Day 14

My monkey loves swinging on the IV pole.

Grant sleeps with the blanket over his head. We now

know where he gets it from. His dad is under the brown blanket.

Daddy Time!

We get to leave on Wednesday. YAY! Unfortunately Grant did not tolerate the 3 ml/her feeds, so we are going to stay on 2 ml/hr for the rest on the month. They are watching his H&H (iron). If it gets any lower, he will need another transfusion. My BFF, Amy, will be donating to him if it looks like he needs it, and we have time to wait the 3 days to have it cleaned.

Becky

Your comments definitely intrigued me. I have a ton of questions for you if you have time. If you feel more comfortable emailing me, that is fine too. My email is shawnamcelveen at yahoo dot com.

Here is a quick summary of us:
Grant had a Manometry study done here at Cook Children's. It confirmed his diagnosis of CIPO. The doctor (Dr. Osuntokun) commented that it was one of the more abnormal studies that he has seen. Grant also has dumping syndrome as a result of the Nissen Fundoplication. While it is the least of our worries right now, it complicates gastric feedings. He is now on 2 ml/hr of unflavored Pedialyte and is barely tolerating it. We have to turn off his feeds 2-3 times a day from the discomfort. I expect the on-call doctor in a few minutes, so I will definitely be asking about your suggestions. Thank you so much for taking the time to write.

Here are some questions for you:

1. What is your son's diagnosis?
2. Was he able to tolerate Pedialyte?
3. Where are you located?
4. I will take any and all information you can give me. I am desperate to find something to help Grant, as I am sure all mothers are.

I wanted to also direct you to another blog. It belongs to Annie. Her son Jax also has CIPO, but he violently vomits all of the time. She has some great information and is just as eager to learn new things.

Day 12

George and Cade have been visiting all night, so I don't have much time to post much. Grant did have a BAD episode that ended with him getting Morphine. He is still only on 2 ml/hr, so that is really discouraging.

Day 11

We are spending our days playing in the playroom and cruising the hospital in his wagon.

There isn't much going on today. We are continuing to push 2 ml/hr of Pedialyte and increase the Octreotide to a therapeutic level. We will be here until Grant can tolerate 5 ml/hr. We will be increasing by 1 ml/hr every 2 days, so the earliest for discharge will be Wednesday or Thursday. I am so ready!

I think George might be spending the night up here with us tonight, and I am so excited. It is amazing how much you can miss sleeping next to someone. This is hardest part about being here. I miss my family so much. I am ready to have a little more normal in my life.

Surgery Highlights

We are done, and Grant is sleeping peacefully, so I will type as long as he stays that way.

• Neither the EGD of the Colonoscopy show any visual source for the blood in his stool. There were several different biopsies, so will wait for the results of those.
• We switched to a longer J-tube (16 FR, 1.5, 22). This will move the feeds further down his small intestines. We are hoping this helps a little bit.
• His feeds will start tomorrow at 2 ml/hr of Pedialyte. We will increase by 1 ml/hr every 2 days until we get to 5 ml/hr. He will run it for 6 hours on and 1 hour off. Then we will consider discharge. If my math is right, that means next Wednesday.
• We will slowly increase the Octreotide until we get to 0.5 ml/hr before discharge.

Now, let me rant about idiot doctor. Her plan was to resume feeds tomorrow at 2 ml/hr and increase by 2 ml/hr every 6 hours to a maximum of 8 ml/hr. Then the very next day, we were to repeat with half strength formula, and finally do it all over with full strength on the following day. Dr. Osuntokun said that this would be too rough on his system, and it wouldn't have a good outcome. He gave me his nurse's direct number in case anything else gets proposed "off the plan."

Day 9

Here is a very quick update. We are waiting to go to surgery for the following:

• EGD with biopsies under Electron Microscope.
• Colonoscopy with biopsies
• replace leaky GJ button
• muscle biopsy

I will update later.

Day 7

Today SUCKED! Our morning started at 5:30 when Grant woke up screaming. After some investigation, we discovered that his IV had infiltrated. His leg was swollen like a balloon. By 8:30, we had the IV team replace it and we restarted his TPN. Two hours later, I looked down and his other leg was swollen. That IV had blown too. I was pissed.

The on-call doctor came and said that we needed to get Anesthesia to try to put in another IV since he was running out of places to put them. He is bruised all over his arms and feet. They took him downstairs and he returned with an IV in his arm. Almost immediately, the alarms started going off saying there was an inclusion somewhere. That one was GONE too.

We waited around all day for the idiot on-call doctor to call me. She called and said that she was going to have to replace it again since he couldn't tolerate enough feeds to stay hydrated and surgery couldn't put in the line until tomorrow. I told her that was absolutely UNACCEPTABLE. I was not going to allow them to put in another IV, when experience told us that it was going to blow. I told her that she needed to try to get ahold of a surgeon to do it tonight. She told me that it was probably impossible, but she would try.

I was right. The surgeon felt like it was an emergency enough to fit in tonight. He now has his central line back in place. YAY!

Here is Grant waking up from surgery.



Some of you have asked what this all looks like. Here is his stomach. On his top right is the scar from the line that we just took out. On his top left, is his new Broviac central line. It tunnels in there to a vein under his collar bone. In his stomach is a GJ tube. The tube coming out of the side helps decompress the gas in his stomach. The valve in the top gives us access to his jejunum ( the 2nd part of his intestines). This is where we put his medications and any feeding trials.