"Pizza"

What kid's favorite food isn't pizza?!? 

Well it's been Carson's for as long as I can remember.  That's right...this kid who eats pretty much no solid foods will eat pizza.  Pretty crazy!  I've been looking and looking online and in grocery stores for fat free foods for Carson.  My quick trip into the store on my way home from work now last an hour of looking at labels.  Talking to Mama Con the other day about what Carson could eat she found a website with recipes (mostly vegan) fatfree.com.  Trying to find Fat & Lactose free things to eat is not an easy task and then to actually get Carson to eat them is even more trying.  I've almost given up because I can't tell you the number of things we bought just to have Carson turn his nose up at them.  So an idea mom got off the website was pita bread and to me pita bread looks like pizza crust!  Then it was on to pizza sauce.  Most pizza/spaghetti sauce in the stores had fat in it so I was going to attempt to make it, but I found one fat free sauce and bought it. 

And this is what Carson has looked like at dinner the last two night.  This little guy LOVES his pizza and I don't even have to cook it so that's a huge plus for me.

I think he really just likes tomato sauce, but it's calories so I'm ok with that :)

July 5th At the University

Lets start with the fun stuff...We had surgery follow up part two yesterday with Dr P.  This time he didn't find another reason to cut Carson open again :)  (Unlike last time with the hernia's that magically appeared)  We got to chat with Dr P and as he said to the Med Student this appointment was more of a social visit or us than medical.  He is such a great guy!  An no more appointments with him unless/until we need him again.  If Carson has any complications from his PVT Dr P said he would be our go to guy for any surgery that's needed.  Makes me a little more comfortable to know a surgeon if we ever need one.   
And now the not so fun stuff...Carson's tummy has always been a little tricky ever since he had that virus in January 2010.  It took us until about May of that year to finally figure out a formula that worked for him that didn't give his diarrhea.  We were nervous when we switched to pediasure, but when we did all was well.  So we didn’t think much of it when we made this switch.  According to everyone we talked to Portagen is pretty much the same as Pediasure just a different type of fat.  Well Carson had diarrhea from the day we switched him.  I didn’t want to overreact so we kept going with it with hope that his body was just taking time to adjust, but on Sunday Carson’s gut told us “NO MORE” loud and clear.  His intestines kicked it up a notch and pretty much demanded we stop that formula!  I switched him over to pedilite to get him hydrated and to give him a break.  His poor little red bottom couldn’t take anymore! 

I called Dr R’s office 1^st thing on Tuesday morning and they got us an appointment for that afternoon, we were already going to be there for our meeting with Dr P.  Met with Dr B, Dr R is in Lebanon for three weeks.  After he talked to the nutritionist they decided to try mixing Carson’s formula a little “weaker” to see if that helps out.  It was 30 cal/oz and now it’ll be 24/oz.  Now we pray that Carson can tolerate this.  They said Portagen is pretty much the end all and be all of treating Ascited.  He said that while there are other formulas that would be ok for C to be on they aren’t as good, this is the best.  If this doesn’t work then we will be forced to switch to something else, but they wanted to give his a shot before we change anything.  We are to call back in a few days and let them know how it’s working. 

With fewer calories I will be interested to see what this does to Carson’s weight.  We are still down about 2 pounds from his pre-surgery weight.  Which doesn’t seem like much, but when it’s 10% of your total body weight that puts things into perspective.  If I was down 10% of my weight in a month that’d either be a very good diet or a problem.  We are hoping that once we get things in the bottom area leveled out and get thing absorbing a little better he will once again start packing on the pounds!

We also asked Dr P to order a CDC and Auto Diff yesterday to see what that would tell us.  His CBC’s have looked so good since surgery (minus right after surgery when they took a nose dive for no apparent reason) there was some talk (very quietly as to not give us any undo hope) that things might actually be working in the graft, but just not able to be seen on ultra sound.  Well those hopes were pretty much completely struck down this morning.  With the new “My Chart” website that the U has you can get test results back online which is good and bad for me.  Good because I don’t worry about them and get them quickly and bad because I’m a little crazy and Google every little thing!  But Knowledge is Power right?  His WBC that had been at a 4.8 (5.0 is “normal”) is back down to a 2.7.  His platelets are still “normal” at 155, but that’s on the very low side of “normal” and they had been up near 300 two weeks ago.  So all in all his CBC was not the good news we had hoped for.  Makes me sad.  There is now pretty much no hope that by some miracle his surgery actually worked.  And now we move on.

Sunday Funday

We decided Sunday we were just going to have fun as a family.  It's been quite a while since we had a carefree day and I think we all needed it. 

We started off with 11am church service for the first time since Carson's surgery.  The 1st weekend in June kids move rooms so both kids finally got to go to their new rooms and meet their new teachers.  It was hard to leave Carson with someone we don't know with the situation the way it is right now, but it's only an hour and we both needed it!  After church we did Carson's first "on the go" feeding, aka tube fed him in the Car while we were driving. 

After a quick lunch and stop at Target we went Miniature Golfing.  It was more of a chase the kids around while they hit or tossed balls toward a hole, but they had fun and so did we.

After a great 18ish holes we decided to check out the spray park I'd read about in Rock Island.  It was so much fun!  It's right along the river and it just opened last year.  Lots of green grass and nice play ground equipment...add a bunch of water and it's every kids dream. 

Had so much fun yesterday we went back today (with swim suites this time).
 

Chylous Ascites

...Bet you don't know what the heck that is!

I didn't either until about five days ago because that's Carson's newest diagnosis.  The definition is "an abnormal condition characterized by an accumulation of chyle in the peritoneal cavity. Chylous ascites results from an obstruction in the thoracic duct that may be caused by a tumor or by a destructive lesion, resulting in rupture of a lymph vessel.". 

What all that actually means is that the fat that is normally absorbed into your body by the lymphatic system is leaking into his abdomen instead of being used as energy.  This caused increased pressure in his abdominal cavity causing bilateral hernias (they noticed the condition because of the hernia repair surgery). 

So now Carson gets to be on a NO FAT diet for the next 4-6 weeks.  That's right NO FAT!  My little kid that we've tried to "fatten up" for the last two years is not on a no fat diet and special formula, portagen.  The Portagen is apparently really gross tasting so he won't drink it and therefore he is back to being NG Tube Fed :(  and not just overnight feeds like we've done in the past.  He gets 2 feeds during the day and then over night also.

So this is what dinner time looked like the other night...notice the IV pole in the background with Carson's "Dinner" on it.  I've already come up with ways to work around the feeds including feeding in the Car.  Called our home health company today and they're sending us a backpack to try out.  Hopefully Carson will be able to carry it around so that'll make things a little easier.  Getting him to sit in one place for 30 minutes for a feed isn't the funnest thing I've ever done!

So that's pretty much where we are right now.  Carson had Bilateral Hernia Repair last Wednesday morning.  Thank the LORD he had no problems with anaesthesia this time.  We were in and out in about 5 hours.  He has recovered nicely from the procedure and now has two more scares to add to his collection.  If it's not one thing it's another with my kid!

Terrific Two's

Two years ago today we completed our little family. 

Can't believe it's been two whole years since I had Carson.  Wow what a ride it's been!  I thought the hard part was over when I delivered him that day...I was oh so wrong.  I would have never thought I could know the in's and out's of early intervention in two states or what Carson's white blood count usually is.  This isn't the life I would have chosen for our little man, but it is what it is and we will make the best of. 

The events of the last week make me thankful for my son.  I can't imagine our family without him and I look forward to lots of great memories in the future. 

Because of Carson's surgery we celebrated his birthday on Memorial Day and here are some pictures of our little party.      

I'm VERY Happy to be TWO!

Just because she's Cute :)

The Eeeeelmo Cake

They both played in the water/sand table for long time and LOVED it!

Then we played with Bubbles for a while

Cake

That about sums up his interest in the cake...not so much!

And we opened presents.



It was a great day with our family and I'm glad we did it early so Carson could enjoy it and we weren't worried all day about him hurting himself.

As for his recovery he is doing really well.  He seems like he's more and more back to normal each day.  We go back to see the surgeon on Tuesday for a check up.

Finally some good sleep!

Poat surgery day two was no fun at all. Carson was very agitated all day long and only slept for sort 15 minute naps every once in a while and in between he screamed and thrashed. It was really no fun at all. Finally we moved the bed out of the room and the chair over and I held him and he slept for 5 hours! And since then minus a few hours here and there Carson has been calm and very sleepy. He is still on the morphine iv, but know we also have an awesome little button to push to give him extra. His personality is showing through here and there too so it's good to see him coming back to us.

Here ar some tid bits of what's been going on
-Repeat CBC after blood transfusion was much better. WBC was up from .7 to 1.8.
-two ultrasounds were completed (6/1 & 6/2) both showed no flow in graft
-repeat dray yesterday was improved. Guy still sounds "junky"
-yesterday morning arterial line removed and dex stopped
-moved out of PICU about noon yesterday. Have I said how great the nurses are up there? They are!!

We were told last night by the nurse that they changed Carsons orders and he was getting no more blood thinners. I knew this meant that the graft had officially failed, but I was also pissed that the Resident just changed the orders and didn't even tell us. We pretty much new this was going to be the outcome since right after surgery, but still. If the graft had worked they'd have come in patting themselves on the back all day, but since it failed they can't even tell us that. I had the nurse get the Resident on the phone since he wasnt at the hospital so he could tell me. Would have liked to make him tell me face to face just to watch him squirm....I'm such a nice person. Dr Pitcher is great! We absolutely love him, but clearly he needs to teach his students some bedside manner...don't worry I'll be sure to let him know.

We got moved down to 3rd floor yesterday morning. To a double room :(. Not too happy about this but we are making it work. Our "room mates" from last night are ver nice people with a tiny 6 month old baby. They got good news this morning and will be leaving this afternoon.

Besides tha AJ and Emily brought Kay up to see us yesterday which was nice and mom sat with Guy last night so Dave and I could step out for a minute. We got dinner and picked up a DVD of Mickey mouse clubhouse for Carson. It's been emotional and we are tired, but only a couple/few more days and we should be out of here.

Thanks for all the toughts and prayers over the last week. This proceedure was the only one that will "fix" Carson that we know of so it looks like we will be on to managing the symptoms of this blood clot/portal vein hypertension. There are lots of things that can be done, but none of them will take the blood from his portal vein to his liver so they aren't fixes. So basically now we wait until we have a problem and go from there. Not exactly what we wanted for Carson, but as Dr P said, lots of people with PVT lead long normal lives. I just pray that this condition doesn't define who Carson is.

Today our goals are to get out of bed and to get him to drink some clear liquids!

CBC's and Ultrasound

In very "Carson" form his cbc's have been ridiculously low...so low that they thought the sample got diluted.  They repeated them and they really were that low.  His white blood count (the only number I actually know what the numbers mean) was at a .8 the first time and a .7 when they repeated it.  "Normally" Guys number is about 2.8-3.0 and "Normal" for actually normal people is about a 5.  They said all the other parts of the blood were very low too.  So we got a blood transfusion.  They transfused only red blood cells because they didn't want to increase his platelets which would increase his clotting. 

They came in and did the Doppler ultrasound a while ago.  The Doctor that did it didn't seem too excited, but didn't say no blood flow either.  Dr P said he was going to go find him and figure out what the results were and let us know.

Other than that pain management has been an issue today too.  Carson seems very uncomfortable and it's been challenging to try to get him to settle down.  They upped his morphine and dex to see if that'll help.

On a positive note we've weaned him down to 1L on the O2.

Time for me to get some lunch.

An Eventful 24 Hours

So the last 24 hours have been Interesting to say the least. Here are some of the "highlights".

-when we got to pre-op they pretty much immediately gave Carson Versed. Not sure if that was for the child or parents, but it did sure make that hour of waiting go fast. We got some awesome snuggles from Carson.

-the "day of surgery lounge" as it's called at the U where we got to spend a lovely 7 hours seriously needs some work. It's like a dr waiting room from 1980. My butt still hurts from the chairs and the privacy there is nonexistent.

-there was the nice family there that we sat across from. The mom was 45 and had an aortic anurism. It sounded like her surgery went as well as could be expected so that was great.

-I still think dr p is one of the nicest doctors I've ever met. When he came to tell us that he didn't think the surgery worked you could tell he was upset. He said he thought about closing him up when things didn't look so good for the graft, but he knew that Dave and I really wanted him to try. So even if it was a small chance he was going to do it.

-I got to see the inside of Carsons tummy. Dr p took pictures and shared them with us. Kind of freaky.

-when dr p met with us he told us we should get to see Guy in ten minutes. An hour later we asked and were told he was still in the OR. At two hours after freaking out just a bit I was just rounding the corner to go get some answers when I saw the receptionist talking to Dave. He was finally in the PICU and we could go see him. We headed up to the floor and as we got off the elevator the anesthesiologist was there and took us to tell us what had gone on. Sounded like when they attempted to extibate Carson he "crashed". Not sure if that's the right word, but his bp and heart rate dropped and they had to give him epinephrine to get him going again. She had trouble reinitiating him and ended up he was intibated three times. You could tell from her and the surgeons that was in the room that our Guy totally gave them one heck of a scare.

-our challenge now is pain management and his lungs. He had a partial collapse of one of his lungs and is sounding very congested. His O2 is sitting at 96 but that's on 2L of 100% O2. Goal will be to ween him off the oxygen today and see how that goes. They will also be taking out his arterial line and cath today so two less tubes. Right now he has 2 IVs, an arterial line, ng tube, oxygen canulas, heart monitor probes and oxygen monitors. When another Rex shunt mommy told be there would be tubes everywhere she wasn't joking! As far as pain goes he is on dexmedetomidine, tylenol and morphine and that seems to be working alright now. They added the dexmed last night because the morphine wasn't cutting it and because of that we got a decent night sleep. He wakes up every 4 hours like clockwork for an additional bolus of morphine (he is also on a drip) and his Tylenol and to freak out a little.

-we will have a Doppler study sometime today to see if there is any blood flow. No one here seems very optimistic.

So that's pretty much where we are now. Thanks to everyone for your prayers and we ask that you keep them coming. I'll be sad if we did this for nothing and the shunt doesn't work, but I know neither Dave nor I would change anything. We figure if we didn't try we would always wonder and the longer the veins in the liver sit empty the more "damaged" they become so the chances of it working would have been even less.

Anticipation

So tomorrow is the day.  Surgery.  Possible 5 hours of anesthesia for Carson and sitting in a waiting room for Dave and I.  The anticipation for this day has been lingering and not it's come to a head!  I can't concentrate on anything today.  I had my mind focused last week because work was very busy (month end, concert, three weddings, etc), but today it's just another day at the office.  Just tieing up loose ends before I'm not here for a couple of week...I should have just stayed home!

Yesterday we celebrated Carson's "Birthday".  His actual Birthday is June 10th, but with the surgery and recovery we decided before surgery would be better.  And it also was a really fun day for Carson and Kaylee which was something I really wanted for them since the next two weeks might be a little stressful.  We went up to Mom and Dad's and Dad made Chicken, we opened presents and ate cake.  We got Carson a Water & Sand table for his big birthday present and the kids Loved it!  I looked and looked at reviews for those tables and finally decided on one.  Pretty sure i could have given them just a bucket of water and a hose and they would have equally loved it  :)

Carson failed at cake again this year.  Because he wasn't eating anything last year I got his his own little "smash" cake again this year...he wanted NOTHING to do with it.  Wouldn't event try it.  Oh well there is always next year, right?  I decided I'm going to get him his own little cake every year until he acutlly eats it.  There were elmo cars on the cake and eventually he did drive the cars through his cake.

So this afternoon we fill find out our check in time for surgery.  Carson does have a bit of a cold right now so prayers that this doesn't hold up surgery would be great.  Also, there is a chance that they go in there and the vein that they need to "hook up to" isn't open/working and they won't be able to do the proceedure.  Prayers that this is not the case would be great too. 

Thanks so much for the support.  I'll keep updating this once I know more of what's going on in the next couple of days.  I'll also add Birthday picutures once I get them downloaded...probably tomorrow.

Pre-Op Tomorrow

Wow it's been almost month since I last updated!  I think I've started about 12 posts in the last month, but got distracted.

Guys surgery is scheduled for Wednesday June 1st.  His pre-op appointment is tomorrow afternoon.  I'm starting to get very nervous as the days get closer!  All I can do is trust that we are doing the right thing and pray for healing and safety for out little man.  Ugh though it's hard not to stress about it.  Yesterday at church a song really got me...

"You stay the same through the ages
Your love never changes
There maybe pain in the night but joy comes in the morning

And when the oceans rage
I don't have to be afraid
Because I know that You love me
Your love never fails"

Although this is a scary surgery and there are lots of what it's and what not I'm really looking forward to the joy in the morning!  Can't wait for this step in the process to get Guy better to be over and successful and for us to move on.  I trust that we are here in Iowa for a bigger reason than any of us could have anticipated and this surgery will be successful.  I have lots of faith and hope on the outcome of this.  I'm going to hold onto that and focus on that in the next two weeks and not the scary stuff.  At least I'm going to try to really hard. 

Guy's 2nd birthday is on June 10th so another hope we have is the Carson will be at home to celebrate and eat cake.  Last year he wasn't really eating solids at all so I'd really like to see him smash a cake on this birthday!

Run down of what's been going on at our house in the past month...

Easter was spent with the family in Solon.  Saturday we were hosted at the Wulfekuhle house with lots of the "Goldsmith's" in attendance.  Guy and Dave got lots of practice with Stairs and we had a nice time with family there.  There are so many little people in that family again...if I'm counting right there were 7 under the age of 4.  Sunday mom had a nice lunch at her reception hall with the Supple family.  It was great to see everyone there.

Soccer for Kaylee is in full swing.  She isn't too into it, but she tries.  She definitely likes it better when the weather is nice out. 

We went up to Solon to see Corri off for prom.  She looked beautiful as always.  Makes me very thankful to live here and get to participate in some of her events.

Pretty much that's about it.  Lots of trips to the park and the gym are excitement around here.  Mowing the grass is something new we've been tackling...Never having a house before it's something we have not done in a long time.  Grass in Iowa grows REALLY FAST!  We are looking forward to Dave's Mom coming out for a week started this next weekend. 

That's about it for us :)

--Jamie

SMO's & Surgery

Oh what a week it's been!

This morning we had PT come out and see Carson because of his falling.  We thought it seemed like more than "normal clumsiness" of an almost 2 year old and I guess we were right.  Ms Bea (PT) noticed much more pronation of Carson's feet then he had when she evaluated him 6 weeks ago.  It basically means his ankles lean inward.  She gave us some Supra-Malleolar Orthosis (SMO's) to try out Suresteps.  We walked outside with them on and Carson only fell down once...Pretty amazing for him.  Not sure if this will even be an option for us to actually buy because of the price, but we will try them for as long as they'll let us barrow the pretty purple and pink ones our PT left at our house to try.  It says very clearly on our insurance's website that they are not covered, but I think I'll probably call and try anyway.

Dr P also called this afternoon.  I missed his call, but he gave me his office number that I called back and he answered the phone...Again amazing to me.  He is ready to schedule the surgery.  He said the other test he had talked about doing isn't really needed because it's unreliable.  The test still doesn't show the area very well and if they don't see the vein with the test they still don't definitely know anything so he'd still recommend surgery.  He is out of town the first week of May and doesn't want to be gone right after Guy's surgery so we are going to wait until he is back, probably middle to end of May sometime.  I should hear from his office soon the schedule it.  We will be in the hospital for 5-10 days and the surgery will take 2-4 hours depending on everything.  I asked him about anticoagulant meds that I talked to the Hematologist about and he said they normally do Lovenox injections as presurgery therapy so Carson will officially be on blood thinners in the near future.  How long he will stay on them after surgery is still unknown.  So we will be able to add "Daily Shot for our Kid" to the list of things that we have done that "normal" parents don't "get" to do.   

Now we need to officially ask for prayers.  Prayers for Carson to come through surgery without any complications and prayers that the surgery is successful.  There is a chance that they open Carson up and find out the everything is not right and they can't do complete the shunt.  Please pray with us that this is not what happens, that Carson has all the right pieces inside him to create the shunt and make it work!

I am officially 100% over this week.  I'm ready for it to be the weekend when no doctor, nurse, therapist, dietitian or scheduler will call us and we can just hang out with our kids and on Sunday with the family for Easter. 

Oh and Carson has a cold.

Hope everyone gets to spend time with Family this weekend and has a Great Easter!

What's with the Cream?

So today we went to Hematology.


1st of all the Hematology Nurse was awesome as most probably saw on my facebook status today.  She gave us her card and told us her direct number was on there and to call anytime with questions.  And once I was talking about the situation today I did had a questions.  When I called the number she gave me she actually answered...I didn't have to press 1 for anything or leave a message she just picked up the phone.  I almost didn't know what to say because I wasn't expecting an actual person to answer the phone.  Just another example of the great care you get and the University of Iowa Children's Hospital, between Reese and Carson we could probably film a commercial for how great they are!


2nd today wasn't all roses.  I haven't fully digested all the information that was tossed at us today, but it really wasn't a fun appointment.  The Doctor talked a lot about the risks of future clotting vs the risks of bleed and what they can to do about it, pros & cons and all that stuff.  Basically they need somehow attempt to figure out if Carson has a bigger risk of bleeding out or have a complication from a future blood clot (ie things like stroke) and what to treat or not to treat.  There is nothing they can do for the blood clot that Carson has (besides the shut procedure) and it's not going anywhere, but because he has this blood clot Carson is at a much increased risk of developing future blood clots and that's where things get tricky.  "Normally" they would probably recommend Carosn being on an anticoagulant but because of everything else she wasn't sure.  With the location of Carson's blood clot he is at an increased risk level for internal bleeding and being on blood thinners can increase your risk for internal bleeding (this all sounds like lots of risks).  So who knows really!!!  It makes sense that he'd be at greater risk for clotting in the future, but in the 12 months since we found out Carson had this clot no doctor has ever told us this.  She went over all the warning signs and symptoms and thing he should do and shouldn't do...he shouldn't sit for long periods of time, like my 22 month old son ever sits!  There were just some things that were hard to hear, risk factors for stroke in your two year old is never a fun topic.  


They also did more tests like always.  Good news White Blood Count was up to 3.0 from 2.8...Bad News Platelets were down even lower again.  If it's not one thing it's another.


As far as the title for this post goes...What's with the cream they put on the kids arms before they take blood.  They do it at the end of the appointment and then we have to wait around for 30 minutes so it to take affect before the blood draw and Carson cries more from the sticky stuff they put the cream on with then he does from the blood draw...I feel like they'd think I'm a terrible mom if I say just to poke him, but really does it help that much???  Would it make me a bad mom?       

The Latest

Overall it's been pretty quite around our house the past week or so...who am I kidding we've had appointments almost every day of the week and visitors every day of the weekend.  Last week we had Julie, our Special Ed teacher on Wednesday, Jodie our nutritionist on Thursday, Dr R (GI) on Friday for appointments.  Then on Friday/Saturday Abs and Corri spend the night and on Sunday Dad came down with the lawn mower and stayed the night.  Never a quite moment around these parts.

Appointments:

Julie:  This was pretty much a "paperwork" appointment.  We went through Carson's IFSP.  She gave us copies of all the specialist evaluations that' they'd had done in the past month.  Good news----Carson no longer qualifies for Services based on his delays!  He is still delayed and if we wanted to fight for services based on that we would probably win, but at first glance he is only "slightly" delayed, which means less than 25%.  He still qualifies for all services because his medical issues make it probable that he will have learning issues. 

Jody:  The nutritionist is also through Early Intervention, but we actually have to go to her (boooo).  She had the nurse sit in on our appointment because of Carson's medical issues.  I was really excited for this appointment.  We talked about our goals as far as nutrition goes and we said it was to get Carson to eat more "normal" food and less pediasure.  Right now Carson gets about 85% of his nutrition from Pediasure and we'd like that percentage to be MUCH lower.  This was the first appointment (besides ones at the house) that we've had to take Kaylee with since we moved to Iowa...This was a very good reminder of how nice it is to have family close and not have to drag her to doctors all the time!!! 

Dr R:  This was just a follow up from our Liver Biopsy.  He said the liver biopsy was normal.  Normal for Carson which is slightly abnormal with some inflammation, but not enough to cause too much concern.  Nothing for our Guy can just be totally normal.  We talked with him about Carson's nutrition too.  We decided to try to back off one feed of Pediasure a day.  He was on 32oz we are now going to drop that down to 24oz with the hope that this will make him hungrier for "normal" food.  We go back in 6 weeks, if not sooner, to check and see what this does to his weight, say a prayer he doesn't loose any!  He said we should be getting a call from Dr P (pediatic surgery) to schedule the next step in the quest for surgery.

Upcoming:  We see Hematology tomorrow at 8:20am.  So early in the morning!  I will be interested to hear what they have to say.  We are seeing the blood clot expert and they are running more labs (the reason the appointment is 1st thing in the morning).  Apparently there was something "off" in the initial labs they ran since they want to do more.  We shall see.  Our PT is coming out Thursday morning for a visit.  Carson is very uneasy on his fell lately (falls all the time) so she is going to show us some new exercises to do to help build his muscles that hopefully will keep his upright more and he will have less burses! 

So I guess that's my definition of quiet :)  Luckily this is a very slow month for me and I've had TWO WEEKENDS in a ROW off work and will have another one this weekend.  Hard to believe.  We are looking forward to the Easter Bunny and Church Services this week and spending time with the Family Sunday afternoon. 

Step One is Done

Last week we headed to Iowa City for Step One of Carson's trek to get his blood clot "fixed". He had a CT first and then a Liver Biopsy. Overall it was a pretty quick and easy procedure. Took about an hour of sedation and he was done with both procedures. Carson was good throughout the stay at the University. He got a little crabby while waking up from anesthesia, but then was back to his happy self in no time. He couldn't eat for 4 MORE hours afterwards which I thought was going to be a huge issue, but he didn't even ask for food. They also wanted him to lay on his back for 6 hours after the biopsy...Really?? he's 21 months old there was NO way that was going to happen. Closest thing I could get him to do was put him in his stroller laid back as far as it would go and strolled him around the floor/hospital for a long, long time. Our stroller is the key to make hospital appointments and stays manageable along with the yellow hawkeye waggons that guy likes a lot.

Guy in the Yellow Wagon...A little scary, but whatever Guy likes is what we do when we are stuck in a little room!

A very nice lady stopped by and guy got to pick out a book to take home! He loved his new book. Best part of our Trip to the U was getting to see my cousin Brian and Allie Wulfekuhle and FINALLY meet Reese! Reese is month older than Carson and just adorable. They had appointments at the U the same time we did so we planned to meet up. Didn't plan that Allie would be the first person we saw when we walked into the hospital. Wish we would have had more time to sit and chat with them, but we were pretty from the minute we got there until we were in Carson's room. Thanks so much to them for the present they brought Guy!!! Markers and a Veggietales move provided much needed distraction for the 4 hours Carson couldn't eat.

Most importantly we got a call this morning from Dr. R that Guy's Liver biopsy was normal. It's what was expected, but still was nice to hear. Also, his CT didn't show anything different then it did last year. I was secretly hoping that they'd say "WOW, no blood clot", but that wasn't the case.

I had the entire weekend off work and also have the next two weekends off! Not sure what I'm going to do with myself, but I'm going to like it. This weekend we spent lots of time outside because the weather was beautiful.

Much of our weekend looked like this. Abs and Corri came down and spent the night Friday night, Kay started Soccer on Saturday, Sunday we went to church then Mom, Dad, Abby & Ms Maggie came over and dad made Chicken. All in all a GREAT weekend!

This week we are busy with Early Intervention Meeting, Nutritionist & a Follow-Up appointment with the Dr. R. Never a dull moment with Carson! We should hear from Dr. P with pediatric Surgery sometime this week to move on with step 2 and to get their impressions of Carsons CT.

Step One is Scheduled

So here we go. Got a call today from UICH to schedule Carson's CT & Liver Biopsy. They wanted to do it on the 29th, but mom is headed to Denver on the 30th so we didn't think that was the best idea. They called back and had it scheduled for the 5th. Carson will only need to be sedated once for both procedures. They will do the CT and whisk him across the all for the Liver Biopsy. Should only take about an hour in all, but we will have the stay the night in the hospital to monitor him and make sure there is no internal bleeding from the biopsy. This is step one the process to getting the OK to do the shunt surgery.

Good things that happened this week:
-Grandpa came down for a visit Wednesday night/Thursday morning.
-Kids got to play with Ms Maggie Sunday night while Mom & Dad had a night out with a Friend from Denver.
-Kaylee seems to be on the road to getting healthy. Fever's been gone since Thursday
-Carson said, "Carson" on Thursday for Daddy!
-OT came and gave us some new idea for things to try to get Guy moving forward with eating.

All in all a good week!

The High Chair

While most kids just eat dinner in their highchair we have found many different used for Guy's Chair. Besides eating; we use it for therapy, to contain him when we want to do dishes and now a new use for it tonight...

Stated out with crazy hair like this...

Then we started to fix that crazy hair!

He wasn't all that excited about it...

But he was VERY excited to be done!

Even from the back...doesn't look too bad :)

Decided to try out cutting Guy's hair tonight. And it worked out alright. Bought some clippers for fifeen bucks so I figure even if I only use them twice I'll save some money! Probably shouldn't have gone quite so short, but now I know that for next time. Brave little guy didn't even get too mad at me. Tried to get Dave to let me do his too, but he woudn't sit still.

Here's a picture of our sick little girl. Has had a fever for the past few days, but she's still cute!

Second trip to the University

So our trip to the University was much more eventful that we expected.

1st Appointment Hematology:
Nothing too exciting at this appointment. They ordered LOTS of tests. They are pretty much rerunning all the clotting test they ran back in Denver because the records they got from TCH were not complete enough for them. We need to rule out that Carson has any clotting disorders that led to his Portal Vent Thrombosis. Should get results in the next two weeks and they are going to set us up an appointment with the Clotting Specialist there to go over what they find.

2nd Appointment Pediatric Surgery:
This is where things got a little more interesting. We were under the assumption that we were meeting with them as a precaution because there was a good chance that at sometime in the future we would need their services. If/When Carson had a bleed they would be the ones to treat it. Little did we know that we were actually meeting with them because there is a procedure they can do to fix what Carson has (PVT). Well not exactly fix it, but they can take a vein from his neck and use it as a shunt to move the blood around the blood clot. It's called a Rix Shunt Procedure. We were always under the assumption that there was a possibility that magically Carson's body would just fix itself and the surgeon said that was not so much true. He said that was thinking about 10 years ago, but with developments in treatment there is no reason to "wait and see" which was the approach that the Denver doctors were taking. He said if this works (75-80% success after 5 years) it will totally fix the problem. Carson's liver will get the blood supply it needs to grow healthy again, his spleen will go back to normal size, his blood counts will go back to normal and this could possibly even help his developmental problems. We could possibly have a normal healthy kid! He could play football when he grows up which wouldn't be possible with his enlarged spleen. We wouldn't have to be scared to take him out in public because his white blood cell count is low and he gets every sickness. There are lots of hoops the jump though before he can have this surgery. He has to be cleared of any clotting disorders, needs to have a CT, Liver biopsy to make sure his liver is actually healthy, has to have some sort of test that makes sure the vein that that hook up to is open and is good working order. If there is any abnormalities besides the blockage of the portal vein this surgery would not be an option.

http://www.childrensmemorial.org/depts/siragusa/transplant-surgery/rex-shunt.aspx

This is a doctor in Chicago explaining what the procedure is and how it's done.

So this is pretty exciting/scary to us. Surgery is never without it's possible complications, but from everything I've been told and read so far the complications are minimal. If it doesn't work we're just exactly where we are now...We wait and see. There are other, more invasive, shunts that would be an option if things went bad and he had uncontrollable bleeds. This will mean two hospitalizations. One for the liver biopsy that'll be just over night and probably 5-7 days for the shunt.

I couldn't be happier that we moved to Iowa at this point. The care we have gotten from the doctors here has far exceeded what we were doing in Denver. This was one of my reservations with moving to a smaller city/area with fewer option for doctors, but God is good all the time. This always happen for a reason and here we are...with a possible solution to at least one of Carson's issues. We still have no idea what his chromosome deletion means and if that's the reason for his delays, but if this works we will know one way or another if it's because of this or that.

So now we wait for some phone calls. Hematology and GI/Ped Surgery with results of the tests they did today and to let us know when they schedule his CT scan and liver biopsy.

Where's Carson

Well our little Guy has come a long way! This is how he plays "Where's Carson". He gets so Excited! Showing off his "more" and "all done" skills too.

3rd Times A Charm?

So this is officially the 3rd time I'm tried to start a blog in the last few years and hopefully it'll be the charm! We are slowly getting adjusted to life in the glorious state of Iowa. We have been busy getting Carson's new doctors and therapies set up, but finally that seems to be headed in the right direction. We have started seeing Dr R (GI) at the University of Iowa. As of yesterday he has officially refereed us to a Hematologist and Pediatric Surgeon at the U and we are waiting on a calls for an appointment with them. We can now check local Pediatrician off the list as I finally made contact with them yesterday and they're working on getting records sent from Denver. We also have had appointments with Early Intervention Counselor & OT. They're working on setting us up appointments for our Social Worker & Nutritionist. I've always said that Carson's "Stuff" could be a full time job...And that was when we were figuring it out piece by piece. Starting it all over again, making contact with everyone all over again/at the same time seems like it could be two full time jobs!

It's been very interesting to us to see the difference in care for Carson with this change in doctors. Back in Denver our GI (Dr S) there seemed much more laid back about Carson's blood clot, but the doctor here wants to do more testing/monitoring/meeting with surgeons. Dr S was way more worried about Failure to Thrive and Dr R seems much more worried about the PVT. Which is right? I have no idea as I'm not a doctor, but Dr R has explained everything to us very clearly and everything he tells me is what I know to be true from research I've done. Which approach is right...I have no idea, but I'm not a wait and see type of person so I guess I'm trusting Dr R at this point.

Test results from our Iowa City appointment a few weeks ago. CBC looked "better" relatively from the last time blood was drawn. His WBC was a 2.6 which is a tad higher than it has been so that's a little step in the right direction (normal is 4.5 I'm pretty sure). All his other blood counts were normal or very close to it. Liver function was a little wacky which is to be expected because of the strain the blood clot places on it. Started him on Mephyton once weekly for Vitamin K to see that corrects one of the test that was not quite right? Not sure what that was. He noticed that something (I don't remember what?) was low back when they did tests in Denver a long time ago that may be the reason that Carson got the clot and he can't see if it was ever rechecked to make sure that whatever it was went back up...If this "thing" never went back up Carson is more prone to blood clots and will need to be put on medication to prevent them. This is why he referred us to hematology...He wants them to check him out/run whatever tests need to be run. He wants us to meet with the pediatric surgeon team so they can evaluate Carson and see what they think about if/when Carson would be a good candidate for a shunt. This would be a major surgery so we pray that they will think it's not needed at this time/for a long time/ever!

So much more information that we've ever gotten from a doctor before is good, but a little over whelming for me. Feel a little like we've started the whole process over again a year later, but as long as our Guy is alright that's all the matters. Makes me think we should have gotten a second opinion much sooner!

Kay is adjusting to live in Iowa very well. Loves having her daddy home with her all day with her and being able to spend time with her Aunts, Uncles, Cousin, Gradmas & Grandpas! This week we got to play with the Bill, Heather, Parker & Lexi on Sunday. Grandpa came down on Tuesday. Thursday we went to AJ's Basketball game in Williamburg with Gma, Gpa, Abs, Em & Aj. Saturday Gma babysat while Gpa, AJ, Em & Dave went to the Hockey Game at the I-Wireless Center. So as you can see she's gotten lots and lots of family time which she just loves!

Time for another wonderful Mallards game tonight so back to work.