Wednesday, April 30, 2008

WEDNESDAY, APRIL 30, 2008 03:25 PM, CDT

We so seldom get to post a lot of good news on the site, but today Sam weighs 5 lb 6 oz! All of the additional fluid he is getting has defiantly had an impact on him and he is looking much better today. His big blue eyes keep saying "Feed Me" to us all day long which means he must be feeling better too, even if he can't tell us in words. Sam had a new line inserted today so that they can draw blood from him much more easily. This will hopefully relieve some stress off of him so that they don't have to poke him. They have delayed his MRI and Endoscopy for now as they are waiting for more results from lab work and an analysis of his stool before they move forward with any invasive procedures or doing anything that they would have to sedate him for. They have been having trouble maintaining his Sodium levels in his body and have had to add additional sodium to his diet and are monitoring that closely. They are also mystified by the amount of protein that he is outputting in his urine. Since they know exactly how much protein he is getting each day, and know from his blood test that his body is absorbing the correct amount of protein they can't figure out where the extra protein is coming from. Sam also had a little bought of vomiting again overnight, which is odd because he has not been having anything put into his stomach for him to react to or vomit up. Deb got checked in to the Ronald McDonald house today, hopefully this will allow her to get a little more sleep at night while still being close enough to Sam to be able to visit whenever she wants. Ryan will be headed down to Milwaukee on Friday with us and it will be nice to have a place for him to relax and play as well. Hopefully this will enable us to spend some time together as a family which has been hard to do the last few days.

Tuesday, April 29, 2008

WEDNESDAY, APRIL 30, 2008 01:13 AM, CDT

Today was again very busy for Sam. He now has a Metabolic Specialist, Neurologist, Endocrinologist, Renal Specialist, Gastro Intestinal Specialist, three Therapist, a social worker, a child life specialist, in addition to the other residents, students, and nurses. It is a lot to get used to having all of these people in and out of the room so much and having so many different test done all of the time.

Sam's color continued to be off this morning and continued to be dehydrated. They have increased his fluid intake and are monitoring his output closely to make sure that he takes in more than he puts out. By late this afternoon his color looked better and he was alert, so back to his normal self which was a relief for us. It is a little mystifying that all of this happened yesterday as he had not been eating which was always thought to be the cause of his sickness.

Sam had an ultrasound of his brain today and well as his entire abdomen. Everything looks good as far as physical shape, size and location of all of his major organs. He has, however, developed kidney stones. This was most likely caused my the periods of dehydration he as encountered.

They have also run into serious issues getting blood from Sam for testing. Every vein has either developed scar tissue from being poked so much or is bruised that they actually had to delay some testing today because they simply could not get the necessary blood out of him. Tomorrow they will be changing out his IV for a larger line so that they can use it for his fluid and nutrition as well as blood draws. The drawback with this is that they have to waste some blood each time they use this and he doesn't have much to spare. It sounds like another transfusion may be in his future.

Wednesday Sam will be getting a full MRI. Because he is so little and needs to be still for this they will be sedating him. It will be very scary for us to see him like that but hopefully all of these tests and other stresses we have been putting him through this week will finally lead to some answers.

Monday, April 28, 2008

MONDAY, APRIL 28, 2008 08:38 PM, CDT

Sam has had a busy day today. He was slightly dehydrated again today so they gave him extra fluid when he arrived in Milwaukee. Tonight they just inserted a feeding tube into Sam's nose. He will be getting feedings of Pedialyte continually for now through a slow drip.

We met with two of Sam's doctors today and they discussed what their plan is for Sam over the next few days. They will be doing an endoscopy to check out his innards and make sure they are all intact and look right. We have also discussed a possible biopsy of his intestine so that they can look closely at the cellular make up of his intestines. They are able to save time as most of the inborn metabolic disorders have already been ruled out by all of the testing that was done in Neenah.

It is very different here at the hospital in Milwaukee and will take some getting used to before we are comfortable. We got very used to knowing everyone and everyone knowing us in Neenah and it is just so big here that we know it will not be the same, but everyone is friendly and they are doing a good job of trying to make us feel at home here.

MONDAY, APRIL 28, 2008 10:22 AM, CDT

We just wanted to give everyone a quick update. Deb and I were at the hospital for a few hours this morning and got to see Sam off an his trip to Milwaukee.

He arrived just a few minutes ago and had a good trip in the ambulance.

We also wanted to say thank you again to the entire staff at Children's hospital in Neenah who have taken such good care of Sam, and the rest of us, over the last seven weeks. This mornings departure was very hard for us as everyone there has really become like a second family to us and we will miss you all. It really meant a lot to us to have all of you take a personal interest in Sam and I am sure that we will be talking with most of you again soon to keep you updated on his progress.

Saturday, April 26, 2008

SATURDAY, APRIL 26, 2008 09:56 PM, CDT

We don't really have much to update and probably will not until we get a chance to meet and talk to the doctors in Milwaukee since we won't be trying anything new until then.

Sam had a few visitors today. Jason's Cousin Chrissy came to visit as well as Jason's friends Sara, Chris, and Tyler. He was very alert for long periods of the day today. Sam also got to go for a walk in a stroller around the NICU today and everyone stopped to talk to him and wish him luck in Milwaukee. He definitely loves attention.

Thursday, April 24, 2008

THURSDAY, APRIL 24, 2008 10:01 PM, CDT

Sam is stable again and had a good day today. He was finally up OVER his birth weight last night and was just over 5 pounds 2 ounces.

Sam has lost interest in eating. He has started to gag a lot when they have been feeding him his sugar water. Because of this, and the fact that there is really no nutrition in what he was eating anyway, they have stopped bottle feeding him unless he is acting hungry and interested in the bottle. This allows him to rest when he is sleepy and eat if he is hungry. It is just not worth putting him through the stress of trying to get him to eat if it upsets him.

Deb and I have arranged it so that she will be able to spend his whole first week with him down in Milwaukee. It will be a big change for me not to be able to see him everyday, but at least I know that his Mom will be there watching over him.

Tuesday, April 22, 2008

TUESDAY, APRIL 22, 2008 08:13 PM, CDT

Today was a busy day for all of us. We has a very long care meeting today and discussed many topics. Ryan got to visit with the child life specialist today and she reassured us that at least he is coping with everything that has been going on very well.

Unfortunately Sam is not fairing quite as well. He is almost back to his usual self today, but we still are not any closer to finding out what is really wrong with him after all of this time. Today his doctors, both in Neenah and Milwaukee, along with us have made the decision to move him to Milwaukee. Sam will be transported down there on Monday morning. This move will put him closer to the specialists and give them an opportunity to see him first hand and pull other specialists in more quickly when needed. We will begin by working with a gasrto intestinal specialist. They have prepared us for the fact that we still may have a long road ahead of us. This move is definitely what is best for Sam at this point, however difficult it may be for us to have him so far away from us.

Many of the nurses in Neenah have grown very attached to Sam and have really taken a personal interest in him. It will be very hard for us to let that go and move into greater unknown.

We were really hoping to avoid this move and kept holding out hope that the next thing that they tried would bring us some answers. Deb and I have will both be out of vacation time by the end of next week and are still trying to work out how we are going to try to manage being able to spend time in Milwaukee to be with Sam. Both of us would like to be able to spend as much time down there with him as possible, but we also need to be able to still support our family at the same time and simply can not be in two places at once. We will now just have to try to add another layer to the exhausting balancing act that has become so routine for us.

Deb and I have also begun the process of getting in touch with support groups and counseling to help us deal with everything that has been going on. We have both come to realize this week that we simply can not keep going like we have been the past few weeks and everything just hit us like a ton of bricks over the weekend.

TUESDAY, APRIL 22, 2008 10:56 AM, CDT

I just wanted to do a quick update to let everyone know that Sam is feeling a little better. Since they have stopped feeding him again his blood gasses have returned to normal and his color is better, he was very alert last night.

We are having a meeting this afternoon with one of his doctors, the social worker, and the child life specialist to discuss what the next course of action will be for Sam and we will post another update later today.

Sunday, April 20, 2008

SUNDAY, APRIL 20, 2008 08:52 PM, CDT

Sam had an uneventful night last as we had hoped. Unfortunately we were not as lucky today.

I knew we were headed for bad news when I saw him this morning. His color was terrible, he was very pale, and I could just see that he was not feeling well. His blood gases this morning came back good though and we were hoping that his color just had something to do with the fever he ran yesterday. They also began to have problems maintaining his body temperature today and his temperature kept dropping below normal. Then they did his afternoon blood work.

It turns out that Sam is once again very ill. There was only 12 hours between these two sets of blood work and his blood PH had dropped to 7.20. To give an idea of how drastic this is, a normal blood PH would be 7.41. The last time that they made Sam sick for testing we waited days for his blood PH to drop to 7.28 so they could draw blood while he was in this acidotic state. For him to drop this quickly was devastating for us. To top all of this off his urine output has dropped to almost nothing.

This evening Sam looked possibly the worst we have seen him since the first day that he was admitted to the hospital 40 days ago. Because of the low urine output, they have had to stop administering the antibiotic he was on. Due to his blood PH they have stopped providing the intravenous lipid he was getting as well as removing the simple fat that he was receiving in his diet. Hopefully with these steps Sam will begin to return to normal again on his own. If he doesn't they will help him along so that he can be "healthy" again and they can determine what our next steps will be.

Saturday, April 19, 2008

SATURDAY, APRIL 19, 2008 11:01 PM, CDT

Today turned out to be a pretty rough day for Sam. They had to draw blood from him several times, perform a spinal tap, and he had to have a catheter put in, but it kept slipping out, so that also had to get done a few times. There was no sign of infection in his blood work, but Sam has become Anemic again and required another blood transfusion today.

I was there when several of his procedures were performed today and he definitely let the whole world know that he was not happy. With so much going on his feedings were late a few times today and in general he was very disgruntled all day today. Still no idea why he developed the fever this morning, but they have been able to control it with Tylenol. Hopefully his night will be uneventful and he will get some rest.

SATURDAY, APRIL 19, 2008 11:15 AM, CDT

Today we will start with the good news. Although Sam was a little listless on Thursday and his blood tests were showing some minor variations, he had held steady and not become acidotic. It appears that he can tolerate the simple fat he is getting which means that we can move a step forward at the beginning of next week. He lost a little more weight on Thursday and had dropped back below 5 pounds, but when he was weighed on Friday night he had bounced back and weighed 5 lbs 1 oz again. They have also begun to save all of his bowel movements. They plan to have these analyzed if he becomes acidotic. This way they have samples of every day for him and they can compare them from each date to see what has changed.

The plan is to replace the simple fat he has been getting with a complex fat that is less broken down and then monitor him again for any changes. If that goes well then they will actually replace his Pedialyte and fat with a formula that contains the same type of fat that he will be getting with an amino acid. If all goes well with that formula then Sam will be coming home and be treated on an outpatient basis. Although that is the plan, chances are that he will react at some point to one of the ingredients they are adding.

This morning Sam developed a fever of 103.3. For someone so small a fever that high can be very dangerous. He is not showing any other signs of having any type of cold or flu, so he is having a full blood work up this morning along with another spinal tap so that they can determine if there is an infection somewhere in his body. Due to the various lines that he has had in over the course of his stay here, we have been told that this would not be uncommon. So for now we have another round of wait and see on our hands to try to determine what is causing his fever.

Thursday, April 17, 2008

THURSDAY, APRIL 17, 2008 07:49 PM, CDT

Today Sam lost a little bit of the weight that he gained the day before and his Potassium level dropped a little. It was still within the normal range, but should not be dropping. He seemed very alert and awake this morning.

This afternoon Sam started to get a little lethargic and his eyes started to roll around again like they have the last few times that he started to get sick. This was very mild and could have just been because he was tired, but my gut is telling me that it is more than that. They have ordered more lab work and are monitoring his blood gases more closely now just in case he is getting ill again.

Today was pretty emotional for us, it is very hard to see him getting sick again. The longer that everything drags on, we find ourselves exhausted more often. Even little changes, like today, are getting harder to handle for us.

Wednesday, April 16, 2008

WEDNESDAY, APRIL 16, 2008 05:46 PM, CDT

Sam's PICC line (His IV into his head) began to come loose today and pull out, so they had to put a new line into his arm today. They are still in the middle of the procedure, so I had a little while to do another update while I am waiting for them to finish so I can visit him before I head home for the day.

They also have increased his simple fat intake to four times a day instead of three, and will continue to monitor him for any changes.

WEDNESDAY, APRIL 16, 2008 11:47 AM, CDT

Sam had a good day yesterday and is having another good day today. He managed to gain 50 grams in the last day and is back up to 5lbs 1 3/4 ounces - which for him is a huge gain. His blood work continues to look good and is still getting the simple fat added orally to his diet. His stools are still abnormal and stringy, but they are back to what they were when he was just getting nutrients through his IV. If everything continues to go well they will add a complex fat to his diet and then monitor him for any reaction to that.

Yesterday Grandma, Great Aunt Shirley and Ryan got to spend some time with Sam at a family visit with Deb and I. He was very alert and enjoyed all of the company and being held so much.

Today Grandma is back at the hospital with him for a few hours by herself so that she doesn't have to share him with anyone, which is just the way she likes it.

Monday, April 14, 2008

MONDAY, APRIL 14, 2008 11:23 PM, CDT

Sam's lab results looked good this morning so they went ahead with the plan to begin adding other items orally to his feeding routine.

Today they added an essential oil that will basically tell us if his system is able to digest fats. He is getting just a little bit a few times a day through his feeding tube in addition to his feedings of Pedialyte. He has been eating pretty well, but after the first 20 or so milliliters of Pedialyte he starts to spit it out and make some pretty horrible faces. I don't blame him. If you ever need to give your children Pedialyte, go for the flavored stuff as the unflavored has a flavor and it is not really pleasant.

Not much else new for today, we now need to wait in between each element that is added to his feeding routine to see what type of reaction he has. It will be a slow process, but hopefully this will point the doctors in the right direction to try to determine what exactly is wrong for Sam.

Sunday, April 13, 2008

SUNDAY, APRIL 13, 2008 07:44 PM, CDT

We do not have much to update today, but it has been a few days so we wanted to let everyone know that nothing much has changed. Sam has been eating well and seems to be handling the Pedialyte so far and has been very alert and active over the last few days.

Sam has moved to a crib from his isolete and likes to spend time in his vibrating chair and has several toys to look at when he loses interest in looking out the window. I think it is actually a little harder for us when he is doing so well because he seems so normal and healthy and we just want to take him home.

Sam has another round of labs to go through tomorrow morning. If everything looks good tomorrow they will be adding a lipid or protein to his Pedialyte tomorrow. They will continue to monitor him and watch for adverse reactions. We will keep everyone up to date as we learn more this week.

Friday, April 11, 2008

FRIDAY, APRIL 11, 2008 11:53 AM, CDT

Sam is feeling much better today and his blood PH has returned to normal. He is less fussy today and very alert and seems happy.

Today they have shifted gears a little and are working with a new specialist in Milwaukee that focuses on Gastro Intestinal Issues. They are moving away from Metabolic issues as every test has come back normal and he seems to handle everything OK as long as he gets it through the IV and not orally. Sam is now getting Pedialite orally and if he handles that for a few days they will introduce lipids and protein one at a time to determine where the problem lies.

FRIDAY, APRIL 11, 2008 08:24 AM, CDT

Sam was not recovering as quickly as they had hoped yesterday so they began giving him extra fluids and some help with getting his blood PH back to normal. They are giving him a break for a day or two before they try anything else with him. He has been very fussy and has been demanding a lot of attention from the nurses when we can not be there.

Because Sam has been there for a month now and will most likely be there for some time, they have made an exception for us and are now allowing Ryan to visit Sam. Last night Ryan got to hold his brother and spend some time with him. Ryan got very emotional when it was time to leave because he wanted to stay at the hospital with Sam.

Thursday, April 10, 2008

THURSDAY, APRIL 10, 2008 08:40 AM, CDT

Sam began show signs of recovering from his latest round of feedings on Wednesday. His color is better again and he is more alert. He was very crabby every few hours on Thursday because he is now used to getting food every three hours and was looking for it.

Grandma and Gramps got to hold Sam Wednesday for the first time since he was admitted to the hosptial. Oma also got to hold him for the first time ever earlier this week before she headed back to Georgia.

They are still uncertain what the next step will be with Sam. They are discussing several different options with his doctors from around the country. In any event, it looks like Sam will not be coming home for some time yet.

Tuesday, April 8, 2008

TUESDAY, APRIL 08, 2008 09:21 PM, CDT

Things deteriorated quickly for Sam today. The first sign was at his 3:30 AM blood gases. His blood PH had begun to drop and he was beginning to become acidotic again. At this point everything else seemed OK other than the mild weight loss and the odd stools. At 11:00 AM today he was lethargic, his color had gotten very pale and he had heavy dark circles under his eyes. Sam was awake from 9:00 AM today until almost 5:00 PM tonight and was very agitated. They believe that his body stopped processing the formula and everything was just sitting in his body, causing him a great deal of discomfort. His body temperature is also fluctuating so they are having a hard time keeping him comfortable because he keeps going from too hot back to too cold. They have discontinued feeding Sam again and moved him into a vibrating chair which has at least let him get comfortable enough to fall asleep for the last few hours. He just woke up when we changed his diaper so Deb is spending some time talking to him while I ran out into the lounge to do this update. His color has already improved and he is alert again, although you can still see his eyes wandering a bit.

For now Sam is back to getting all of his nourishment through the IV. They have ordered another formula for him that is broken down further and has no carbohydrates and they will begin feeing him that tomorrow. One of these times we are bound to have some luck and get at least one step closer to taking him home.

Monday, April 7, 2008

MONDAY, APRIL 07, 2008 08:27 PM, CDT

I am not even sure where to begin for today...

First off, Sam is 1 month old today. Happy Birthday Sam!

Sam's blood gases and PH continue to be stable. Unfortunately he is still losing weight. Today they became concerned that his liver may not be functioning properly due to the lack of color and consistency of his stools. They scheduled an ultrasound for his liver right away. They prepared us for the fact that there could be issues with his liver, best case scenario would be something that would require medication or dietary restrictions, worst case would be the need for a transplant. Sam should not be losing weight. His calorie intake from the IV and the formula that he is getting should be more than enough for substantial daily weight gain, instead he has been losing about an ounce a day. Now they just need to figure out why.

They did the ultrasound of Sam's liver and it appears that everything is normal. They did find, however, that he has sludge in his Gall Bladder. At this point the results were inconclusive as to why there is sludge, or what exactly the sludge is, so they will begin to examine this more closely tomorrow.

Deb and I are both mentally and physically drained. Both of us have had our ups and downs, but over the last few days there have been quite a few downs. Everything is starting to get a little overwhelming and, in a way, surreal. It is hard to have to come up to the hospital every day to see him and I think we always leave a little bit worse than when we came in, even when there is good news. Today Ryan told us that he is not a big brother because Sam isn't home yet, he also told my mother yesterday that we left him at our old apartment when we moved... At least we have a 3 1/2 year old to make us laugh once in awhile...

Sunday, April 6, 2008

SUNDAY, APRIL 06, 2008 10:27 AM, CDT

We have a couple days of updates to do, it has been really hectic here with Jason working and trying to get the house in order.

Friday marked a milestone for Sam as, through increases in his nutrients in his IV, he reached his birth weight again.

On Friday we also received the last results back from Sam's latest round of blood work. Once again, everything came back normal. On Friday they prepared us for the best and worst case scenerios. They decided to begin feeding him again, but this time with different formula. Pregestimil is a formula made by Enfamil that is normally used for babies with malabsorbtion problems. It basically is a formula with many of the nutrients and fatty acids already broken down so that the body does not have to work so hard to absorb these essential ingredients. Since they are no closer to determining what is causing Sam to be sick they are hoping that if he can tolerate this formula and can thrive on it that we would be able to bring him home and do further testing on an outpatient basis. Since the only thing he would be eating for the immediate future is formula, we could get back to a normal life and it would buy time for them to determine a diagnosis. On the flip side, if Sam does not tolerate the formula, Dr. Rhead would like to draw more blood and retest everything we have done so far and include a few new tests. Our doctors here do not think that these new tests will show anything as we have done this so many times already. If Sam does get sick again they would like to send him to Milwaukee or Madison and perform a skin biopsy. Here everything gets a little technical, but basically they want to examine the mitocondria in his cells to look for abnormalities that may lead them in the right direction for a diagnosis. They have also would like to do further testing on his liver which may entail a biopsy of his liver at some point.

On Friday at 3:30 pm they began to feed Sam. He wanted nothing to do with it and we had to put a feeding tube back in through his nose. At some feeding after that he did take some formula orally and we have been warned that it make take some time for him to get back into the habit of having to eat.

On Saturday Sam was still willing to eat on and off so some formula is still going in through the tube. Sam' weight had increased slightly and his blood gases still look good. He is alert and awake and very aware of his surroundings. So far so good.

On Sunday morning Sam's blood gases still look good. He lost a little bit of weight since his last weighing and they will be keeping a close watch on that.

We are trying to remain optimistic, but cautiously. The last time we started to feed Sam it took him longer to get sick than the time before. Although he is doing well with food now, that could still change. Because the nutrients in the formula are broken down for him already this could also delay the onset of any symptoms.

Thursday, April 3, 2008

THURSDAY, APRIL 03, 2008 03:39 PM, CDT

No changes for today. We are still awaiting test results and Sam continues to do well as long as he is not eating.

Sam is moving today to a window seat. Since he will still be there for awhile we asked to have him moved over by a window because he always tries to strain to look at the window anyway. Sammy the Seagull comes to visit at that window and knocks on it with his beak, so at least there is a little entertainment once in awhile when we are there.

Wednesday, April 2, 2008

WEDNESDAY, APRIL 02, 2008 02:14 PM, CDT

Sam continues to be happy and healthy today. There has been no change at all in his condition.

We received the results of his urinalysis today and absolutely everything came back normal. There are a few blood tests that we are still waiting for that were sent out to the Mayo Clinic, but they are not really expecting that anything will show on those test as most of them were repeat test.

Dr. Rhead in Milwaukee is stumped, and everyone that he has consulted with from the Mayo Clinic and Bethesda Naval Hospital are stumped as well. There are things that they can continue to test for, but this will mean feeding him and letting him get sick again. What is really baffling to them is that all of the symptoms that he presents don't match with many things that they have not already tested for. The good news is that all of the doctors around the country that have been consulted agree that moving him anywhere else, whether it be to the Mayo Clinic or to Bethesda, would not really benefit him at this point. They all agree that his the care he is receiving would not be better anywhere else and it is more beneficial for him to stay by his family.

They are going to try feeding him with a different formula that has certain thing already broken down in the hopes that they will stumble across something that will trigger more idea on what possibly could be wrong. Without any definite answers we will just continue to wait and see what happens and hope that eventually something will appear that will allow a diagnosis and let Sam come home.

Tuesday, April 1, 2008

TUESDAY, APRIL 01, 2008 06:53 PM, CDT

Sam has had several visitors in the last few days that we forgot to mention. Oma and Opa have traveled all the way from Georgia to spend some time with everyone. Grandma and Gramps also stopped up for visit last night just as Sam's transfusion was completing.

Sam was alert today and seems to be feeling fine. We did get several test results back and they were all normal, these test were expected to be normal so no shocking news there. We should have the rest of his results in the next day or two. The specialist from Milwaukee believes that he is not metabolizing fat properly and is running test on his urine that was taken from his last round of acidosis.

Tomorrow we are going to try to return to a more normal schedule. Jason is going to return to work and hopefully Ryan will return to a more normal schedule as well.