Angie & Jim

No News Yetby Jim

Just FYI, we haven’t heard anything yet.  We don’t know if we can go to the cath today or not.  We’re still waiting.  I’ll post when we know.

A Second Opinionby Jim

This afternoon, Dr. Murphy stopped by.  Dr. Murphy was Angie’s primary cardiologist when we first moved here and had been until only recently, when they transitioned her over to Dr. Lui.  Dr. Murphy has taken on more of an administrative role for the heart clinic and so he doesn’t spend much time with patients anymore.  He does, however, continue to be involved in decision-making meetings over his former patients.  He’d been in Cleveland this week, but still aware of the situation.  He wanted to stop by and see how Angie has been, which was really nice of him.  He really is a great doctor.  Anyway, he said a few things that we thought were interesting.  One thing he mentioned is that when there is high pressure in the blood, it will act just like when there is lots of traffic on the street: some cars will spill over onto surface streets to get through.  With blood, he said that our blood with actually make new pathways to get around the areas of high pressure.  Sometimes when this happens, you get oxygen rich blood that finds another path to the oxygen poor blood, which is called a shunt.  He said they weren’t uncommon with patients like Angie.  He seemed hopeful that they’ll be able to fix them, if that is what has happened.  I think it helped Angie to see him so optimistic about things.  I’ve always been really impressed by his doctoring.

After he left, Angie made a really interesting point.  We know that the fluid build-up was causing abnormally high pressures in her heart before they drained it off.  It seems very reasonable that this high pressure caused a shunt to form which would explain this oxygen saturation problem we’re facing.  Seems logical to me.  Let’s just hope it was formed in a place that can easily be repaired.

Jon & Brittany came by to visit and we played a couple hands of All Hands On Deck, the card game we’ve invented.  It was fun to play and visit with family.  It lifted our spirits a bit.  Jon also helped me administer the sacrament and give Angie a blessing.  I’m really glad they could come.

I’ve been reading The Fellowship of the Ring to Angie over the last couple days.  We both love the book and Angie has always loved being read to while in the hospital.  We’ve often used the Lord of the Rings trilogy books because we can start from any of them and end anywhere without worrying about how it begins or ends.  While Tolkien can ramble on about the country side quite often, he really is brilliant in the characters he created.  We both love the friendships of those in the fellowship.  We just finished reading the part where Merry, Pippin, Sam, and Fredegar tell Frodo about their conspiracy to come with them.  Love that part.

So, as things stand right now, I think the soonest we could go home is Wednesday.  Obviously, things would have to go quickly and very well over the next couple days.  Angie’s saturation levels have actually looked really good for the last few hours (over 90, even while sitting up a bit to eat dinner), so that is a bit encouraging.  I even saw it get to 99%, but it was only for a split second before falling back to the typical 91-92%.

I’ve had two different people from work offer to donate some vacation time to me.  The lab has a program that lets you donate vacation to someone else who is in need.  There are restrictions about how it can be used, but I would be eligible this week once my vacation is used up.  I can’t say how much it means to me to have anyone even offer to do something so selfless.  I feel so strongly that my place is right here by my wife’s side, and it pains me to stress about work when I feel loyal to both my employer and my wife.  But, my loyalty to my wife trumps everything else.  I’ve managed to get some work done, but not much.  If I can work a bit during the day, I can make my vacation stretch a little longer.

Thanks for reading, and thank you all for all the prayers and support.  We love you.

The Next Few Daysby Jim

The doctors just came and chatted with us.  They talked to us about what they want to do over the next few days.  They are still not sure why her oxygen levels are so low, so they want to do some tests.  The lung doctors can’t do what they normally do because Angie’s plumbing is a little different than usual and the results won’t be very telling.  Instead, they want to do another catheterization and look specifically around the lungs and see if there is blood mixing.  If the reason her saturation levels are so low is that oxygen poor blood is mixing with oxygen rich blood by a shunt, the doctor doing the catheterization has some ability to do repairs and block off the area that is mixing.  One of the doctors this morning said this wasn’t uncommon for fontan patients like Angie.  If they don’t find any mixing blood then they believe it is Hepatopulmonary Syndrome, which is a liver-lung interaction problem and unfortunately, the only thing they can do for that is to put her on supplemental oxygen — the same thing they’re doing now.  We’re hoping that isn’t the case, since she can hardly stand up without having problems.

The doctor that does the catheterizations, Dr. Perry, has been doing them for decades and is very good at his job.  They want him to do it and he’s not in today.  They will wait until tomorrow morning and see if he can fit her into his schedule.  So, the earliest they could do it is tomorrow morning, but it may not be until later in the week.  It all depends on their schedule and availability.

We’re hoping and praying for the best.

Daily Updateby Jim

We’ve been visited by both the liver team and the lung team today.  The liver people said that there are some abnormalities on her liver that they want to keep an eye on, but nothing especially dangerous that they think could be causing the current symptoms.  They said they want to have her come back in about 3 months so they can check on her liver and make sure it isn’t getting worse.

The lung people came by and wanted to know all about her most concerning symptom: sitting upright dramatically lowers her saturations.  We did the experiment again so they would watch and they listened to her lungs and asked many questions.  They have a preliminary theory, and they talked about seeing this symptom in others.  That was somewhat encouraging that they have seen this before and know what typically needs to be done.  They were very hesitant to pass a diagnosis without discussing further with the cardiology doctors, but they were talking about a shunt in the lungs.  What happens (I think) is that blood exchanges improperly and so it is mixing in the lungs and thus not getting enough oxygen to the rest of her body.  The fact that she drops when she sits up would suggest that the shunt is in the lower part of her lungs or diaphragm, which gets more blood-flow when sitting up.  While laying down, that part doesn’t get used as much, thus keeping her saturation levels higher.  Seems like a reasonable explanation to me.

They didn’t say much more about it, or what is typically done for it.  They also said if the shunts are few in number and large enough, they can surgically repair them, but if there are many little ones, it is more difficult.  That was about as specific as they got.  They alluded to some tests they can do to verify more certainly if there are shunts — more accurate than just sitting up in bed.  I’ll let you know when we have more news.

Thanks for the love and support!

More Questionsby Jim

Well, things were going great: Angie was feeling well, we were weaning her off of the oxygen, etc.  Angie wanted to go for a walk, but I convinced her that she ought to try something a little less intense, like sitting in a chair for a bit instead.  (Previous attempts at walks have been really hard on her.)  She wants to go home and has been anxious to try and push herself to accomplish her daily goals.  So, we called the nurse and got her sitting in the chair.  Very quickly, her oxygen saturation levels got quite low.  Low enough that they called the doctors and ordered a stat chest x-ray and blood work.  There were 2 or 3 nurses in here very quickly as we got her back into bed and lying down.  They hurriedly put a face mask on her instead of the nasal cannula and turned up the oxygen to the max.

The doctors came and all looked a little concerned as they talked to us and each other.  The biggest concern they have is why this is happening.  During the whole thing, Angie remained calm and didn’t feel any pain or discomfort besides some strong fatigue while in the chair.  One of the younger doctors came in after their meeting out in the hallway and chatted with us for a minute.  His name is Dr. Perizo and he was very nice.  He wanted to try a little experiment with the oxygen saturation levels and sitting up.  They wanted to see if the low sats came from exertion or from body position.  So, they put the bed all the way down and let Angie lie for 5 minutes to see how she would do.  She got to 96% saturation, which is actually the best she’s been since she’s been here.  Of course, she was on a ton of extra oxygen.  She runs between 90-92% without any extra oxygen just normally with room air.  Then Dr. Perizo and I helped her to sit up in the bed and watched for 5 minutes.  It took a bit, but her oxygen slowly dropped to below 85% and her heart rate went up a little.  She didn’t feel any worse, but it was clear something was different.  We even tried swinging her legs over the edge of the bed and letting her sit like that, but it wasn’t much different.

Here’s the thing: I’m not sure this is anything new.  The few times she has gotten up over the last few days we unplug her oxygen sensor so she can walk away from the bed, and by the time we plug her back into the sensor, she’s lying on the bed.  We had never had her plugged in and vertical since she has arrived.  A couple of times getting up, she’s started to look really pale.  I think that this has happened a few times, but we’ve just not seen it.  I’m really glad we caught it so we can watch for it, but it certainly gave us a little scare.  The chest x-ray showed her pneumothorax has healed, which is great (but doesn’t explain the recent episode).  I think nothing new happened this evening, I think we just saw something that has been happening unobserved previously.  It is still concerning, but not as bad as originally feared, I think.

Angie’s doing just fine now.  Since everyone was so worried, the nurses wanted her on a mask, but she had just ordered dinner.  Eating was interesting.  She seems to do better lying down, so we reclined the bed, but that made it difficult to eat, so I fed her instead.  They let her put the nasal cannula back on and just hold the mask near her face and put it on between bites.  They wanted her to stay above 88% while she ate.  We were able to forgo the back-and-forth and just let the mask sit on her chest while I fed her.  She’s sitting now on the bed with her phone looking at facebook & such with sats between 90-92%, and she’s not wearing her mask (shh, don’t tell the nurse).

Now for the best part; this ought to give you a smile.  You’ve earned it by reading through this post.  So, Angie is on a “very low sodium diet” as per doctor’s orders.  The menu has a few items marked as low sodium, but she is very low sodium, so even some of those are off-limits.  Angie has had the turkey before, but of course she can’t have gravy.  Instead of just eating it dry, she decided to get creative.  She ordered some vegetable broth and mashed potatoes and just mixed them together to make her own gravy!  That’ll show those dieticians that are trying to foil our good flavor.  That’s why I love Angie.  Well, just one of the many reasons why…

Another visit from PAWSby Jim

A little while ago we got another visit from PAWS.  It was a pleasant surprise, since they just came by yesterday.  Today we were visited by two dogs, Cici and Guinness.  When they first came in, the patient sharing a room with us got really excited and asked if they could visit her too.  They okayed it with her nurses and were able to spend some time with her as well.  That made Angie feel really good that she was able to brighten someone else’s day too.

Cici is a Schnoodle and is a snuggler.  She made herself comfortable next to Angie right away and seemed very happy.  Guinness was the entertainment.  I’ve uploaded a video so you can see his performance.  After the show, Guinness sat with the other patient and then they swapped places and Angie got to sit with him.  Once again, it really brightened Angie’s day to have some very sweet dogs to sit with and love.  They ladies that came with the dogs were very kind and asked about our cat and we showed pictures and told them about how sweet our cat is.  The healing influence of animals is amazing.

Cici

Guinness

Each of the dogs has a little trading card picture that they leave with each patient.  It has a picture of the dog on the front and information about the dog on the back.  They are really adorable.

Another updateby Jim

We haven’t heard the results from the CT scan, but Angie’s been back for several hours.  In the meantime, we’ve been visited by a dietician here at Stanford to help us understand how to help Angie gain some weight over the next few months.  Her name was Johanna and she was very nice and very helpful.  The bottom line is that Angie needs more calories.  The doctor actually told her things like butter, ice cream, and cheese sauce are great for dense calories.  Not often does a doctor tell you to more eat cheese sauce.  The catch is that she also has to be on low sodium to help keep the fluid from building up.

I’m really glad we asked to talk to the dietician because it helped to clarify some things and get a better understanding of what we’ve got in store for us in the coming months.  She also mentioned that there is a dietician that works in the heart clinic that Angie goes to, so we will probably arrange to have a few visits while Angie comes in the future.  That should really help keep an eye on things and get her back to normal.

Bring on the cheese sauce!