Monday, August 6, 2012

I realize you may think I fell off the face of the earth

I keep thinking I need to update the blog and let you all know how our family is doing.  A lot has happened since we left the hospital last August.  I will tell you that Matthew is doing well, and THRIVING!  He is an amazingly tough boy that has been through a lot in the last year, but is the healthiest he's been in a long time.  I'm going to see if I can post weekly and update a month of history at a time.

August 2011:

August of last year was a very hard time for us.  Matthew had just come home from the hospital after being inpatient for 1 month.  He wasn't well when he came home, just not sick enough to be in the hospital. Within 1 week of being home, Matthew's seizures increased to the point we thought he was on the edge of going into status epilepticus again.  We knew we couldn't handle another long hospital stay.  Matthew was very weak still, and on a lot of medications.  After a very tearful conversation with our pediatrician, we didn't feel it was fair to Matthew to add to his suffering, and decided it best to admit Matthew into hospice care.  His poor little body didn't seem to be bouncing back like we thought it would.  I will tell you this was one of the darkest parts in our married life.  It was so hard to tell the kids, so hard to look at Matthew and feel like we were giving up on him.  But our goal for Matthew was to add life to his days, and not days to his life.  It still brings tears to my eyes to think of that time.  Matthew wasn't living anymore, he was existing. And it was hell for him.

This was the point where my blog went silent.  I couldn't bring myself to type it. I couldn't share my emotions, or wonder what people thought of us.  I didn't want to be judged by people who weren't walking our walk.  I realize our true friends wouldn't have judged, I just didn't want that extra stress.  I learned a lot about how I deal with grief.  I literally crawled into a shell.  We only shared our decision with our close family and  a few friends.  I didn't want the world to know.  It was a very private time for our family. 

Hospice came to our home and explained what they would and could do to help us.   They met Matthew, and within 20 minutes of them being in our home, the nurse told us she was pretty sure he was fluid overloaded.  We added up his TPN (IV nutrition), IV medications, and g-tube medications and found he was getting about 1700 cc's of fluid a day.  That is a LOT of fluid for a 3 year old who is inactive.  The nurses also figured that since he was fluid overloaded, the body was trying to get rid of so much fluid, it wasn't allowing his intestines to even absorb his medications.  They suggested an immediate reduction in fluid.  They also gave a seizure medication subcutaneously so his body could absorb it.  Within 24 hours he was a new child.  What a whole group of specialists at a hospital failed to notice, was picked up by a hospice nurse within 20 minutes.  It was such an easy fix, and something that, because it was missed, almost cost him his life.

A lot of other decisions went into what things we would provide and wouldn't provide for Matthew , but we decided we'd had enough with TPN.  He wasn't thriving, it caused his sepsis, and his fluid overload.  We wanted to be done with it.  We made the decision to switch him over to formula, slowly over the course of a week or so, and only give him the amount of formula his body could handle.  We would let his body decide if it wanted to continue of if he couldn't keep going.   Within a few weeks, he was completely off TPN, and on tube feedings again. Surprisingly without any problems, and on a much lower amount of fluid.

By the end of August, his seizures were better, he wasn't receiving medications subcutaneously anymore, and he was off TPN.  We had scheduled to have his port removed (it had been in while we were running the antibiotics, and was considered contaminated) and he was starting to turn around.  He was starting to LIVE again.  He was living and thriving on hospice.  What an oxymoron.  We still had a ways to go.  We weren't sure what was going to happen, but we decided to let Matthew and his body dictate what we do.

Next post: September

Tuesday, October 4, 2011

It's been awhile

 Sorry for the lack of the blog update; but life has gotten in the way of blogging.  I have lots to share, but time is not on my side right now.  I do have time to show you a sweet picture from a photo shoot my friend Beth did in our home a couple weeks ago.  Does anyone know who told this little boy it was ok to look so grown up??

Monday, August 15, 2011

First Day of School

 Today marked the first day of school for the year.  Oh, I was not ready for school to start; not ready for my babies to be gone again (other than when they fight!) and not ready for cooler weather and shorter days.  But alas, no one asked me if I was ready; and time marches on.

Obligatory 1st day of school picture on the front's a tradition!

  Mason-2nd grade

 Megan-5th grade

and Micah-8th grade (who thinks he's too big for 1st day of school pictures)

Wednesday, August 3, 2011

Today just may be the day

Since Friday, a lot has happened.  I was told, through the resident, that our surgeon was on vacation, and the other surgeons weren't willing to operate on his hernia because he wasn't there patient.  Well, I came unglued then.  I try very hard to not lose my marbles while I'm in the hospital, but I wasn't ok with that answer.  If the hernia truly was causing the problem; I wanted it gone now.  After much visiting (and possibly a few tears on my part...I'll never tell) with the charge nurse; she called the surgeons and brought them directly to my room.  After chatting with them, I realized it was a communication error.  Yes, they didn't want to operate on him, but it was because they didn't know what to do with the hernia.  It didn't have intestinal involvement (it's filled with fluid from tip of his shunt), but because it was pressing on the esophagus, they didn't know what would be the best answer for Matthew.  He is a "fragile" child, and they didn't want to cause more harm than good.  I completely understood.  Communication is a brilliant thing!  Our surgeon wouldn't be back till Wednesday, and we would talk then.

Saturday and Sunday were pretty much lazy days.  Nothing new happened over the weekend; and we talked about dismissal Monday.  Matthew's retching had improved and we were comfortable with him being home, and figuring out where to go from here once we were settled.

Monday, as meds were being ordered, dismissal papers signed; Infectious disease doctors walked in the room.  Matthew had developed a cough that morning, and he was really mucousy.  They took a listen to him and said that they thought he had pneumonia.  A chest x-ray was done with a comfirmation of pneumonia.  Twice now this little boy has skirted dismissal!  They doc's wanted to keep him another couple days to see which way the pneumonia would go, and give him (yet another) IV antibiotic for a few days before we switched over to oral antibiotics.  I reluctantly agreed.  I didn't want him to get home and get significantly worse. By evening he was on oxygen anyway.

Yesterday we were able to visit with palliative care again (they've been wonderful...I would suggest ANYONE with a chronically ill child...even if don't have a child as fragile as get in touch with them...they are fantastic) and discuss our desires and wants for Matthew.  They helped encourage the medical team to allow us to go home.  Not that they have been against it; but it just works so nicely to work with a team.  So today, barring that Matthew doesn't change his mind, we are getting outta here!  29 days is too long!

Friday, July 29, 2011

It's friday...

and we are still here. 

Wednesday, due to all of the retching, they did a shunt series (x-ray) and a CT of the head to make sure his shunt was working properly.  That checked out fine, but I found out Wednesday night that on the xray of his shunt, they saw a "mass" behind his heart.  Matthew was already scheduled for an MRI of his brain, and his botox on Thursday, so they added on a CT of the chest.  I was a little freaked.  I mean, the kid doesn't need one more thing and the "c" word was brought up.  I didn't want to freak though, and didn't even google it (which is a first for me).

Thursday afternoon, we learned the results.  His MRI is unchanged (they were looking for a chairi malformation..which can cause retching) but his CT showed a diaphragmatic hernia that was fluid filled, and pressing on his esophagus.  The doctors seem to think it is very plausible that this is what has been causing his retching at least for the last few months.  It's also possible that it isn't the case, but we gotta hope, right?? 
Surgery came by last evening and was concerned it was fluid filled.  It didn't make clinical sense to them (I didn't understand why it puzzled them, but asking them just confused me more), why there was fluid in it, so they ordered an upper GI, and possibly an aspiration of the fluid from it (don't have any clue how they'd aspirate it, but it sounded not comfortable). 

Preliminary upper GI results from this morning say that there is no stomach involvement, which I believe is good.  I got a chance to talk the radiologist, and asked her about the fluid in the hernia.  What she said made complete sense.  Because he has a shunt that empties fluid into his abdomen, fluid is going to get caught in the hernia.  Why didn't I think of that?  It's about a 5cm all the way around hernia, which I guess I understand is fairly large for his size.  The surgeons seem to be dragging there feet to do anything about this on a Friday, but I am not done fighting this battle, especially since everyone seems to think this is causing his retching, and is making him miserable.

And as an added bonus {insert sarcasm}, they saw another clot in his jugular vein on the CT.  Infectious disease says that now we have a total of 3 clots (one in his heart, one in his subclavian vein, and now one in his jugular) that there is a good possibility of a clotting disorder.  WONDERFUL; exactly what Matthew needs; one more specialist.

We were hoping this weekend we'd be able to go, but it looks like that won't be the case.  It's gonna be a few more days at least.

He is still requiring a LOT of ativan to keep him somewhat comfortable (enough to sedate a horse, actually...and that isn't an overstatement. The kid metabolizes it like crazy!), so we're hoping the surgery and fixing the hernia will make a big difference for him.  I think he's trying to set a record for the amount of procedures needing anesthesia in one hospital stay.

Wednesday, July 27, 2011

Still here

Matthew is still at Children's.  Retching, has become a real problem.  He is requiring 7 times the normal amount of his medication that we use to control the vomiting.  He is scheduled for an MRI and rebotoxing his salivary glands (this helps with his secretions) on Thursday.  He has been back on TPN since Monday, and the retching is no better.  The doctors are unsure now if it is brain related, GI related, or secretion related.  This is the only thing keeping us in the hospital.  We're praying they'll figure something out on Thursday that will help him. 

His arm is not swollen anymore, so I believe the clot in his arm is gone.  I believe they will look at his heart again before we leave to see if the vegetation is smaller in his heart.  They do not want us going home on TPN and neither do we.  That is what started this whole ordeal in the beginning.  When he is ready for discharge, he will go home on two IV antibiotics for the next (at least) 4 weeks.

So basically, we've gotta get his retching under control.  It's worse than it ever been (and that's saying a lot), but he still manages to smile in between.  He's a strong kid! 

Friday, July 22, 2011

pluggin along...

Matthew is slowly showing progress each day.  By Monday, I got my first smiles from him.

  • His arm is still puffy from the clot in his vein, but today is the first day I can say that I think it's starting to get smaller.
  • His kidneys are back working in full function.  He is getting two different antibiotics in his IV.  One every 8 hours and one every 12 hours
  • He is having lots and lots of retching; more than we've ever seen before.  We've been problem solving for the last few days, and we think we may have finally figured out a couple of reasons why 1) since he was so sick, his brain is still agitated.  This is common when brains aren't 'wired" correctly.  This should get better as Matthew heals. 2) we had to take him off the medication that he takes for gastric motility as it can interfere with one of the antibiotics and cause "sudden cardiac death"..yikes.  The doctors are collaborating and trying to figure out the motility issues, and we are giving him extra ativan while his brain is "angry".  That has seemed to help today.
  • Daily rounds have taken on more of a light hearted tone.  The doctors today told me how worried they were that Matthew might not make it.  .  It's nice to hear them laughing and joking, versus talking in quiet serious voices.
Steve, in his true ornery fashion, is back and at it as like nothing happened.  They have not come up with a cause for his temporary paralysis and weakness, but are guessing that it was a stress response (he denies this..of course)  He sure scared us (and himself if he is completely honest)

I'm going home this weekend to work, and Steve is taking bedside vigil with Matthew.  It will be good to get away for a while, but I will miss my little guy.  I miss my big kids so much.  They are in SD and having a good time, being spoiled rotten.  I can't wait to get home, and spend the last couple weeks with them before school starts.  We sure are hoping by the beginning of next week we can go home!