The never-ending dressing

Saturday at 5pm, we hit the 72 hour mark of no growth on the blood cultures that were taken at the hospital.  At that point, they considered the original positive to be just a contaminant and they were ready to send us home. 

The problem was the skin around the PICC site.  You see, the TPN (fluid he is fed in his veins) had been slowly leaking and caused a chemical burn on his skin.  The area was about 3.5X4.5 inches.  And skin that is that raw and inflamed can easily become infected or get cellulitis.  If that happens, that is BAD NEWS since it is right at the opening in his arm that leads directly to his heart. 

Signs of infection are redness, swelling, tenderness, warmth, oozing ... uh ... he had them ALL.  So I was quite concerned.  On a regular kid, they would have yanked that PICC line and given him another one.  But they didn't because they're trying to save veins.  THIS is what told me the extent to which they're willing to go to save a vein.  And that spoke volumes. 

Now the next problem became the adhesive.  They don't want a huge area of adhesive (so that the skin can heal while not under the dressing).  And adhesive doesn't stick too well when it's wet.  Well, Manny's arm is weeping and draining from the sores so it's constantly wet.  They had to change the dressing Friday night, Saturday morning and Saturday afternoon.  Then Saturday night they just reinforced it.  (Usually it's changed once a week.) 

We got home late Saturday night and it was already needing more reinforcement. 

Sunday we went to the park and had a wonderful time!  It was so great to be outside again.  The weather was perfect and we could just live out side.  (I keep long sleeves on him right now to minimize anything possibly getting in the dressing.) 

Monday morning, it was clear that the dressing needed to be changed ASAP as it was now pulled back and the PICC site was no longer sterile ... that means germs can get in and we run the risk of infection.  Nurse drew labs and changed the site.  She was horrified by how it looked, afterall, she'd been there just last Monday to do the dressing and it was perfect.  It was quite shocking how bad it got so quickly. 

This morning, I woke up and looked over at him and was just in awe of this little guy.  He was just sleeping so peacefully that I had to snap a picture.

Of course it woke him up and the next picture is his immediate reaction.  THIS is how he wakes up every morning.  Bright eyes. 

Tuesday morning, it was pulled quite a bit off again and I reinforced it.  Went to Manny's pediatrician and she thought he looked great (except the arm of course).  We talked about when to call "Uncle" on the arm. 

By 4pm, the dressing needed even MORE reinforcement and I knew this was't good.  At 6pm, I took off his shirt to change him into PJs and the whole bandage had rolled up!  The sutures were coming off, there was basically nothing covering the PICC site and I could just feel the germs getting in.  (Not really.)  I called the home health on call nurse and told her what was going on.  She came over immediately and changed the dressing for us.  Problem is - we had to use a HUGE dressing just to see if we can get the dressing to last more than a day.  But that means the arm will have a hard time healing. 

Also today, Manny started retching horribly.  He used to do that all the time.  But since he's been on TPN, he stopped completely.  It was a miracle!  The only time he's retched since October was during December when he was on mega doses of antibiotics and antifungals.  Even then, he only did it a few times and it was relatively mild. 

But this is different.  This is like he's sick and dry heaving.  I've not seen this type of retching with him before.  Very concerning though because he does this quietly. You can't hear him at all, he just stops breathing.  Then he aspirates and then there is that whole chicken/egg thing.  It's scary to watch him try to breathe. 

After it's over he says, "I OK.  I was choking."

And the last concern for the night?  He's got a fever 99.3  ...  At 100.4 I have to go to the hospital and be admitted.  Period.  End of story. 

Normally, we can wait up to maybe 12-24 hours of a fever before we have to go in for blood work, but given he has this huge arm infection, and he already has all the bad signs of possible infection on his arm, we have to go in.  I guess I could say that we're ALREADY in the gray area, if he gets a fever, it's no longer gray ... it's black. 

So ... as you can see ... we still need tons of prayers. 

Blood Culture Negative!

I will try to recount the day.  (Much is medically complex.) 

Manny slept well.  The nurse got the hint. (Yay).

The day nurse today was one we'd had before and let's just say that by the end of the day, she'd shared some pretty personal information.  I got to bless her, speak into her life, hug her, comfort her. 

The Infectious Diseases doc came in and was pretty certain that this blood culture was either a contaminant or a transient infection.  The second set of cultures drawn were NOT positive!  (Yay)  This is incredibly great news. 

He suggested a plan ... and the plan made sense, but didn't take into account the whole overall situation.  So we took his plan under advisement but knew that Cartaya would have his own say about the whole thing. 

Finally Cartaya came in and he and I talked for quite a while about the pros and cons, the risks/benefits of all the options we have.  Eventually the head of the IV team (Stephanie) came in and she was in on the conversation. 

The bottom line is ... Manny's situation is unique.  To treat him, you have to deal with a lot of "gray" areas.  We all basically make this up as we go.  And today was no different. 

By the end, we settled on a very strange solution.  I'll try to explain. 

In most cases, the right thing to do would have been to pull the PICC line and put in a broviac.  (That was the Infectious Diseases doc's suggestion.)  But for Manny, there is a real possibility that he could run out of veins.  And THEN what?  So we have to protect every vein like it's gold.  We can't just go pulling lines. 

So ... since this line wasn't infected, we could still use that vein.  BUT, since the line was out of place, it had to be repositioned.  To do that, you have to go in and rewire it.  Basically, they put a wire in where the current line is, pull the old line out and the reinsert a whole new PICC line.  So it's a clean, new line but in the same vein. 

Now to the next problem .. his HORRIBLE skin rash (allergic reaction to the dressing/bandages).  There is even some skin break down where there is the clamp (stat lock) that holds the line in place (making sure it doesn't go in or out).  This arm is a MESS.  (It wasn't.) 

So we decided to suture the PICC line in place instead of using a stat lock.  This is basically unheard of.  But it's what we needed to give the arm some much needed break from the stat lock. 

It worked!  Dan and the kids arrived just as we were headed down to the procedure so they waited with me in the waiting room. 

When we got back to the room, we noticed that his bandage was completely pulled away from the site and his whole PICC line was completely exposed (A MAJOR MAJOR problem and a potential source of infection .. this field is supposed to stay completely sterile).  The nurse immediately put tegaderm on it to help until Stephanie could arrive. 

Once she got here, we noticed there was some leakage around the PICC site.  (Not good news ... could mean that there is a compromise in the PICC line.)  The whole bandage had to be changed ... which involves an alcohol based cleaning solution.  Imagine THAT on open wounds about 3 inches by 4 inches wide!  (Poor baby).   Something we have to keep an eye on.  If it keeps leaking, the PICC will have to be removed. 

About 8pm he fell asleep.  We're putting oxygen directly on his arm to try to keep it dry and see if the parts that are exposed can start to heal.  We have to keep an eye on this too. If the skin doesn't heal, we have to remove the PICC. 

Finally, there is one spot that looks like it MIGHT be phlebitis.  (But it also could just be rash.)  It's possible that the old PICC had curled around and was sending the TPN back up the vein.  (There was a lot of biofilm on the PICC ... and when there is that, it sometimes does that.)  It's complicated ... but the bottom line is - we have to keep an eye on this as well.  If it's phlebitis, we have to remove the PICC. 

So as you see, there's a lot of great news ... but also a lot of things we have to keep our eye on. 

If all these are under control tomorrow, we go home!

And we wait

So can you PLEASE tell me ... why in the world did the night nurse feel the need to wake me up to tell me the meds were given?  I don't mean she was loud (which she was).  I mean, she walked over to my side of the bed, grabbed my arm (to which I would startle) and say, "I gave him his X med".  In my sleepy stooper, I didn't even THINK she would do it for each of his middle of the night meds and problems with his pump. 

But.She.Did.

Must work on new strategy for tonight.

Other than that, it was a fairly uneventful night.  Manny's fever went away. 

This morning, labs are starting to come in.  There's no indication of anything horrible ... but there wasn't last time initially either.  So nothing helpful yet. 

There is an interesting thing going on ... Manny's PICC is "acting up".  It flushes fine.  And the fluids are running just fine through it (mostly).  But periodically, there's an error where nothing will go through.  Makes me think that the PICC is slightly out of place or something.  And then sure enough, the report from the chest xray taken last night just arrived and confirmed what I suspected.  It's out of place.  Not horribly, but will need to be adjusted likely today.  (That's not a huge deal, not much more than a dressing change, which he already does once a week.  He doesn't like it but it's not super painful or something.) 

And we wait. 

7pm ... the day was fairly uneventful.  Infectious Diseases doc came by and was still distressed that there was no new news on the blood culture done on Monday evening.  So after he left, I called my contact directly.  He said he'd call me the moment there was news.  And he did ... about 2 hours later.  It came back with "Gram positive bacillus".  So you know how yesterday I said it was like asking what you ate and you responded with "food"?  Well this is like saying, "Warm food" ... still not very helpful. 

In almost all cases where Bascillus is found, it is considered just a contaminant.  They almost always rule it out as such immediately.  UNLESS a child has a central line.  Throw in that he has a low grade fever intermittently and pain at the PICC site and they have to do the complete work up.  One doc wants to pull the line NOW.  The other says not to.  We're in some gray area, clearly.  Both agreed, however, to start immediate, aggressive treatment just in case. 

I understand that your past reactions to being septic determine your next time.  And as we all know, he didn't do very well.  It's one of the reasons they ask things like if you've ever had a blood transfusion or on a vent or been resusiciated, etc.  (All of which is YES.)  So they have to treat this as if it is real until there is verification of a negative blood culture.

Doc came in and I pressed him until he said basically it's 50/50 if this is a real infection (i.e. similar to last time) or a "nothing" thing. 

So the scenarios ... if this comes back positive, we should know by Friday afternoon ... that's how quicky the other one came back positive.  If we pass that time, we aren't exactly in the clear but we can start to breathe a sigh of relief.  Tomorrow is a key time for us. 

Now, the chest xray was done to see if his PICC was in place.  It is not.  It's not horribly out of place.  It's still usable.  But it's short of where it should be.  It also has a kink in the arm portion of it.  This is likely his source of intermittent pain he's been complaining about. 

So the IV team came to see if she could adjust it.  She can't push it back in further into place, but she could adjust the kink.  I'm so glad she did because when we took off the bandages (some are clear and some you can't see through), there was a LOT of skin rash ... almost the entire area had bright red raised bumps.  And there was some skin breakdown under the statlock.  So she cleaned it, let it air, used a new type of dressing and moved the location of the statlock.  I think it will help BUT there's still a lot of rash in the area. 

Doc and I have decided a few things in our plan of care for Manny.  1)  We will not be doing a broviac any time soon.  Because IF this is seemingly negative, we treat it as such and put in this more permanent line and it turns out to be something afterall, we are right back where we started in early December and we ALL want to avoid that!   2)  I do NOT want to go home with this PICC line in.  Due to it being slightly out of place and the huge amount of rash/skin breakdown in the area, we would be playing with fire to do that.  3) Therefore, we know we will be putting in a new PICC. 

What we DON'T know is when that will be.  But if nothing grows in his latest culture by say Saturday afternoon, that will be our cue that this was most likely a fluke and it's "nothing".  We can then pull the line and put in a new one.  They don't do PICCs on the weekend usually so Monday is likely our day. 

And all this changes if something grows on that culture. 

Holding our breath.

How are we holding up?  As well as can be expected.  This part of our lives have become "routine".  We have procedures in place for everything to what to pack, what groceries to have at home, toys/movies for Manny, who does what role, back up meal providers, etc etc.  We have this all too practiced.  Makes for a smooth transition in and out of our hospital life and real life.

11pm, about to head to bed.  It's the same nurse from last night so I guess I'm supposed to learn to deal directly with people.  Not too passive, not to aggressive, but "just right" (Like Baby Bear) and be appropriately assertive.  So I say to her basically, thanks for letting me know when you gave the meds last night, but that's really not necessary and that I trust her to give them accurately and appropriately.  But if she needs my help in any way, if there's a change in status for Manny, to please feel free to wake me up.  I have no clue how she actually took it but she seemed to get the message.  I'll know about 1am (when the first night med is due). 

Hey ... Does everyone feel like they're getting an honorary medical degree by reading this blog? 

You gotta be kidding me

Every day you wake up, you truly have no clue what the day is going to bring. 

Today?  Well, the plan was to go to the grocery store.  Go to the Surgeon's office for a preop for his broviac placement tomorrow.  (Why?  It's been a month since Manny's PICC was placed and he started having a little pain near the site so we decided it was time to pull the line and place the broviac.  But before we could do that, the Infectious Diseases docs (being extra cautious) wanted us to do a blood culture.  Just to be safe.  Monday the labs were drawn for that.) 

So I head to Walmart and get a voicemail. 

"Manny's blood culture was positive.  Please call." 

You gotta be kidding me!  I knew what this meant. 

And at that moment in time, I knew that our day had just been derailed.  I kept going back and forth between shock, denial and anger.  For the next 2 hours, I shopped at Walmart (wasn't going to leave the family with nothing to eat), then packed for the hospital and arranged for hospital plans. 

Before I knew it, I was walking in the door and being greeted by the very people I just talked to on Friday.  The same place I'd just delivered candy last week.  

The transition is so smooth now for admission.  Everything is in the computer.  The right people know what to do and how to do it.  He has an "action plan" in place. 

And Manny was hilarious!  He was greeting everyone.  Saying their names.  Being a real joker.  I worried that he would freak out ... but he has (sadly) adjusted to his new reality that we live in the hospital OFTEN. 

We have no clue how long we will be here but there's a CHANCE this won't be long.  There's a CHANCE that it was a false positive and it's just a contaminant.  The lab that took the blood only reported "Bacillus" ... which is very very non-specific!  It's not helpful in fact at all.  It could be "nothing" and if that's the case, we'd be out of here over the weekend even maybe or early next week. (Depends on if they want to replace the PICC or a broviac.)  Or it could be a true infection and we're here for the long haul again. 

How will we know?  They took more blood today.  One set of cultures from his PICC line and one from a peripheral site.  It takes time to grow this.  But we should know by Friday (probably) if this was just a false alarm. 

I don't think I've ever prayed for carelessness before.  But seriously, that's basically what we're hoping for.  We're hoping that the nurse that collected it was careless.  Or the lab who ran the blood tests ... maybe someone there was careless.  (But trust me, that doesn't give me the warm fuzzies either ... but I will cross that bridge when I get there.) 

Since it's been almost a month (We were discharged Dec 28 and today is Jan 25), and he has not been sick, his veins are fairly healthy.  They were able to get the IV in on the first stick (that never happens).  I'm thankful! 

So tonight, I sit in room 222 ... next door to the room we were in last time. (that was 221).  Things have gone as smoothly as they possibly can.  It's sad that they have a protocol JUST for Manny.  But I am also thankful for it. And I'm saddened and thankful that Manny thinks of this as "normal".  We both just fell right back in our spot, picking up where we left off, surrounded by friends. 

And I'm wondering what I'm supposed to do with our time here.  Maybe I'm supposed to "redeem" the time in some kind of special way.  I'm praying for specific direction on that. 

8pm, walked out of my room for the first time.  Went down the hallway to the linen storage cabinet.  Mindlessly walked back to my room and opened the door.  I was SHOCKED to see it stuffed full of people I didn't recognize.  Took me a second to realize, I walked in to room 221 out of sheer habit.  I profusely appologized (they were all Hispanic and I'm pretty sure they only spoke Spanish so I think they were a bit confused about who I was!).   I then walked to the right room (next door) and started devising a plan of how to make sure I don't do that again! :) 

9pm ... my hopes of this just being a contaminant are fading slowly ... we have a fever.  Doesn't prove anything, just that this might be real.  (ugh)

Business as usual

Oh my ... just realized it's been 2 weeks and I've not updated.  Well, you'll be happy to know that's because we've been busy living life. 

After the marathon hospital stay, the scare with the fever, the borderline pneumonia, my broken (and now fixed) tooth, a personal health issue (still unresolved), the stomach bug creeping through the family members (Manny currently has it) ... well, let's just say life is "back to normal". 

Manny's PICC line was put in on Dec 23 so we're about to hit that month mark.  Some docs will change it out at a month but for him, we're planning to let it go as long as it can.  So far, so good. 

Today, we went to meet with the Motion Analysis Center (associated with the Muscular Dystrophy Clinic).  They are working on getting us a power chair.  That is not as easy as it sounds.  See, when a chair was first ordered for Manny, he was under hospice care and that did not qualify him for a power chair.  Nor did they think he'd ever be able to manage it.  But ... things changed with his proper diagnosis.  We have had his wheelchair for a year (and we LOVE LOVE it) but insurance won't pay for another chair for at least 2 more years. 

They gave us a loaner a while back to see if he could even physically do a power chair.  He was AWESOME at it.  He was sick as a dog during that time too and still he could master it.   Today, after not seeing the chair for almost 2 months, he was getting around everywhere in that chair.  He even mastered the 3 point turn (never shown how to do that, just figured it out on his own) and even parallel parking!  He's a natural for sure. 

So ... do we wait for the 2 years to get a power chair?  Or they had another option ... they could try to do used parts and we could self pay.  It would still be $2000-3000 roughly (which is high for us considering we're both self employed and I've been in the hospital for the past 4 months and Dan has been playing Mommy and Daddy roles).  We might be able to fundraise for it.  We might be able to get a donor for it.  We could also wait for insurance to come through.  We haven't decided yet.

While at the hospital, I decided to visit some of the floors and people we always see at the hospital. (I bought bags and bags of chocolate candy.)  I wanted them to see Manny when he is healthy, happy, full of life and feeling good.  We got to see basically everyone.  Each one had that, "OH NO" look on their faces as we walked in (thinking we were back admitted) so I would quickly say, "Just here for a visit."  And hand them the candy. 

Remember how I was asked to write up something about some of the mishaps we'd experienced in the hospital and I gave it to the nurse managers?  Well, apparently, there was a staff meeting on several of the floors about this letter.  I cringed when I heard this!  But apparently it was well received, was taken as good feedback and not complaining.  (Phew!) 

Since this whole experience, I've had TONS of ideas.  I want to put together a book or manual or articles or something about how to survive the hospital.  In my spare time, I'll get right on that!  (But I think it would be helpful.)  We'll see if I ever get around to it. 

In the meantime though, you know how I wrote a book about Cleft Lip and Palate?  Not because I wanted to write a book, but because I couldn't find one about it.  Well, I went looking for one for Manny about Muscular Dystrophy or Neuromuscular Disorders.  And guess what?  I could find ONE.  It's many years old and is about a boy with his dog and how they get through a day together.  Fine book.  Just not what I'm looking for.  I want a book to explain to Manny, to the kids, to the kids' school, to neighbors, etc what Manny has and what he deals with medically, socially, emotionally, etc.  And it just doesn't exist.  I contacted the MDA and they have 3 booklets for kids... she brought them to me today in our meeting to see them.  They're fine.  Still not what I'm talking about.  How are there only 3 booklets and one book about this subject that can be found? (Disclaimer:  I'm sure there are more somewhere, I just cannot find them.) 

So guess what that means?  That's right ... soon there will be a book featuring Manny and Muscular Dystrophy.  What's cool is the local MDA service coordinator is very excited about this project and is offering to help us get the word out.  Now I just have to pull it all together.  (Again, in my spare time.) 

Now changing subjects to Kaley ... I last mentioned that she was having some follow up tests to some "funky" test results.  The good news is, 2 of the tests came back just fine.  (Relief).  And there was only one thing still "off".  The recommendation is that she go see a GI doc.  (I happen to know a few with all this mess with Manny's story.)  I will keep you updated on that as we get the results. 

Finally, Manny is going to the NIH in Bethesda, MD.  They are "THE" premiere diagnostic people for Neuromuscular Disorders.  We're scheduled to be seen on Feb 13.  And while there, we're going to do some lobbying/advocacy for Cure CMD.  I'll be giving a speech at the Social Security Administration and the National Offices of Rare Diseases.  So... Manny Goes to Washington! 

So like I was saying ... nothing going on around here.  Just business as usual.  :)  

It's been a week

We have been home for a week now and life is ... busy. 

Basically Thursday and Friday were about doing some normal family bonding time things.  We spent the days opening presents people had sent, reading the cards, playing the new Wii games, etc. 

Saturday, Manny had a fever.  It came and went over a few hours.  Sunday afternoon, the fever was back.  But this time it stuck around.  No other symptoms and I know this is a bad sign.  I decide to wait 24 hours and see if it gets worse/better.  No change. 

Monday we headed to the ER.  After numerous hours there, Dr. Cartaya (the Hospitalist I mention over and over) wanted us admitted and started on IV antibiotics.  He told the ER doc that and then went home for the evening.  But by the time the staff could see us, it was a new ER doc who had not gotten that message.  He reviewed the initial labs and sent us home saying it was likely a cold or flu or viral thing.  (Does that sound familiar?  If so, it's what the hospital told us on Dec 1 before calling us back in on Dec 2 with a positive blood culture.) 

But I wasn't going to argue.  I went home and slept in my bed.  And nervously awaited the results. 

By Tuesday morning, he had some new symptoms.  This assured me that (likely) he did have something viral and was not septic (again).  Late wednesday night, one of my friends from the hospital looked up his blood culture and called me saying it was still negative!  Yippee.  (phew)  Strange to feel soooo happy to "just" have the flu. 

The next problem was that Tuesday and Wednesday, we were struggling to keep this cold from becoming pneumonia.  He's on meds, etc.  But his muscles are just so weak that it's difficult for him to clear his secretions/cough.  It just kinda hangs out and can fester.  We have tons of machines and meds to help with that.  So far, so good.  I know the signs of respiratory distress and even have machines to monitor it.  And he's managing. 

Thursday, went to the Primary and she agreed, no need to go to the hospital unless he gets worse.  (phew!)  I can tell you, I literally had my bag still packed for the hospital and in the trunk.  Tonight, I got it out!  (Still packed, but in the house now... that's improvement.) 

And where do we stand with his feeding?  For now, he is still eating via the PICC line ... the vein in his arm.  The plan is to keep him on that line until the line stops working.  At that point, we will go into the hospital, have it removed, do a blood culture.  Wait 3 days and then do the Broviac (the more permanent line in the chest).  The 3 days of waiting is to make SURE there is no line infection this time when we put in the more stable line.  So we know there will be a hospital stay and surgery in the near future, we just don't know when.  Some PICC lines work for weeks, some for months.  It's just a wait and see so we can spare as many veins as we can for him. 

And I've contacted Shands in Gainesville's GI team again.  They are still stumped with no new ideas about tests to do, etc. for getting him back to enteral feedings.  Ugh. 

Meanwhile, during this week, I'm having a personal health challenge.  (And no, I still haven't gotten to the dentist ... working on it.)  Because it's of a "personal" nature, I'll just leave it vague and ask for prayers.  I could use a healing from the complications and the pain.  I do not have health insurance and really do not like the options of the medical way of treating it.  But I do need to be able to be healthy enough for my family.  They are counting on me. 

And the last piece of news for this blog ... while at the doctor's office today for Manny, I asked the primary about Kaley's blood tests.  You see, she has a policy of running some basic labs for the 12 year old check up.  (Incidentally, that's how we got Jacob's diagnosis last year at his 12 year old check up.)  I figured she would have called me if anything was wrong ... but it turned out, there was something wrong with the bloodwork, it just wasn't an emergency and the doc figured a few weeks wouldn't change her outcome. 

So ... we're not exactly sure what is going on yet but there were some concerning labs.  She gave me the script for more specific tests and we'll be doing those over the next few weeks.  I hesitate to share the thoughts at this point until we have more info.  But suffice to say, she needs prayers too! 

And that brings me to my emotional state.  I'm in over my head.  You know the stages of grief and loss?  Well, I vascilate between denial and anger.  I'm so stinking upset.  I believe in a God who is full of healings and physical manifestations of that still occurring today.  I've SEEEEN it!  So what is this?  I'm not the paranoid type, yet it seems like an attack on our family.  I'ts nuts.  And I don't like it.  I'm not angry at God, exactly.  I'm angry at the whole situation and the "here we go again" feeling. 

Sure ... you could tell me that we knew this.  Or we signed up for this.  Uh, no we didn't.  When we adopted Jacob, we knew he was on the autistic spectrum.  We knew he'd been exposed to drugs.  We had no clue that 12 years later, his kidneys would start to fail.  etc etc .  And it's no different that a person who births a child, raises them for say 17 years and then finds out they are a drug addict or has some kind of brain tumor.  They didn't know that either. 

Being a parent (whether it's via birth or adoption) is hard.  We sign a blank check.  We deal with what comes.  And I'm just saying ... that in my life right now, it's all coming at me pretty quickly and I'm getting knocked over by the waves.  I still know God is good and God is in charge.  I would just like to be able to stand up and catch a breath before the next wave hits.  (But that's not happening.)

So ... if you're wondering how we're doing ... we can still use all the prayers you've got.