Update on Stanford Visit and a Lost Tooth

Today was our last night in Palo Alto. It kick started with a pretty big event... Owen lost his first tooth!! I noticed a few days ago that his two bottom teeth were super wiggly.  This morning in the hotel Owen started getting upset and said "I can't find my tooth!"  It fell right out. 

Look at that cute grin!! The tooth to the right of it is hanging on by a thread and the two top teeth are going to follow very soon.  He is SO excited for the tooth fairy to come tonight. 

Now onto our appointments at Stanford this morning.  We headed to Gastroenterology clinic this morning for Owen's liver consult.  First we met with the PA and she took his vitals.. 34.5lbs, 41" tall.  Dr C. came in and didn't even introduce himself nor did he examine Owen during his quick five minute visit.  Worst bedside manner ever.  Looking beyond that, he said that he didn't see anything too concerning on Owen's labs other than his clotting number, or INR.  Normal range is 1.0, Owen's are 1.5.  He said it's most likely a Vitamin K deficiency and is putting him on Vitamin K supplements.  He ordered a few additional labs, we will give Owen extra Vitamin K for two weeks and we'll see if that solves his issue.  Seriously... we drove 900 miles for them to tell us Owen needs more green leafy veggies.  A little sarcastic perhaps, but couldn't that have been done by phone?  That was the full extent of our GI visit.  If the Vitamin K doesn't improve his INR numbers, then we will discuss a liver biopsy, but no one feels that will be the case at this point.

We headed over to the hospital for cardio clinic immediately afterwards.  We went over his vitals and had no changes to report.  Owen is doing fantastic, for his baseline, and so we moved on to see Dr Berenstein.  He was super thorough as always and actually examined his patient, unlike the GI doc.  We talked transplant in depth and I got all my questions answered.  

We plan to wait until we get the "all clear" from Dr C. in regards to Owen's liver.  The plan is to give the Vitamin K for two weeks, draw labs and check the results.  If Dr C. gives the "ok" we will move forward and he will immediately be listed for a heart as a status 2. 

*Status 1A is the top of list (kids admitted to the hospital or on IV medication)

*Status 1B is the next status (kids on IV medications, or failure to thrive)

*Status 2 (kids that are stable, or waiting at home on oral medications)

Status order in children may or may not make a big difference in the time they wait for a heart.  Owen could get a heart in a day or wait months, or even years.  When he starts to decline, he can always move up the list based on Status, but his time accrued on the list continues.  For example, if he waits at home as a Status 2 for six months and then declines, they may admit him to the hospital and bump him to a Status 1A.  At that time, it still shows he is on the list for six months so he may get a heart quicker than another child that was just listed as a status 1A.  So they may both be listed as a 1A, but the one waiting longer would take priority.  Does that make sense?

They gave Owen the clearance to wait in Phoenix for his heart!!  I am going to be working with the insurance companies and the Stanford financial advisor to get air ambulance coverage to make this work.  Usually, the patient needs to be within 3 hours of the hospital while waiting for a donor heart.  When a heart becomes available, we will get a call and we have to the hospital in a timely manner.  They need to do a full pre op workup on Owen, then get him into the OR to be prepped for transplant.  A commercial flight usually doesn't work out because heart offers most often come in the middle of the night and there aren't any flights leaving the airport.  So we will have to have air ambulance ready to go at anytime day or night.  Waiting in Phoenix, at home, is a HUGE blessing!!

I have mentioned about Owen's sensitized antibodies in the past.  The doctors discussed Owen at their HLA meeting last week and decided that Owen would benefit from starting IVIG (immunogobulin) treatments soon.  Dr B is totally on board with us getting these infusions done at Phoenix Children's as well!!  This again is a huge blessing as he will need a 10 hour infusion every two weeks for the first three treatments.  Then we will move to a once a month infusion.  This will {hopefully} reduce his antibodies and help us find him a heart sooner, as well as help him with post transplant rejection.

I then discussed with Dr B about getting a second opinion from Boston Children's and he was fully supportive!  They gave me his cath and echo CDs  and said they were more than willing to speak with the team at Boston to answer any questions they may have.  I appreciate their supporting us in this.  I just think it's smart to always get a second or even third opinion when it comes to medical care, especially something as complex as a heart transplant.

Dr B agreed that we can come back in a couple months after Owen is listed.  So the end of September, we will be back and Owen will have been listed for a heart for about two months at that time.  It seems so surreal.  I am feeling confident in our decision to move forward with transplant, but I am still in shock, like a punch in the gut.

We headed to the lab after cardio clinic and Owen had more antibody labs drawn, including further liver testing.  He cried and the lab tech says "Oh .. he must not be used to getting blood drawn!"  Does any child get "used" to it?  I pray that he never gets used to being poked.  It's not fair.

We had a fantastic lunch at the Creamery out on the patio.  We are now back at our hotel with the patio doors wide opened enjoying the cool weather.  We will make the 12 hour trek back home to Phoenix tomorrow and welcome the 117 degree weather.  Our plan is to enjoy the last four weeks of summer vacation before Kam goes back to school.  It has been a fantastic vacation together and I will blog about it the rest of the week.