I have no idea what the title of this post should be!

I have been avoiding updating on here and I am not exactly even sure why.  Everything is so up and down and all over the place that it never seems like a good time to update.  I tell myself that I will update once a decision is made, or we have a better plan.  But maybe this is it.  Maybe things are always going to be up and down, maybe plans our going to always change.  That is a very hard concept for me to accept but I am working very hard at trying to be present vs.  constantly worrying about the future. 

Logan’s sats continually seem to be all over the place.  After his sats being being low 70’s and having the fontan discussion, we had a cardiology appointment last week and his sats were 87.  I talked with Dr. Del Nido on the phone (seriously this man is an angel) and he said that he does not want to do the fontan this fall unless his sats are really low or his valve is giving out.  He said recovery would be a very very long time (I imagine in my mind that this means months).  So this is terrific news.  I am waiting for Dr. Del Nido and Dr. Patel to officially have a conversation about this, but it is now looking like we can wait until the spring for the Fontan.  I am very excited about that news!!!

His last echo showed that his pulmonary artery is still very small.  This means that before he has a fontan they will need to do a cardiac cath to determine if his PA will even allow the extra blood flow that it would be getting after the connect the SVC directly to the PA.  So not being a canidate for a fontan is still a very real possibility for Logan.  I was looking up the statistics and many papers were reporting that only 25% of RAI (right atrial isomerism) babies are canidates for the fontan after the glenn surgery.  Not great statistics but Logan does have a few things in his favor right now.  Fairly good sats, no AV valve regurgitation, and no reoccurrence of PVS (pulmonary vein stenosis).  But his biggest obstacle is going to be his small PA.  I am trying very hard not to think about life if we can’t get the fontan…..I am imagining that this would mean transplant much sooner. 

Logan has been in a great mood for the past few weeks.  Even at his last cardiology exam everyone exclaimed that this was the happiest he has ever been! 

For the first time in his life he didn’t scream bloody murder when putting on and taking off the EKG leads….

He just played!!! He is obsessed with these little foam letters and numbers from Alex Jr.  They stick to the side of the bathtub when wet.  He loves them and even falls aspleep grasping them. 

He has been interested in things and has started letting other people hold him.  He still spends the majority of the day sitting in his swing but he wants to do more now.  Oh, and he officially has rolled onto his stomach all by himself.  Not a full roll yet but we are getting there.  He is now 14 months.  He weighs about 16 pounds and finally is in 6-9 month and some 6-12 month clothes fit him. 

I was shocked that he let me put him in this swing.  Typically that would be waaaay too much stimulation for him, but on this day, he loved it.  Because he can’t sit up on his own I had to stuff his blanket in there to prop him up, but he really really liked that baby swing that day!

He is still on his feeding strike.  Occasionally, we can get him to take 2-4 bites of chocolate pudding or something else irresistible but then he is done.  He wants nothing to do with food.  Nothing. Because of his very abnormal organ arrangement feeding tube placement was deemed too risky by his general surgeon.  So right now it just is what it is….

We did have a bit of a scare this past weekend.  Logan started vomiting on Fri.  and then for the first time I had ever seen he vomited up what appeared to me to be bile.  It was bright almost flouresent yellow.  I got very nervous and called his pediatrician.  Between calling the his ped, his ped card, and the on-call general surgeon they all agreed that it would be safer to have him checked out at the ER.  BIG UGH here becuase, although I have a tremendous appreciation for everything that has been medically done for Logan, the ER has never been a very good place for him to be.  The ER tends to be a place where none of the doctors know anything about him and they tend to love doing intervention after intervention in there. 

(Waiting in the X-ray room.  He always scrunches his legs like that when he is scared. )

(Labs that I was refusing…)

After the x-ray they determined that Logan didn’t have an intestinal blockage but they still wanted to do labs.  I didn’t understand why?  We were there to see if he had an intestinal blockage, once that was ruled out we should be able to go home.  I asked the attending why he would want to do labs now and he looked at me and said….’well, we always order labs.’

Ummm…I need a much more compelling argument than that.  Getting vials of blood from Logan is about as traumatic of an experience that you can have.  His veins are tiny and fragile, and it is very hard to get very much blood from him.  To fill up a bunch of those vials would take hours, probably 15+ pokes, sometimes ultrasound machines, and usually only the pediatric intensive care nurses or the ambulance transport team can even ever get a vein. 

Anyway, we ended up having to just refuse them.  They told me they wanted to check and see if Logan’s electrolytes were off.  REALLY??? He has been throwing up since Fri.!!! I can tell you his electrolytes ARE off.  Well, we want to know exactly how off (they said) my response was, his eyes and his Fontanelle aren’t sunken, and he just had HUGE crocodile tears in the X-ray room. 

My issue with labs beyond how traumatic and painful it is for Logan is that the doctors always find something ‘outside the normal range’ with his labs.  Then they get all worked up and start chasing those numbers.

But we succeeded in leaving the ER with the labs still sitting on the edge of the bed as we walked out…

(Haha Labs…you lose!)

Currently, Logan is still throwing up and not eating much.  Curiously, he has no other symptoms.  No one else in the family is sick, he has no fever, and beyond throwing up he seems to be in a great mood. 

To quote Logan’s cardiologist at Boston Children’s Hospital, “Logan ALWAYS has something up his sleeves for us….”

Next ped card appt. is next week. Most likely just a clinical exam.

 

The Gastroenterologist.

On Tues we saw Logan’s gastroenterologist.  I was NOT excited about this appointment for two reasons.  One being I felt very blown off by him in the last couple weeks and the second reason was that his main area is NUTRITION.   Thank goodness I got Logan to gain that pound when I did because ever since his last respiratory illness he has completely refused ALL food.  I keep trying about 3-4 times a day to feed him hoping he will just snap out of these aversions….nope.

Not a chance. 

He lifts his hands to his mouth, squeezes his lips closed, and whines.  He wants nothing to do with eating. 

Ahhhhhhhh………………..

If only he knew what the alternative was…..

So we started off by clearing the air, and I told him that he was a very hard man to get ahold of.  I explained what happened and he kind of shook his head  “from now on you call me, don’t talk with Fellows or a nurse you call me.”  We worked out a plan for future  situations and moved on to the next big elephant in the room.  Logan’s weight. 

L

Logan is way below the 1% mark for weight.  If you can picture this I would say he is about

-50% on the weight chart.  (Thank god, I packed that pound on him when I did.)  After going over various options he said he wanted to speak with Dr. Patel.  So while he spoke with Dr. Patel I met with his preferred dietician.  She did all the calculations that they do, ideal body weight, calorie consumption, daily needed calories, ect… Turns out for Logan to just get on to the weight chart at around 1-2% he needs to weigh over 2 more pounds.  I told this nutritionist all of the things we have tried and failed at…. increased calorie formulas, thickeners, rice cereal, ect… I explained how there was a one two-week period where he ate and I fed him very rich food and he gained a pound.  She had one more idea that we hadn’t tried yet….

Supposedly this ridiculously expensive can of overpriced cornstarch, is supposed to add undetectable calories to formula.  It is not supposed to change the flavor or texture but it is supposed to ass 14-28 per bottle feeding.   Then the doc came back into the room with this….

It is ALL TO familiar to us heart Mom’s but to those of you that have the privilege of not knowing this an NG tube.  A nose to stomach feeding tube.  He said that he really wanted Logan to just have one now but the hospital policy has changed and now it is very complicated to give a child an NG tube.  The nurse has to do, and then a chest x-ray must be done, home health care must be set up…. So instead he said that he would give the nutritionist 2 weeks to work her magic on Logan but at the end of that two weeks if Logan had not gained 4 oz per each week his recommendation was going to be a feeding tube.  He said that he wanted to start with an NG to make sure that his stomach and GI abnormalities could handle the increase in amount and if it does then he wants to put a G-tube (a surgically placed tube in the tummy).  He said that at Logan’s age and NG tube was not a good long-term solution anymore. 

We also discussed Logan’s rectal prolapse and his rectal bleeding.  He said the prolapse is just a nuisance but nothing serious and that the bleeding was not concerning unless it was dark-colored, had clots in it, or was happening very often.  I showed him the big tear and he just grimaced.  Poor Logie….

So we are now on a frenzy to get him to gain weight.  I do have to say that  I am getting a second opinion from another GI specialist this coming Tues.  This was a doc that was recommended by the pediatrician so I thought I would give him a try too.  I am sure that he will have similar recommendations but if I like him he would be more convenient to get to.  Going to the Cleveland Clinic is a hassle.  Parking is so expensive, traffic is horrible, and the hospital is just Mammoth, its like its own city. 

The thought of putting Logan thru another surgery right now is just gut wrenching.  I am really hoping that he puts some weight on.  I don’t understand why he won’t eat??? Its so simple…. Please baby just eat….

Today we are off to see Dr. Patel (the cardiologist).

A Double Lung and Heart Transplant???

So in my previous post I wrote that I was very nervous for our appointment at the cleveland clinic and that I couldn’t put my finger on the exact reason why.  Well, for whatever reason my instinct was right and this appointment was anything but what we were expecting. 

When the doctor came in he talked about Logan’s condition and told us that many of these kids need a heart and lung transplant.  He said they can put it off for a long time but eventually we will most likely be at that point.  I was shocked, scared, and be honest a little skeptical.  I asked the doctor some questions and based on his answer I began to question whether he really even understood Logan’s anatomy.  He did say he was a little confused as to what Dr. Del Nido did during surgery so I set up a phone call with him to speak with Dr. Del Nido personally. 

Never-the-less after our conversation I was still not quite convinced that this doctor fully understood Logan’s condition.  Maybe it was unfair to expect him to pick up so much information in such a short period of time (Logan is, after all, very complicated.)  Immediately, after we got done with this appointment I called Dr. Patel and asked him to tell me this wasn’t true, that my gut was right and that this doctor didn’t understand Logan’s condition at all.  Dr. Patel said he wanted to re-look at the post op report and to make sure he didn’t miss anything before he could give me a definitive answer (he is extremely meticulous, I don’t believe this was really necessary) and when he called back (which was 2 of the longest hours of my life) he said that he did not believe he missed anything and that this is not a condition that would lead to a heart and lung transplant.  Big Sigh………..

Needless to say we feel much more comfortable going back to the doctors at Boston.  I think that although it would have been very conveniant to do this close to home, the learning curve it probably too big to bring new players right now.  After two days of continuous emails we have all the details worked out and we are headed to Boston today at 5pm.  Our plane gets in around 8pm and then they would like us to take Logan immediately to the Emergency Room to be evaluated.  I think that this is an over reaction, I think we would have been fine to take him to the hotel and check him in the morning, but this is not a battle I want to fight.  A doctor that we are very familiar with is going to meet us in the ER and evaluate him. 

Dr.Del Nido also has a surgery scheduled for 7 days out in case the cath doesn’t work.  The goal of the cath is to widen the confluence of pulmonary veins so the adequate blood flow can return from the lungs to the heart easily.  Right now there is some scar tissue that is blocking the flow.  If a balloon doesn’t do the trick then Dr. Del Nido said that he can do a surgical repair with very good results.  We are just going to cross our fingers that this darn cath is going to work.  Once again I will be updating Logan’s Facebook page more frequently than this wordpress site so if you would like to join his facebook page please feel free.  Heterotaxysyndrome-Logan Spyker

Sunday Night.

I am a little nervous for our appointment at the cleveland clinic tomorrow.  I can’t even put my finger on what I am so nervous about.  I guess you always have this fear that they are going to find something.  It will most likely be a long day.  We have a radiology appointment first (chest x-ray) and then we are going to have an EKG, possibly and echocardiogram, and then we will meet with Dr. Larry Latson.  I also have all my faith in this man to save Logan from another open heart surgery.  I am really hoping nothing changes once the whole exam is done. 

Logan has been a little cranky, I am not sure if it’s because of his progressing cyanosis or if he is teething.  Everything has started going in the mouth but no major drooling has started.  He does have labored breathing that is getting worse.  Even in the last week his breath has gotten more labored.  Not really sure if this makes him uncomfortable or not.  I would hate to feel out of breath all the time, but maybe he doesn’t know the difference.

We  found a food HE LOVES!!!

Who would ever have thought? Sweet potato, corn, and apple? Anyway, he ate half of one of these containers in one feeding!  This is to date the most he has ever eaten at one time.  He also later this evening drank 4 oz. of milk.  I know that doesn’t sound like much but for him this is a lot.  Usually he only drinks 2-3 oz.  He must be growing! That would be great since he still fits into some of newborn clothes. 

So see how Logan’s milk looks pink? That is not bad lighting his milk is pink.  Its filled with medicine.  In this particular bottle he has 5 medicines.  Sildenafil (Viagra), Captopril, Penicillin (for the asplenia), Lasix, and aspirin.  They are compounded with some flavoring which is why its pink.  He doesn’t seem to mind it at all.  And this way he doesn’t get the stress of having syringes of medicines forced into his mouth.

 

This was one of THE BIG KEYS to helping get him over his oral aversions.   Forcing syringe and syringe of medicines in his mouth made he him not want to eat at all.  For those of you that don’t have children with congenital heart disease, feeding is one of the biggest challenges these kids have.  We have been very fortunate so far.  He breastfed for 6 months and we have had no feeding tubes (other than at birth for a couple of weeks).  This is not the norm.  Typically feeding becomes a very big issue and many cardiac kids have to have surgically placed G-tubes into their stomachs for feedings.  I am so thankful that we have a doctor that supports our trying our darndest to do this the natural way. 

As soon as I get any news I will post either on here or on Logan’s facebook page (usually I post on there quickly and with less detail when I have time.)

The Cleveland Clinic

Dr. Patel saw Logan on Tues. and talked with Logan’s cardiologist at Boston on Tues.  Actually Dr. Marx from Boston called at 2pm the exact same time Logan’s app. was.  What are the odd’s of that?

 

(Scott getting Logan into his car seat for our appointment)

 Anyway, the doctors at Boston concluded that they would like a cath done immediately and that they would really like to hold off surgery if possibly.  They would like to first try to balloon open the confluence before Dr. Del Nido trys to re-operate on it.  They also said that Logan needs to be in isolation

(Akron Children’s Hospital)

because if the he gets sick right now, he will really get into trouble.  He has no buffer right now. 

We have decided to have the cardiac cath done locally at the Cleveland Clinic.  We have decided that so far Dr. Patel has taken the best care of Logan and we would like to keep him as close to him as possible.  He has the huge advantage of knowing Logan really well, and has the same goal as our family  does, to get Logan in and out of the hospital as fast as possible.  Dr. Patel knows and has relationships with the pediatric cardiologists in cleveland and will be able to have more input than if he went back to Boston.  We will always go back to Boston for any open heart surgeries.  Dr. Del Nido is the best and I wouldn’t trade him FOR ANYTHING.  Another factor that is telling us to go have this procedure at the Cleveland Clinic is that his GI doctors are there and the pediatric general surgeon that we consulted with, a while back, regarding his malrotation is also at the Cleveland Clinic. I don’t want to have to argue with anyone regarding having his malrotation surgery (The Ladd’s procedure) done.  Some centers are very adamant on getting this surgery done but in what I have been witnessing over the last year, it is a very dangerous procedure, that we are not comfortable doing prophylactically.  We will have it done if or when he actually has an obstructed bowel. 

So we are meeting with Dr. Larry Latson at the Cleveland Clinic on Mon.  He is going to have a chest ex-ray, and EKG, and maybe an another echo done.  Dr. Patel did one on Tues and if all the pictures are there Dr. Latson won’t do another one.  Based on the exam that day Dr. Latson will either do the Cath on Wed. or wait until the following week.  I have a feeling he won’t want to wait. 

Here are some pictures that Scott took of Logan and I, you can get a very good idea of how cyanotic (blue) he is right now.

Hahahahhah….in this picture you can see how all the hair on the back of his head fell out.  He looks so silly. 

And then lastly, I just want to remind everyone that even though we are all so worried about Logan, he IS SO HAPPY.  HE COULDN”T BE A HAPPIER BABY.  He definitely went thru a period after surgery when he was nervous, but he’s over that now and just laughs all the time.

 

He loves Mommy’s funny faces and funny noises!!!