Monday, June 22, 2009

In With The New

Sam's new line is in an the surgery went well. We are out of recovery and awaiting the final word on when we get get out of here.

In Surgery

Just a quick update, Sam is in surgery now to have his new line placed. The procedure should be about 45 minutes and then I can start trying to talk them into letting us out of here today. If not today, tomorrow for sure. I hope.

Sunday, June 21, 2009

Father's Day At The Inn

We are still impatient in Milwaukee, Sam's line placement surgery is scheduled for tomorrow. We are still hoping for a Monday discharge, but Tuesday is looking more likely. Sam is doing very well and his old site is looking better every day. We will be continuing IV antibiotics at home just to make sure we get rid of this infection. The infection on Sam's chest and around his tunneled line was identified as Staph. Cultures from his blood still have no growth so it still looks as though we avoided an infection in his bloodstream. He is obviously feeling great and although we try to keep him busy throughout the day he is still sick of being here. Having one arm disabled (to help secure a temporary IV in his hand until we have his new line placed) limits what he can do as crawling and walking are both out. Our attempt at letting him walk without one had for support ended with a nice bruise on his forehead.

From time to time we are contacted by parents of other children who are sick through our website. Some of them found our site by chance and want to know more about how to get Omegaven. Over the last year I have fielded quite a few of these emails and explain what we have gone through to get Omegaven. In every case so far, none of these parents has made it out to Boston or been able to get Omegaven at home. Most of the time I do not hear from these parents for a long time and then I get an email explaining that their child has passed away or their health is failing and death seems imminent. Another parent had opted for a transplant and their child passed away due to complications of the transplant. Getting these messages has been very hard to handle, so much so that I have often thought about not responding to the inquiries any more. But there is always the thought in the back of my mind that one of these times it may make the difference between life and death for someone, so I continue to respond and offer any help that I can.

Three weeks ago we receive an email from a woman who's son was being treated at Children's Hopsital of Wisconsin - Milwaukee. Her son is seven months old and was showing all the symptoms of having Microvillus Inclusion Disease. A biopsy showed that her son has plenty of villi, they are just shorter than normal. At the point that she contacted us she was extremely frustrated. Her son had started showing signs of TPN Associated Liver Disease a few months ago. She heard many of the same things we did when we were in Milwaukee about a transplant, short life span, etc... She was told that her son would need a liver transplant with a few months.

Someone at the hospital who was familiar with Sam told her that she should visit our website. I am happy to report that her son started receiving Omegaven at Children's Hospital Boston at the end of this past week. Being able to help this one child get to where there was hope and help has made all of those heartbreaking moments almost worthwhile. Just knowing that Sam's site possibly helped to save the life of one other child and helped to spread the word about Omegaven means that others out there will find our site, or others like it, and find hope when they are being handed a lot of gloom and doom.

Friday, June 19, 2009

Friday Update

We had a better night last night as both Sam and I managed to get some sleep. We had a little interruption from 1 AM to 2 AM as it was hard to sleep through the PA announcements every ten minutes announcing "ATTENTION PERSONEL, CODE BLACK, TORNANDO WARNING UNTIL 2:00 AM". What a storm that was. All while being on the 11th floor of a building completely covered in glass.

Sam is in a better mood and obviously feeling better although he is getting very bored. Still no sign of infection in his blood, so we are moving ahead with the plan to insert a new central line. As our luck would have it, we are headed into the weekend. They still may be able to have surgery place a new line on Sunday if there are not many emergencies. More likely the new line will be placed on Monday with a discharge on Monday afternoon or evening or Tuesday morning. Unfortunately this means spending the next three days with Sam feeling very well, but not able to do much.

Thursday, June 18, 2009

The Plan

So far all of Sam's blood cultures have come back negative. No sign of infection in his blood stream is great news. The site where his central line was is still infected and hopefully antibiotics will help clear this up quickly.

As long as all of the cultures continue to come back negative through Saturday the plan is to have a new central line inserted on Sunday. If tere is any sign of infection in his blood this will have to be put off as any infection that is present would attach itself to his new line.

Sam has finally fallen managed to fall asleep. He is very frustrated with not having the use of either of his arms as he has an IV in one arm and the other is wrapped to prevent him from pulling out the IV. He also does not enjoy hospital gowns and has managed to work his way out of it a few times.

Out With The Old

Sam's surgery went well and his central line has been removed. Not much to update yet as I am waiting to hear from GI as to our plan for the next few days. Sounds like we are going to be here through the weekend. Yay.


Just a quick note to let everyone know that we were admitted to Children's Hospital in Milwaukee early this morning after spending the night in the ER.

Sam developed an infection in the tissue around his central line. He was just taken back to surgery to have his line removed. We will be here for at least a few days as they would like to get negative cultures before placing a new central line.

I will update more once I have a chance to eat and maybe get a few minutes of sleep. Sam's fear of doctors/nurses/strangers has been a little difficult to work with overnight and this morning, hopefully he will sleep for awhile after the surgery.

Thursday, June 4, 2009

Overdue Update

Almost 15 months old already?

We have been busy, busy, busy. The outside of the house is almost done, we have started the landscaping and have a big mess in the yard. The house has been sucking up our free time lately.

No change in Sam. We had his motility test done which was a complete waste of time. The test is done if you vomit. What was the point of that?

His vomiting continues to be an issue, but has been a little better lately. They are planning on doing an MRI at the end of the month to try to rule out any neurological reasons for the vomiting. We aren't going to wait for that and are starting Sam on the combination of medications that Bo is receiving to see if it helps. If it does we will cancel the MRI as it is really hard on him to have to be put out for another useless test.

We have moved Sam's TPN cycle down to 14 hours which gives him 10 hours a day TPN free. He will now be getting hydration while he is napping. This leaved him connection free for most of his awake time every day.

We spent the past weekend in Chicago with Bo's family. (For those of you who do not know, Bo also has Microvillus Inclusion Disease) It was nice to get away from normal life for a few days and spend a day with another family who has had such similar experiences as we have. They are such a huge help to us and it was good to see them, hopefully we will be able to see them more often in the future.

Jose, Bo, Kinn, Ryan, Deb, and Sam hanging out at the Museum of Science and Industry. Having all boys makes choosing exhibits so much easier. Trains, Trains, Trains...

Kinn, Bo, Deb, and Sam. Not bad for two boys who weren't supposed to live... Amazing what a little love and a lot of Omegaven can do.

Sam didn't really show much interest in Bo, except to use his butt as a pillow.