Our Fundraisers

#1 You can join Isaiah's FIGHT on facebook and donate with a debit/credit card. CLICK HERE TO GO TO ISAIAH'S CAUSE on facebook.

#2 You can mail a check to their church-write ISAIAH somewhere on envelope or in the memo of your check:

Lifestream Christian Church 204 East Main Street Gardner, KS 66030 Phone: 913-856-8088

Saturday, February 28, 2009

No end in sight...

Temp is up to 38.5, vomiting, abdominal pain increased, still yellow as can be-he is dehydrated, so they are going to increase IV fluids. Don't know what else can be done for him right now-things may have to get significantly worse before we can tell what is wrong...Aaron is worried. I hope I can share my peace with him. I know that Isaiah will be fine in the end. We've definitely seen him in worse shape. At least he's breathing on his own this time...

They call me Mellow Yellow...

So, I'm in Omaha to visit this weekend. I don't know if you can see it in the picture, BUT, the first thing I noticed about my boy is that HE IS YELLOW. Yep, even his eyeballs. The term is "jaundice". That just means that the has too much bilirubin and it spills over into the skin, eyes and urine (his pee is orange). It can happen when someone messes with your liver. It gets kind of irritated and then it gets over it. In Isaiah's case, we don't know if it's from that(the surgery) or if his liver is unhappy about something else.

Isaiah is unhappy about not being able to eat food. He tried to eat cheerios and milk yesterday and it clogged his drainage tube. No more cheerios, unless they are pureed. I ordered some sugar free vanilla pudding and some pureed chicken noodle soup for him to eat. It all arrived and he was hurting so badly he didn't want to eat. So, he climbed back in bed.

I asked him where it hurt and showed him where his liver is. (Under the rib cage on the right side) When I touched his skin to show him, he about hit the ceiling-very tender...my poor little guy.

You can also see in our group picture that he is extremely grumpy today. Who wouldn't be, right??? Liver issues also cause food to taste different, usually in a bad way. I guess we'll see what happens, eh?

Friday, February 27, 2009

Somthing is NOT right...

I've never seen a seriously ill child look so cheerful, have you??? That's our boy-always smiling!
He's even doing homework for his beloved hospital teacher, Mrs. Eva.

The tiny portion of Isaiah's remaining intestine has decided to remain asleep. He had testing yesterday where they put the liquid into his stomach that can be seen on a monitor as it goes through. Only a tiny trickle made it through. The rest, unfortunately, came back up. Looks like the drainage tube stays in for good. At least he doesn't have to go back to surgery to have it removed.

Today he is running a fever and not feeling well. Something is wrong, but it just isn't obvious yet what that is...I hope it's not an infection in the blood stream (sepsis) or infection in the abdominal cavity.

I get to go to Omaha to see my boy this weekend!! Our girls are staying at a friends house, so I get to be there at the same time as my dear husband. Nice to see him once in awhile...;)

Wednesday, February 25, 2009

Isaiah pics

After small bowel transplant 3/2007
After transplant with Grandma & my 2 girls! Playing at my friend Jen's parents house with one of Isaiah's "babies."Healthy Days..Isaiah and best bud!Isaiah and his transplant surgeon-Dr. Grant.Some of THE TEAM taking care of Isaiah in the hospital last week.In a lot of pain after the rejected transplant was removed 2-19-09

Still better (I think)...

Isaiah is in great spirits and still trying to get up and walking around. His gut has not awakened yet and that could be a problem. We'll give it more time...

I am trying to get better at telling people what happened to our boy in surgery and about the need for a second transplant. The statistics just don't look very good, but I'm telling you-this boy is going to be fine. I just know that. But, it doesn't stop me from being sensitive about telling people.

I am missing him so much today. He was very happy on the phone when I spoke with him earlier. He is homesick, but happy to have Dad there with him. Isaiah is usually like the energizer bunny. He has ADHD. He talks, moves and thinks like the wind. He does have the ability to drive me to insanity (he loves it when I say that, it makes him laugh), but it wouldn't be Isaiah if he weren't going 100 miles per hour in every direction. All afterburner, no rudder.

Every day is one day closer to getting him back home where he belongs. I think he will be OK to go back to first grade, but he will not be able to attend day care after school anymore. That's going to put a crimp in the old work schedule...Aaron works evenings and I work days/evenings/whatever. That's the life of a per diem RN. Flexible, but not always predictable. Love my job, though.

So, the problem solving begins. We have a lot of things to figure out, but I am confident that God will show me the way to go. The doors will just open to show me the way.

Tuesday, February 24, 2009

Better today!

My boy sounds like himself today!! He is hurting, but he is trying to walk more frequently and he is in the chair most of the time. His personality is re-emerging and he has turned the corner. He got to see the in hospital school teacher for a short time today. Isaiah adores her and will do any school activity for her, including reading.

His gut has not awakened at this time. Will it??? Time will tell. Isaiah is getting used to having the drainage bag hanging from his abdomen and the central line tubing hanging in the way. Makes it hard to walk and go to the bathroom, change clothes, bathe, etc.

We know that we have a 50% chance of having another surgery between now and the next transplant because something may not heal correctly from this surgery or he rejects the remaining piece of intestine from the transplant. We just kind of hoped that it would be the 50% that WE like. I guess we'll leave that up to God. I started to feel silly for being so upset about Isaiah needing a new transplant. Look what God has ALREADY done for this child. That's nothing compared to what he can do next!!! If that's not God smacking me in the head, I don't know what is.

As I remember, five years after this type of transplant, only 50% of the children Isaiah's age are still alive. After a second transplant, we can only assume the odds are not as generous as 50%. But still, I have a sense of peace, not denial. God is going to show me how to work this out. The solutions will become known somehow.

It's very difficult to live apart from your family for so long after the transplant (typically about six months). I think I was definitely a little crazy when we moved back home after his transplant in August of 2007. But we will make it again, just like before.

As the days roll on...

Monday, Feb. 23

Isaiah is still sitting in the chair. He still has some severe pain, but it is not constant. He even got up with his Grandpa yesterday and waked a few steps. Lots of sleeping and resting. My husband is back in Omaha with Isaiah, so he is happy. Lots of boy time. Isaiah will sit up and watch TV or a movie and will even play a video game for a short time. Very encouraging. I feel like he has definitely turned the corner.

He definitely does not want to discuss transplant with anyone. I have let Child Life know and a psychologist will be following him until he can get home to see someone. They are so wonderful in Omaha. A whole team of trained professionals that know this child and how to help him. Everyone has been encouraged by his spirit and his smiling attitude in the past.

He has been switched to Fentanyl patches, from what my husband says. This means that a narcotic is soaking into his skin, giving more even pain control than an IV drug. I miss my boy so badly.

I have to say that work is very therapeutic. I am able to go and provide care for other people-it is a wonderful way to keep my mind off our family issues. There are so many people that are not half as blessed as I have been. Our family is so lucky, truly.

Little by little...

Sunday, Feb. 22

Isaiah was able to sit in the chair for a long while. He started running a fever in the afternoon and went back to bed. My dad had come for a short visit. Isaiah smiled for his Grandpa and then I knew it was going to be OK. He felt well enough to cover his head with his blanket when the transplant team came to his room for rounds. He was angry and did not want to see them. I did let the surgeon know that I had finally explained it all to him. She was encouraged, as I was, at his anger and sadness. To us, that meant Isaiah had decided to fight.

I have to work for a living. I would love it if I didn't, but that will never be the case. So, with my guilt in overdrive, I kissed my angel goodbye and left him with his Grandpa. My husband went back on Monday morning. We have to trade out who is at home so that we can both work and take care of our two daugters.

After the surgery...

So our boy went to PICU after surgery. The transplant team was assembling in the hallway for rounds. I felt so bad for them. I could see that they were taking this very hard. Seeing the tears in their eyes, I wanted to comfort them all, but I just felt like a piece of wood. I couldn't cry or be angry or sad.

He did survive the surgery.

The day after surgery was Friday, February 20. He slept all day with the aid of Fentanyl and Ativan. He was in so much pain he did not want to talk when he was awake. I still hadn't talked to anyone in my family or any friends. I just couldn't talk about it and just couldn't answer questions or tell the story.

Saturday, February 21. My friend Jenni came to support Isaiah and me. She got there late Friday night. We got to talk about everything and I'm glad I talked about it with her. It made it easier to do what I had to do...tell Isaiah. Obviously he did not know what happened during surgery. He thought that he would come out of surgery "fixed" somehow. I am not exaggerating when I say that telling Isaiah what had happened was the hardest thing I have ever had to do in my life. I knew that the moment would come sometime that day and it did...I thought he was asleep and could not hear me because I was talking softly. He heard the word "transplant" and was instantly awake and alert. I sat down on the hospital bed and looked into his eyes. He looked back at me and asked, "Mama, am I going to have another transplant??" I couldn't speak, so I nodded and the tears that wouldn't come before were there. The tears rolled down his cheeks and he began to cry. He yelled, "NOOOOOO!!" over and over until the nurse came in to see what was going on. I explained that when he went to surgery, his insides were all covered with scar tissue and were not working correctly. I explained that he now had a new central line and would be coming home on IV nutrition (TPN) again. I explained that he would have a tube coming from his tummy draining into a bag until he received a new transplant. I exlained that he could eat and drink again one day, but that it would come right back out. I told him that he would not get his transplant right now. I will NEVER forget that moment or the conversation that we had later that night. I feel like a part of me died in the telling. I am a coward. I couldn't bear to tell him that he would not get to play baseball this year or swim.

Later that night, he asked me why I was crying before when we talked. I explained that it made me sad to see him hurting and sad and that I wish he did not need another transplant either. I told him that he would never be alone and I named every name of someone he knew and said that they would all be there to help us in some way. I explained to him that God would guide us through this just like before and he said, "I know, God has his hand on me." and closed his eyes. I felt so relieved. I was so afraid that he would say that he wanted to die or that he wanted to go to Heaven to be with his friend. I didn't hear either of those things and I was so very thankful to God for sheltering my son and showing him a future.

What do you call it???

So our precious boy had his diagnostic tests. They put a liquid into his feeding tube that shows up on film. They take pictures as it moves from the stomach all the way through the intestines. What it showed is that several loops of his small intestine were enlarged-that usually means that something is blocking the intestine and causing everything to back up into the intestines-making it stretch out. This is a bad sign. It looked like some scar tissue (adhesions) might be pulling on the intestines and blocking them. He needed surgery to look at the scar tissue and hopefully release it from the intestines and then move on, things would get better.

Instead, the surgeon was confronted with our son's small intestines mashed into a ball and covered in scar tissue. No wonder it wasn't working. It looked like chronic rejection. Sooo, the intestines had to come out. No one takes this lightly, it's very serious business. In fact, it's best to avoid any further surgeries on the abdomen after a bowel transplant altogether.

Aside from Isaiah dying, this was the worst possible outcome. If a transplant like this has to be removed, then the patient is taken off all of the drugs that suppress the immune system. Then the patient can be re-listed for transplant in about six months. In Isaiah's case, a small section of his transplanted intestines had to remain inside to connect the stomach to the rectum. He can't be taken off the immune suppressing drugs completely now and could still reject the small remaining piece. If he does, that means another surgery to remove even that small piece.

He should be re-listed in about six to eight weeks, I think. We absorbed all of this information during the time of his surgery. His surgeon came out of surgery twice to talk with us. She is amazing.

(I am so very thankful that our pastor and very close friend, Russ, was there with us the entire time. He has been with us to every court date and every surgery for this child from the very beginning. )

So, we went from a transplanted kid to a kid with nothing in his gut. It would have been inconceivable to me before that this could actually happen. But Isaiah is so creative and special in his own way. We knew it couldn't be easy or straight forward with him.

Isaiah has made some very good friends at the medical center that have had transplants, just like him. Unfortunately, they seem to die with amazing frequency. It is heartwrenching, to say the least. Those are the odds that you accept when you are listed for transplant.

Isaiah has let us know that he never wanted to have surgery again. His friend that died last year is in Heaven-so to him it makes perfect sense to go to Heaven too. There are no doctor's appointments, surgeries, IV starts, hospital stays, painful procedures, etc. This weighed heavily on our minds as we absorbed this turn of events.

This is not a situation that calls for a hospice referral. He could live indefinitely on IV nutrition, providing that he does not die of liver failure or a blood infection first. Realizing that, we knew that we had to move on. But how to tell Isaiah???? That was going to be the hardest.

And the fun begins...

So, we got through Christmas and Isaiah's birthday, both in December. In January, 2009, he began vomiting. Not often at first. It became more and more frequent as the days went on. It was so strange. He wasn't in pain, not running a fever, nothing exciting going on.

We got him scheduled for some testing in Omaha for February. He didn't quite make it to the testing dates. He was admitted before that because we simply could not get anything into his stomach without him vomiting. He had lost 10% of his body weight. Still smiling though. This kid never complains. He has a very sunny disposition. He has been seriously ill in the past and you would never know anything is wrong. That makes it hard to tell when something IS truly wrong.

That brings us to the current issues-

Life after the transplant...

After moving back home, things were good. Isaiah's health was stable from August until October. He became sick and was admitted for an infection in his gut.

Isaiah came home at the end of November and by December, he was back in the hospital. This time he was in acute, severe rejection. It finally stopped after IV steroids and an IV treatment called Thymoglobulin. We were able to return home in late December.

April 2008-hospitalized again-air in the gut and then an abdominal abcess.

July 2008-hospitalized again-bleeding ulcers. He vomited 1000ml of frank blood and then fainted. Lots of fun going to the emergency room.

Setember 2008-hospitalized again-acute rejection. This time, the rejection did not stop after IV steroids and he had developed antibodies to the other treatment. The transplant team decided that a treatment called Infliximab could hopefully stop the rejection. Thankfully it worked and we got him back home just before Halloween.

How we came to be....a family PART II

OK, so fast forward to 2006. We realized that Isaiah would need some very specialized medical care. He was referred to University of Nebraska Medical Center, Omaha. He had his first surgery there in September. He went in with a mangled gut and came out with...nothing. He had only one third of his colon remaining and all of his small intestines were gone now, except for a small piece that connected the stomach to the colon. He was on IV nutrition and had a bag with drainage from his stomach and liver.

He was listed for a small bowel transplant in November, 2006 and received his transplant in March, 2007. He was above the curve in every way after surgery. He even got up and walked a few feet the day after the transplant. Amazing kid!!!

We did get to move back home in August of 2007. It was so great to be back.

Sunday, February 22, 2009

How we came to be...a family

Isaiah is our seven year old, adopted son. He came to live with us at the age of 2 years, 9 mos. My husband and I were well aware of his medical needs and also his need for a family that could handle all of the doctors appointments, hospitalizations, etc. We felt strongly that Isaiah was a fighter and could survive in this world with the right care.

Isaiah was born with Gastroschisis; his intestines were on the outside at birth. Although he had surgery shortly after birth, his problems were far from over. His body eventually formed scar tissue all over his intestines-between, on top, underneath. His intestines were stuck to his liver, his colon and the inside of his body. To make matters worse, his mom did not have the skills to care for him adequately. He was unable to leave the hospital until he was five months old and only lived with his mother for a short time.

Isaiah was back in the hospital from about the age of 10 months until the age of 17 months-he was admitted because he was so malnourished that the outlines of his muscles could be seen. His head looked enormous and he could not sit up. Then he entered the foster care system.

Although the families he stayed with cared for him greatly, something always happened to interrupt his stay with them. I met Isaiah shortly before his third foster family moved away. He was two years old and cute as a bug. He was frequently hospitalized, about monthly, with a central line infection. A central line is an IV that is inserted into a large vein that goes to the heart.

My husband and I had been considering having another child or adopting a child. Here was a child that needed a family-quickly! His life was literally hanging in the balance with the abilities of his next family. He was so weak from the constant infections, any future infection could have been fatal. He had not learned to eat like other infants, so he did not eat and had no desire to do so. He had also learned some very unhealthy coping skills from living most of his life in the hospital. Although the nurses loved him very much and cared for him as their very own, it was not a substitute for a family.

I discussed becoming foster parents with my husband, who was also adopted. He thought we should go for it. We met a lot of resistance in our desire to foster/adopt Isaiah from the foster care system. We attended many court hearings and even had our own attorney. We persisted in our belief that we could care for this child and give him the family he needed. We took our MAPP (foster parent training) classes and received our temporary license the day before he was scheduled for discharge from another hospitalization.

So much to tell-I have to get our pictues from this time period to share.

Part II coming up soon with pics.

Newby blogger...

So my old friend, Jenni, has set up this blog for my son, Isaiah. I have never kept a blog and consider myself to be inept in the world of technology. I do love to write, so I hope this will give me a therapeutic way to express the day to day issues in living with a medically fragile child.

Saturday, February 21, 2009

Isaiahs blog...

I have decided to start a blog to keep family and friends up to date on Isaiah and our family.