1 week 3 Hospitals.

So we had a very busy week. 

Children’s Hospital of Philadelphia

Tuesday Scott and I flew to Philly to check out CHOP (Children’s Hospital of Philadelphia) and to meet with the surgeon there Dr. Spray.  I don’t even know how to explain what this experience did for us.  I guess in the most simplest form it gave us tremendous hope.  The hospital itself is amazing. 

The cardiac center is incredible.  On their website they describe as a ‘hospital within a hospital’  well, that is no exaggeration.  The cardiac center has its own intensive care unit, step down unit, radiology department, pharmacy, labs, I could go on and on. 

It was a 15 minute (ugly drive) Philly definitely could use a makeover – from the airport to the hospital.  In the lobby a women named Liz met us. 

I had been talking with her on the phone for the past couple weeks setting this visit up and I was looking forward to meeting her because she had been unbelievably helpful to me on the phone as well as incredibly nice.  Meeting her in person was no disappointment.  She stayed with all day long, gave us a tour, introduced us to Dr.’s, answered a million questions, and was AWSOME.  She used to be a nurse in the heart center so she was very familiar with everything we were going thru and was very encouraging and understanding as to the emotions we had.  THANK YOU LIZ! 

We started the day with a tour.  Liz showed us where Logan would pre/post op and then the CICU (cardiac intensive care).  That is where Logan will be until his tubes/lines are out and he is eating independently, then he is moved to a step down unit where he would stay until he is ready to go home.  Liz showed us the play room, teen room, classroom, family rooms, nutrition rooms, and sleeping rooms that are available just for the cardiac kids and parents.    The hospital is very accommodating to families. 

Next we met with Dr. Spray.  He was totally different from my previous experience with pediatric heart surgeons.  He was very nice, calm, soft-spoken, patient, and spent over 30 min. with us.  He was amazingly confident though too.  You would have thought he was describing a tonsillectomy or something when describing this heart surgery.  He said that the Bi-Directional Glenn was very straight forward and that they do more than one of these a week.  He said that what makes this surgery slightly trickier and slightly more risky is the TAPVR (Total anomalous Pulmonary Vein Return) repair.  Dr. Spray was very positive and optimistic and when we left we felt so much better about Logan’s surgery. 

It was a long day we had gotten up at 5AM and got home at 11:45pm. 

Cleveland Clinic

On Wed. we met with a general pediatric surgeon at the Cleveland Clinic regarding his malrotated intestines.  He said basically said that Logan should not have any surgery done before his heart is fixed and even then it can still be questionable.  The problem with doing this procedure is that it is to correct a hypothetical problem.  A problem that may never happen, a volulus.  He said that a volvulus is like a volcano, it may never ever erupt, the problem is when it does it is really bad.  Basically a volvulus is when the intestines twist on themselves and cut off the blood supply (like a hose.)   We aren’t going to worry about this right now and we will discuss this later on in the year after we know how his heart surgery goes. 

Akron Children’s Hospital

Thursday Logan had a cardiologist appointment with Dr. Patel.  He had an echo done, he is no longer too happy about these.  Next time he may have to be sedated.  His AV valve is leaking more than last time (not great) and that was the only news there.  Dr. Patel said he may have a plan so that the surgeon doesn’t have to touch some of the pulmonary veins which would reduce the risk of the veins becoming obstructed after surgery.  Dr. Spray gave this (pulmonary vein obstruction after surgery) about a 5-8% chance of happening. 

 So here is the real news, his first OHS will most likely be in the next 3-4 weeks.  Dr. Spray said that it makes no difference in long-term outcomes whether the first OHS is done at 4 months or 6 months.  So, everything being equal Dr. Patel would like Logan to have surgery before cold/flu season begins – before November 1st.  (BIG SIGH) Dr. Patel is going to discuss things with the cardiologist at CHOP and then get back to me next week on when they want to get started.  Before Logan has his surgery they will want to do a cardiac catheterization procedure to gather more information about the function of the heart.  Here is an illustration, basically they just thread a tiny tube up through his artery and some how this gives them accurate readings on different pressures in the heart and lungs. 

Logan had a good week.  He is still sleeping a lot (like most of the day) but when he is awake he is smiling and cooing.  He loves to play with his hands and he has started to grasp toys.  He started to giggle out loud and I found a ticklish spot on his chest and on his side.  He is just the sweetest little thing.

But how do they go from this to this so quickly???

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Exciting News and Not So Exciting News.

EXCITING NEWS! 

A friend of mine has been working tirelessly on getting this accomplished. 

Good job Annamarie.

At 2:40 eastern time today, the national committee on newborn screening voted to YES to recommend pulse oximetry screening for critical congenital heart disease be added to the newborn screening uniform panel.

Annamarie Saarinen founder of 1in100 has been hard at work in Washington D.C. at Senate Hearing Committees and the like testifying, providing study data, working with the UoM among many others to make this dream a reality.

“I don’t even know what to say right now…still in shock. Was not anticipating vote until January.  Have to hug Eve and have a major cry right now.  It’s due time…all babies are finally going to be screened before discharge.  Policy priority #1: DONE!!!!!” Annamarie said.

Today is a milestone in CHD History!

Here is a link to Annamarie’s organization with a great article on why this is so important for CHD’s.  1in100

 To check out 1in100 on Facebook click here.

 Also, just so it is very clear all a pulse ox test is wrapping a band-aid looking thingy around a baby’s foot and plugging the other end into a monitor that will then read what the baby’s oxygen levels are, it takes all of two minutes and could bridge the gap between (I believe it is somewhere close to 40%) of congenital Heart disease that goes undiagnosed.  If all babies are screened before they go home it is estimated that only 4% could still be missed.  That is a lot of babies saved right there by a completely non-invasive and quick test.  You may be asking yourself  ‘why wouldn’t they already be doing this?’ I am sure that if you really think about it, it wouldn’t take you very long to come up with the answer.  MONEY.  Dr.’s are worried about the secondary cost to this.  Every baby that has an oxygen level that is low will then most likely have to have an echocardiogram preformed (ultrasound on the heart).  And what about the false positives that will scare the mother and father.  Blah blah blah.  The most important thing is saving the lives of thousands of babies born every year, let everything else fall in place after that.  If you would like to read an article that clearly demolishes these arguments click here  (Published in Journal of Neonatology June 2010). 

NOT SO EXCITING NEWS!

Back @ the Cleveland Clinic 

Thurs. we went to the C. Clinic to redo Logan’s Upper GI tests. 

It was raining and so everyone wanted valet. 

Cleveland traffic sucks and it took us 1 hour and 15 min. to make the typical 25-30 min. drive.  It was right at 7AM though. 

The test itself was pretty quick, I think the last time he had it done they did the whole bowl series because it took over 3 hours last time and this time it only took 20 mn. 

He looked so cute in his little hospital gown.  Believe it or not this is the first hospital gown he has ever worn. 

He definitely has malrotated intestines and a hiatal hernia and they will both have to be fixed via surgery.  I knew this was most likely the case but there was a tiny part of me that thought maybe just maybe this wasn’t the case.  What is very strange to me is that there was so much confusion about this at the other hospital.  At the Clinic everyone has just told me very matter-of-fact that surgery is standard when these things present.  The Clinic probably sees more of these strange occurrences.  Now I just have to find out when they usually recommend getting him fixed up. 

We are going to be going to CHOP (Children’s Hospital of Philadelphia) on Tues. to meet with their surgeon and a cardiologist.  I did some research and because Logan’s condition is so rare I thought contacting a bigger center than Ann Arbor would be worth it.  CHOP’s Cardiac intensive care unit is  has three times the number of beds and they have 50 cardiologists instead of MI’s 8.  I had also heard one Mother describe CS Mott’s Congenital Heart Center as very small,  gloomy, and depressing so I though maybe I should call around.  So far CHOP has been wonderful, very organized, friendly, and extremely accommodating.

Second Opinions.

 

So Wed. we got up bright and early and left the house at 7AM, sat thru over an hour of rush hour traffic, and made our way to the Cleveland Clinic to get our second opinion from their GI Dr’s.  I was pretty irritated by the time we got there because traffic was so bad but I was instantly put in a better mood when I saw that the Cleveland Clinic has valet parking.  I love valet parking. 

 

Even though Logan is barely three months old going over his medical history took over an hour.  Poor little guy.  This GI Dr. told us that they have two other kids with Heterotaxy and so they are pretty familiar with this condition.  That really relieved me because there is nothing that is more off-putting then hearing Dr.’s say that they have never seen this before.  We had one ER Dr. (a while back) come in and ask us if we knew that our child had Heliotaxy.  That didn’t inspire much confidence.  Anyway, they were very familiar with the associated GI problems and want to redo the upper GI tests and get some blood work on his liver because there is a small chance of a liver problem but most likely it would have shown clinical signs by now.  They did tell us that if he is malrotated that he will need the Ladd’s procedure on his intestines, they said that was standard. 

Logan had another good week without any major crying spells.  Well, other than he cried thru the night before we went to the Clinic. He was awake more this week and cooing and talking a lot.  He seems more interested in watching new things and looking at toys now.  Here is a picture of Logan with his Great Grandma (the one who says that he is growing a spleen right now).

He really likes his Great Grandma….

Most of the time….

Thurs. he had another cardiologist appointment.  His oxygen is still in the low 80’s which is very good.  He had an echo done and everything looked OK except for his A/V Valve is now regurgitating moderately instead of mildly.  Apparently this is not good and it may or may not be able to be fixed by the surgeon when he is in there doing the Glenn procedure.  If blood is leaking down then the whole pumping system isn’t working strong and it needs to if he is to get the Fontan procedure that will ultimately allow him to live.  The cardiologist said that it is common with these kids to have this problem and it will just be another hurdle for him.  I don’t want hurdles, I just want valet parking please. 

He upped his beta blocker medication and said he is hoping that buys us another 3 to 4 weeks before anything has to be done. 

He wants to see us back next week to get a pulse ox reading (just a little band-aid looking thing they wrap around his foot that tells them what his oxygen saturation is) and do an exam. 

Asleep.