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.

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! 

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!

7/17

Just gonna give some bullet point updates:

• Steve came home from the hospital today.  He slowly gained the ability to control his arms and legs on Saturday.  This morning he was able to walk with the help of the nurse.  It is still very exhausting, slow work for him to walk at all.  He is home with a walker, and is only moving from bed to bathroom or chair.  He is very weak, but each day we've seen improvements.  We have no idea what caused this attack on his body.  West Nile Virus testing will be a couple more days before results, but otherwise everything else is coming back negative.  He did have mono a month ago, so maybe his body was still weak from that  and some weird virus got him, we don't know.
• Matthew is continuing to get a little better every day.  Last night, His left arm got really puffy and he acted like it really hurt him.  The doctors looked at it and ordered an ultrasound.  The ultrasound done last night (about 1 am Sunday morning) was inconclusive, but this morning around 8 am the radiologist requested to re do the ultrasound himself, and found a 2cm clot in his subclavian vein attached to the port and the vein.  His port still functions, the clot is on the other side of the port, maybe best to explain it as "upstream" from the port, but none the less, the 1 week old port must come out.  This means surgery AGAIN for Matthew.  Grr.  The hardest part is now going to be figuring out what kind of venous access to put in.  He is not a PICC candidate because the left arm has a clot and the right arm is where the origional infection was.  He most likely will get a femoral central line or a intrajugular line.  Both have risks, but without venous access, Matthew most likely won't be able to fight off the infection.  He was also started on lovenox to prevent any other clots from happening, and the hemotology doc's want a couple days of that on board, and then off it a couple days before they can do surgery.  Not sure when this surgery will happen.
• I was able to get out of the hospital and spend some time with the kids and Steve at home.  Chrissy  was able to stay again with Matthew for the afternoon, and I also got a much needed nap.   My parents took the kids back to South Dakota tonight for a week or two, and Steve's mom will stay one more day with Steve, and then we're going to (hopefully) coerce him to come and stay up in the hospital with me for a couple of days so I can keep an eye on him.

Thank you again for everything you are all doing for us.  We have the best support anyone could ask for.  From church family, friends, family and readers of our blog...we are the most blessed!! God is good!

7/15

Too tired to type much, but didn't want to leave you hanging.  Steve is stable.  He is at St. Elizabeth's.  Not sure what is wrong.  Soon after his chest pain, he had weakness over all of his extremities, and was unable to move them.  His heart checked out normal, they didn't think he had a stroke, but couldn't figure out why the paralysis.  He was able to feel us touch, but unable to move.  He could only move his head, and he couldn't even take in a deep breath.  He went into a very sleepy spell in the ER where they couldn't even wake him up; even pinching him.  He is resting better tonight, and when I left, he was able to move his hands.  I had to feed him supper tonight, cuz he couldn't do that.  I did get an update about 10:30 tonight, that he was moving his hands to his face.  UNBELIEVABLE!  Thank you for praying.  I will do a better job of updating once I get some sleep.

And Matthew had an okay, a touch better again.  He is resting comfortably and his body is fighting.  I had so many offers today from friends to come sit with Matthew (wow!)  and our friend Chrissy spent the day with him. 

We couldn't have gotten through this without all of you!  Thank you so much for praying, visiting, texting and loving on us!  WOW.

Good night.

URGENT!!

Steve just called from home, he was having chest pain and I made him call 911.  He has a history of heart issues.  PLEASE PRAY!

Today's update

Yesterday was hard.  Real hard.  Lots of doctors; lots of decisions, lots of different opinions on what would happen.  Nothing a parent wants to hear.  My mom and dad drove in from SD.  Steve came.  Matthew was sick.  We had lots of Dr.'s coming in and out.  We couldn't keep Matthew's fever down, and he was pasty white with cold hands and feet.  Matthew was septic.  The piece of bacteria in his heart had reinfected either his blood or his lungs or both.  Some doctors painted more of a dismal picture than others.  After we'd collected all the data from the doctor's and prayed; we felt like we needed to decide what would be best for Matthew.  Comfort was number 1.  Medications were ordered for comfort.  Antibiotics were changed and added.  We learned that his kidneys had taken a hit from the sepsis, although they were still producing urine.  We will monitor his kidneys and his breathing status closely.  We will help his body breathe if he needs it.  We will give his body a good chance to fight this.

He had a decent night with only one bought of pain in the evening that was quickly remedied with Morphine.  He has slept almost the whole time, and that is ok.

Today, looks  a touch improved.  He has spells where he is breathing easier. His color is a bit better.  He recieved a blood transfusion today because his hemoglobin is low. He is still getting low grade fevers and he is still asleep.  But he is breathing on his OWN and still making urine.

Thank you Thank you everyone for praying, for sending texts, for your kind words on facebook.  It is overwhelming and I have no words to describe it.  Please continue to pray.  God is listening.  He always does.

We have prepared ourselves (if one can do that) for the worst; but are pleading to God for the best.  When you have a child with special needs, you always wonder "when, and how".  I know Matthew's lifespan will not be as long as you and I.  We know that one of these times, God will not answer our prayers in the way we are asking, but it will still be in His will, and His time, and God will still be good.  He's good all the time.  I, of course am praying that he will be healed; but even more I am seeking God's will.  He knows what is good for us.  Matthew's little life has lessons for us, and we do not know what his struggles will teach someone else.  And this life is not Matthew's eternal home.  He has so much waiting for him; there will be many "stars in his crown".  He is a fighter and a blessing.  We love him very much, but we are the ones that will have it hardest when he isn't here; not him.  So, the only, ONLY thing we as parents are trying to do, is not be selfish.

Please continue to pray. Your kind words mean so much to us all.  If you are wondering what you can do for us, please pray.  Pray for strength, wisdom and healing.  I will do my best to keep all updated so you know how to pray.

Very sick

Matthew has gotten very sick over the last 12 hours.  He is spiking horrible fevers, and his kidneys aren't working very good anymore.  He is very very sick. His skin pale they are saying he is septic.  Please pray for our little guy.  We are so scared for him.

Going home...or not

Today was supposed to be the day we were going home.  The doc's had decided this morning to do an echocardiogram of his heart to make sure that no bacteria had deposited itself in his his heart.  The term they used was called "vegetation".  While the echo was ordered for around 9am, it took till almost 2pm for them to do it.  We had gone over dismissal orders and I'd showered and packed our bags, formula and supplies had been brought by from home health.  When I was watching the echo, I thought something looked funny in his right atrium.  Something big was bouncing around in there.  I don't know much about the heart, but it didn't look like a valve, and there wasn't something like it on the other side. The tech also measured it, so I had my suspicions,but  I tried to remain positive.

Around 4, the doctor came in and told us they had found a "vegetation" of bacteria in his right atrium and they would consult with cardiology and infectious disease.  The cardiologist came in and gave an indepth explanation.  Luckily, they didn't think they needed to go in and surgically remove it.  He hadn't looked at the echo, but was going to look at it, and was hoping we could also stay away from heparin.  We would need to do 6 weeks of antibiotics, and frequent echocardiograms.  He wanted at least the first three weeks to be done from the hospital.  If you can imagine each time the blood swishes through the heart, it comes in contact with the bacteria; so it will be important to keep the antibiotics going for a long period of time.  Also part of this bacteria can break off and go to the lungs and cause what's called a pulmonary embolism.  That also isn't good either.  Eventually this piece of growth should shrink and become more like a scar, and then it won't be harmful.

About 1/2 hour later, the doctor came back and they felt like it was necessary for him to be on heparin, which means he needed to go to modified ICU.


Once we moved floors, we talked about the fact that his antibiotics and heparin could not go in the same line together.  Matthew only has one line.  They talked about an IV, but Matthew doesn't have any place left to put an IV in.  His last IV was in his finger, not a good place for antibiotics OR heparin.  So the decision was made tonight to put him on Lovenox instead of heparin, which can be given as a tiny shot in his leg twice a day.

Here are some of the things swimming around in my head.  First, Matthew is enrolled in Palliative care here at the hospital.  I don't think I've ever talked about it.  Palliative care IS NOT hospice.  Palliative care is about helping us make really good decisions that are best for Matthew, and don't always mean doing everything medical possible.  That gives us liberty to easily say NO to things, or how can we do this so Matthew does not have to be in the hospital so much. It's given us the opportunity to have discussions with care givers beforehand about what we would like for Matthew.  It helps us give Matthew quality, and with maybe the sacrifice of quantity.Making it reasonably safe for Matthew, but maybe taking risks that one may not normally take.  Case in point: Letting Matthew go home on IV antibiotics, knowing that there is a chance part of that could break off and be potentially lethal. If he were in the hospital, he would have a team readily available to do EVERYTHING to him; at home, he would be comfortable.  As a family, we want Matthew to be at home  as much as possible and take some risks, knowing that Matthew is happier at home.  Make sense? Maybe not, but we have chosen this for Matthew.  I personally know that I want quality good time while I am on this earth..not just to exist here.

This new finding is not something to take lightly, there are lots of complications, (some that I haven't mentioned) that could arise from this.  We are being very cautiously optomistic that he will pull through this like a champ.  He has overcome lots of things in his short little life. He IS a fighter.

Events over the last week...a.k.a we're in the hospital again.

We're in the hospital again. Matthew has been hospitalized since last Wednesday with a really horrible infection.  A lot has happened, and I have neglected the blog; finding it easier to update facebook.  However not everyone that loves Matthew is on my facebook, so I need to get the blog updated.  I'm going to give a short break down of the last few days.

• Last Wednesday June 29th, during the morning, Matthew's port needle came dislodged while his TPN was being infused.  As a result, a large amount of TPN was infused under his skin instead of his blood stream. We caught it when he started screaming.  It's a very painful thing to happen.  We called his nurse and she sent us to the ER.  TPN can kill/damage skin tissue; so it's a dangerous thing to happen.  The ER sent us home, saying just to watch it, and bring him back if the skin started changing colors
  
• Over the next couple days we had multiple problems with Matthew's port needles not wanting to stay in an getting dislodged, luckily not while the TPN was going though.

• Monday, when the nurse came to the house to draw labs from his port line, the line would not draw.  She made us an appointment for Wednesday morning for another nurse to come out and put TPA in the line.  This is a medicine that breaks up blood clots in the line and allows it to draw.

• Wednesday while the nurse was at the home, Matthew became very fussy and started throwing up uncontrollably.  I gave him medicine to stop the vomiting, and it only got worse.  By the time she had put the medicine in the line, Matthew started feeling warm.  He had a fever of 102.4.  The nurse called our doctor and left a message.   She left  (around 10 am) and had to come back in 2 hours to remove the medicine from his port.  1/2 hour later, he was breathing rapidly and I put his pulse ox on to check his sats.  His heart rate was way up, but his oxygen was still good.  By 11:30, (1 1/2 hours after the nurse left)Matthew couldn't keep his oxygen levels up and I put him on oxygen.  His heart rate had climbed to 190.  He was miserable.  By noon, he had a fever of 105. I had already given tylenol and we applied cool washclothes to his head and body. When our nurse came back, she drew the medicine out and drew the bloodwork we needed.  But it was also obvious we needed to get Matthew to the hospital, and we called 911 since I had no one at home to help me transport him.

• Once at the hospital, they drew bloodwork, gave ibuprofin, antibiotics, and admitted us.  We ruled out a bladder infection, and his chest xray looked a bit different from the ones he's had in the past, but not much.  His fever came down and he rested pretty comfortably the rest of the day.
• Thursday around 3 am, Matthew woke me up crying uncontrollably.  Then his whole body got really stiff, and ice cold.  It was obvious he was getting the chills, but he also wasn't responsive.  The nurses administered ativan, and 15 minutes later, he came out of it.  At that point he didn't have a fever, but within 15 minutes, he spiked a fever of 104, his heart rate was in the 200's, and he needed more oxygen.  It took us till morning to get his fever under control.
• Thursday late morning, the decision was made to transfer him to Childrens' hospital.  His initial blood cultures were saying he had a staph infection in his blood stream (bacteremia). We also changed antibiotics to reflect the type of infection he had.  Matthew was transferred by ambulance and  arrived at Children's around 12:30.
• Although it was evident Matthew was sick, and I was sure he had an infection in his port, we were still waiting for further cultures to tell us for sure.   Friday, Matthew's port again wasn't working, and the nurses were going to remove the needle and put a longer one in.  When they removed the needle, pus came out of the needle site. We now proved the port infection. Surgery was called and they scheduled surgery ASAP to take the port out.  He went to surgery around 7pm.  
• Since Matthew would not have any IV access after taking the port out, we had to get an IV in him.  The anesthesiologist was kind enough to put him to sleep first, and found 1 vein; in his finger.  They put the itty bittyist needle they had in it, and it went in.  The port was taken out, and at the same time, changed his g-tube out to a g/j tube (in his belly).  We knew he'd need nutrition, and we couldn't run TPN though the finger IV; so we decided the only reliable way to get him nutrition was to put the g/j tube back in.  That allows the food to go straight past his stomach, into his intestines, so he can't throw it up.
• Matthew came through surgery with flying colors; slept all night friday night, all day Saturday, all night Saturday night.  By today (Sunday) at noon, the doctors were concerned.  He hadn't woken up, his belly was distended, he was peeing or pooping.  Lab work was done, a CT scan was done(to rule out shunt malfunction), and lots and lots of prayers were sent up.
• Just about the time every test was done to try to figure why he was sleeping, he woke up.  Woke up smiling!  We threatened him with an enema, and by the time the nurse got it from pharmacy, he had done the job on his own.  We threatened him with a catheter, and 1/2 later he peed.  Thank you everyone for praying!  Keep them up; we still have a long way to go!
• Tomorrow at 3, Matthew will have another port placed, as he still needs IV antibiotics, and no one can believe the finger IV is still working (I know why, though...prayers!) and whenever he gets sick in the     future, we will need IV access.  He is tolerating feedings well so far at 1/4 strength.  I will be happy to say goodbye to TPN. 

I'm not sure how much longer we will be in the hospital, I would think Wednesday would be the soonest. I will try to keep my blog updated.  Now that I am caught up; it shouldn't be such a big task.  I've also got some things to update on from before Matthew got sick, but that will have to wait till we get home as my pictures are there.  

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