Monday, March 31, 2008

MONDAY, MARCH 31, 2008 09:45 AM, CDT

Sam finally developed a high enough level of acidosis on Saturday afternoon so that they could draw blood to do his next round of testing. We will hopefully have some answers from this round of testing by the end of the week. Other than that not much has changed. Since they stopped feeding Sam on Saturday, he has returned to his normal self and is very alert and looks healthy. He has managed to gain back some weight and is up to 4 lbs 13 oz.

Because they have drawn so much blood from Sam over the last three weeks his body can not keep up with the demand so he is having a blood transfusion today.

We will not have internet at home until tomorrow, so we will probably not have any new update until late in the day Tuesday.

Friday, March 28, 2008

FRIDAY, MARCH 28, 2008 03:57 PM, CDT

Sam has developed a new symptom that he did not have before and has been vomiting quite a bit and his stomach is also not digesting the food that they are giving him which did not happen last time. He was not at the level that they need him to be yet this morning so they will continue to feed him today.

We had a care conference today with the social worker, doctor, etc... They reviewed with us everything that they have done up until now and what they plan for the future. They are now working with a specialist from Milwaukee, Dr. William J. Rhead, who is one of the top genetic & metabolic diseases specialists in the state. He believes that there is something that Sam's body just can not metabolize and the next round of tests will help narrow down where the problem lies.

They did bring up today that there is still the possibility that Sam may eventually need to be moved. Right now they are keeping him in Neenah as they do not see a benefit of having him in Milwaukee. Depending on what the current round of test show, or do not show, they have made mention that he may need to be moved to the Mayo Clinic in Rochester.

Thursday, March 27, 2008

THURSDAY, MARCH 27, 2008 10:30 PM, CDT

AS we expected, Sam's condition worsened throughout the day today.

We spent a few hours holding him this morning and we was awake for a few minutes at a time this morning, although he was not very alert. He ate the first few feedings very well, but now is not really awake enough to eat on his own, and when he is awake he has no interest in eating. This morning they has to insert a feeding tube, again, so that they can continue to feed him until he is sick enough to draw blood for further testing. Hopefully by tomorrow morning they will be able to stop feeding him.

It is strange how fast he changes when they start feeding him, he just doesn't look like himself and tonight when I went in to say good night I could only bear to be there for a few minutes. We have avoided being at the hospital during feeding times as it is just to difficult to watch. Even Sheri, one of Sam's nurses, told us this morning that feeding him was difficult for her.

Something that did brighten our day a little today, the nurses at Children's Hospital have begun to fight over who gets to take care of Sam. They have become quite attached to him and a few of the nurses have friendly arguments at the beginning of each shift about who gets to be in his room so they can spend the day with him.

We may need to take a short break from updating the site for the next day or two. We, of course, had no idea what this month would bring to our lives and have to be out of our apartment and into our new house by the end of the month so we hope to finish packing on Friday and have everything moved on Saturday.

Wednesday, March 26, 2008

WEDNESDAY, MARCH 26, 2008 07:50 PM, CDT

Today was a tough day. We are back to square one with Sam as every test that has been run has come back with normal results and they are not any closer to determining what is wrong with him.

Now they are faced with a new problem. In order to try to determine what is causing Sam to be so sick, he has to be sick. Since he has not been fed since last week he appears to be completely healthy right now, they will need to start feeding him again and make him sick so that they can run tests to try to find the cause. They began feeding him again this evening and we will have to watch him deteriorate over the next day or so. Most likely he will very quickly begin to lose weight and his color will go back to the unhealthy shade that is has taken a few times before. He will also become very lethargic and will not be awake very much over the next few days.

They have decided to keep Sam here in Neenah as they are already working with the specialist in Milwaukee and they do not think he will benefit from being down there.

So for now, we will wait some more and hope that something will show up in the next round of tests.

Tuesday, March 25, 2008

TUESDAY, MARCH 25, 2008 10:47 PM, CDT

Sorry for the late update, we were waiting to see if one more test result came back and took a few hours to work on the house.

We received most of Sam's results back today and every one of them came back normal. We are waiting for one more test result to come back yet.

Since everything so far has come back normal and they are waiting on the last test, they have not made the decision yet on when or if he will be moved to Milwaukee.

At this point we are ready to deal with whatever is wrong with Sam, the waiting and more waiting, and still not having answers is killing us.

Monday, March 24, 2008

MONDAY, MARCH 24, 2008 06:46 PM, CDT

Unfortunately Sam's test results were not back from Milwaukee today. He was very alert today and has been smiling a lot.

Tonight we are going to try to swindle the nurses into letting Ryan onto the ward to see Sam.

We will update the website tomorrow as soon as we hear anything.

Sunday, March 23, 2008

SUNDAY, MARCH 23, 2008 06:55 PM, CDT

Happy Easter.

We really do not have much to update today, Sam continues to be alert and looks happy again today.

Yesterday Uncle Todd and Aunt Tanya came for a short visit and they also stopped in today again. Grandma came to visit yesterday too.

We are expecting Sam's test results back tomorrow and we will hopefully have more information to share with everyone then.

Friday, March 21, 2008

FRIDAY, MARCH 21, 2008 10:36 PM, CDT

Not much new today. Sam is stable again and you can tell he is feeling much better now that they have stopped feeding him again. He was very alert with a lot of smiles today. We are not expecting any change in him over the weekend. As long as he continues like he is they will not change any treatment until they get the results back from his latest round of tests, which will hopefully be on Monday. At that point they will either have figured out what is wrong with him or they will be moving him down to Milwaukee.

Thank you again to everyone who has lest messages, sent emails, etc... Deb and I also wanted to give a special thank you to everyone at School Specialty who have been so supportive and understanding while Jason has needed to be off of work.

Thursday, March 20, 2008

THURSDAY, MARCH 20, 2008 05:50 PM, CDT

Today was a downward spiral for us. Sam has developed symptoms of MSUD again. He was very lethargic overnight and this morning, he is acidotic (which basically means that the PH level of his blood is too low), and his sweat smells like burned sugar again. After consulting with the metabolic specialist in Milwaukee today, they have ordered a new metabolic work up for Sam. We should have the results back on Monday. Their thought is that at the time they drew the blood for the first test he had not really eaten enough for the test to show positive. The blood for the second test was taken shortly after he was admitted to the ICU. At that time they were administering bi-carbonate to him to help raise his blood PH and they think that this may have caused a false negative. If this next test comes back negative again Sam will be moved to Children's Hospital in Milwaukee so that he can be closer to the Endocrinological specialists. Hopefully they will be able to determine what exactly Sam's issues are and we can start to move back towards a normal existence.

On the bright side of things, Sam has made some improvement throughout the day since they stopped feeding him again, he has been more alert and he appears to be feeling much better.

THURSDAY, MARCH 20, 2008 12:49 AM, CDT

Sam has decided that he doesn't like to eat. Each time that we have tried to feed him today he makes the most horrible face imaginable when the formula hits his tounge. Anything that he gets into his mouth he just spits right back out. Because of this they had to put a feeding tube in through his nose today so that we can at least get the formula into his stomach and make sure that everything works the way it should.

Tonight Jason went in to do Sam's 11:30 PM feeding and still no luck getting him to eat. He acts hungry and looks like he is ready to eat but just doesn't want the formula. We have decided to go with straight formula for Sam because then we know for sure that he is getting the same thing each time and it eliminates any thing that could be caused by what Deb is eating being passed through her milk.

So far everything looks good and Sam has not developed acidosis since he has started getting formula. Deb and I have noticed a few things that concern us, but the doctors say that everything looks good. Unfortunately they were not at home with us the night before he was admitted and for Deb and I we are getting a little Dejavu. Hopefully we are just being overprotective and a little paranoid.

THURSDAY, MARCH 20, 2008 08:59 AM, CDT

Like I said in my last journal entry from last night, our gut told us that everything was just not OK. Our favorite nurse, who hasn't been in for a few days, noticed right away when she came in today that his color had changed from over the weekend. When they did his blood gases this morning they saw serious deterioration in his ph levels.

They have stopped feeding him again and removed his feeding tube. They are in the process of drawing blood for a new series of tests to try to determine what is causing this to happen.

They have prepared us for the fact that if they can't determine from the new labs today what is happening they will have to move him to Children's Hospital in Milwaukee. It has been very hard so far to even have him a few minutes from home and I can't begin to imagine how we will handle having him so far away.

Tuesday, March 18, 2008

TUESDAY, MARCH 18, 2008 10:54 PM, CDT

Things continue to look up for Sam. He has now been getting protein in his IV for a full 24 hours and so far so good. He is graduating to formula tomorrow morning at 8:30 AM. Hopefully he will continue to show no signs of illness and have a healthy appitite so we can bring him home soon. After a full 8 days in ICU his big brother is anxiously awaiting the day that he can hold him.

Monday, March 17, 2008

MONDAY, MARCH 17, 2008 10:42 PM, CDT

First we wanted to say Thank You everyone for visiting this site and offering support. It really means a lot that there are so many people actively checking on Sam's status everyday.

Today was filled with good news and new uncertainty. They have now tested Sam for MANY different metabolic diseases and so far every test has come back negative. Sam has stumped all of his doctors and they have no idea what is wrong with him, basically they can't find ANYTHING wrong with him. This is great news and we are trying to treat it as such, it just leaves much to question.

Since all of the test results continue to come back negative, today started a new approach for him. At 5:00 this evening they added protein back into Sam's IV. They will continue to monitor him and watch for any changes to his blood gases. If all goes well and he is not showing any signs of acidosis by Wednesday then they will start giving him formula. If he still has no problems and gains weight we may be able to take him home by the end of the weekend. Hopefully things will progress this way for him. This would, of course, further baffle his doctors as we may never determine what caused his symptoms to begin with and it may forever be a mystery.

Sunday, March 16, 2008

SUNDAY, MARCH 16, 2008 08:33 PM, CDT

Today was pretty uneventful for Sam. His lab results from Mayo have not arrived back yet, but hopefully tomorrow. We did get a few results back from the local lab. They had tested his poo, because it was an odd consistency, but everything there came back normal and was probably caused by the antibiotic he was on when he was first admitted.

Sam was awake and alert for a few hours on and off. His Great Uncle Terry and Great Aunt Gigi came for a visit. We spent a few hours rocking him today - it is nice to be able to hold him again. We may get to help with a bath tomorrow. They are also now letting us put a few drops of sucrose on his pacifier every once in ahile. It doesn't do much for his hunger, but at least he gets to taste something.

Tomorrow will be a busy day as the test results should be back and they should be able to determine what we can start feeding him. We are also supposed to close on our house tomorrow and are anxious to get things done there and start moving.

Saturday, March 15, 2008

SATURDAY, MARCH 15, 2008 07:41 PM, CDT

Not much has changed today. Sam is still stable and doing well considering that he is not really getting much nourishment at the moment. He lost a little weight in the last day (about 1/2 ounce).

Sam did start displaying another symptom of MSUD today. Everybody knows what a new baby smells like - not Sam. Just holding him on your lap you are able to smell the "burned sugar" smell that his sweat has. Definitely one of the most peculiar things we have seen thus far, other than the urine that smells like maple syrup.

We may have test results tomorrow, I think we have prepared ourselves for the worst and are hoping for the best.

Friday, March 14, 2008

FRIDAY, MARCH 14, 2008 09:30 PM, CDT

They were able to remove the arterial line out of Sam's arm today. This had been in so they could draw blood whenever they needed to without having to poke him. They also removed the tube that was going into his stomach as they are not able to feed him, so it was not beneficial to be there.

His IV line that keeps him hydrated clotted last night. With him being so small and having so many veins already used, they had to place an IV line into a vein in his head. Luckily we didn't have to loose any of the thick hair he has.

Today Sam got a visit from his big brother. Due to it being cold and virus season in Wisconsin, Ryan is not allowed onto the ward. He got to see Sam through a small window and, being 3-1/2, Sam kept his attention for about 3 minutes.

Sam's Grandma, Gramps, Nanna, and Great Aunt Margie also came to visit today. Jason's cousin Kim and her husband Mike also stopped in for a visit.

Today was again bittersweet. With some of the lines removed from him we are able to hold him again for short times. We was awake for almost 2 hours tonight and it was nice to see him alert. Unfortunately he roots for food whenever he is held. This was especially hard for Deb as she began leaking and Sam could smell food. We will hopefully have the results of his tests back in the next two or three days and finally be able to feed him again.

Thursday, March 13, 2008

THURSDAY, MARCH 13, 2008 06:30 PM, CDT

Today was a roller coaster. Sam was moved out of an isolation room today and is now in the general population in intensive care. They have ruled out any infectious disease so he is no longer a threat to the other babies on the floor.

We had both let our hopes raise a little yesterday and were counting on something simple, like an infection, to be the cause of Sam's illeness. That has now been ruled out and they are focusing on strictly metabolic issues at this point.

The results will not be back for several days from the Mayo Clinic. Until they can determine what level of disease he has and what his body will be able to process he can not eat.

We shed a lot of tears today. We are still not able to hold Sam and spent a lot of time sitting by his side with a hand through the little window in his bed, holding his head or hand.

Wednesday, March 12, 2008

WEDNESDAY, MARCH 12, 2008 10:53 AM, CDT

A small sense of relief today. The blood test from the state has come back negative for MSUD. A blood culture is showing signs of a possible infection. His weight has come back up to 4 pounds 4 ounces due to being well hydrated. The doctor is being cautious and tells us not to believe the negative result of the states test, she says that the blood they draw for the test is taken too soon after birth and that they have already sent another batch of blood out to the Mayo Clinic to be tested. She is also convinced that the blood culture was contaminated as he is not showing any signs of infection.

We can not help but hope that the doctor is wrong, she is still stating that she is 90% positive that he has MSUD.

Tuesday, March 11, 2008

TUESDAY, MARCH 11, 2008 06:45 PM, CDT

You can not believe the difference in Sam in just a few short hours. They have stopped feeding him, and will not be able to start again until they can say for certain what is wrong with him. Keeping him hydrated and off protein has made a huge improvement for him. He looks healthy again. We have been spending short amounts of time in the room with him. It is very difficult to be able to see him and not hold him. He has tubes running into his body all over and there is so much equipment attached to him you would think they are building a bionic baby.

TUESDAY, MARCH 11, 2008 03:45 PM, CDT

Today we have received word from the doctor that Sam has many of the symptoms of a metabolic disorder called Maple Syrup Urine Disease. This is something that is tested for by the State of Wisconsin at birth, so we will hopefully get the results of that test back quickly.