Saturday, July 30, 2011


Shelby's O2 level fell to 75% during her test, but mostly stayed at 79% - NOT good.  The cardiologist has to do the "official" reading of the test, then that info will be passed on to the pulmonologist, THEN her hepatologist.  Then, we hear.  Insurance called today denying the oximeter unless the patient is on oxygen at home.  After relaying this to the pulmonologist's nurse, it looks like Shelby will be on oxygen.  Sigh...we don't know what all this means yet.  I will keep everyone updated.  Please pray.

Shelby and her Pillow Pet that she got for doing so well on her test.

Silly Shelby hugging her favorite 7-Eleven that we usually stop at on the way in and on the way home (bathroom breaks) from Chicago.  What a nut!

Ready for the test to start.

Patiently waiting.

Wednesday, July 27, 2011

It only took 8 days!

So here I am (finally) doing the update for last week's appointment.  Not too shabby, eh?

Shelby's surgeon & hepatologist were both happy with her growth.  Her wbc & platelets looked alright; nothing like we (us & them) expected after surgery, but we'll take it.  The blood was flowing good through her shunt so she was taken off the Plavix - yay!  Her Vitamin A level is quite low (always has been a battle to keep that up) so now she needs to add a Vitamin A supplement to her regime.  Drop one pill, add another :-(  Her oxygen (O2) saturation level was low, though.  90%.  It needs to be closer to 98-100%.  It used to be.  90% will get you put on oxygen if you are in the hospital.  Not a huge surprise, but sort-of after her "normal" PFT readings in June.  We were hoping they were a fluke, but when we got home we borrowed our doctor friend's portable oximeter.  I spot-checked Shelby's O2 a lot.  It wasn't good.  It was not a fluke in clinic.  In fact, after swimming (and then warming up) Shelby's O2 was only 84% :-( :-( :-(  NOT.  Good.  At.  All.  This prompted me to call her pulmonologist's nurse and relay all this new info to her.  She spoke with him and he ordered an oximeter for Shelby through home-health and wanted her cardiac stress testing bumped up from September.  I got a call today that they had a cancellation tomorrow so we will be abandoning packing for a day - we move on Sunday - and heading in to Chicago.  I don't know if we'll get the official results tomorrow, but Scott and I will be able to look at the computer screen and see what's going on.  Unfortunately, we know too much about the medical world (for non-doctors, that is) and will be able to get a pretty good grasp of the situation.  We need an answer as to why her O2 level is so low and most likely the answer is Hepatopulmonary Syndrome. Low oxygen saturation is the 3rd criteria that Shelby did not have, but seems to now.  If she has HPS, then she will get put back on the waiting list and receive many exception points to put her high on the list.  They don't mess around with HPS and for good reason.  Low O2 sats can take a toll on your heart.  Enough said.

Moving, 2 deaths from Durand church family this week and now this.   Prayers for strength my friends, prayers indeed.  Thank you.

Sunday, July 17, 2011

Please do not be shocked...

but, I am not just changing the header picture.  I am actually doing an update!!!

Let's see, where did I leave you all hanging...Shelby's PFT (Pulmonary Function testing) went fine.  BUT, her Pulmonologist still wants her to have a pulmonary stress test.  That involves a treadmill and doing the PFT's.  Shelby hates this test.  It is hard for her.  She's had it once before.  She has to have a Cardiologist present for the test since she's followed by a Cardiologist.  Whatev.  This delays the test until September, but all her doctors feel its o.k. to wait until then.  She has been doing well this summer with little to no chest pain.

She has done 2 weeks of day camp, and, like years past, has LOVED it.  I am very pleased with the staff at Camp Winnebago for handling the 6 meds I had to send with Shelby to take every day very well.  There is no way to work her meds to less than 5 doses a day when there are 15 meds resulting in 30 pills a day.  

Tuesday she has an abdominal ultrasound to check the status of her shunt and she sees her Hepatologist & Surgeon.  LONG day in Chicago for Shelby and her parents!  Please pray that all looks well, specifically that her white blood cell count is normal, that her platelets have increased and that her spleen has shrunk since her last ultrasound in March.  Hopefully (fingers crossed) she can stop taking the Plavix.

Riley just got back from a week at girl scout camp.  While it became very tough on this Mommy mid-week missing her girl, Riley had a blast!  

Avery did 2 weeks of 1/2-day Kinder Camp through Camp Winnebago and LOVED it, too.  Yay!  

Scott & I have been busy packing as we are moving to a brand-new house August 1st.  Yippee!  We will be renting it so we are NOT gaining homeowner responsibilities other than having to shovel the snow in the winter (they do that for us where we are now).  We just decided we needed MORE space and when our rent went up here, we started looking at houses.  We are very happy about this.  This move puts us in the Harlem school district, not Rockford.  While this is really good news in the long-run, it is hard to leave our Rockford public Montessori school.  The girls have mixed feelings about going to a "regular" school, but I know they will do just fine.

Please do not hold high expectations of me and trust that I will post an update after Tuesday's appointment, but, like usual it is my goal to.

Hope everyone is having a great summer!