Robert

On Robert’s birthday we had a star named after him funded by the Loma Linda Shining Star Fund.  Kinko’s was not open by the time I got the certificate so I will be handling that on Sunday or Monday and will make that available here to view.

I do have a picture from Google Earth that shows Robert’s star.  You can see that here.

 I will update this post when I get everything complete.

A fund is in the process of being set up and will be available for use by Loma Linda Children’s Hospital – Cardiac Care Unit.  I will of course get the info posted when it becomes available.  I am also going to see if I can get something setup so people may donate online instead of mailing in a check.  I will post more when I have it though.

Gina and I believe we have found a Mortuary, Cemetery, and Church for Robert.  We are in the process of making plans and believe that the services will probably fall somewhere between Wednesday and Friday.  I will post the dates and times when I have them available.

There has been some change.  Robert’s seizure activity has increased.  The Neurologist feels Robert has suffered significant brain damage to the entire brain, specifically higher function.  He feels some basic function may still be intact.

The cardiac surgeon removed the ECMO machine from Robert today.  It was against what we wanted but the surgeon felt we were wasting resources.  Robert has consumed about 3 gallons of blood throughout his stay, which he was bleeding just about as fast as it was going in.  It was not thought that he was going to live through this procedure, but he surprised us all.  After a little drop in blood pressure the doctors adjusted his heart medications and was able to get Robert to tolerate pumping without any help.

Even though Robert’s seizure activity has increased Gina and I would like to wait till Friday to make any further decisions.  The cardiac surgeon has set up an MRI to evaluate Robert’s brain further.  At that point I feel we will be in a better position to make a final decision.

There is more to say but it is time to go to bed.  I will write more tommorow.

As you may or may not know Robert is in the hospital at Loma Linda.  Let me first give you a bit of history.

Starting last week, Robert began to sweat more than usual when he was feeding and his limbs were cooler.  From what we understood, the sweating just meant his heart was working too hard and needed some rest.  The cooler limb issue we chalked up to the type of clothes he was wearing, since he was wearing pants with open feet instead of the more common one piece with covered feet.  We put socks on his feet and thought he was fine.  It seems these were signs of lowered blood flow because of the shrinking VSD (Ventricular Septal Defect) and the beginning of congestive heart failure.  However, we were never educated about what signs to look for and never thought that this was coming.  No one even warned us of how potentially lethal and explosive a common infection could become.

He originally went in for difficulty breathing at San Antonio Hospital on Saturday, and they treated him for an infection with possible pneumonia and congestive heart failure.  His skin color was grey or ashy and showing definite signs of low blood flow and oxygen.  After they were unable to get a reading from the pulse/oxygen meter they just opted to give him oxygen.  After some further testing they found that his sugar level was at 2, which they also treated him for by giving him dextrose.  At this point, Robert began to look lethargic while laying on the bed.  He was still conscious and looking at us, but his movements where very slow.  They made it clear that they would not be able to treat him there and requested he be transferred to Loma Linda.  He eventually was, and there his outlook changed.

His doctors at Loma Linda felt he had congestive heart failure but they were not convinced about the pneumonia.  Instead, they said that he had sepsis from an overwhelming infection and that it needed to be treated immediately and that he was very sick and in a critical state.  His liver was swollen and his kidneys were failing.  A Cardiologist was called in to look at his heart.

The Cardiologist found was that the VSD had almost completely closed up, so it was supplying almost no flow to the body or brain.  Was it enough to provide his brain with the oxygen needed?  He did not know.  Later, the Cardiologist said that the type of surgery he had at Cedars Sinai was exactly the type that the Loma Linda doctors stay away from because this is a known outcome.  He suggested a procedure called the Damus Kaye Stansel with a BT (Blalock-Taussig) Shunt.  He said that this is the surgery Robert should have had in the first place, not the Pulmonary Artery Band or Atrial Septostomy.

The next morning the surgeon came by and took Robert in to emergency surgery, where he would do this new procedure to get correct flow to Robert’s body and brain.  He felt it was a last ditch effort to save Robert’s life.  After about 8 hours the surgery was over and it was successful, although Robert needed to stay on the ECMO (Extracorporeal Membrane Oxygenation) machine to help his now exhausted heart.  The surgeon said that he was still very sick and that, although the surgery was successful, Robert was far from being out of the woods just yet.

Today Robert is sedated, on the ECMO machine, and is still in sepsis shock.  His liver is still swollen and his kidneys are still not functioning.  He is bleeding 100cc an hour from his surgery site as a result of the ECMO machine.  This is because they must keep the blood thin enough so it doesn’t clot in the machine but thick enough so his wounds do clot.  Although 100cc is a lot, they hope his liver will regain function and start the clotting process soon.  They have also stopped hemodialysis (cleaning of the blood through the ECMO machine) with the hope that higher levels of normally occurring toxins will trigger the kidneys into action.  If the levels get unhealthful, they will start hemodialysis again.

Robert also had two seizure episodes of the right arm.  They explained that this happens because of a loss of oxygen to the brain.  The seizures could be coupled with brain damage or not.  There is really no way to tell until he awakes.

Throughout the next few days they will ultrasound his heart and look at its function.  If it doesn’t improve within about 4 days or so they will stop heart support.  Any improvement will, of course, extend their willingness to continue support.  They will also be doing some brain images to look for hemorrhages.  If there is any blood on the brain, they will stop heart support.  This is because the thin blood needed for the heart machine is not thick enough to stop the bleeding on the brain; the bleeding on the brain would just get bigger and bigger.

At this point, we just wait around and hope for some improvement with Robert’s heart, kidneys, and liver.  I will try to update this more as I get new information.

There was some recent development that we were at first optimistic about.  First, it seemed like Robert was trying to breathe on top of the respirator, which would have meant that his body was trying to take over.  Unfortunately this was not the case.  It was actually just a problem with the piping.  When the piping was changed out, the supposed over breathing stopped.  Then there was also some movement of his face, eyes, fingers and toes.  We felt good about this, but this could occur regardless of what condition Robert’s brain is in.

Robert is now also on an EEG machine to record his brain electrical impulses.  In the morning the Neurologist will examine this and make a determination whether or not his impulses are normal or abnormal.  They explained that this is a crude measurement, but will give us some idea of the brain’s state.

So for now we wait.