Friday, March 27, 2009

We Are...

...back to normal.

No answers, no reasons, just back to happy go lucky Sam. Could have been a stomach bug, could have been anything really. We are very glad that whatever it was appears to be over. We have not seen the inside of a hospital room in exactly 6 months today! We never thought we would ever go this long without an admission, so we are going to shoot for another 6 and try to make it a full year.

Thursday, March 26, 2009

Confusion

All of Sam's labs are back and ALL of them look better than I have seen them in months. Preliminary results on his culture were negative, but we expected that as there really was no other sign of an infection.

Sam has now been sleeping for almost 3 hours without waking and it has been almost 6 hours since the last shrieking fit. Maybe things are returning to normal?

Tomorrow we will be getting an opinion from Boston as they did not get a chance to review the labs today. They may still want to look further into this which would mean taking a look at his digestive system via a scope and we are really hoping to avoid that.

Hopefully we are headed for a peaceful night, Sam was so exhausted that he didn't even wake up when I changed him into his pajamas and hooked up his IV tonight. Mom and Dad need sleep, Dad needs to be able to function at work tomorrow and Mom will have another busy day of trying to coordinate care from three hospitals in two states.

A Very Rough Night

Sam had a very rough night. While there has been no more visual signs of blood in his vomit, he is experiencing some kind of discomfort that comes and goes.

Last night Sam was awake every two hours, voicing his displeasure with ear splitting screams. These were accompanied with more vomiting fits. This is extremely unusual for Sam as he normally sleeps soundly for 10 to 12 hours at night. As soon as this passed he was happy and went right back to sleep. More of the same this morning. Ear splitting screams to giggles in less than 30 seconds.

Still waiting on more lab results. We also had a blood culture drawn yesterday just to be sure something wasn't lurking without a fever, that result will not be back until late today. Hopefully this will go away or progress to something that we can fix easily and soon. We had hoped that sleepless nights were a thing of the past.

We will post again as soon as we hear anything new...

A Bad Night

Sam had a very rough night. While there has been no more visual signs of blood in his vomit, he is experiencing some kind of discomfort that comes and goes.

Last night Sam was awake every two hours, voicing his displeasure with ear splitting screams. These were accompanied with more vomiting fits. This is extremely unusual for Sam as he normally sleeps soundly for 10 to 12 hours at night. As soon as this passed he was happy and went right back to sleep. More of the same this morning. Ear splitting screams to giggles in less than 30 seconds.

Still waiting on more lab results. We also had a blood culture drawn yesterday just to be sure something wasn't lurking without a fever, that result will not be back until late today. Hopefully this will go away or progress to something that we can fix easily and soon. We had hoped that sleepless nights were a thing of the past.

We will post again as soon as we hear anything new...

Wednesday, March 25, 2009

One Of Those Days...

Something told me this morning when I woke up way too early and still managed to almost be late for work it was going to be one of those days.

We frequently deal with Sam's vomiting issues, several times a day, several times a night. We have been working to control his stomach acid in hopes to reduce these and we have seen some improvement lately. Then today Sam's vomit took on an odd shade of reddish brown.

After rushing home from work to take Sam into the doctor, having his vomit test positive for blood, rushing to the hospital to have labs done, we don't really have any clear cut answers. So far his labs look good. His Iron Dextran infusions seem to be helping his anemia as his Hemoglobin, Hematocrit and Platelets are closer to normal than we have seen in a long time. This is also good news because it indicates that he has not been loosing a lot of blood into his digestive system.

It could just me a minor irritation in his digestive system that was bleeding, it could be other things. Once all of the labs are back we will discuss whether to continue to monitor for changes, schedule a visit to Milwaukee for more testing, or make an unplanned trip to Boston.

Tonight everything seems fine again and we are hoping that this is just a little blip that will remain unexplained. If we find out differently we will be sure to update as soon as we can.

Monday, March 23, 2009

Crawling, Teeth, and Growing...

In the two weeks before Sam's recent trip to Boston he gained two pounds and by the feel and look of him, we may have gained another pound this week. Sam was up to 17 lbs 1 oz at our nurse visit last week. We started Sam on Iron Dextran infusions a few weeks ago and so far his Hemoglobin has held steady and actually improved just a little bit. We are also trying a new medication to help with his acid reflux which, today, seems to be helping.

We have also gained two more teeth which Sam spends his days grinding. I have decided that grinding teeth is the worst noise in the world.

Sam has also decided that he is done with the pacifier. It started during the day, and now he won't take it at night or at nap time either. This is fine with us as we were envisioning a very horrible transition when we moved away from it.

Sam is very mobile now and goes wherever he wants, or at least he tries. We definitely can not turn our backs for a second or he is at the end of his line.

That is all of the Sam news, not much else going on right now. We are getting ready for a busy summer of remodeling the outside of the house and front yard and have a lot of work ahead of us for the summer, hopefully the weather cooperates.

We also wanted to let everyone know that we added a little girl named Faith to our Little Wonders section today. Faith is on her way to Boston Tuesday morning where she will hopefully become another Omegaven miracle. Her family has gone through a lot in her short life and we are very happy that they are on their way to visit Dr. Puder and the team in Boston.

Wednesday, March 11, 2009

One Year Ago Today...

Today has been trying. Besides another trip to Boston, today marked the day when Sam was admitted to the NICU. It is so hard to think back to that day, think back to what Sam looked like that morning. We cried for hours, and it was one of the days that we thought for sure that Sam was not going to make it through the night.

Today also marks the day when we met some very special people. It is good to think back and remember meeting Katalin Szaniszlo, MD (Dr. Kate), Paul R Myers, MD (Dr. Paul), and Abraham J Liebeskind, MD (Dr. Abe). They, along with the rest of the team at the NICU (ALL of the nurses, the social worker, and child life specialist) went through so much with us a year ago. THANK YOU to all of you for everything that you did for Sam and our family. You are a spectacular group of people and we have not forgotten, nor will we ever forget, any of you.

RSV season is almost over and we are looking forward to being able to attend a NICU reunion pizza party again soon.

Jason & Deb

PS Deb and Sam made it to Boston safely and I have a report that Sam got tired of his usual scooting today and decided it was time to all out crawl!!

Monday, March 9, 2009

Not A Fan Of Cake

We just wanted to do a quick post and thank everyone for that was able to make it to our home over the weekend to share Sam's big day. Sam had such a good time.

He is, however, not a fan of cake.

Not really a fan of anything that you try to put in his mouth these days. I am pretty sure he thought we were all crazy and seemed confused when everyone started singing.

Deb and Sam are headed to Boston on Wednesday for a check up. Hopefully we can avoid any stowstorms again this time...

Friday, March 6, 2009

The Boy Who Lived...

We have made it to a day that we were told many times might not be possible. 10 months ago we were certain we would never see Sam's Birthday.

So much has happened over the last year, so many highs, so many lows. It has been a journey that has changed our lives forever. We could not have done it without the help of all you.

We have a big day planned for today, we will get pictures and video posted as soon as we can.

Please check back after 2:00 PM today as I will be uploading a special video on our home page.

HAPPY BIRTHDAY SAM!!!!