Thursday, May 29, 2008

THURSDAY, MAY 29, 2008 11:50 PM, CDT

Wow! We are all finally home. Though there were a few hiccups on the way, we all made it. Now it gets real. There were some wonderful moments (Ryan sang 'Itsy, Bitsy Spider' to Sam) and some frustrating ones (pooping right after a diaper change, again and again. *smile*) We are working on learning even more about his care and getting back to a some what normal routine, at least what will be normal for us from now on. Sam seems very interested in the cat and vice versa.

Our days suddenly seem much more full. Between the 30 diaper changes a day (no exaggeration there - and each change actually uses two diapers), keeping up with all of Sam's medical care, making sure that Ryan is still the most important person in the world in his eyes, and everything else, we barely have a minute to breathe, or sleep, or eat. Even before today I think the most frequent phrase you here around us is 'What day is it?'. By the end of this week we may be asking each other what our own names are, but at least we are finally all here together which is the only thing that matters to us right now.

Wednesday, May 28, 2008

WEDNESDAY, MAY 28, 2008 06:16 PM, CDT

Although we won't believe it until we are there, we have been given the official word that we are set to go home tomorrow unless there are any complications between now and tomorrow morning.

Today was incredibly busy. We met with so many people today to finalize our education and make sure that all of our concerns were addressed before going home.

We were also overwhelmed today by the entire staff of the 7W Infant Unit at Childrens Hospital. Thank You to everyone for the unexpected and extremely generous gift. We definitely appreciate the support and can put your gift to good use (as those of you who have ever cared for Sam can most definitely attest to). It means so much to us that everyone has grown so attahced to Sam and taken such a personal interest in Sam and the rest of our family. Thank You, Thank You, Thank You!

Sam's new website is almost finished and should be up and running by the weekend. It will be nice for us to be able to share more photos and add some home videos for everyone to see.

Tuesday, May 27, 2008

TUESDAY, MAY 27, 2008 07:12 PM, CDT

Today was a little mind boggling, but we got through it. We will not be going home tomorrow as there is still some concern about Sam's sodium level when he is off of his replacement fluid for 4 hours and they have made an adjustment to his TPN. They will need to check his blood work after his off cycle tomorrow so we will need to be here for one more day.

TUESDAY, MAY 27, 2008 09:41 AM, CDT

Sam got caught up on his vaccinations yesterday without any issues so we are still clear to leave the hospital tomorrow. Yesterday we spent some time unpacking Sam's bedroom, cleaning the house, and playing outside as a family. Ryan had a blast being at home with Mom and Dad.

Today we have a care conference scheduled to discuss the plan for tomorrow and to go over any questions that we have regarding his care. We are very anxious to get home, but terrified at the same time of all that we need to learn and manage at home. I am sure that within a few weeks everything will be second nature to us.

Sunday, May 25, 2008

SUNDAY, MAY 25, 2008 07:52 PM, CDT

Sam was feeling better today, his tummy was much softer and not so full. We got to spend a few hours walking around the hospital and The entire family got to sit together in the cafeteria to eat lunch today.

Sam's weight was 7 pounds 6 ounces today, so we are still slowly but surely growing and gaining weight.

The next few days will be busy preparing to go home. Tomorrow Sam is going to get caught up on his vaccinations so that will be one less thing we need to take him out for once we get home.

Tomorrow we are heading to Appleton for the day to finish getting Sam's room unpacked, cut the grass, and clean up a months worth of dust that has been collecting on everything. This way we can hopefully spend some time relaxing when we get home in between all of Sam's needs.

Saturday, May 24, 2008

SATURDAY, MAY 24, 2008 02:56 PM, CDT

We have had a little bit of a set back the last two days, but it will hopefully not prevent us from going home on Wednesday.

Sam needed to have another blood transfusion last night. They have completed an Iron absorption test on him and it appears that his body will absorb Iron when he takes the supplement orally. His Iron levels were good before and after the transfusion, but there were other issues that he has been encountered (which I do not understand enough about to begin to try to explain) which caused him to need this transfusion. They are concerned that due to his repeated transfusions he may continue to encounter problems and require more. The was that they described it is that his bone marrow is getting lazy because it has not needed to do it's job in awhile due to the transfusions he has repeatly gotten, so we may have to battle with this problem for while.

Sam has been spitting up a lot and been very gassy since yesterday. This is making him uncomfortable and very cranky. What he is spitting up is mostly stomach acid, so it looks like we will have some Acid Reflux to deal with as well.

On Tueday we will begin to learn how to manage Sam's care at home. Wednesday we will be driving Sam back to Appleton and meeting with our home care company to get all of our supplies organized and set up his equipment at home. We have a lot to learn to manage this on our own at home, but we will have some help from home nursing and always have others we can call for help if needed. I think we would be more nervous if we did not have Theda Clark just a few minutes away in case we need to get him to the hospital in a hurry.

Thursday, May 22, 2008

THURSDAY, MAY 22, 2008 04:51 PM, CDT

Sam continues to do well with his TPN nutrition and replacement fluids. His weight is still hovering around 7 pounds and fluctuates a little each day.

The weekend and beginning of next week will be busy for us as we will need to learn all about taking care of Sam, his lines, pumps, fluids, etc...

Everything is going well and we are still on track to take Sam home on Wednesday of next week.

Wednesday, May 21, 2008

WEDNESDAY, MAY 21, 2008 04:44 PM, CDT

The last few days have been a whirlwind of activity.

There was some talk of trying Sam on a drug called Octreotide to help reduce the amount of fluid loss that Sam experiences in his stools. After much research and debate they have decided that this is not a good option for Sam right now. Octreotide is not really meant to be a long term drug, and the longest that have had anyone on it in Milwaukee was 6 months. Sam really would not get any benefit from it other than a reduction in his stool output, and the relative reduction in fluid intake needed.

Sam is anemic again, basically because he just isn't getting any iron. Most babies would get formula fortified with Iron, but since Sam doesn't ingest much formula he is not getting enough Iron. On Friday he will have an Iron absorption test to see if Iron administered orally is absorbed my his body. If it doesn't absorb than we will need to rely on an infusion of iron into his bloodstream to supply him with the necessary Iron. There are some risks with having to do this, but it is still much less risky than having to do repeated blood transfusions as we have had to do up until now.

We will be bypassing Children's Hospital Fox Valley on our way home (sorry everyone). The original plan was for Sam to spend a few weeks in Milwaukee, then transfer to Fox Valley, then head home. This week they have decided to send Sam home directly from Milwaukee. They are still working to finalize all of the details with our home care company, but it sounds like we will be heading home on Wednesday of next week. Things are going to be a little more complex for us than they originally thought, but we will manage and be glad to have everyone back home.

Monday, May 19, 2008

MONDAY, MAY 19, 2008 10:25 AM, CDT

Sam hit a milestone today and weighs 7 pounds 2 ounces!

We really don't have much to tell everyone. The doctors continue to monitor Sam's output so that they can come up with an average fluid intake he will need when he goes home. The are hoping to make thing as simple as possible for us by being able to administer the same amount each day and not have to weigh each diaper to track his fluid loss.

It is a little scary to think about going home soon and having to do all of his care without a nurse or doctor looking over our shoulder to make sure we are doing everything correctly. We have already been told that within a few months we will know more about his care than any doctor we see and will usually have to tell them what to do for him.

If nothing else, Sam has sparked a lot of interest here at the hospital. Everyone we talk to has never heard of this disease until Sam, and as far as anyone here knows this is the first time they have ever seen a case of this at this hospital. Unfortunately that means a lot of unanswered questions for us. I think the doctors cringe a little when we have new questions because we have moved past the ones that they can answer and there is a lot of unknown due to the rarity of this disease. I am sure that it is not a good feeling for them when they have to tell us they don't know the answers to our questions and there will need to be a lot of "try this and see what happens" with Sam.

Monday's are always the most difficult day of the week for us. The weekend at least allow us to all spend time together here in Milwaukee, but tonight Jason will head back to Appleton to go to work, and Ryan will head to Grandma and Gramp's house so he can help keep them sane (or at least keep them from becoming any more insane). It is rough having to go our seperate ways each week and, even with all of the new things we will need to learn and incorporate into our lives, we will be very happy to be home together as a family 7 days a week again soon.

Saturday, May 17, 2008

SATURDAY, MAY 17, 2008 09:37 PM, CDT

Sam had a good day today. They continued with cycling his TPN and his fluid intake today so we got to spend some time with him with no wires or tubes attached. Sam also got to go for a stroller ride off of his floor for the first time today. Ryan was thrilled with being able to push his brother in the stroller finally.

It sounds like they are hopefully going to plan on moving Sam back to the Fox Valley in about a week. It will make it so much easier to have him close by us. Deb will enjoy sleeping in her own bed for the first time in a month, and all of us will be glad to be back to some familiar surroundings.

Friday, May 16, 2008

FRIDAY, MAY 16, 2008 04:33 PM, CDT

6:36 PM Update to below journal entry:

Sam has come out of surgery and is doing fine.


They have continued to cycle Sam's fluid and TPN intake today and so far so good. Sam is not showing any adverse reactions to this, so we are one small step closer to going home.

We are hoping to have Sam moved back up to the Fox Valley as soon as possible so that we get get things back to as close to normal as possible and begin a routine for our new normal.

Sam was just taken into surgery a short while ago to have his new Broviac central line inserted into his chest. This new line will help reduce the chance of infection developing and will be used to deliver his nutrition and fluids as well as blood draws that will be a frequent part of his life. The surgery is pretty routine, but like any surgery, there are still risks involved, especially with someone so small.

Once this surgery is complete and his insertion point begins to heal, we will be able to have a rough timeline of when we can expect to return home.

Thursday, May 15, 2008

THURSDAY, MAY 15, 2008 10:38 PM, CDT

Sam was able to go off of his TPN for 4 hours this morning with no problems. He was still getting fluid through his IV during this time, and they will slowly start to remove those as well a little at a time. The goal is to completely cycle him off all of his IV nutrition and fluids for a few hours each day. This will let him have a few hours of 'untethered' time each day as well as giving his liver a break.

Sam's weight was up to 6 pounds 12 ounces today.

We are still trying to stay pretty positive and are holding up pretty well considering the circumstances. It is easy to think of all of the things that Sam will never do, so instead we try to focus on the things that Sam will be able to do. There is a sign on the well next to the front door at the Ronald McDonald House that simply says 'One day at a time'. We don't have much choice but to take everything one day at a time right now and enjoy every moment of every day that we get to spend with Sam and watch him have new experiences, learn, and grow.

Wednesday, May 14, 2008

WEDNESDAY, MAY 14, 2008 05:03 PM, CDT

Sam was very happy today. Because they have now figured out what exactly is making him sick and he is getting the correct amount of fluid and nutrition from his IV, he is allowed to eat. Eating for Sam is really just for fun. Sam can eat as much or as little as he wants of whatever he wants as the food he is eating will have no nutritional value for him. He started smiling a lot today after he got to eat, I guess having a full belly feels good even if it works its way out through the other end pretty quickly.

Tomorrow they will also be experimenting with shutting down all of Sam's intake of fluid and nutrients for a few hours. The plan is to have all of his fluid intake and nutrients delivered over 20 hours instead of 24 so that his liver can take a break for a few hours each day. This will hopefully lessen the effects on his liver and lengthen the time that his body tolerates the TPN.

On Friday Sam will have surgery again to place a more long term central IV into his chest. This will be more stable and in an area that is less prone to infection than his current line that is in his groin. This line will need to be changed as he grows, but as long as it is infection free can remain in for some time. This line will also allow for the large amounts of fluids that Sam will need to get intravenously.

Tuesday, May 13, 2008

TUESDAY, MAY 13, 2008 08:26 PM, CDT

We have put off this update for long enough today, so here it goes. We finally have a positive diagnosis.

Today Sam was diagnosed with Microvillus Inclusion Disease (or Congenital Microvillus Atrophy).

I have added two links to the "links" section of the website which give more information on this disease. Basically Sam's intestines do not work and, unfortunately, they will not ever work. There is not currently a treatment or medication that they can use to make Sam better. Sam's complete nutrition and fluid intake will need to come from an intravenous line for the rest of his life. Our only other alternative is to consider a intestinal transplant. While we will be making arrangements to visit one or two transplant centers in the next few months, an intestinal transplant will most likely not be a good option for Sam for the time being. Being sustained by his TPN (This is the fluid he receives in his IV) he will be able to live a mostly normal life. He will be able to play outside, play, and do most things that any other kid can do. Intestinal transplants are relatively new and very risky. The chances of Sam surviving the transplant with out any severe complications are very low. TPN poses its own risks, the TPN may eventually damage Sam's liver. Hopefully his body will tolerate being supplied all of his nutrition through the TPN long enough for their to be breakthroughs in the transplant field.

Sam will be in the hospital in Milwaukee for at least a few more weeks while they get a feel for exactly what needs to be supplied to him daily through his IV. After that we will most likely be headed back to Neenah for a few more weeks in the hospital there. We have requested to move him back so that we can be closer to home and are hoping that all goes well enough that this can be sooner rather than later.

Once Sam's input and output are under better control and we learn how to manage his care, we will be taking Sam home.

Tonight I don't think we have much else to say. We are still trying to absorb everything and it probably really hasn't hit us yet. We will continue to post updates to Sam's site every few days for now, and will probably keep this site up with weekly update once we head home.

Thank you again to everyone who has been so supportive so far, it means the world to us to see people visiting the site and keeping up on Sam's progress.

Monday, May 12, 2008

MONDAY, MAY 12, 2008 10:43 PM, CDT

Sorry for the late update, we know a lot of people were anxiously awaiting some results today right along with us. Unfortunately we don't have any news. We are still awaiting the final results from all of Sam's biopsies and the new round of tests from his Auto Immune tests.

Due to the large amount of blood that they have had to continue to draw from Sam, he will most likely be getting his 5th blood transfusion tomorrow.

Sam continues to look good, just a little bit pale today after they drew all of the blood for the new round of tests. He was pretty sleepy this morning, but was very alert and awake during his physical therapy today.

Sam's weight continues to hover at around 6 1/2 pounds, and the new pictures I posted today really show his 'new' cheeks that developed last week.

Saturday, May 10, 2008

SATURDAY, MAY 10, 2008 03:48 PM, CDT

As expected we really have not had much going on the last few days. Sam has been feeling fine and been alert for long periods of the day. Since he has been feeling better he has spent some time with the physical and occupational therapists who are helping to get him to "catch up" to where he should be developmentally. He is learning how to hold small objects and is getting very good at following items with his eyes.

We received back some preliminary results from Sam's biopsies today. We will not have any final results until Monday, but so far his biopsies have not shown any definative answers as to what is going on with him. The GI team had a pretty large list of things that they were looking for, and it looks like Monday's results may rule out many or all of the diseases they were suspecting. They are still continuing to work closely with the genetic and metabolic specialist as his symptoms fit so closely with a malabsorption disorder. We also learned a little more about his intestines. While they still do not know what is causing the "flat-gut" in his small intestines, they are hopeful that this may be able to heal itself with treatment once a diagnoses is made. Because it is starting to look like most of the GI diseases will be ruled out when we get the results on Monday, they have not called in another team of doctors to begin a work up on Sam. There are several auto-immune disorders that could potentially cause issues that Sam is experiencing so the auto-immune group is doing a full work up on Sam. They will be pulling a blood sample on Monday for this and should have results fairly quickly. We met with two of the doctors on that group today. After looking over his history and examining him, they at least do not think that he could have any of the extremely serious auto-immune disorders They said that they really do not think that they will find anything with the blood work on Monday, but are going to proceed with the test on Monday anyway so they can positively rule out this possibility.

Thursday, May 8, 2008

THURSDAY, MAY 08, 2008 10:54 AM, CDT

**4:48 PM Update to the entry below:

We have gotten word back from the doctors that everything on Sam's MRI looks perfectly normal as expected.


Sam's MRI is done and he is back in his room. They did not need to sedate him because they had him wrapped up tight and stayed still for the whole procedure. They will be reviewing the MRI and will let us know if they find anything.

THURSDAY, MAY 08, 2008 09:06 AM, CDT

I just wanted to let everyone know that Sam is headed in for his MRI this morning. They really do not expect to see much with the MRI, but are going to do it anyway just in case something shows up that they were not expecting that could point them in the right direction as to what is going on with him.

Wednesday, May 7, 2008

WEDNESDAY, MAY 07, 2008 10:46 PM, CDT

Sam is two months old today - Happy Birthday Sam!

Sam's surgery today went well and recovered fine from being sedated, just a little sleepy today.

Due to scheduling problems, they were not able to do his MRI today, so they will need to sedate him again tomorrow to do that.

We will not have any results from the biopsies that they took today for several days, but it was a good feeling to at least move forward with some testing that has not been done before with him.

His endoscopy showed a Esophageal ulcer. This was most likely caused by stomach acid from his empty stomach making its way into his lower esophagus and they do not believe that it is otherwise related to what is going on, but will know more when the biopsy results are back.

They also noticed that microvilli in his small intestine are flat. These are normally small projections on the inside of the intestine. This is commonly seen in untreated Celiac disease, but there are several causes of this and we really won't know more about this until the biopsy results come back.

Sam's weight was down a little today, but still over 6 pounds. He had a very large poop right before he was weighed, so if you take that into account his weight was pretty close to the same.

Tuesday, May 6, 2008

TUESDAY, MAY 06, 2008 08:27 PM, CDT

I was visiting with Sam and Grandma and Gramps this evening when I noticed a note on his board..I misread his weight this morning. He is actually up to 6lbs 12oz!!! I even made the nurse double check for me. I was so excited I just had to post it. Nothing else new. He still looks great. He is wide awake and gazing at Grandma right now.

TUESDAY, MAY 06, 2008 01:00 PM, CDT

Just a quick note from Mom. They have also decided to do an MRI as Sam will be sedated already. His weight is now at 5lbs 12 oz; down a little but still pretty good. His stool output has slown down a good deal. They say it is still high at 300ccs but way down from the 800ccs he was at. He is much more comfortable today, the bouts of gas seem to have let up. His poo is loosing color again. Although it is becoming clear it is still the odd gelatin consistency.

Ryan is having a wonderful time. A few different nurses seem to be watching for when he is free to be played with. Each time one has to go back to work another stops by to see if he wants company. Of course, he loves the attention.

TUESDAY, MAY 06, 2008 12:10 PM, CDT

Just a quick update to let everyone know that Sam is scheduled for his surgery tomorrow at noon. They will be inserting a scope into him to examine his entire GI system as well as taking biopsies from his esophagus, stomach, colon, upper intestine, and lower intestine. He will be sedated for the entire procedure which should take just over an hour.

Monday, May 5, 2008

MONDAY, MAY 05, 2008 09:28 PM, CDT

Sam's fever was milder later today and it appears that it was gone by this evening. They are planning on doing his biopsy and endoscopy on Wednesday now as long as all goes well tonight and on Tuesday.

Sam's lab work all came back clear of any infection as we predicted, so this was once again one of his mystery fevers that nobody can explain. Sam is really keeping everyone busy in Milwaukee - unfortunately he is not cooperating enough for us to make any progress forward yet...

MONDAY, MAY 05, 2008 03:09 PM, CDT

Sam's fever continued to come and go throughout the night and was back again this morning at just over 103 degrees. Due to this, with the results of all of his blood, urine, and spinal fluid not being back yet have meant a stand still for us again. We will need to reschedule his biopsy and endoscopy for another day once he is healthy again. The main problem that they are having right now is maintaining all of his levels long enough to be able to sedate him for the procedure. I had hoped to go back to Appleton for work tomorrow but am awaiting a decision on when they will reschedule his procedure for so I don't get all the way home to find out that they will try again tomorrow.

Sam was very fussy today and was not feeling well. He suddenly is very gassy and uncomfortable and spent a good portion of the day today awake, crying, and angry.

On the bright side of things, Sam's weight is up today and he is almost up to 6 pounds. At 5 pounds 15 ounces this morning, he has broken his record weight.

The rest of us are still holding together OK, having the Ronald McDonald house here has helped greatly. We are just across the street from the hospital and can take turns spending time with Sam, Ryan, or both as Ryan's mood permits and there is a lot here for him to do.

Sunday, May 4, 2008

SUNDAY, MAY 04, 2008 09:30 PM, CDT

In the few short minutes since our last journal update I realized that we forgot a few things and now we have another change.

Sam was very anemic again on Friday night and required his third blood transfusion on Saturday.

They also wanted to more carefully monitor his urine output vs. his stools, so they have inserted a catheter and are measuring his urine output seperately.

Sam had quite a few visitors over the last few days and really like to focus on whoever is holding to him and talking to him.

20 minutes ago we were hoping everything would still be a go in the morning. Now it looks like that might not happen. Sam's fever keeps coming and going. Because of the risk of infection from his IV and his catheter they need to make sure that there is not any issue there. They have startd a blood and urine work up on Sam and he will be getting yet another spinal tap in about 1/2 hour so they can make sure that there is no infection. This really leaves everything up in the air for tomorrow and the procedure may need to be delayed until Tuesday

SUNDAY, MAY 04, 2008 09:07 PM, CDT

All of Sam's levels had returned to normal on Saturday morning and they have scheduled his biopsy and Endoscopy for Monday at 11:00 a.m. They will be taking tissue samples from his small and large intestines as well as taking a look at his digestive track from both ends. The whole procedure should take a few hours and Sam will be fully sedated during this.

Sam developed a little fever today, which will hopefully resolve itself by later this evening. If it does not we may have to delay the biopsy and endoscopy. Hopefully we can at least get this step over with on Monday and find some answers to what is going on. We should have his biopsy results back in a few days and should know by Tuesday if anything shows up on the endoscopy.

Deb, Ryan, and I have been staying at the Ronald McDonald house this weekend. Deb will be staying there full time for at least the next few weeks and Ryan is traveling back and forth to spend time with both of us. I plan on coming up for the weekends and returning to work each Tuesday morning. It has been a little stressful this week trying to get used to everyone being separated all of the time but so far it has not been so bad, hopefully we do not have to do this for long.

Thursday, May 1, 2008

THURSDAY, MAY 01, 2008 09:17 PM, CDT

We do not have much to update today. Everything is moving at a snails pace as most of the tests that they want to do next require Sam to be sedated. Before they do that to him they want all of his levels to be stable and normal. Almost everything has returned to normal since Monday and we just have a little further to go with his blood PH. This means that it will most likely be next week before they will do his Endoscopy and intestinal biopsy. They are going to do both of these at the same time so that he only needs to be sedated once.

Sam was very much awake and hungry today. He was very frustrated with not being able to eat and voiced it. Mom got a little break as Jason's aunt Kathy came to visit and got her out of the hospital for awhile. Gramps stopped by and so did Jason's cousin Amy and her husband Chad. Deb said that it was a relief to see some familiar faces and she really enjoyed having visitors.

Ryan and I will be headed to Milwaukee tomorrow after I am done with work. I will be heading home for work after the weekend, but Ryan gets to stay down in Milwaukee with Deb at the Ronald McDonald house until Wednesday of next week. He is very excited to see his brother and his Mom.