she does a routine assessment.  She found that what appeared to be a diaper rash starting on Friday now appeared to be a couple of abscesses.  They were dark and pretty hard around the area.  She was also pretty red and inflamed.  Her temp was about 99.3.  Ron, the nurse and I debated bringing her to the ER.  We decided ultimately that if there was even a question that we might, then we might as well go now.  So we did.  

Peyton was seen right away in the ER.  The doctor felt that the abscesses, while definitely present, were still relatively small.  She said that if they were to drain them, they'd have to sedate her.  First, she's allergic to Versed, which is what they'd typically use.  Second, with all her health conditions, she's not one you just jump into sedation without a really good reason.  We got an antibiotic and were sent home.  The doctor said she would be in on Sunday as well and to come back if we felt like things weren't improving.

On Sunday morning, I woke up and saw that Peyton's pulse ox monitor was displaying a heart rate of 173!!!  She's normally around 105 or so first thing in the morning.  I get concerned when it's creeping up in the high 120s.  I took her temp - 102.3.  I woke Ron up and told him to get ready.  He immediately thought it was the abscesses but I said no, it's the heart rate and temp.  The abscesses too, though - they were far worse.  The swelling had increased tremendously and the area that was hard had expanded.  I wasn't sure if the other issues were symptoms of the infection or if we had a potential respiratory issue going on as well because she's had some increased secretions lately which were also yellowish.

Back down to the ER we went around 7:00am.  Again, we were seen right away.  The resident said the abscesses would have to be drained.  She had to discuss with the attending since there was the whole sedation issue.  They ultimately decided to give her morphine and to use a numbing patch over the area.  Then they would incise and drain.  Eventually, they began the procedure.  Poor Peyton was such a little trooper.  My heart goes out to her for all she endures!  She had to have 4 or 5 shots of lidocaine in the area first.  Diaper area, people.  OUCH!!!  I watched the procedure and I watched her.  She was not happy and I don't blame her one bit.

Suddenly I started to feel a little light-headed.  There was a chair right at the bedside, so I sat and continued to comfort Peyton.  The nurse was on the other side of the bed opposite me.  She asked if I was ok.  I told her how I was feeling.  The feeling continued.  I got a little nauseous.  The doctor said "Mom looks pale."  Then the nurse told me I should transfer to the recliner type chair that was beside the one I was in.  I did that while she got a cool wet towel to put on my forehead.  She also paged for some gatorade STAT.  When that came, I was feeling a bit more nauseous.  She gave me some bags just in case.  I took a few sips of gatorade.

Not sure how much longer it was, but I vaguely recollect opening my eyes slightly to see my left foot propped on a chair.  I no longer had the gatorade in my hand and the towel was gone.  How odd, I remember thinking.  I remember my face twitching.  Then I remember faint noises all around me.  I remember hearing "She's turning blue."  I remember the surroundings as being dark and fuzzy.  Don't know how to describe how I felt aside from that.  When I opened my eyes slightly, the EMT (who was doing a peds ER rotation) was on my left.  I heard loud beeping on my right.  I was lying on the floor.  I remember people pushing Peyton's stretcher aside as they continued working on her.  The EMT, in his lovely British accent, asked me if I could open my eyes.  I did.  He asked if I was diabetic.  I am not.  They did a finger stick and checked my glucose level.  It was fine.  I had an oxygen mask on my face.  The EMT asked if I knew what day it was.  Sunday.  He asked if I knew what month it was.  I kind of laughed (as much as a recently unconscious person can) like it was a silly question, but I actually had to think about it for a few seconds.  My inclination for some reason was to say December.  I did settle on October.  He said he would skip the other silly questions for now.  Then they began discussing how to get me onto a stretcher.  Eventually I was moved onto one and off I went to the adult ER!

Long story short, I had a vasovagal reaction (a sudden drop in blood pressure) which they think could have been a combination of me not having eaten much and then the sight of the procedure Peyton was having.  I don't get that because it wasn't bothering me!!  Then I had a syncopic episode (fainting).  Then I had a couple little seizures (the twitching I vaguely remember).  They did and EKG, bloodwork and urine test.  Of all that, all that came back was that I had a mild urinary tract infection!  Who knew.  It took me passing out to find that out!  I am sure that was not the cause of my "episode".  They ordered me a food tray.  I ate what looked edible and it was good.  Yes, hospital food was good.  I think I was too hungry to care.  I am fine.  I am tired.  I feel stupid.

Now...while all of this was going on with me, Ron was not with me at the hospital.  Peyton was on her own!  They had someone from Child Life sit with her while she waited in the ER to be admitted.  I was able to text Ron and he came back to the hospital after church.  Apparently I missed the incident at church where a burning bag of popcorn caused the entire building to be evacuated!  Had Peyton been well, she would have been there...in her wheelchair...with no elevator to get her back down to the 1st floor (the special needs ministry is on the 2nd floor).  Wonder how that would've worked out.  The evacuation didn't last long - and the service did actually proceed.

Back at the hospital...Peyton was admitted.  They set up her crib in a spot that would be easy to see from the nurse's station since no one was here with her.  Poor kid!!  When I eventually got up to her room, the resident and med student were in.  I saw the abscess area.  The incision has been packed and the area covered.  It was looking significantly better at that time.  They cultured the drainage.  Waiting for results.  It could be staph or MRSA.  They said it's mostly likely MRSA.

As of Sunday evening. the redness and inflammation is as bad as ever - worse even.  At this time, we're waiting on an ultrasound.  The doctor said it's possible there is another pocket of infection.  They're going to talk to peds surgery to have them come take a look.

For now, we're in the hospital (well, Peyton is admitted...I'm just with her!) and hopefully things will start improving soon!  We appreciate your love and prayers!

Cardiology

I mentioned yesterday that Peyton was to have her Cardiology appointment today.  She did, so here's a quick update on that.

Peyton had a 12:00 appointment with Cardiology.  When we arrived, the nurse said Peyton would be having an EKG and cardiac ultrasound and then we'd be seeing the doctor.  The EKG was fairly quick.  The ultrasound was 30+ minutes.  The room where the ultrasound was was like an oven.  I thought we would perish before we were through!  After that, it was back to the waiting room.

I'm not sure what happened while we were out doing the tests, but the population in the waiting area exploded and it was hard to find a seat!  We were sitting down a little before 1:00.  We were taken back and were seeing the doctor sometime just before 3:00.  UGH!  Once we were back there, things moved along quickly.

The resident came in first and then the attending.  Both assured us that Peyton's heart is not an area that we need to have immediate concern over.  She does have a murmur and a mitral valve prolapse as discovered before.  However, they are not to the extent of needing medication or other intervention.  Peyton's severe sleep apnea and having had over a year of continuous respiratory issues hasn't helped her, but she's not in any distress or having any acute problems.  For now, the Cardiologist would like to monitor her heart - see her back in a year.  He's not keen on the idea of putting her on any meds at this point in time.  She doesn't need them at this stage and she's already got so much other stuff going on that adding another med might cause more trouble than it is intended to solve!

So, it was a good appointment.  I like when that happens.  Praise God for a mostly-healthy heart!!