Merry Christmas!!

This year my parents gave us the most unique letter with our Christmas present. They wrote this entirely themselves. I loved it so much, I wanted to share it will all of you.

Twas A Few Weeks Before Christmas

'twas a few weeks before Christmas and Mom said to Dad, "What should we get those dear kids that we had.

Who once were small, but now, sakes alive, the oldest is 32 and the youngest 25.

And that's not all, lest someone be missed; there are spouses and grandkids to add to our list.

We love them so dearly, they're just as good as can be, how do we find the perfect gift to put under their tree?

Oh what shall we get? What thing would they like? It sure was easier when it was a ball,doll, or trike.

For Steve, when he's nestled all snug in his bed; there's visions of 4-wheelers that dance in his head.

And what about Jill, what would be a good fit, " Well", said Mom, "I know she loves to crochet, sew and knit."

Then there's James; he always likes the latest gadgets, but how can we know that he doesn't already have it.

"You know", said Dad, "Kim enjoys reading so well, how about one of those new fangled E-books they sell?"

Oh, what could we get that would be good for Curt? If it is was something to do with fishing we know it would work.

But how do we figure out what that "something" would be? It seems he already has everything from A to Z.

A sweater for Jill, some new tool for Steve? We really must hurry; it soon will be Christmas Eve.

"AH!" Dad said,"I got it, I know what it will be, let's give them some green stuff to put under their tree."

And what to do with it, we aren't going to say. They can keep it or spend it or give it away.

This will be great, this will be sweet. Mom especially thinks that this will be neat.

She won't have to shop, she won't have to run. In fact her shopping is nearly already done.

(Well, maybe not yet, she's not quite thru) there's Micah, Megan, Mason and Matthew.

You might think this is selfish and that might be true, but it doesn't mean that we any less love you.

It's just so hard, I hope you can see, to try to figure out what it is that you all really need.

for this reason we send you this gift of green, we're both really excited to see what will be seen

of the gift that you get or the thing that you do, so with all of our love we send this gift to you.

The stockings were hung by the chimney with care...

While we were in the hospital for the greater portion of 6 weeks; I remembered some of the Christmas projects that I wanted to get done. 6 weeks= 4 new stockings. Hopefully sometime between this year and next, Steve and I will also get new stockings :) I would prefer to make these from home however; and not the hospital room.

Merry Christmas!!

We are home

We got home yesterday afternoon; and I am busily preparing for Christmas. Hope to get a couple pictures of Christmas decorations (including the 4 stockings I knitted while I was in the hospital with Matthew) before Christmas.

Matthew is doing better; still spiking some fevers; but they are lower and shorter in duration. He is sleeping a LOT; but I'm hoping that it is because his body is trying to recuperate.

Oh, and mysteriously {but I'm not complaining} his vomiting has essentially vanished. Praise the Lord for that!

Never in my life:

Have I been so happy to find out that Matthew has a bladder infection!!

Matthew's doctor came in singing Christmas carols this morning and looked at me and said, "he has a bladder infection". We both looked at each other and said "YES!!!"in an excited tone.

I know it sounds weird; but a bladder infection is good on many levels.
#1 We don't have to go to Minnesota. When Matthew gets a high fever; he typically has weird, uncontrollable seizures. This is what happened when we went to Minnesota last year. The cause of his crazy seizures ended up being a bad pneumonia that wasn't properly diagnosed.

#2. It's easy to fix. Some antibiotics and home we go, soon...as soon as tomorrow, maybe.

And he is having the typical fever pattern for a bladder infection. The doctor calls it a picket fence pattern. He spikes quickly at night and stays up there for a while (and it is a stubborn little fever; it takes both Motrin, Tylenol AND cool washcloths to his whole body to get it to break) and then is fine for awhile.

He did spike a fever again last night, and had 1 yucky little "I'm gonna stop breathing and turn blue" seizure. Luckily he was on oxygen already, and his oxygen didn't go terribly low. His fever broke early this morning and he is resting comfortably.

Did I tell you how happy I am that it's a UTI??

Thank you, Jesus!

It's not his shunt

Back to square one

I can't even think of a title for this post.

So; Friday, Matthew got a fever. He was working a little bit harder to breathe; so I though for sure he was getting pneumonia. I made a Dr. appointment for the afternoon; and by the time we went to the doctor, he didn't have a fever anymore, but just seemed tired. He's been especially tired for the last few days; but I took it as he was trying to get recuperate from his last hospital stay. The doctor wanted to run some lab work just to make sure he didn't have any bacterial infection brewing and then we went home.

Around 5:30, our pediatrician called and said that his potassium level was dangerously low. She had already called the doctors at Children's in Omaha and they all agreed we should be admitted. I was not happy. I was SOO bummed. We've been doing so good at home. Reluctantly, and dragging my feet, I packed a bag and drove to omaha.

When we arrived, the doctor came to visit us and said that this would hopefully be a short stay. They wouldn't even start an IV. They would just get lab work, and then give him some potassium in his g-button, check his labwork again in the morning; and as long as his potassium was trending upward, we could go home.

Around 2 am; Matthew started spiking a fever.
We could not get it down with tylenol or motrin.
They drew more lab work (which coincidentally showed his potassium to be getting better).

When the doctor rounded this morning, she thought he looked a little stiff, not himself and his color was "off". They checked his oxygen sats' and they were in the 50's. She thought maybe he was having a seizure. His sats returned to normal quickly, and she gave some orders, and left the room.

The nurse was in the room, and I picked him up so they could change his bedding (he had thrown up while the doctor was in the room...oh, and it was bloody..grr) and when I layed him down, he had that same look on his face, and he wasn't breathing.
They plugged his sat monitor in and once again, his sat's were in the 50's. The nurse yelled out help and they got out the ambu bag. The did bag him for about 30 seconds, until he started breathing again. The doctor thinks maybe he is having atypical seizures. If these are seizures, he's been doing it for probably a week. He basically just gets a bit stiffer and his eyes glaze over and roll back a bit.


Our little "overnight stay", is turning into something that isn't so easy.

They loaded him with ativan and phosphentoin (2 seizures meds) and told us that if he is still doing this tomorrow, they are going to arrange transfer to Minnesota to his epilepsy doctors.

I am weary of this. I can only imagine Matthew is too.
Our family needs to be together. UNDER ONE ROOF. IN OUR HOME.


His fever is gone. He is resting fairly well this evening. But he is also on a lot of seizure medications.
In talking on the phone with a friend, I started thinking about his shunt. No one has investigated his shunt. He is sleepier than normal, having spells of not breathing, and having weird events. We need to check his shunt. I asked his nurse and she called the doctor.

As I was typing this, they came in and we went down for a CT scan and a shunt series. We need to cross it off the list.

Is it sad that I am hoping this is a shunt failure??? It would be so much easier than the alternative.

News story

Here is the story of us that was on our local news: Steve DID not want the microphone. So that left me to talk. While I'm not a huge fan of the camera; it worked out ok.

Slowly but surely

Matthew is getting slowly better. We are seeing more smiles and less gagging. It's been easy to neglect the blog especially trying to get back in the swing of things and with Christmas quickly approaching. But, I've also neglected the blog because some days are just too painful to relive by blogging about it. It's been a hard tear-filled recovery . Matthew is starting to sleep more at night, and we are not needing a nurse to come as often. Having a couple nights rest over the weekend when a nurse came into the home was a god-send though. Our day nurse, Jane, has also come in a lot, and even came at 3am one morning so I could sleep.

I have some fun Christmas stuff to post, too. I have been enjoying doing some decorating in our new home.

Oh, and for our local peeps: We recenty found our that our family was nominated and was chosen as a Magic moments winner. We will be on TV tomorrow on Channel 8! I believe different parts of our story will air at 5pm 6pm and 10pm. We're oh so excited!! If they post our story on a online video; I certainly will link it for everyone.

We're home

Matthew, Steve, and I arrived home last night around 8:30. We're tired; Matthew is still having a lot of issues with mucous; and something happened with our nursing hours and we aren't able to get nursing care till later this week. I was really hoping to get some help with Matthew at night time; since he does not sleep well after about 3 am. We're hoping he'll continue to improve again; but I think the trip home made him back step a bit.

mixed emotions

Well they are finally talking discharge. Matthew has had a couple decent days; but yesterday was rough again. Today seemed better; but he is still vomiting and I feel like they keep throwing meds at him. I'm not sure how I feel about making my son into a chemistry experiment. He won't be fully recovered from the adenoid surgery for another week, and his stomach is still very delicate and gets very upset very easily. He is off oxygen and not needing deep suctioning anymore, so we are seeing some improvement. I don't feel like we've got everything figured out, but its not for lack of trying. Depending on tomorrow and what the doctors do, we coyld be going home as soon as Friday. I'm eeady to be home and be with my other kids, too. I just wish Matthew was a bit better. I'm still so glad we came. The doctors have really put their all into figuring this out. We've gotten excellent care here..I couldn't have asked for better; and we are thankful for that. Hopefully our next update will be from home.