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.