Love Makes Families

Love Makes Families
A family of 7 due to the blessing of adoption!

Monday, April 28, 2014

Wanna walk in my shoes?

My life tends to be...... hmmmmm... what is the right word? 
Hectic at times.....

Let me tell you a little about my past 48 hours!
I wake up Saturday morning, and it seems just like every other day.
I walk into Adam and Matthias' room to change them and start Adam's feed.
Matthias was in a spica (also known as a full body cast) because he had a broken leg. (Sadly malnutrition for years leads to brittle bones).
I lay 7 year old Matthias on the floor and get ready to change him. I open the diaper, and I know this is not going to be a fun day. His stools were loose and had gotten out of the diaper and into the cast. Luckily, it was just at the opening of the cast. With about 20 minutes of my time, a whole package of baby wipes, and some baby powder, I was able to get Matthias "freshened up".
Then I started getting a BAD migraine. 
I got the kids all fed, and I sat down hoping to get my head some relief.
Relief never came, but as a mom, we often just push through.
After all, I had something to look forward to..... I had been in the hospital with Adam (major brain bleeds and 3 surgeries) for my birthday, so we were going to go out to eat for my birthday to one of my favorite restaurants.
Kevin was getting ready for work (he had to leave straight from dinner), and I was getting all the kids ready.
Well. I went to change Matthias again, and guess what?!?! We had the same problem. Again, I was able to get him all cleaned up, and soon enough we were out the door.
Dinner was great and the kids were all pretty well behaved. Kevin even got a call that work was delayed 2 hours due to rain, so we got extra time with him.
After a little shopping, we went to Grandma and Poppy's house to watch some shows they had recorded for us. That is when the day got "fun".

Matthias had a blow out. Something that would normally involve a bath, involves so much more when your child is in a body cast. 1 full package of wipes and some from a second package, and I still could not get all the stool out of his cast. His skin was already getting bumpy, and I knew the acid would eat at his skin. We were supposed to get the cast off on Monday, but his skin would not survive 2 more days. We called the local ER and asked if they would be willing to see him for this. We explained that he was 7 and that the cast had been put on at the Children's hospital. They said they would see him, so I left the 4 other kids with grandma and Poppy. A very stinky Matthias and I set out to the local ER. We get all checked in and get back to the room. Within minutes the doctor comes in and says, we will not treat your son here. Why? Well, he needs to go to the children's hospital which is an hour away. Despite the fact that they knew the facts, they said they would see him when in fact they would not. I asked them to call the ER at Primarys and the on call fellow with orthopedics said. It is a Saturday night. We will be busy. I cannot guarantee we will see him in a timely manner, and he has an appt Monday just wait until then. I obviously could not just let his skin rot for 2 days. I also could not leave my medically fragile Adam while I drove an hour each way and spent who knows how many hours in the ER.

I headed to my parents house. I picked up Adam and My mom. The four of us headed for the children's hospital after a quick detour to get all of Adam's meds. 

We arrived just after 10p.m. Everyone seemed night enough, and we even got taken to a room right away. After 40 minutes of sitting in the room, I paged the nurse. Why has not one single person come to talk to us?
They finally came in after and hour. They looked at the cast (of course all they could see was the part I could get to to clean) and did not think it was very emergent. Another hour passed and we finally got to see a doctor who said she would page orthopedics. Then about 45 minutes later he came in and looked for 5 seconds and ordered x rays. The orthopedic doc had an emergency surgery which meant more waiting for us. Over an hour later, he came back and said his leg was healed enough that we could just cut the cast off.
As they were cutting the cast off, they came to the part of the cast that was soiled. They began to gag at the smell and looked astonished at the amount of stool in his cast. I could tell they wished they had been more proactive. His skin was red, inflamed and bleeding where the acid had been. He immediately began to claw at his skin basically ripping it off. We gave him a sponge bath, put lotion on and got him dressed. We could not make him stop scratching. We had to put socks over his hands and had to tape his pants to his socks so he could not make himself bleed. The right home was insane..... It is now 3 am on Sunday. Matthias keeps trying to use Adam's chair to scratch his legs which involves Matthias kicking Adam. Adam starts screaming. Then Matthias is using the door to scratch the other side. Next thing I know the window is going up,down, up, down...... He was using the window level to scratch his leg..... Needless to say, it was a crazy ride home.

We arrive home at 4 am, and I am beyond tired and so are the boys. I get them all situated, and get ready to head to bed. Adam starts screaming. I do not know why Adam is screaming, and nothing I do seems to help. I finally get him calmed down and head to bed. Adam cried off and on through the entire night (well morning, but we were trying to sleep). Pain meds, changing position, holding him..... nothing  helped. Around 4:30 pm Adam started throwing up. Well, with a child with hydrocephalus, when they throw up you do not think..... oh bummer the flu. You think oh CRAP his shunt is failing. I ate dinner, took a shower, packed up my bags and set out for the ER with Adam. 

We arrive at the ER around 7pm. The sense of urgency with Adam was much different. Within 20 minutes of walking through the hospital doors Adam was getting a CT scan done. I was praying for a virus, but the news was not what I was praying for. They came in and told me that Adam's brain was bleeding again and he had a collection of fluid in both of his subdural spaces. They explained that we would be admitted and that neurosurgery would be by soon to talk to us. It took quite a while for neurosurgery to come. The entire time waiting, I was thinking the worst. You see we had only been discharged from the hospital for 5 days, and they said if the bleeds returned it could turn out to be fatal. A while later the neurosurgeon fellow came in and said we needed to set up a plan, so he was gonna call the on-call surgeon who happened to be Adam's surgeon. A while later he comes in. He tells me that they are gonna change the settings on Adam's new programmable shunt to increase the pressure in his brain then send him home. I was in shock..... He is throwing up because the pressure is too high and you want to increase it. I was so mad and confused.
I had a lot of time to think because a tiny baby came in with a brain tumor which required his attention immediately. I wrote down a long list of questions.
He came back in the room ready to re-program Adam's shunt, and I began asking all my questions.
Well, it turns out his brain was not bleeding. He had developed secondary hydrocephalus. Most commonly the excess fluid with hydrocephalus is in the center of the brain just like Adam's. Well following the brain bleed Adam got a 2nd type of hydro. He now has increased fluid in the subdurals of his brain. Their hope is that by increasing his shunt pressure, it will cause the excess fluid in the subdural to go away. If that does not work, Adam will have surgery to get another shunt installed. 

We were discharged around 1am with some pain meds, nausea meds and instructions to see our neurosurgeon on Wednesday. 

The day got a lot funner at this point. I walk outside to discover that it is downpouring!! I hurry to get Adam in the car, and we begin driving. The hospital is on a hill and the roads to and from are very steep. The roads were so slick that we were sliding down the hill. I was thankful to be down the hill and getting on the freeway. Well I was thankful until I realized how bad the freeways were.

Let me set the scene........
It is 1 am. It is pitch black outside. The rain is pounding down. Wipers are on high speed, and you still cannot see the lines in the road or more than a few feet in front of you. 

The safe side of me keeps thinking "slow and steady wins the race", but the mom in me hears Adam's hysterical screaming and wants to hurry. 

The logical side won, and I went slow and kept my distance from other cars.
We finally got near home, and I went to the 24 hour pharmacy to drop off Adam's meds.
He is still screaming from the back seat.
The pharmacist comes to help and I give him the prescription. He promptly tells me that they do not have any of those pain meds on hand. The next closest 24 hour pharmacy was 30 mins back in the direction I just came from.

Let me tell you about the drive on the freeway. If hydroplaning were an olympic sport, I would have taken home the gold. I would hit pockets of water and slide for hundreds of feet with seemingly no control over the vehicle. It was intense. 

I have 1 dose of pain meds at home, so the 30 minute journey south will wait until morning.

We drive home from the pharmacy. We arrive home safely, and I open the door to get out. Apparently it was more than rain because our wheel chair ramp is covered in ice. I grabbed the handrail and pulled myself up the ramp. The car was 30 feet away and closed and I could still hear Adam screaming. Our roof has still not been fixed, and I don't think my hubby knew it was raining. The bucket was not under the hole and I stepped inside to a nice rain puddle on the floor.  I opened the garage and brought Adam inside. I sit here typing listening to the indoor rain.... oh the joys :/

It is now 3 am, and I am exhausted!!!!!
Sleep deprivation is in full swing :(

Please pray for Adam and Matthias.
I would even appreciate some for me.



Thursday, April 24, 2014

Prayers for my son

I always wonder what he is thinking. Does he know how much I care?
Does he wonder if I love him? Does he wish he was back there?

Does he think I let them hurt him? When I hand him to Doctors
Does he realize how hard it is for to sit back and watch?

Does he know how hard I'm trying just to let him feel my love?
Is there something I am missing? Is he better off Above?

Am I holding on too tightly? Am I trying way too hard?
To keep my baby near me, is the selfish thing I know!

As he cries out in pain, there is nothing I can do.
Will there ever be an answer other than sending him to you?

Why aren't there better options? Is pain or death just all there is?
Why should we have to decide? Why can't we keep him here?

His tears they bring me so much sorrow, and I wish for peace for him.
I cannot watch him in this pain anymore, but the options just seem so grim.

My son I fought so hard for you. I have big dreams for days ahead.
This is not what I imagined when I saved you from that awful place.

They did damage far beyond repair. I'm trying to make it right.
I hope you know how much I love you. I will always help you fight!

We have armies that are praying. They all wish for health for you.
I hope that we can find the answer soon. So this suffering can end!

I love you more than you will ever know. I hope that I can watch you grow!

I love you buddy!!