Oct 23, 2012

Anemia and beyond

Anemia … the continuing saga. 

I will try to summarize as succinctly as possible this quite complex medical issue Manny has going. 

Last October he went on TPN.  December he got very ill, went into septic shock and had to have his first blood transfusions.  February he got very ill with the gallbladder that died and was leaking and had to have his next set of transfusions.

In May his iron levels we so low they ended up giving him another set of transfusions along with his first set of IV iron. 

So if you’re doing the math, that’s every 2-3 months that he’s needing it. 

October of this year his hemoglobin and all the red blood cells are starting to tank again.  He’s not symptomatic (yet) but we’re close to where he became symptomatic in May.  Rather than waiting until he crashes like they did in May, I asked if we could do a preemptive strike.  They gave him two days of IV iron on Thursday and Friday.  (It's the first time we've given iron only and not a transfusion too.  A good experiment to see

So … Monday iron low.
Thursday, Friday … IV iron given
Monday … iron even lower than last week. 

Now the mystery part comes in.  What the heck is going on? 

Possibilities include:  Not enough iron given.  Not the right type of iron given. He may need the actual blood components and not just the iron.  He may not have iron deficiency but instead something like hemolytic anemia.  Or he might have iron deficiency anemia PLUS something else.  He also might have something called Anemia of Chronic Diseases on top of other conditions. 

Bottom line:  This isn’t working and I am glad I have a Hematologist on the case!  We need to get this straightened out soon!  Last time he was this low … he had about 1 week before he crashed. 

Meanwhile, his White Blood Cells (infection fighters) are very very low.  In other words “Sitting Duck”. 

Now at the exact same moment in time, I have several kids who are sick in the house.  We just keep getting hit with one thing after another. I even hired someone to come clean/sterilize the germs!  And I have now bought stock in Lysol wipes it seems! 

Dan got what we thought was allergies 2 weeks ago and then it settled in his lungs.  It was almost a week and a half before any one else had symptoms so we were hopeful.  Then Sam.  Luke.  Kaley.  Same order of events … sore throat, then low grade fever followed by a horrible cough that’s deep in the chest. 

So imagine my horror when yesterday Manny said, “Ow, my neck!”  I asked him to point to where it hurt and he pointed to his throat!  Noooo!  And tonight?  Temp is 100.4

According to our old criteria we’d already have to go in.  But I got a bit of leeway from Doc.  He and I agreed on a new set of rules.  We do an automatic admission to the hospital if:  100.4 for 12 hours or more; if he’s acting sick and has 100.4 even once; or one time of 101 or above. 

So tonight I took his temp and it’s 100.4.  If it goes up over night we have to go in.  If it’s still up in the morning, I will call for a room. 

Meanwhile, as I did his bedtime routine, I felt his neck and there are swollen lymph nodes.  I looked in the back of the throat and it’s definitely swollen and red.  Nothing that looks like strep … but it could be.  The back of the throat is also pooling with saliva like he’s not wanting to swallow.  Having to do lots of extra suctioning.  So … either way we will be headed to either the Primary in the morning or the hospital (depending on the temperature). 

And finally for the news of the day … we went to the GI today.  I was very prepared with all sorts of labs, charts, summaries, questions, etc. All neatly organized and typed out.  I was able to present the history, current situation and concerns/questions very thoroughly to the ARNP and she gave the summary version to the Doctor.  (I am happy with that system as the ARNPs are the main ones we end up dealing with anyway.)

Bottom line … we will start on a new formula (one we haven’t tried before) at 10cc’s per hour.  We will return in 2 weeks with the verdict.  No adjusting it higher/faster until then but we are allowed to stop it if it doesn’t go well.  So … I’m good with the plan. 


Oct 21, 2012

Dressing Changes

Last week, I did a post about TPN and the supplies and what goes into connecting and disconnecting Manny daily. 

Well another activity I do is Dressing Changes.  This is done weekly typically unless it's needed to be done more frequently. 

First thing you need to know is ... this is considered a "Sterile Procedure".  We are exposing Manny's central line to the air and the elements so it's critical this is done carefully and quickly, exposing him to as few germs as possible.  You'll all remember how horrible a line infection was! 

Before I even bring Manny into the room, I lay out all the supplies.  I am careful not to touch anything that will be used for the sterile procedure, laying all the supplies out on the sterile cloth.
View photo.JPG in slide show

Above, what you can see are the supplies I need for this procedure.  Upper right is a mask.  Manny and I both get one.  Right center is a blue cap.  Bottom right are sterile gloves.  Bottom left Iodine (3).  Upper left is alcohol.  Small circle silver disk in middle (it's upside down but it's white on one side and silver on the other).  Two semi circles in the middle are tape like IV 3000. 

Once all the supplies are set out, I go get Manny and lay him down on a changing table.  I take off his shirt.  We both put on our masks.  He calls, "We going to be the doctor?"  (Every time he says it the same way.  These are our "doctor masks".) 

View photo.JPG in slide show

Take off his old dressings.  This picture shows it half way on and half way off. 

View photo.JPG in slide show

This skin is completely covered 24 hours a day, 7 days a week and the only exposure it gets is during the dressing changes.  He says the skin itches.  I can imagine it does!  So the picture above is showing me holding an Iodine swab.  I make sure I do a bit of "scrubbing".  Not because it's dirty, but because it itches.  He usually says, "Ooooo, that feels SOOO good!" So I scrub longer than is necessary. 

There are three iodine swabs in the pack and I use all three.  Start from the center and then work outwards from there.  The idea is to sterilize the area to kill off any bacteria.  Now Iodine is what was used for decades and was the go to product forever!  But recently, a new product has made its way into circulation that is more effective.  It last longer and kills better.  That is ChloroHexadine Gluconate or CHG. 

Turns out Manny is very allergic to CHG.  How do I know?  First, remember all the horrible skin issues he had?  We didn't know what was causing them?  I did a systematic approach to find out the culprit and voila! CHG.  Again, how do I know?  I drew a straight line with the different products and there was a bright red line of bumps where I had placed the CHG.  Since we stopped using it, not one skin allergy! 

Oh, and I was put in contact with a group.  I find this fascinating.  They manufacture broviacs and are starting to "lace" them with CHG.  Why? Because at the time of the insertion is when there is the highest risk of infection.  So the CHG would help prevent infections for up to 30 days upon insertion.  (That would have helped a lot as Manny's first Broviac had to be removed after 3 weeks!)  But a friend worked for this company and she knew of Manny's allergy and asked what do they do for the kids with a CHG allergy? Well, turns out they're rare.  They would like to develop a bedside test to see if a kid is CHG allergic before inserting the broviac.  But since the allergies are rare, how do they obtain blood samples? 

So ... last week, I got blood samples and overnighted them to this company!  They are going to do testing and send the results.  And Manny's blood could actually help other kids. 

Anyway ... back to to the procedure. 

After doing three swabs of iodine and pausing to let them dry in between because "Dry time is kill time" I was taught", we then remove the iodine with alcohol swabs.  This stings for a second Manny says but it's not that bad. 

Next is the little circle.  Normally it's a white circle that's laced with CHG.  But because of his allergy, we use Silver Disks instead. 

View photo.JPG in slide show

They have a slit on one side so it's easy to slip right over the line. 

Next comes the dressing.  It's like a clear bandage.  We use something called IV 3000 which is a bit breathable.  It's also clear that way we can see if there are any issues going on below the bandage.  (Leaking, blood, discharge, redness, etc.) 

View photo.JPG in slide show

There are a million ways to do the dressing.  In this one, I was being creative.  Every time I try to adjust the pressure of the line as well as the placement of the dressing to give the skin some time to breathe.  Last time I put them north and south so this time it's more east and west.  And because there are now two repairs the line is a tiny bit longer and it doesn't bend in every direction, I sometimes have to get creative in the way it's looped.  If you see the silver disk, the area right around that is what's critical and must be completely closed up.  So that's all under one solid bandage.  The "tape" at the top of that is because I've discovered Manny likes to pick at the dressing so I have learned to secure it there. 

The little loopy thing on the right chest is a tension loop.  That is so in case his line gets pulled, the tension loop will first move and the part that is in the chest won't budge. And more "tape" on his right chest ... again, that's for wandering fingers. Then in the center of the chest is more "tape" to anchor the whole thing so it won't get tugged.  And as you can see, Manny no longer has the mask on in this picture because we were done and he likes that off ASAP. 

Now other people do this differently based on what allergies/needs the kids have.  Some kids get skin prep or might be allergic to the dressings, etc.  But so far, this is what is keeping Manny's skin looking healthy and clear. 

Finally, we have to change out the cap.  In the picture above, you can see a little orange tip. That's a swap cap.  It's laced with alcohol and goes on daily for the 4 hours Manny is not hooked up to his TPN.  There is a white cap right above that which gets changed weekly during the dressing changes.  (Sometimes it's blue like the one in the very first picture ... still in the package.  There are just different types.)  The white cap is connected to the next part up called the Hub.  These are cleaned thoroughly and a new cap is put on. 

The whole process?  Even with us taking extra time to scratch a lot and to let things dry, the whole process takes less than 10 minutes.  I've got it down to a science! Practice.  Lots of practice. 

So there you have it.  Now you're all certified in Dressing Changes.  Like I said, this is typically only done once a week unless it gets pulled or wet or starts to come off.  But for Manny, it's rare to need it more than once a week.  (Well, back in the days before we knew about the CHG allergy, he needed daily changes.) 

What mundane thing from my life should I share with you next? Oh, I know, I should show you the charts and tables I have of record keeping for Manny's medical related things.  :)

Oct 18, 2012

Outpatient? oh no, please stay

6:40, leave for the hospital.  Except for the major major wreck blocking one of the main roads to the hospital, it was uneventful. 

9am the anesthesiologist does all of their regular questions ... I've discovered I've become quite numb about all of these 'risks'.  THEY FREAK.OUT every time and I just can't live in that moment.  BTDT too many times.  So I'm probably perceived as quite cold about it but the truth is ... I know it's a risk.  I know what could happen.  I am aware more than they could ever know.  But I also know that he's been sedated numerous times and so far, all has gone well.  I have to live in THAT moment. 

9:11 they take him back.  There's always that moment I discover I have stopped breathing.  It's usually as he is wheeled away from me.  Thankfully Kaley is with me and I'm immediately forced to deal with her and her needs like breakfast (otherwise I know i wouldn't eat). 

10:11 I do a time check and realize he is not back yet. 

10:25 I see him wheeled past me to the recovery room.  I breathe again.

10:32 I am allowed to go in the room with him.  He's still asleep from the general anesthesia but he didn't have to be intubated (yay).  Procedure went well.  Uneventful.  Even still, the anesthesiologist called the pulmonologist and they decided a night in the hospital for observation would be the safest for him.  Uh ... ok.  Overkill.  I think so.  Irony is that this is the first time I didn't grab my overnight bag.  Guess I will do without anything for the night.  Probably nothing I can't do without for one night. 

11:30 We are still in the day hospital recovery room.  Now we're just waiting for a room. 

This afternoon, we were supposed to go to see the Hematologist to address the anemia.  But now?  I guess they'll have to come to us.  That should be interesting to see what they want to do since we're admitted anyway. 

Last time he got a GJ placed, he started retching within an hour or two of it being placed. I know that makes no sense.  But what is new when it comes to Manny?  There was no food in it, just the tube being there and it caused troubles.  That's what led me to believe it was something like the Visceral Hypersensitivity.  And sure enough, that was confirmed with Boston's results. 

I was leary about that happening again. But we're an hour in and nothing so far. 

I don't know what the plan is about starting to use the GJ either.  We'll see.  Should be an interesting ride.  As Doc says, "Put on your seatbelt!" I am scheduled to see the GI outpatient on Tuesday.  I guess we'll address it all then. 

12 got upstairs and I really don't think we need to be here for the reason they have us here ... but maybe he'll need to be here for some strange reason later and we already have a jumpstart.  That has happened before.  Hope not. 

12-6 Hanging out chillin'.  Just waiting.  Can't really leave the room and he's not sick so it's just like hangin out with no way to do housework.  Cartaya offered to let us go until he found out about the little fever from last night.  Then he gave me the look for not bringing him in last night.  Then I told him about the anemia and he was convinced we needed to be here anyway. 

6pm, Hematologist came in.  She thinks this might "just" be iron deficiency but is not 100% positive due to a few of the strange variables.  Not a clear picture of anything.  We discussed that she could do a bone marrow study in the future if we can't stay ahead of the anemia.  I told her that I was certainly not pushing for that to be done and would only do it if necessary and we crossed that bridge. 

So for now, the plan is to have IV iron tonight and one tomorrow before we are discharged.  Then I will set an appointment to see them again in 2-4 weeks and get more blood tests then.  This will be the first time he's receiving iron without a transfusion and that will really be able to help differentiate if this is JUST iron deficiency or if it's "more".  So the Iron in isolation is going to be an interesting experiment that we haven't tried yet.  (Before, we've always waited until he crashed before we did anything about the anemia ... this time, I didn't want to wait that long and she agreed that this is better!) 

I've been reading a lot about Red blood cells in the past few hours.  Fascinating to me.  Is it the under production, over loss or over destruction of the RBCs that's causing the anemia.!?! There's a typical presentation of those so one can tend to know which it is.  But Manny has a strange mixture of them so it's unusual (are we shocked?!).  So in my very unexpert opinion, we seem to have a mixture of anemias ... probably some iron deficiency accompanied by anemia of chronic diseases.  Throw in that he's has a few really bad infections/sicknesses lately that kicked his butt and this all complicates the picture. 

So ... it will be interesting to see if Iron in isolation is going to be enough to jump start his blood cells.  If not, he may need a transfusion still in a few weeks. 

8pm vitals check ... Manny has an axillary temp of 99.  Translation? That means he likely has a 100 temp and 100.4 is the magic "temp" here that could keep him here.  Fever is probably the only thing that would delay our departure goal of Friday. 

9:30  He is finally tired enough to go to sleep.  See, WE got up at 6 and have been going hard all day. But him?  He got a nice long nap this morning (with the help of sedation drugs).  Me? About to pass out I'm so tired.  Oh, and because I have no overnight bag ... I'll be doing it in my jeans and dress shirt with unbrushed teeth. 

So night all. 

Oct 14, 2012

Happy Anniversary

October 13 ... an historical day in our life. It's our one year anniversary of being on TPN. I know I mention it often but never really showed any of the process. So here goes.
Weekly, we get a bunch of supplies. These are just some of the supplies. Including gloves, alcohol, tubing, medicines, needles, syringes, etc. 
I know everyone handles their supplies differently but I like to spread them all out and then organize them into two piles. Disconnect and Connect. You see, every day, when he is hooked up to TPN there are certain supplies that I need. It varies per day because some days he gets lipids (fats) and other days he does not. Some days he is on Ethanol lock therapy and others he is not. Because the necessary supplies vary a bit, I like to think it through all at once and not miss anything.
Below is a scene of one week of supplies (minus the TPN itself and the vitamins which are stored in the refrigerator).
I put the Connect items into larger bags labeled by the day "Sun", "Mon". Then the smaller bags are the Disconnect supplies also labeled by day. Then I put them in a bucket so I can just grab and go for the day. (Been a lifesaver on more than one occassion when I was running late!) This particular week, they accidentally sent two weeks of supplies so I have two buckets.
Every day Manny is connected for 20 hours. When it's time to disconnect him, I turn off the machine. I disconnect the tubing from him. Wipe with alcohol (at least 20 seconds) and then on Sunday, Monday, Wednesday and Friday I will put in 10 ccs of saline flush followed by 3 ccs of heparin. Clamp. Swab cap. On Tuesday, Thursday and Saturday, it's basically the same but I flush with 20 ccs of saline and then administer the .3 of ethanol.
Then he is tether free for 4 hours. I try to time this for about 10am-2pm. Why then? Those are the main hours when we're out and about shopping, doctor visits, etc. And it's just easier on me and him to not be connected if we can avoid it.
The TPN bag needs to be set out for about 2 hours before connecting to him. Why? It's cold and it goes straight into the veins. It can cause temperature issues.
When it's time to reconnect, I get out the supplies, the vitamins and the TPN bag.  Then I put 5ccs of water from a syringe via a needle into the vitamins.  Reconstitute.  Withdraw and put into the TPN via a different needle.  TPN is clear ... looks like water.  The vitamins are a distinct yellow and it colors the bag that usual color you see when you see TPN.  (Except on Monday, Wednesday and Friday when we get Lipids and then the bag is white like milk.) 
Then it's time for tubing and I connect it to Manny.  To do that, I do alcohol, syringe of 10 ccs of saline and then connect.  Except for Ethanol days when I withdraw the ethanol along with about 1/2 cc of blood to make sure I got it all.  Then flush with 20 ccs.  Then connect. 
During the day, we put it in a black backpack.  When I carry Manny around, it's on my shoulder.  When he's in his high chair or wheelchair, it's with him.  You've probably seen it in a million pictures of him. 
At night, we hang the bag on an IV pole.  It works better that way.  Also, the pump needs to be plugged in so we do that at night and it runs by battery by day.
So there you have it!  TPN supplies.  After doing for a year, it's a no brainer.  I could probably do it in my sleep.  But I tell you, the first few dozen times, you FREAK OUT doing it.  Afterall, I'm about to connect "food" directly into my kid's veins, the one right above his heart!  In the hospital, I'm not allowed to touch it.  In fact, two nurses have to certify the whole process and sign off on  it.  And here, I'm doing it all alone.  But by now, I trust ME more than I trust anyone else. 
Another part of TPN is weekly blood draws.  Our home health nurse, Melody comes by to do it.  She also takes his vitals. 
And the last part of TPN is the dressing changes.  This happens about once a week.  I'll have to take pictures of that whole process some time.  Pretty fascinating too I think.  I also do the dressing changes. 
Now you're all officially certified in TPN supplies! Ha. 

Oct 12, 2012

Boston results vs clinical application

Wednesday:  Manny is doing pretty well with respiratory this time.  He still has cold symptoms but is managing to keep it (mostly) out of his lungs.  Therefore, he is stable and doing well.  He's feeling pretty good. 

We're doing the choo choo every 4 hours around the clock so that's keeping his lungs open and preventing further atelectasis or pneumonia.  He's doing well enough that I think we can go home soon. 

I asked the Pulmo if we could consider trialing him on just what we have at home to know if I can keep him safe and breathing at home.  This is the stand in doctor since our regular pulmos are at a CF conference across the state until Monday.  He doesn't like to make changes.  So looks like I'll have to ask Doc this question instead. 

He could probably go home tonight but it's not a great idea to push Manny right now.  I was even brainstorming with the nurse that we could PROBABLY handle him if we were discharged. And on cue, he coughed and choked.  As if to say, "Do I have a vote in this?" LOL So the nurse and I decided that one more day would certainly make more sense.  I think the docs will be on board with whatever I feel comfortable with. 

Meanwhile, on Tuesday, the GI decided to start trialing Manny on feeds in his Gtube.  That's right!  He hasn't had anything in there really since October 13 of last year.  Nervously, we started 5 cc's an hour for 6 hours of half strength formula.  Holding our breath, I watched him like a hawk for signs of distress.  He had NONE.  Wow!  That's awesome. 

Now for a reality check ... 5 cc's is like a teaspoon.  So that is like 1 1/2 tablespoons of liquid over 6 hours.  It's a looooong way to go.  But it's hopeful progress.

Wednesday we decided to trail him on 10 cc's an hour for 10 hours at 3/4 strength.  Sure.  Why not?  Afterall, what if it works!??  We would have the ability to get some alternate nutrition in him.  We could lessen the trouble on his liver from TPN complications.  etc. etc.  So it's certainly worth the try!

6 hours in, it all went horribly wrong.  The retching was very severe again.  He lost his breath.  Desatted.  He was aspirating.  Bad scene.  I immediately stopped the experiment.  (I had it put in the orders that we can stop if he doesn't tolerate.)  The nurse gave him a dosage of Robinul to dry up the secretions that were causing him trouble.  He eventually got ahead of it.  And we pulled the plug on the experiment for the day. 

Ironically, at the SAME MOMENT he was doing this retching, we finally got the report from Boston.  That's right!  It has finally arrived.  We have been trying to get there since MAY!  And we got results on October 10. 

I poured through the results and was in a bit of shock by the results.  (Drumroll)

Basically normal results.  They recommend starting to trial him on feeds. 

So imagine my conflicted feelings as those two events (receiving the "all clear to feed him" fax as he was retching beyond control).  Now what?!?!

As I write this blog today -  Thursday, 10/11/12 (cool date, huh), my brain is starting to process it a bit.  I have really teased out the report and found a few explanations of what might be going on. 

1) There was some small bowel inflammation.  Strange since nothing had really been in it for about a year. 

2) Gastric accommodation disorder.  This one also doesn't seem to make a lot of sense.  He was previously diagnosed with severe gastroparesis (less than 1 % left in a emptying study when 50 should leave).  But this diagnosis says he might feel "full" too soon and then retch.  This doesn't make sense because the retching is happening when he was being fed in the small bowel  BEYOND the stomach. 

3)  Visceral Hypersensitivity.  This is the only finding that makes any sense.  It's in the small bowel where he has too much sensitivity to things being there and it triggers the severe reactions.  There is very little that can be done for it.  There are meds we can try but basically it's something that triggers a brain reaction to say, "PROBLEM.. REACT." 

As I type this at 1pm, I'm still waiting for the GI to come in.  She will have received the same report as well as the documentation of the failed experiment.  Interested to see what she recommends on how to proceed. 

2:00  Manny's breathing sounds weird.  From what I can tell, the top part of his lungs sounds all junky and congested.  The bottom part of the lungs isn't moving air (or not much) called "Diminished lung sounds."  I called in the nurse and she heard the same thing.  Not sure why he's suddenly a bit worse.  He had a breathing treatment at 12 and sounded basically clear.  They did an extra breathing treatment to see if we can get ahead of it and stop this in the bud. 

3:00  GI here.  We talked about the discrepancy between the "Normalish" study and the inability to tolerate the feeds.  How can the tests and the clinical picture be so different. 

We agreed to try anyway.  Press ahead with feeds since the benefits are potentially so worth it. 

The plan ... Get another GJ placed so we can feed into the J and vent the G (Like we used to do a year ago).  She is going to try a formula that is very low in fat and is elemental to see if he can tolerate that.  We will restart with VERY VERY low and slow rates/volume.  We can start the tests here and continue at home once discharged.  But we agreed nothing else will be trialed in his G for now. 

She will evaluate the meds that he might need. 
She will talk with the Doctor who did the Manometry testing in Boston to see his ideas about why the test would be normal but the clinical picture not normal and how to proceed. 

Feeling cautiously optimistic about this plan!  Did I tell you how I adore having a doctor who listens to me?  She tells me I should go get my medical degree! LOL She thinks it's cool how I like to research and thinks I am good at it. I told her I wouldn't really want to practice but would love to have the knowledge base. 

4pm, Doc agreed to switch to using only the machines I have access to at home for the night. That way I will know if I can handle him at home or not. 

8am Friday morning as I write this part ... Manny slept pretty well with just the stuff I have at home.  Therefore I know I can try to manage this at home.  I'm a bit concerned because he is still sick.  His lungs are gunky and he's still coughing/choking, sneezing, watery nose, etc.  You know ... a cold.  But for now, he's still managing to keep most of it out of his lungs.  I know we'd both be more comfortable at home.  And I can bring him back if he starts to struggle to breathe.  So I will make a case for him to go home today.  Doc usually goes with my assessment of the situation. 

9am  Nurse said that IR (Interventional Radiology, the ones that will place the GJ) doesn't have the size he needs.  Those long term followers of Manny will recall how we spent 5 days in the hospital for this one time!  So we will schedule it and do it as an outpatient. 

10am Doc says we can go home! Now we just have to work on our TPN situation.  Since we're with a different GI and we're on different formula, not sure if we can use the bags at home (that would buy us a few days to get it all together)  or if the GI insists on using the current formula and then it's a mad dash to get the script to the Home Health Agency and the Pharmacist to make it then get it to me in time for him to hook up tonight. Obviously I'd like to avoid all that nonsense but we'll see. 

And as we transition back to this GI, we've never had TPN under them so we're not sure how different their protocols will be.  And I'll be under the GI that I seem to have communication issues with.  So ... leaving with a bit of unease and uncertainty about all of that. 

10:30  We can use old formula and go home NOW!!  Yay yay

Oct 9, 2012

Hemostat anyone?

Going to tell this story as quickly and succinctly as I can. 

This afternoon at 4pm they put in the Ethanol lock like usual.  At 8pm Manny was sleepy and falling asleep in my arms but I was trying to keep him awake with tickling him. But alas, he fell asleep. They came in to withdraw the ethanol.  It came out.  Blood came out.  Perfect.  Then she went to flush it and he said, "Ow, wet".  Something had "leaked" on his tummy and it woke him up. 

We thought the syringe wasn't screwed on right so she reapplied it.  Squirt.  Saline everywhere but couldn't tell where it was coming. She went to go get another syringe and we watched it slowly go in and water poured out from under his dressing.  That meant there was a break/leak somewhere in the line. 

I looked at the clock and noticed it 8:15 and suggested she go call the IV team ASAP.  I'd just seen Mani in the hallway about 2 hours earlier.  I know they leave about 9pm. 

I was sitting in shock.  Depending on where the break is ... this can be an "easy" repair.  Or this could mean that he needs a whole new line.  That is BAD news. 

The RT was there the whole time during this and we knew we had to do that breathing treatment now.  It will be the only one he gets through the night so we need it.  (Why? the sleep study, they don't want it interruped).  So I put Manny on the bed and she started the treatment which of course woke him up. 

I walked to the open door and nurses/techs were gathered around seeing what was going on so I told them.  I was there like 1 minute.  Then walked back to Manny.  When I did I noticed a huge stain of blood on the front of his shirt.  I immediately pulled up his shirt and it was spurting blood. 

You see, this line is placed right near the Superior Vena Cava (SVC) which is a vein right near the heart.  And while this is still a vein, because it's right there, it acts more like an artery.  I yell out the door. 

The charge nurse and nurse came running.  They knew they needed a hemostat (a type of clamp) and they came back with metal ones and no gauze.  I quickly remembered what Stephanie from the IV team taught me ... must be a plastic hemostat and there must be gauze or the line will be further injured.  They couldn't find one quickly so I grabbed my purse and pulled mine out.  I had gauze and the hemostat handy. 

All this took place in a matter of a minute or so.  The nurse clamped it.  That serves to make the blood stop spurting and air to not go into the line and create an air embolism. 

(There's a nurse near the door by now that I don't know ... I'll have to figure out who she is.  She was telling everyone that protocol is that every room with a kid with a central line should have a hemostat with gauze hanging in it.  That's the way they do it in the ICU.  I told her I've NEVER had a hemostat in my room, on the floor or in ICU but I know I would make sure that is done from here on.  I also suggested that this incident be the reason for the process to be evaluated for the future.)

 We clean him up.  Crisis stayed.  Mani comes in and we see where the break is.  Thankfully it's in a spot where it can be repaired!  That took only about 30 minutes.  My blood pressure started to come down.  Repair done.  Then another dressing change.  Manny was a trooper.  He was scared at first but then calmed down. 

Did I tell you he calls it his "fire hose" and pretends to squirt water with it when it's not connected to an IV?  I told him his fire hose broke and Mani was going to fix it.  He understood. 

OK so next problem.  You know how his blood sugars drop QUICKLY?  And you remember how I just said we were in the process of taking the ethanol out when it broke?  Well that means he had been off fluids for 4 hours and was going to need to get back on ASAP.  Problem?  Can't use a line for 4 hours after a repair!  There is no stinkin way he could wait 8 hours for fluids.  So we realized we would have to do an IV. 

Thankfully, Mani was able to get it on the very first stick like it was nothing.  She keeps telling me not to get spoiled.  Ha!  Too late. 

By then it was 9:30 and the guy arrived for the sleep study.  We're only doing the 7 channel ... not as much "stuff" as what we're used to all over his head and face.  (That's probably good news considering how traumatic this night already is.) 

He got it all set up and Manny fell asleep.  10pm

Me?  Trying to shake the whole thing! 

This was scary.  And I imagined what would have happened if I had been at home or away.  And truthfully I could have done it ... clearly.  I had the tools and knew how to use them.  I knew what needed to be done (Thanks Stephanie for the training!!).  So in that moment I could do what I needed to.  (God seems to prepare me for stuff so I try to pay attention as I go.  I know there will be a use of the info somewhere along the line.)  But if I'd been away from the hospital, the whole drive there and wait would have freaked me out a bit.  As it was, we were in the best place at the best time!  An hour later and the IV team would have been gone. 

God is good and is always looking out for me!  Thanks for the prayers!!

I told the nurse that she did a great job and thanked her for her help.  She teared up.  She was visibly still shaken from the event.  I told her that my life is full of moments just like this.  That THIS is what my life is like.  And she looked at me in horror.  And I told her that she did great in my world. 

Now on to the sleep study ... sadly, I'm hoping he has trouble breathing tonight.  What a strange thing to hope for I know.  But I just want them to "catch" what it is that he's been doing lately that's freaking me out at home.

Night all.

Bounced Back

Seems I'm always trying to play catch up on this blog.  Life is at an incredibly fast pace. (Duh). 

So Friday Oct 5) Manny ended up in the hospital with "dehydration" and not urinating.  While here, we noticed a runny nose.  Tested positive for Rhinovirus.  (One of the more than 200 virus strains that cause the "common cold".)  Saturday, did great (no fever, no respiratory issues) so Sunday we were discharged. 

Sunday night he did NOT do well.  He had the roughest time.  Normally he breathes too fast and too hard (hyperventilation).  But this time, his breathing was sooo shallow that I couldn't tell he was breathing.  I couldn't SEE his chest rise and fall.  I put my hands on him and I couldn't FEEL it.  I got out the stethescope and and I couldn't HEAR him breathe.  I knew he was as his heart was still beating, THAT I could hear.  And during these moments, he would desat.  I put oxygen on, Max, and he still couldn't stay above 90.  It was a long, rough night. 

Monday 8am I wrote a summary with questions and faxed it to the pulmo.  At 9 (when they open) I called to make sure they gave the note to him.  11, they call to say he's still at the hospital and will be in the office around 1pm.  3pm I try several times to get through and I can't.  4 I try again and finally get through to a voicemail.  4:30 the office manager calls and asks for me to come in and can we be there by 5?  Well, it's about 40 minutes away, not counting getting ready to go.  Thankfully I am quick. 

I arrive at 5:05 and head to the room.  There are still about 12 people in the waiting room waiting to be seen! (Not to count the ones in the back in rooms already.) 

Why so crazy?  Two things.  Their computer system went down (which explains why I couldn't get through even to the voicemail).  And they say this is the worst season for sickness they've ever seen and this is the START of the season.  They are just slammed!  Completely overwhelmed. 

So Manny and I sat in the back corner, trying to sit where no one could cough on him.  He sits in his contained wheelchair playing with his own toys.  I tried to touch nothing and I sanitized often!

Finally got back to the room and was seen about 6:15.  We had a very frank, honest discussion about where we stood.  He completely "gets" where we are and also understands that I am very realistic but hopeful.  We were clearly on the same page about where we are and where this is (likely) headed. 

He left the choice up to me about going to the hospital or staying home to "see".  Sometimes I hate being the mom and having to make such tough decisions. 

I got to the van and called the primary.  Not to make the decision for me but to help me think it through.  Afterall, she likely had more than 2 hours of sleep like I had.  And sure enough, she did.  She asked me which I could live with better.  If I went in and he had a great night and it was overkill to be there, I would likely feel embarassed, etc.  But if I don't go in and he gets sicker and it takes a long time to recover would I kick myself for not going in sooner.  Well, presented in that light, the choice became painfully clear. 

I called Doc. 
Me: Hey, This is Beth, Manny's Mom.
Doc: You need a room?
Me: Yes, that's the quick version. 
Doc:  What happened?
Me: Respiratory. Want me to come to admitting or ER?
Doc: Admitting, I'll have it ready by the time you get here.

We just got Bounced Back to the hospital. 

Apparently admitting is closed at 7pm and you have to go to admitting near the ER.  (Across the hospital.)  They were slammed in the ER!  We stood in front of the admitting person FOREVER.  She was doing paperwork.  Never even looked up.  She walked away.  I finally asked the ER person where I should be and he told me I was in the right place. He was visibly upset at the lady for making me stand there so long and then walk away.  Eventually she came back and did the same time.  And FINALLY a lady showed up and asked, "How can I help you?"  I told her we were being readmitted.  Got the name, gave us paperwork ... took like 3 minutes.  That other lady? Never did look up at us or anything.  Ugh ugh. 

Got to the room and everyone got to work on the feverish race that is admitting.  Oh, and on Sunday he weighed 13.4 kilos.  He is now 13.1  That was with him on extra fluids, extra calories and extra fats.  :( 

From 10-3 Uneventful and I was wondering if I made the right call to be here. He was satting 100 on room air and no distress. Then he started doing what he did Sunday night at home. The RT was just here and she said it sounds junky low now. Sigh. Here we go again.  They set up oxygen and suctioned him. 

4-8am was rough. Breathing erratic and more coughing. Gave Robinul to dry secretions (they are that bad, yes, I know this is controversial). 8am had to call the nurse who called RT to come NOW as he couldn't clear his airway. Desatting, etc. even with suctioning he was struggling. I finally got enough of it that he could breathe, caught his breath and then was able to cough some up. By the time the RT arrived (less than 5 minutes) we were breathing calmly again like nothing happened. They knew it was bad as I have NEVER called for them to come stat.

8am  Now he is sitting up playing, breathing fine on room air. Every now and then his secretions get the best of him and he desats but is able to clear it by coughing and suctioning. I'm sure the pulmo will be by soon and change all his meds/treatments up. He could still teeter either way ... recover easily/quickly or this could go south quickly (like he did the last two times).

There is MORE going on too.  Starting last week, I noticed a strange constellation of symptoms.  I have been researching and have been running my own differential diagnosis.  Let's just say I hope I'm wrong on this one!  But even still, I ran it by the CMD expert in California and she (unfortunately) feels I might be right.  I'm not quite ready to put those thoughts out in public but I will eventually, especially if things prove to be as I think they are. 

Oh, some exciting news.  Last week, I wrote the GI in Boston for the results.  This morning I got an email that said the results and recommendations have been given to the referring doctor.  Now I'm not sure if that means my Primary or Shands (as both were crucial in sending) so I should know the results soon.  I wrote the primary and told her that if she didn't get them, then Shands has them and could she get them to me ASAP?  Holding my breath. 

I THINK they will say that there were some things "off" but that they would like to try to initiate at least a small amount of feeds.  Even a few CC's per hour can sometimes help save the liver.  So it might be worth it.  At the same time, will it compromise the rest of him (like respiratory, etc.) to do it?  So we might be forced with another complicated decision of what is best for the baby, not based solely on body parts.  Like maybe his GI tract can tolerate the feeds and it helps the liver but it worsens the respiratory ... then which system do I pick? 

Today's agenda ... get ahead of this respiratory infection.  Get the GI to write a TPN that includes what he needs.  Get Boston results. 

9:30  Pulmo here.  Ordering "the usual".  Round the clock choo-choo train (he HATES it but it's effective), the regular meds, a couple of new ones.  And he is going to do a low level sleep study (the only one that is available in this hospital for some reason).  It will not give nearly the same info at a traditional one he says but maybe it will give him enough to see what we need to see.  And then eventually, we can get the whole study done while out of here.  Liking most of the plan so far.

He did start him on two medications that are very controversial and my gut isn't trained on this yet.  I know I'm on "high alert" for problems.  Watching carefully.  He's on two for drying up his secretions.  One is robinul which will be given every 8 hours while sick.  This SHOULD help reduce some of the post nasal drip and the oral secretions he has (he can't manage them at all right now).  And then a scopolamine patch which is put on once a day to help maintain a steady maintenance of lowering the secretions.  He's never been on either of these so it will be interesting to see if they work, if he's allergic, if he has reactions to them, if they don't over dry him out and make a mucus plug. 

I talked to him about 4:30-5:30 being the key time for him for strange events.  That's when his breathing goes too shallow, his blood pressure bottoms out, he desats, etc.  He said that's likely when he is hitting the deepest REM and we are basically paralyzed in our neuromuscular.    Interesting.

10:15  Fever.  Not high but it's there.  (No, not the meds ... they haven't been given yet).  Could be just from the rhinovirus ... it can cause a low grade fever.  Could also be the start of pneumonia.   

12  What a difference a doctor who listens makes!!  :)

Manny's TPN is straightened out.  He will be receiving the carnitine that he needs.  They are working on a version of selenium for him.  (Not as easy ast that sounds but at least they are trying.)  The doctor looked at the labs that showed the iron issues as well and said that needs to be addressed. She fixed the lipid issue (the home one was too low, the recent one by her partner was too high).  This one is Just right.  (Why did that conjure up Baby Bear images? LOL)   And she got to working on getting the results from Boston for us!  Yay!

In the meantime, she wants to start him on 5 ccs an hour for 4 hours through his gtube.  We will have half strength of an elemental formula.  And he will be vented simultaneously so if it backs up, it will back out of him into the bag and not up his throat.  And I had it put in the orders that if he doesn't tolerate it, we will stop the experiment. 

Why am I allowing this?  IF he can tolerate it, it could help save his liver.  It can help stabilize his sugars.  And it can provide options for alternate nutrition. 

If he can't tolerate it, we will be in the hospital environment.  Supervised.  With witnesses and not just "my" word for it. 

To me, Win/Win. 

I have my feeling how this will turn out.  I'll let you know if I was right.

I'm feeling very positive about the new direction.

12:30, a dear friend Arlene brought me lunch!  What a sweetie pie.  She also took the time to hug on Manny.  He really likes her a lot you can tell.  She just gives off a special warmth.  Gotta love friends like that. 

2:30  The feeding experiment has begun.  It's 5 cc's an hour.  Do you know how little that is?  1 Teaspoon.  That's right.  Only ONE teaspoon of liquid will go into his stomach in the next hour.  He SHOULD be able to handle that.  It should cause NO troubles.  We don't know at what point it will.  In hour two? Three? Tomorrow?  But at some point, it likely will.  Why?  His stomach doesn't empty.  Now, he is hooked up to a venting bag so it should back up into there instead. 

As of the start of this experiment, he is not sweating, no retching, heart rate around 125-130.  Sats 100 and no stomach output.  Let's see how long it is until that changes. 

Was reading on Facebook and saw this quote from a friend ...
"When did I start expecting successful Christian living to be smooth sailing instead of stepping out of the boat in the middle of a storm?

When did I start thinking that good Christian living looked more like a holiday than deployment?

 When did I start thinking Christianity was about putting on accessories instead of putting on armor?

Life’s not hard because you’re doing anything wrong: Life is a battle. Put on your armor."                                              ~ Ann Voskamp

Good food for thought.  I know I feel like I'm out of the boat, been deployed and sometimes wonder if my armor is where it needs to be.  So thanks for the reminder. 

Oct 6, 2012

Fast Forward

Fast forward after Boston…   while we were in Boston, the current GI changed the TPN formula that we would receive when I got home.  I caught several errors in it. MAJOR errors. Including under minimum maintenance levels of fluids.  (This will lead to dehydration.) Plus way under calories for a child who is losing weight.  (Along with other errors.)

Losing weight?  Yes, a year ago he was 13.5 kilos.  And now he is 12.8  In between he got to a top of 14.4 kilos in July.  So clearly, he needs additional calories, not less.   A 3 year old his size who is active needs a minimum of 1200 calories per day.  He is not as active as a neurotypical 3 year old boy so his needs are less.  He was doing great on about 950 calories per day.  Then they adjusted it in July to 920 and that was the difference.  Slowly slipping.  Of course when he was hospitalized twice for SEVERE respiratory complications, he would need increased calories but he didn't get them.  So more weight loss. Then the one I had to stop was 600 calories.  Yes, you read that right! I could have lost it.  But I got it straightened out QUICKLY and moved on. 

He’s also starting to have some strange heart rates.  130 then 55, then 80 then 110 within seconds.  And he is having troubles regulating his temperatures.  95-100 within a few minutes of each other.  Bouncing.  (Autonomic Dysregulation?)

Meanwhile, he has been on TPN for almost a year and I have already found a few issues with low levels of trace elements … iron and carnitine.  But I asked about tests for the others.  Anyway, while in Boston, I took the chance to have a TPN doctor consult.  She said they do a baseline at the start of TPN and every 6 months unless needed sooner.  Manny has never had this done in a year on TPN.  So she ran the labs. 

Wednesday, October 3 we got the results back.  Iron is still “off”.  But most concerning is a “critically low” level of Selenium.  This could explain the strange heart symptoms as low levels can do that.  Selenium also helps build immune system so it’s no wonder he keeps getting sick easily. 

Finally, on Tuesday October 2 I noticed he was having reduction of urine output.  This cannot be accounted for … he is back to the right levels of fluids (only had the wacko low level for less than a week and that was 2 plus weeks ago).  He isn’t working extra, no fluid loss, etc.  So this shouldn’t be. 

On Monday, he was 12.8 kilos.  On Friday he was 13.7 on the same scale.  So he is “third spacing” again.  The fluid is going where it shouldn’t go. 

Friday, October 5:  So between all this, the pediatrician felt he needed to be in the hospital again.  The constellation of symptoms is concerning.   We were admitted about 5pm. 

While we were waiting for the room to be ready, he started with a runny nose.  He hasn’t really had one before and he kept saying, “My nose is … uh, WET”.  I think that makes MUCH more sense than “running”.  And that leads to post nasal drip.  Which leads to him coughing and trying not to aspirate. 

We were out of this hospital less than 3 weeks.  (And if you remember, we were discharged before we were really ready to go due to the Boston evaluation). 

He had a rough night … coughing a lot and just couldn’t get comfy.  He did a few bouts of choking.  But his 02 stayed high.  He is not struggling to breathe.  All the gunk is staying high and not low in his chest yet.  (Good news)

Doc ran a respiratory panel … we think it’s some kind of virus and we just caught it early.  Hopefully we can stay ahead of it unlike the last couple of times!  So we wait for the results. 

In the meantime, he gave Manny a bolus of fluids (250 in an hour versus the normal 50) and it took 16 hours, but he started to pee again.  Hopefully this will be the end of that. 

And he got labs.  They are mostly non interesting.  But you know how we get labs done every Monday?  So I know these labs off the top of my head.  Not to mention I have a table that goes back to every blood test he’s had since April. 

Well on Monday, his Neutrophils were low and his Lymphocytes were normal. 
Friday his Neutrophils are high and his Lymphocytes were low.  Meaning? Likely an infection (guess is viral) that just started.  So even the labs confirm what I am suspecting… some kind of virus that’s just started. 

Now you realize, the last several things that kicked his butt were run of the mill viruses, right?  The kids got Infuenza B back in May and had a couple days of Tylenol and fluids.  Manny ended up in the hospital with a blood transfusion.  And the one from August and the one from September were both “relatively simple” viruses. 
Noon  Saturday:  Well, that was interesting!  Doc must have called in the GI.  I expressed that I had not been happy with the current GI and might need to go back to the local one.  And I guess he decided for us.  Works for me. 
I'll be careful how I say this as I never know who reads this blog any more ... but this GI is one we have used in the past.  There were times I felt on the same page and times I felt on the complete opposite page as it comes to Manny's safety (thus our switch to the current one a year ago).  But at this point, I'd be happy to give this one another chance.  They can't do worse than the current one!  The recent mistakes alone warrant a change in care. 
I guess I'm saying is ... proceeding with great caution. 
What's the hesitation?  Every GI wants to get Manny immediately back on tube feeds.  (Ironically so do I.) So what's the rub?  They don't mind doing it at the risk of his pulmonary/respiratory status.  I say not so fast! 
And now comes the balance between what is worse?  The TPN risks?  Or the stroke like conditions of being fed?  How do I know? And how to convince the doctors of this.  Especially since not all of the doctors I deal with seem to LISTEN.  (ahem)
Part of me is relieved we will again have the local GI.  Afterall, I only saw the far away one ONE time in a year.  That's right!  This complex of a child and that's the only contact.  I will be more closely monitored here. 
But I'm also concerned about not being bullied.  I tend to go passive (against my gut sometimes) when I'm not sure I'm right.  When I KNOW I'm right, it's all good!  I'm a bulldog.  But in those gray times, I find it a difficult thing to navigate.  And where we're headed is definitely GRAY!!!  (sigh)
Like just now, the GI left saying he is going to start from scratch with his TPN.  Uh ... OK?  Why?  Who knows!  Could be a good thing.  Could be a horrible thing.  Who knows?  I mean, why not at least LOOK at the formula he's been on and adapt from there?  See, THAT'S the kind of strange thing that happens often in our world.  No clear cut "right" and "wrong".   I could give you a million examples. 
And the next strange decision I have to make is ... firing the previous GI.  I need to have them stop writing our TPN.  I don't believe in burning bridges (for the most part).  I could do it the easy way, "We just wanted to go with the local GI" and that would be that.  But I also know that is not fair to future patients.  There was some (recent especially) medical mistakes that were quite serious.  If I don't say SOMETHING they will never learn from this.  But what I have to point out could also get the person fired.  Some would say GOOD! She deserves it. But I would rather her learn from it.  So have to decide how to point this out with that intended outcome.  (again, sigh)
I will take the weekend to write the letter (with factual data) and send it likely on Monday. 
Oh, did I mention the GJ tube?  I think so.  I was placed Feb 2011.  Usually checked if not replaced at least every 6 months.  His was checked in October 2011.  And hasn't been since.  It started acting strangely.  Then it started with a strange smell.  I asked about it and was basically blown off.  When Boston did the EGD, they had to remove the GJ to use that hole to visualize the stomach and small bowel.  The GJ tube was coiled up and disinterating.  That alone could have caused some of his recent tummy pains. 
1pm:  Manny's cold symptoms have seemed to all but disappear!  Not sure how/why.  They left as quickly as they came.  No more runny nose, barely a cough.  Hmmm.  Wonder what that implies for the duration of our stay here?  Afterall, they gave a bolus of fluids for his "dehydration" and he is now peeing again.  Wonder if I could make a case for us getting out of here soon.  hmmm. 
2pm:  Doc was here.  I told him that he "fixed" Manny and that we're all better. :)  He said that if we stay fever free for the next 24 hours and no respiratory issues, we can go home tomorrow.  Now it's all up to Manny how long we stay here! 

How is Manny?  He's still himself.  Sitting in his wheelchair and playing.  He's a little low key and grumpy but mostly himself.  He's been enjoying his ipad and watching the same stinkin' episode/video of Little Einsteins over and over and over and over. 

Kaley is with me again ... what a gift she is!  I actually got to run to the cafeteria to get food.  I didn't do that the whole last time because she was sick and couldn't be with me in the hospital.  And I don't leave him alone.  Period.  So it's awesome to have her here!

Thanks for the continual prayers being raised up for Manny and our family!





Boston Summary

Surprise!  We’re in the hospital again.  This blog entry will be a catch up one from the last entry until now. 

For those who follow us on Facebook, you already know all this.  But I just looked back on the blog and realized I never did update the blog about Boston.  I wrote it, just never sent it.  Then blogger ate it.

So … Boston Summary:  September 17, Discharge hospital 3am, head to airport, stopped by TSA for a substance found on Manny, barely made the plane that departed 6am. Too many medical machines and supplies.  VERY hard.  Manny needed oxygen.  Had it because of a dear friend.  No straight flight, had a layover.  Wrote the blog entry on the plane about “No leave me”.  Stewardess saw me bawling. 

Landed in Boston … drove via taxi to hospital.  Cab driver cheated me. I blessed him with encouraging, affirming words.  Got to the doctor (another long story but we were there at 1pm, told to come back at 2 so we did. Turns out we were told wrong and we almost missed the doctor completely).  Admitted. Great room!

They were worried about his breathing/lung status.  They wanted him to go into ICU and I talked them out of it.  They had monitors in his room so I felt safe.  He needed oxygen but nothing else.  So it was the right call. 

Procedure went well.  They were worried about general anesthesia so they did sedation and apparently he was cracking everyone up during it!  He even tickled the very straight laced doctor. 

They did an EGD and colonscopy.  The initial assessment was all was normal except some inflammation of the small bowel.  They removed the GJ tube and it was disintegrating (explains the foul smell I’d been asking about for a while … I’d even asked if he needed to have that replaced. ) They also placed catheters for the test the next day. 
Sitting in taxi, waiting for car seat.
On way to EGD/Conoloscopy
Waiting for the procedure ... feeling happy and silly.  Best he'd felt. 
Right after the procedures, needed a bit of oxygen due to the sedation.

All day Sept 19 was the manometry (motility) testing.  Very cool.  Looks like an EEG wavepattern.  They administered 3 drugs, one at a time.  The first two were fine.  The third one did something wacko for him and it stimulated the horrible retching that he used to do when he was fed via tube.  They caught it.  They stopped the test and had the doctor come down immediately. 
Pictures of the Motility Study ... nothing hurt.

They packed us up and sent us home.  That sounds so easy, doesn’t it?  We were supposed to be out of there by 3pm for a 5:40 flight (the last of the day).  And we had a TPN bag in the med fridge for the flight home.  Wouldn’t you know it?  They lost it! Just a fluke. They got us a bag of fluids for the trip, popped in a Gtube and we got in a taxi at 4pm.  He promised to get us there in time.  He did.

They had a person there to escort us through the airport.  Good thing we did or we would have NEVER made it!  There was another strange thing at security … not with us but just ahead of us.  And once it reopened, the escort put us at the FRONT of the line!  Then we got on the plane just in time. 
On plane home, cracking fellow passengers up!  The machine in his lap is the pulse ox. 
We use it to determine when he needs oxygen and his heart rate. 

More oxygen needed on the flights home.  Long. Hard trip.  I got sick.  Flu type symptoms plus vertigo.  My parents met me at the Tampa airport to drive me home (it was 1:30am).  Phew. 

The next day went to the Pulmonologist for a consult.  Gave us a new med to dry up his secretions as needed. 

Then we just tried to lay low and recover a bit.  (Thus the low and the neglect of the blog). 

The rest of the story is being written on the blog right now!  Stay tuned.