Mr. Pulse Ox

Mr. Pulse ox I am not happy with you today.

I think for the most part Logan is in the upper 60’s.  He will have periods of being in the low 70’s but for the most part he hovers right around 68-69. 

I heard back from Dr. Del Nido at Boston and he said that the cardiologist’s will be taking a look either today or tomorrow and then we will know what they want to do.  He said that they are going to want to do a cath to determine exactly where the scar tissue is and exactly how bad it is.  For those of you that don’t know or don’t remember a cardiac catheterization is to take more accurate pictures and collect more data such as pressures inside the heart.  They probably won’t know whether they need to operate or not until one of those is done. 

Dr. Patel is seeing Logan every week right now to make sure there aren’t any dramatic changes in him.  Last week when we he saw him, there wasn’t any and Dr. Patel didn’t do an echo just a clinical exam.  Tomorrow he sees him again and will most likely do an echo to see if there is any more scar tissue growing.  I think that Logan’s pulse ox is definitely worse even in the last two weeks but I am not sure if this is because of the scar tissue or from the collaterals.  His color at times just looks horrible.  Scott and I will look over at him and just shake our heads because he looks so purple. 

On a happier front, Logan is sooooo happy.  Is really a very happy baby.  He doesn’t know his oxygen levels suck.  He just laughs and plays all the time.  He is starting to get better head control which is great because he can get a better view of the world.  He is eating good.  About a jar of baby food a day.  He loves sweet potatoes, butternut squash, and bananas.  He is still quite sleepy.  He sleeps most of the day.  He usually has two ‘awake’ periods during the day; one in the morning and one if the afternoon, those last for 2-3 hours and then the rest of the day is spent sleeping.  He wakes up to eat or play for about 30-40 mn. and then goes back to sleep.  Many times he wakes up just to eat and then goes immediately back to sleep.  But he needs all the rest he can get, so I am not worried about that right now. 

HE LOVES STEALING MOMMY’S GLASSES. 

I will let everyone know as soon as I hear anything from the team at Boston, and let you know how our appointment goes tomorrow.

Some Bad News about the TAPVR.

Well, we had a pretty crappy week around here.  After our last appointment with Dr. Patel I was still not convinced that his Pulse Ox (oxygen saturation) was 75.  So I took matters into my own hands an decieded to get a hospital grade pulse ox machine.

 

AND GUESS WHAT IT SAID??? It said his oxygen saturations were between 65-70.  I knew it.  We tried his pulse on his foot, on his toe, on his hand, everywhere.  We were much more thorough than the nurses could have been in a 10 mn. exam.  I called and let Dr. Patel know, and had another appointment the following week.  This time when the nurses took his pulse ox it was 68.  Much more in tune with what we were witnessing at home.  Dr. Patel did an echo and this is where we found out the problem. 

There is scar tissue growing at the site of the TAPVR repair.  TAPVR (Total Anomulous Pulmonary vein return) is when the 4 pulmonary veins aren’t attached to the back of the heart like they should be.  Instead they join together in a confluence behind the heart.  Dr. Del Nido sliced this confluence open and stuck it to the back of the atrium so that they are now attached to the back of the heart.  The problem that Dr. Patel found on Tues. was that there is scar tissue growing at this site and obstructing the flow of oxygen rich blood to the lungs.  I was very upset to hear this news.  This is not a completely unexpected place to be (5-10% of all TAPVR repairs grow obstructing scar tissue) but it definitely isn’t a place I would like to be.  Luckily, so far, the scar tissue is only in the confluence and not in the veins.  If the obstruction was in the veins, there would be a lot fewer options, and it would be much worse news.

Currently we are waiting for the team at Boston to review the echo and come back with their recommendations.  Dr. Del Nido did say that most likely they will need a cath procedure done to determine the amount of scar tissue that has grown and then it can be determined whether Logan will need another open heart surgery or if something can be done in the cath lab. 

On the feeding front we are doing a lot better.  Logan is eating about 1 jar of baby food split over three feedings a day (this doesn’t sound like much, but this is greatly improved from the just a couple of spoonfuls he was taken a few weeks ago.)  He also loves eating baby biscuits all by him self.  The more control he has with the feeding the better it seems to go.  Even when spooning him baby food if I occasionally give him the spoon and let him put it in his mouth, the happier he is.  He definitely doesn’t like to be forced-fed.   Here are some adorable pictures of him with a rice biscuit (he LOVES these.)

Here is a picture of Logan’s scar right now.  I think it looks pretty good actually.  The other scars you see are from the 2 chest drainage tubes (those allowed blood to escape his chest after surgery) and the other smaller holes are from the pacing wires (in case his heart couldn’t pace itself after surgery – he never needed them) and from the arterial lines.  The other thing that is very interesting about this picture is that the prominent blue veins that you see are the collaterals that are growing and giving him problems.  Those veins are taking oxygenated blood away from his lungs to the lower half of his body.  This is the main reason his O2 levels aren’t higher.  It’s really bizarre to be able to witness them growing.  Every week I see a new one popping up.  He has a bunch on his upper right shoulder. 

 

I am getting very anxious to hear what the team at Boston is going to recommend.  I HATE not knowing what the plan is….

Collaterals.

So after a few episodes of very heavy strained breathing and a few weeks of a lot of fussiness, Scott and I decided to buy a Pulse Ox machine for our home.  I thought that if I could just see that his oxygen levels were OK, I could relax a little bit about whatever was going on with Logan.  The Pulse Ox device  is just a device that measures ones oxygen saturation (for adults it’s the little thing they put on your finger in the hospital.)  Well, instead of making me feel better the pulse ox machine registered that Logan had oxygen saturations of 65 (FOR DAYS),  we obviously got nervous and moved his cardiologist appointment up by one week. 

So inevitably,  I was very nervous about our appointment and expecting the worse and for Dr. Patel to find something really wrong with Logan during the echo. 

Well it turned out Logan (as Dr. Patel put it) was trying to prove me wrong because not only was Logan NOT FUSSY AT ALL, during our apt.  his O2 levels WERE 75.  I couldn’t believe it.  Now 75 is fantastic but it isn’t 65 either.  The ideal oxygen saturation after a Bi-Directional Glenn Shunt would be 85, so there is something that is causing the O2 levels to be less than that.  In Logan’s case it is because he is growing collaterals (tiny little veins) that are rerouting some oxygenated blood away from his lungs.  If you think of a hose with holes in it, and trying to fill up a pool with that hose.  That is sort of what is happening.  The blood is coming out the holes/veins and taking a different path instead of going to his lungs.  Since Logan’s oxygen is 75 we aren’t going to worry about trying to, plug those holes (coil those collaterals in the cath lab)  right now, but just give his body longer to adjust.  The reason he is growing the collaterals is because there is still some high pressure in his pulmonary artery so the blood is flowing down other smaller veins (because it is easier) and the very nature of this causes they veins to get bigger and then more blood flows thru them (you get the cycle here.) 

So we just have to wait and see if these collaterals are really going desaturate him A Lot (like into the 60s) or if he will continue to hang out in the 70s.  If he stays in the 70s we will wait until his next open heart surgery to deal with collaterals.

 

Logan is still a tiny little guy.  He is weighing only 11 pounds at 7 months old.  I think that officially has him completely fallen off the charts.  He has grown in length though and is now 24 inches long (although, this is only the 2-3%) for length as well.  He is still not able to hold his head up for more than a few seconds at a time and there is no sign of any sitting up or rolling over either.  Now, cognitively he seems right on track.  He is playing with toys, trying to drink out a cup, chewing on pieces of fruit, and he has Mommy completely wrapped around his finger.  Whenever I walk in the room, people tell me he starts behaving very differently (as to get my attention.) 

I do however, worry about him getting bored having to just lay there all the time, but at this point I am not sure about physical therapy.  I don’t really want to stress him out, and part of me feels that whatever he is doing right now is what his heart can support, and that he will catch up when he is ready.  Him staying on track cognitively is more important to me anyway, so if that is where all the energy is going right now, I am happy with that. 

HAPPY NEW YEAR TO EVERYONE!!!