I think he's known it all along...

I know I've been needing to update, but it's just been about finding the time to sit and gather my thoughts... which have been ALL over the place lately.  So where shall I start?  I think my last post (other than the poem) left off saying that little Tripp man was doing okay, and being a little fussy ham.  I know you all know that very gradually over these past 2 years, Tripp has only gotten worse.  And in the past few months, his play-time has gotten to be less and less.  But in the past week, he has pretty much spiraled down-hill and we just can't figure it out.  

At the beginning of last week, he started running fevers.  He always runs fevers, (he's constantly battling some type of infection) but these fevers were between 103.0-105.2, which he has NEVER run.  We (Dr. D and I) juggled around the possibility of the hospital, but had not made a decision yet.  We thought about the home health nurse trying to start the IV antibiotics at home, but then realized that this wouldn't be the best idea- considering that he probably would not leave it in and he would need the antibitotics around the clock.  SO, she waited until Tuesday night when his temperature dropped between 93.0-95.0 (which was really odd, but can be a possible sign of a blood infection) before she decideed to have him admitted.  

Now I will remind you that Tripp has not left this house since October of last year- at all.  That was the last time he had been admitted to the hospital.  He: 

1. Cannot go more than about 5 minutes without his humdified air on (and this machine cannot be plugged into the adapter in my car, it's too big). 

2.  Would never ever let us put him in his carseat for a 45 min drive- no way, no how.... air or no air.

SO- it was either:

1. Call an ambulance (which makes me nervous just typing it), or

2. Borrow a big RV from my dad's work where we could take Tripp's rocking chair with us.

AND #2 IT IS.

The ride there definitely went better than I would have expected.  Without that rocking chair, though, we would have been up a creek without a paddle:)  The ride was pretty bumpy... and on the way there Tripp was so nervous that he kept switching between my mom and me.  And being that we both get carsick even in the passenger seat of a car, we were both pretty nauseous by the time we got there.  

We went straight in to the ER, no wait... they checked us in and took us straight into a room.  Meanwhile (from the RV to the room- which was just about a total of 5 minutes)- Tripp was FREAKING out.  He was so scared and so confused.  And as soon as we got him into the room, the staff brought in a rocking chair, and he settled down quickly.  

I just cannot say enough about the staff at Ochsner on Jefferson.  Never once have we gone in and had any type of bad experience.  Dr. D always calls ahead and lets the ER doctor know we are coming, so the doctors and nurses are always more than accomodating to us.  They started the IV in his head.  We had to hold his little hands down while he was in the rocking chair and while he cried (but overall he was such an angel).  After we got the IV in and secured (with his special tape), he was SO good.  He would try to feel it and I would say, "That's just some tape, buddy." and he would put his hand down and leave it alone.  

He got his first doses of 2 types of IV antibiotics (and bloodwork drawn) and then they admitted us onto the Pediatric unit (which I can also never say ENOUGH good things about).  They all know us by name and treat us like royalty (really).  And the pediatric doctor on call that night was Dr. Fogarasi- whom we ADORE.  We didn't get in the room until about 3-4 the next morning and then after getting situated, cleaning the room, fixing his bed, cleaning him up, and then showering ourselves- we didn't get in bed until after 5 that morning.  And all of that time, Tripp left his IV in his poor little head.  And then, I'm assuming as soon as we finally fell asleep- he ripped it out.  Because when I woke up at 7 that morning, it was lying right next to his head:)  

So then there were decisions to be made.  Were we going to start a new IV to give him the rest of his antibiotics when he would probably just pull it out again?  Were we going to keep him in the hospital where is SO anxious and out of his comfort zone to treat him for something that would just come right back?  The pediatrician on call decided that she did not want us in the hospital.  She wanted us to be home in our environment, where Tripp would be comfortable.  The plan was to take him home on antibiotic injections (which is pretty much the only option left now that he is resistant to almost every oral antibiotic).

Dr. D decided that she wanted me to talk with the PICU doctor, Dr. Finger, while we were in the hospital.  She wanted him to give his opinon on where we should go from here.  So Dr. Finger came and spoke with my mom, dad, and me.  It was rough, I have to admit.  He (in a nutshell) said that he thinks that we are at the point where we are doing things TO him instead of FOR him.  He said that if we ever admitted Tripp into the PICU and wanted us to stick an IV in his head, or give him an antibiotic shots- that he would not do it.  He said that in his opinion, to inflict pain on him (such as shots and needles) just  trying to rid an infection that is going to come right back- is almost cruel.  He made it a point to ask me if I thought that he was getting worse- and of course I said yes.  Especially his skin.  

He didn't want us to make any decision right then and there, but just to think about what he said.  And honestly, everything he talked about is exactly what I've been feeling over the past few months.  When it's his time (whenever that may be), I've always said that I would keep him at home and keep him comfortable.  And doing anything that causes him MORE pain when we are trying to treat an infection that is going to come right back the second we are finished treating it... is not my idea of comfortable.  

So where are we now?  We are home, of course.  

And we are working on his comfort.  We have done a number of things in the past week.  And by we, I mean Dr. Defusco, Trea Landry (CVS), Don Fellows (Central Drugs), and I.  In the past week, we have  started 2 new pain medications and 2 new anxiety medications.  Baths have been, of course, worse than EVER.  There are absolutely no words to even begin to express bathtime.  I'll just leave it at that.  And now diaper changes are just as bad as bathtime, they just don't last as long.  Tripp has been getting an ungodly amount of pain medicine in the past few days.  And we still have not gotten him to the point where he is comfortable when you move him (or of course bathe him or change him).  Now don't take that the wrong way- for the past week, he has spent every day pretty much knocked out in the rocking chair, not even being able to say "more" or "yes."  But when we go to move him, sit him up, or switch positions- he starts trembling in pain.

Ready for just a little "good" news?  My sister is in town!!  She flew in last Sunday and is staying until next Tuesday.  I am so happy to have her here.  I really needed her.  So did my mom:) 

I'm trying not to even think about her having to fly back to North Dakota... that is not going to be a good day.  

I really do not know what I would do without Tripp's doctor and pharmacists.  Honestly, they are more like friends/family to us.  Even if I tried, I would never be able to thank them enough for what they are doing for Tripp.  They are working together 24/7, racking their brains, helping each other, seeking help from other healthcare professionals, and trying to figure out how to make my little man as comfortable as possible.  Dr. Defusco is coming to the house, calling me every day, and working so hard for Tripp WHILE she is juggling her other patients (it just seems to me like she wouldn't even have time for anyone else with the time she is putting in for Tripp).  I have the utmost respect for her for being the best doctor we could have ever hoped for.  And Trea Landry (Tripp's pharmacist at CVS) has been like family to us.  He and his wonderful wife (who is also a pharmacist) check on Tripp every day.  He drops off prescriptions to our house, and hardly ever comes without bringing us food or asking what else we need.  He has spent the last week also racking his brain trying to figure out how to make Tripp more comfortable.  He and Dr. Defusco both have been by the phone- 24/7 waiting to see if I need anything. 

I love them.  And feel so so blessed to have them in our lives. 

This was his bottom in the hospital a week ago- it is worse now, with more redness and drainage from his wounds.

I realize that this may be hard to look at, but I just want everyone to know that this is not even 1/4 of his pain.  His legs are covered in these same wounds, as well as his neck, face, hands, feet, etc.  The picture that I last posted of his little leg in my earlier post was the "good" side of his leg:(

This little saint is having to endure an unbelivable amount of pain- and since his pain and wounds have only gotten worse and not better in the past days/months/year... I think it is only fair to my little angel to finally do the best we can to make him as comfortable and pain-free as possible.  

Is this an easy decision?

NO WHERE CLOSE.  

Am I clinging to my faith and trust in God now, more than ever? 

YOU BET I AM.   

 I have known since Tripp was about 2-3 months old that I should expect to outlive him.  

And for 2 years, I have tried every day to prepare myself for the day that would happen, but pray and hope and trust in God that it never would.  I could not even begin to count or explain the amount of emotions that have gone through my body through these past years... wanting him to live and fight and then asking God to take his pain away in the next breath so that he wouldn't have to suffer anymore.  

And as many times as these emotions have felt- there is no way I could begin to explain what I am feeling at this point.  

Is this just another hill we have to climb and he's going to shake this and start to fuss us again?  

Or is this starting the events that I have dreaded and cried over for the past 2 years? 

I don't know, you don't know, the doctors don't know... only God knows.  

And I have accepted that with everything left in me.  

I have totally turned it over to Him.  

I realize that I was chosen to be Tripp's mother for his time here on Earth. 

And like both of the priests that I have talked to in the past two days have said- Tripp was chosen to carry this cross.  He is a disciple of Jesus and is truly a saint.  One priest stated that we should be praying TO Tripp instead of FOR him, because he is truly blessed by God and has a special place right next to Him in heaven.  I truly believe this in my heart.  

But of course, nothing in the world can ease the pain of watching your child suffer and knowing that "keeping him comfortable" is the first step in letting him go. 

My prayers now are for God to do His WILL- not MINE.  

My prayers are to the Blessed Mother Mary to give us comfort. 

GOD BLESS each and every one of you who have reached out to our family 

(thoughts, prayers, emails, food, phone calls, ETC). 

I am overwhelmed by the amount of lives that my little man has touched. 

I don't think Tripp is suprised, though... 

I think he's known it all along. 

Love,