Month: March 2011

Echo Results.

 

So, yesterday we went back to see Dr. Patel.  I have been very worried about his respiratory rate  (this was how our last open heart surgery journey began afterall) so I was VERY anxious for this appointment.  First I have to start with the GREAT news.  Logan gained A POUND!!! I knew he gained weight but oh man, I didn’t realize I packed a pound on him in 2 weeks.  I don’t think Dr. Patel could even believe it.  I told him when I said I didn’t want a G-tube I DEAD serious. 

All my hard work and paid off and I have decided to do a separate post later today on exactly what I fed Logan because if it helped Logan maybe it could help another baby.  So look for that if you are also struggling weight gain!   I think that I have a pretty good food formula going!

Anyway, Dr. Patel did another echo, more for my piece of mind than anything else because he was  convinced that he wouldn’t find anything.  He was correct the echo looked perfect!  His pulmonary vein confluence (which was re-repaired during his last surgery) looked completely wide open with No narrowing.  I made him check all 4 pulmonary veins to make sure there was no stenosis there either.  There wasn’t!  His AV valve still looked good, his Bi-Directional Glenn looks great.  Dr. Patel said that he is very happy with echo. 

 

So then why does Logan have labored breathing??? Dr. Patel still thinks its from weakness.  I said ‘but he gained A POUND and his breathing has gotten worse.’  His response, ‘Well, now he has more energy to move around and do things so he is out of breath more.’

I am trying so hard to just accept this as the case.  I mean, this man has not been wrong about anything so far, and his pulse ox (oxygen saturations) are still good, and his echo looks good, ekg looks good……So. Maybe Logan is just out of breath because he is weak.  Dr. Patel thinks that if I can put another pound or so on him he will be a different baby in 2-3 weeks from now.  If I am going to be really honest, I will believe it when I see it.  I am not going to feel completely comfortable until Logan has a normal respiratory rate.  But for right now, I feel as though a couple of the 100 thousand bricks are off my shoulders.   So my goal right now is to put another pound of weight on Logan in the next couple weeks. 

(Logan eating Veggie sticks while waiting for Dr. Patel, he is a chow hound now!)

Also, this was GREAT news…..

Dr. Patel doesn’t need to see Logan back for 3 WEEKS!!! I think in Logan’s life he has only gone that long 1 time before.

Milestones.

So another BIG milestone for Logan he enjoyed a bath for the first time in his entire life.  As a newborn he hated them and with his blue spells I couldn’t give him one because I was constantly trying to calm him down not get him worked up.  And again after his Glenn his SVC pressures were so high that when he cried his head swelled up so I just gave him sponge baths then as well.   So he has been only real baths (like in a bathtub) just in the last few months but with everything that he has been thru new things make him very nervous.  And after any surgery he is VERY nervous about being touched certain ways (like he hates his feet messed with because this is where they are always put IVs) and sensitive to new and different noises.  So it has taken a while for him to warm up to taking baths.  And last Fri. he took a bath and after about 5 mn. he began to not scream.  He wasn’t completely comfortable with it but he was completely devastated either. 

When he is in the bath he won’t fully relax and insists on staying in the fetal position AND has to have a wub-a-nub (the little animal pacifier thingy) but he isn’t screaming! This is progress!

The other big milestone that we reached is probably tiny to most and ridiculously late for a typical baby is that he rolled over onto his side and stayed there. He has only rolled over to reach something and then he falls right back on to his back.  But for the first time that I have ever witnessed he rolled over to snug a blanket, stayed there, and went to sleep!!!

Last week we also had some fluke weather that got just shy of 70 and so Ethan, Logan, and I went for  a little trek at the park.

 

I will let everyone know how our appointment goes tomorrow. 

Weight gain and Feeding Issues.

Well goods news first right?

Logan is now officially outgrown 0-3 months clothes, yay!!!

I got to go thru his clothes and remove all the 0-3 months clothes and pull out a whole new batch of 3-6 months clothes.

 

What I also was looking at when I was going thru all his clothes is how tiny he was as a newborn.  He weighed 6.3 at birth but after two weeks in the NICU he was 5.2 when we took him home.  This is what he was wearing…

That little outfit is in comparision to the pants that fit him now and those pants are tiny (3-6 months) He wore premie clothes for the first few months of his life.  So even though he is still off the charts small (literally, he is well below 0%) he has grown despite all of his setbacks.

The good news is that feeding is going great.  He is eating really well.  Probably not as much as a typical 10 month old but he has made HUGE improvements for him.  He is eating three albiet small, meals a day, he has to snacks (finger foods), and 3-4 bottles.  I have been adding 1/2 – 1 TBLS. of flax seed oil to everything he eats.  After trial and error I have found flax seed oil to be the most tasteless but also healthy oil.  I have tried olive oil, hemp oil, canola oil, and grapeseed oil but the flax seed oil seems to be the least noticable to him.  One TBLS. of that adds a whopping 120 calories to everything he eats (its also a heart healthy oil!).

(This concoction here is Greek Yogurt, flax-seed oil, and Agave nectar-which is just a healthier sugar)

Now on to the bad news…starting all of this food has given rise to a whole new set of problems.  Constipation, rectal bleeding, rectal prolapse, and extreme discomfort 😦

At this point I am not sure if this is a heterotaxy thing (heterotaxy kids are prone to constipation and a slew of other GI issues) or just a major switch in diet that is going to take some getting used to.  The rectal prolapse (which was mild) was not something I ever want to see again (just google it you’ll see what I mean.) and I think it has now made him scared to go. 

So I am now having to increase his fluid intake.  I hate doing this because everytime I give him some juice it is a missed opportunity to give him calories!  I am very nervous about this because Dr. Patel has brought up the G-tube (a surgically implanted feeding tube) multiple times now and I believe a decision will be made based on his next exam which is on Tues.

 

This is a picture of a G-Tube.  I don’t want to have to feed Logan like this.  I would much prefer to feed him naturally.  So we will see.

The other bad news is that the huge amount of increase in calories has done nothing to improve his respirtatory rate.  He is breathing 77-82 breaths per min (normal would be about 1/2 of that or less) he sounds like he is out of breath all the time.  He still can’t hold his head up, but I don’t understand how he ever will when he gets out of breath from just laying on his back playing with a toy.

I have more to tell but I am going to finish posting tomorrow because Logan is crying….

Echo Results.

So the results are in and Logan’s echo looks fantastic.  The Sutureless repair on the TAPVR still looks wide open and has great blood flow.  All four pulmonary veins appear to have great blood flow.  His Bi-directional Glenn looks good, his valve is actually stenotic (too tight) now and is causing some dialation because the heart is having to work hard to get blood flow up into the atrium now.  This is the opposite of the problem he had before, which is when the valve was pulled apart.  I am not sure if this is problematic or if they made it super tight in anticipation of it loosening up. 

 

Dr. Patel still thinks that the cause of Logan’s rapid breathing is from lack of calories.  He thinks that he has no reserves and that when he exerts himself he is immediately out of breath.  I don’t know what to think anymore.  I hope this is the case, it would be an easy fix that is for sure.  Since last Thurs.  I have stuffed Logan silly with food.  I have added a 1/2 TBLS of Olive Oil to his bottles (this adds an extra 75 calories) and also to any food that I gave. He also got constant buiscuts to chew on, rice ones, barley ones, wheat ones, you name the biscuit and Logan ate it over the weekend.  This weekend of gorging actually paid off and Logan gained 6oz in 4 days. This is amazing for him.  He is now weighing in at 5.8 K or 12.7 lbs. Yay!!!! Logan. If anyone has any good baby weight gain tips please leave a comment with them.  I could use all the tips I can get.

So I guess only time is going to tell us the exact cause of his labored breathing.  Dr. Patel is going to see him back in 2 weeks. 

Oh and also….Logan is saying Momma now!!! Not sure if he associates it with me but when he is upset he says amomma…mom….mmmmooom.  It is the most precious thing EVER.  Heheheheh…we are now 0 for 2 on Dadda being our children’s first word.

Appointment.

Well that was one of the most unsatisfying Dr. appt’s ever.  Dr. Patel first inclination was that Logan could be having some fluid in his lungs.  He thought since we stopped the lasix while he had his stomach bug that maybe puffed back up after the stomach bug was gone.  We went down and had a chest x-ray and his lungs crystal clear.  Normally this would be a good thing but not in this case because that would have been an easy fix.  His other inclination was that Logan isn’t getting enough calories and that he is getting worn out, breathing fast, and sweating from lack of calories.  He said that he wants calories pushed on Logan right away.  I don’t believe that calories are his main problem (I admit it is A Problem but not this problem.) Nothing has changed in his diet in the last couple of weeks.  But his breathing is getting more rapid in the last three days.  I don’t see this correlation.  We are going back to see Dr. Patel on Tues. afternoon for an echo. My biggest fear is that there is a problem with his pulmonary veins.  I also worry that if there is a problem with them they won’t immediately show up on the echo.  Last time he had rapid breathing his pulmonary confluence obstruction didn’t show up on the echo until 4-5 weeks after his rapid breathing even started. 

As far as his lower Pulse Ox Dr. Patel said he is Okay with that number, that his color looks relatively good, and that low 70-75 may just be where he settle out after this last operation.  Ugh.  Once again, I am not liking you one bit Mr. Pulse Ox.

So basically we won’t know anything until his echo next Tues. and even then the echo may look okay.  We may have no answers for the time being (which I cannot stand by the way – the no answers – drives me batty.)

Pictures.

Welcome back oral aversions, not very happy to see you again.  These teething biscuits are the only thing Logan will eat right now because he doesn’t want anyone putting anything in or near his mouth.  (Thanks nurses that didn’t listen to me about how to give him his meds.)

 

New Moose which he loooooves!

 

 

 

Yay!!! This is officially the most he has ever drank at one time 4oz.  This is the happiest site.

Very Nervous.

So for the last few days Logan has been breathing hard…again.  When he is sleeping or resting his breathing is fine and normal but when he playing with a toy or moving around at all he is out of breath.  I haven’t used his Pulse Ox machine very much because he did so good after surgery that there really was no need to, but now with this breathing issue I have decided to check it.  I have been checking every day for the past three days (I want to make sure one day isn’t a fluke) and I have been checking on his hand and foot.  It turns out his PO is already A LOT lower.  On his foot it is about 72 and on his hand he is 74.  This is a far cry from the 85 and 80 he was one-two weeks ago.  I have no idea what is going on and I am officially terrified.  This coupled with the heavy breathing is very scary and I am just hoping there isn’t a serious problem.  I called Dr. Patel and he wants to see him tomorrow (Thurs.) instead of next week.  I also see that more collaterals have grown on his chest in the last week.  I admit that maybe they were there and now I just noticing them because I am nervous but who knows.  I remember last week Dr. P and I saying wow, look at his chest all the collaterals are gone.  He said on the phone he remembers one that had remained and that that is what I am just noticing.  So at this point it is a lot of speculation as to what could be the problem, collaterals, obstruction, pleural effusion, who knows.  But I am very upset because it would just be nice to go a month with no issues.  Scott thinks that this just may be where is settling out after his surgery.  This is possible but also not great.  Whatever his PO is right now is only going to get lower and lower as the months go by because of collateral growth.  I also feel horrible that he is so out of breath all the time.  It breaks my heart.  I am really hoping that there is a simple solution to this problem tomorrow….ie maybe he just needs to go back on his silenafil.  Ugh…..