Caden and the pediatrician

We went to Caden's pediatrician visit.

We asked her about the gas levels, and she said she thinks his CO₂ level was at 58. That is on the high end of where he was running this last hospital visit. The level also goes up and down naturally based on the amount of physical activity you are doing. It is harder to remove CO₂ when you are doing more activity. Just the same, it is harder to keep your oxygenation levels up when you are doing physical activity. But, when they checked Caden's oxygenation level, he was at 99 out of 100. So, he is keeping it up above where they expect it to be (89 to 95).

He gained 12 ounces since last Wednesday, which is what she was hoping for. His weight is on the lower end of where it should be, so she is having us pump him full of calories to help him increase his weight and get where he should be for his age.

She has changed his feeding schedule and amounts again. We were at 105 ml every 4 hours, now she is changing it to 115 ml every 3-4 hours during the day and 120 ml for the feeding before we go to bed and the first one in the morning. She is trying to give us a 6 hour window in which we can get ("hopefully") uninterrupted sleep. We'll see what actually happens.

Caden vs. Dr. Norohna

Caden met with the pulmonologist, Dr. Norohna, on Monday. The doctor said that it sounds like Caden is breathing deeper. He also said that it looks like he is breathing deeper as well. So, all in all that is good to hear. They took his blood gas levels and another test, just to see how he is doing with his CO₂ (Carbon Dioxide) levels and other levels.

The nurse for Dr. Norohna's office called yesterday, they said that his levels were about where they expected them to be and that everything looked good. Both Holly and I wish that they had told me "what" the levels actually were. Since we learned so much in the hospital, we would have at least had a general knowledge about them.

Today, Caden's physical therapist and "teacher" were supposed to come by for the first time at 10:15AM. They are going to come once a week to my understanding. But, only the teacher showed up. The "teacher" said that it was very unusual for the physical therapist to not show up. But, the "teacher" did what she came to do anyway. She is going to help him with playing with his toys, like batting at them, and things like that.

They are also going to set up a time where we can meet all of the people that will be working with him. (i.e. the physical therapist, the "teacher," the occupational therapist, etc.)

Caden's baptism.

Caden before his baptism.

Caden's Baptism Certificate

Caden with his certificate.

I asked the pastor who performed the baptism on Caden, Pastor Carlos Schneider, to write down the history of why sea shells are used when children are baptised.

Here is what he wrote:

"Whether the baptismal shell originated with John, the Baptist is not known for sure, but there are medieval paintings that show John, the Baptist using a shell in his hand to pour water over the heads of the one being baptized. That seems to be the origin of the tradition of using a scallop shell in pouring the water in Holy baptism. A scallop shell is fan shaped and has grooves or lines on the outside. The inside is bowl-shaped, making it suitable for scooping up the water and pouring it over the head of the person being baptized.

Because Baptism is in the name of the Triune God, over time, three drops of water were added to the bottom of the shell, as a symbol for the Holy Trinity.

Because shells are closely associated with water, it may have been a very easy process to integrate the shell as a symbol for Baptism."

Miles of Smiles

When I came home, I found out that my wife had put Caden in his crib for the first time. I looked in on him, and he looked so comfortable. (Picture to come.) I left him in the crib after she left for work and kept checking on him to make sure that he was alright.

I heard him fussing a little bit, so I went to check on him. He was awake. So, I called out his name and he smiled. He looked at me as I moved closer and he smiled some more. His smile just melts my heart.

Even though the Lord chose to burden us with Caden's disability, he also chose to bless us with a beautiful baby boy that is so sweet. Now that we have him, my wife and I don't know what we'd do without him. I know that we are exhausted from everything, but he is completely worth it. I know my wife agrees with me on that.

Is the shirt correct or what?

Is the shirt correct or what?

I couldn't have a cuter boss.

Caden did something so amazing last night. I wouldn't have believed it if I hadn't seen it with my own eyes. He rolled over!!! And of course it happened completely unexpectedly, and my camera was no where near me. They said he would be behind on physical development, and here he is 7 weeks and he's already rolled over.

Now how is that for completely amazing?!

Mommy is sick

Holly is not feeling well today. I think she caught what ever my mother-in-law, Deb, is trying to shake.

This just means that I have to stay home and take care of Caden today. What a day for her to be sick too!! We have his case worker coming by at 9, his doctor appointment at 10:50, and Children's Home Healthcare coming to pick up his oxygen equipment sometime after noon.

Oh well, everybody is sick once in a while.

FACT: Children are sick at least 3 or 4 times a year.

A Father's Day Gift

I have my son home!!! This is the best gift that I could receive for Father's Day.

They circumcised him at about 8 AM this morning. When they checked it, up until the time we left, they said he looked fine.

He came home on 3 prescriptions. One is the antibiotics that he was on for his urinary tract infection; which he'll only get today, tomorrow, and Tuesday.

The second is actually for diaper rash. Since he's had the problems with urinating and he got the surgery to fix it, as well as his circumcision, they prescribed a special ointment to make sure a rash is not caused. He only has a single refill on this ointment.

The third is for the reflux that he's had into his left kidney that was caused by a full bladder and the urinary tract infection. I'm not sure how long he'll be on this. We'll have to see what the doctors say throughout the weeks.

Tomorrow, there are many a calls to be placed to several doctors. He has a lot of follow up visits. He has his pediatrician, the pulmonologist, the geneticist, and the doctor that "over saw" his surgery. We think that is all that he has to see.

Other missing pieces...

Caden did get baptised in the hospital before his operation. Oh yeah, he got an operation on his urethra...

Details, pictures, and video on both to come.

Some missing bits and pieces...

The doctor's took Caden off of the caffiene. They did a blood test to see how much caffiene was in his blood, and they were expecting to see somewhere between 10 and 20. But, it was a 3. So, Caden coming off of the oxygen is all him!!!

He is also keeping his carbon dioxide level between 50 and 55. Not the mid to upper 60's like before when he was on oxygen. So, he is Daddy's little fighter. Mommy would disagree, but we all know the truth. She just carried him for 9 months for me and takes care of him with me. ;-P

No Oxygen Support

As of 3PM today, Caden is on no oxygen support whatsoever. They took the nasal cannula out and everything. So, now he is only on the antibiotics and the caffeine.

I am so proud of my little boy. He is so strong and such a fighter.

The nurses said that he has been awake every time that they come over to his crib. He has been awake almost the whole time that we were there; from about 2:30 PM to 10:30 PM. I only remember him falling asleep twice. Once when Holly was feeding him, and once when she was rocking him specifically to try to get him to fall asleep. But, as soon as she put him in the crib, he looked around as if saying, "Hey! Why did you stop?"

He was still droopy-eyed, so we we're pretty sure he would fall asleep pretty quick.

I forgot to mention...

Holly decided late last night that we were going to go to South Dakota for her cousin's wedding. So, we are going to go out of town for the night.

We are so afraid to leave him. We don't want something to happen and us be 3 1/2 to 4 hours away. His doctors and nurses said that he is very stable and that we should go. They said it would be very good for us to get away and visit family.

So, we are going to visit him, and then head up. I know that everybody will be so surprised and happy to see us.

He pulled it out!!!!

At 5AM this morning, my little boy basically pulled the vent out. They decided to completely remove it and keep it off since they were going to do it any way.

He is doing so good.

They have him on antibiotics to help with his infection, and caffeine to try to help him breath deeper. They also have him on a "high flow" of room air. (Room air is defined as 21% oxygen. That is what everybody breaths.) The "high flow" is to help expand his lungs at all times to encourage them to open more.

Vent Removal?

They are talking about taking Caden off of the vent tomorrow. His gas levels have been good and they've turned the settings down far enough that they think they can pull it.

They are going to check his levels at 7AM to see if they are good enough to pull it, and then monitor it after that.

Tears of Sadness, Tears of Joy

Last night, my wife and I were crying when we left the hospital. They let us do something that we have not been able to do since he was re-admitted on Saturday. They let us give our little boy a kiss.

You never realize how much something that can seem so insignificant really is until it's not allowed. And when it is a way to express your love, it hurts even more when you can't do it.

My wife and I keep saying that we wish that we could hold our son, kiss him, and tell him that it's going to be alright, but we can't. He's in a special heating bed they call an isolette. So we can't hold him; we can barely even touch him. That's why when they let us give him a kiss last night, we were so happy.

It's an infection!

Holly called the hospital this morning, and they said that he has yeast in his urine. I'll call it a "baby yeast infection." It could be a type of bladder infection or even a urinary tract infection. They are running some more tests to find out what is causing it.

They have had him on antibiotics since last night. They wouldn't do any harm to him if he didn't have an infection, but he does. So, it's good that they have him on them.

How long he stays in the hospital, all depends on the infection. It could be anywhere from 2-10 days.

We are just so glad that God was telling us to call and get him to the hospital. They said that if we wouldn't have called, there was probably a good chance he wouldn't have been able to fight this off, and we may have lost him. But, that is not the case. We did call. And he will now be alright.

At one point when Holly was holding Caden, she just had a look on her face like she was holding her dead child. I never want to see that again. It scared and hurt me so much that I just wanted to break down. I don't know what I would do if something happened to him, or her for that matter.

Except for the fact that he was sick, there was a moment yesterday when I was holding him on my chest that I thought to myself:

"My family is sleeping. My wife is comfortable in the bedroom, my son is comfortable on me, and my little girl (Kira, our cat) is sleeping on the couch. This is what I have been waiting for, and now my life is as complete as it should be."

The ER & Caden's Return

After Caden came home, he was running kind of a low temperature (95.4˚ F). So, Holly called the doctor and he said to try a "skin-to-skin" hold. Then, to try his temperature again. So, she did it and his temp went up to 96.1˚. We decided to wait a short while to see what it would do since it already went up. So, an hour later we tried it again. It was 96.4˚ this time. So, we decided to go to the ER.

We got to the ER and the doctor checked him out and his rectal temperature was 97.5˚. Which is on the low end of normal. So, he sent us home.

We stopped to get something to eat and then went home. Holly decided to take a nap after we ate, and she asked me if I was okay by myself with him. Which I said, "Of course!" Then she went to take a nap.

He didn't wake up when I changed his diaper. It didn't surprise me a whole lot, due to his syndrome. When Holly woke up, she checked him and his temp was 95.4˚. She had me call the doctor again and all I received was a nurse. She asked some questions and said that she would have the doctor call back.

The doctor called back and Holly answered the phone. They asked her some questions, then they said to pinch him to see if we get any type of a response out of him. We didn't get one. She pinched him on the cheek, on the arm, and on the leg. And, nothing. They said to hang up immediately and call 911.

Holly did and they sent an ambulance. I would have to say about 30 seconds after she hung up the phone a police officer was at our door. Then about another 30-60 seconds after that, the EMT was at our door. Then about another 30-60 seconds went by, and the Ralston Fire Department was here. We were shocked at how fast they got here. The EMTs tried to rouse him by calling his name and figiting with him, and he finally peeked out of his eyes, and wiggled a foot. All we could think at that moment was, "What a relief!" They took him in the ambulance to the Children's Hospital ER again.

He sat in the ER for about an hour, all of the while 2 doctors and a resident doctor looked him over. One of the doctors was the doctor that saw him in the morning. The other doctor was one of the doctors that saw him while he was in the NICU. He overrided a rule that all babies that are released from the NICU have to go to the PICU at Children's so that he could go back to the NICU and even have some of the same nurses that he had before. Part of the reason why he re-admitted him, was that he was only released yesterday.

He is on the ventilator again. His CO₂ (Carbon Dioxide) levels are about what they have been, but his pH level is low. That means that his blood is really acidic. His level was at 7.0, and they want him between 7.33 and 7.43. I know that doesn't sound like much, but come on, this is medicine, everything is measured in the smallest possible quantities. They put him on Sodium Bicarbonate to help with his pH levels; which is working; but, they had to put him on the vent because that shot his CO₂ (Carbon Dioxide)levels up.

When we left this evening, his CO₂ (Carbon Dioxide) levels were at 62, and his pH was at 7.31. So, he is already on his way to his recovery.

They think that he may have an infection of some sort, and that is why his pH is bad and his temp was low. They have him on antibiotics to help if that is the case. If it is not, then it does no harm.

We'll just have to wait and see.

We have Caden's diagnosis.

Caden has been diagnosed with a genetic disorder called Prader-Willi Syndrome. It is a disorder caused by a deletion on the number 15 chromosome. It causes the people with it to have hypotonia (low muscle tone) at birth, difficulty feeding early on in life, some problems with learning, and eating problems.

The hypotonia fades as time goes on and he get's stronger. The troubles with taking a bottle also fade since his muscles will get stronger. There will also be a physical therapist that will be assigned to help Caden

The problems with learning can also be helped with an occupational therapist. We will also do what we can to help him learn on his own.

With the eating problems, it's not a problem with getting them to eat like you normally have with a child. It's getting them to stop. The part of your brain that controls when you're hungry and when you're full, the hypothalamus, doesn't work properly in people with PWS. It'll tell them when they are hungry, but it doesn't always flip the switch and tell them that they are full. So, they can eat, and eat, and eat until they hurt or kill themselves. To make matters worse, the hypothalamus also controls your metabolism, and people with PWS have a lower than normal metabolism.

So, people with PWS tend to be obese. In the past, some have died from literally eating themselves to death. It tends not to happen anymore with the help of others.

Caden will get stronger and smarter as he goes along through life, and he can live a pretty normal life, but we have to teach him about his disorder as he grows and try to help him.

So, we ask for all of your prayers as we make this journey through life with our "PERFECT" and "BEAUTIFUL" son. We also ask that nobody treat him any differently so that he fits in as best as he can with "normal" people.


You can read more here:
Prader-Willi Syndrome Association (USA).
Googled search on PWS