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.