From St. Louis to Houston

Our Current Condition

Reiss has been relatively healthy since my last post.  She had hemoptysis (coughing blood) at the end of July in huge amounts, then again at the beginning of September in small amounts.

(Knock on wood) We haven’t had any hemoptysis episodes since September.  This is the longest running streak of no blood since her first showing of blood in November 2014 where she waited about 2.5 months to cough up blood again.  We are sitting at about 3 months + right now.

Second Opinions

From softball tournaments to bracelet sales to t-shirt orders, the community support for Reiss the past 6 months has been amazing.   I felt like we had a huge crescendo of hype in regards to Reiss’ upcoming surgery and finished with…nothing. Nothing but two cancelled surgeries and notes about “let’s wait until we get more information.”

Well, we have more information, folks.

We sought out opinions from the nation’s leading pediatric cardiology departments – Boston Children’s (#1) | Texas Children’s in Houston (#2) | Children’s Hospital of Philadelphia (#4).

Our options are as listed below.

Comparison of options (2)

After reading the above table, you are probably thinking…woah, 1) that is a lot of information and 2) the Fontan looks like the way to go.

Here is a general outline of the response from each compared to that of St. Louis Children’s Hospital:

  • Children’s Hospital of Philadelphia: Don’t do the Fontan.  Option B is probably most likely, but if Option C was plausible, go with that.  Fontan should not be an option because of her reoccurring hemoptysis.
  • Boston Children’s:  We can most definitely do Option C, we do it all the time.   Fontan should not be an option because of her reoccurring hemoptysis.
  • Texas Children’s:  No matter how many echos and MRIs we look at, we won’t really know if the ventricular septal defect (VSD) is in a place to allow for Option C.  We would go into surgery with a plan – Option C, unless the VSD is too remote from the aorta, then Option B.   Fontan should not be an option because of her reoccurring hemoptysis and the narrowing in her pulmonary arteries.

After much discussion, we decided to go with Texas Children’s instead of St. Louis.

The Plan

We will visit with cardiology, the surgeon, and get an echo and EKG at Texas Children’s on Tuesday – yes two days from now.  This will be a great opportunity to meet the doctors and nurses face-to-face and also put together a surgical plan for Reiss.

Monday is a “free” day for us.  It will be a much needed 24 hour vacation with friends in the Houston area.  Tuesday will be filled with appointments.  The staff has reserved the cath lab for Reiss on Wednesday on an “as needed” basis.  The surgeons and cardiology team will decide if Reiss needs a cath to block off collaterals after they see her on Tuesday.

Please pray for our safety as we travel 10-ish hours to Houston to get the best care for Reiss.  Please also pray the doctors will see what they need to see in order to make the best decision for Reiss’ heart surgery and future caths.

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