Month: April 2011

The Cardiologist.

We had a very short cardiologist appointment on Thursday.  He had his routine PO ( pulse ox- checks oxygen saturations) check, EKG, weight check, and clinical exam.  I think we were out of there within 2 hours which is super quick for him. 

Everything looked okay and Dr. Patel doesn’t need to see him back for (ready for it???) 3 WEEKS!!!

Dr. Patel is in favor of Logan getting the G-tube for feedings because at this point he believes the consequences of malnourishment far out weighs the risks of the surgery.  I know how hard it is to understand how tiny Logan really is by these pictures but just imagine a baby double his side next to him.  That’s what he should be.  He still fits into 0-3 months pants.  His torso is more proportionate for his age and he wears 3-6 and sometimes 6-9 months onesies.  But he has tiny little baby legs still.  Up until about 3 weeks ago they were still scrunched up like a newborn.  He is starting to stretch them out now though.  We aren’t close to sitting up or any other physical milestone but he has begun to babble a little  mamama….babababaaaaa…mama…baba!

Tomorrow we are off to meet with another GI doc (recommended by the ped) if we like him he would be much more convienant to get to.  So we will see.

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).

The Pediatrician.

So I decided to start on a search for a new pediatrician.  I really need a pediatrician that is going to be more proactive and confident in Logan’s care (as well as an office that doesn’t routinely put me on hold for over an hour….) I also decided that I would search out a private practice.  Private practices are a rare thing here in Northeast Ohio because we have 2 huge hospital systems (The Cleveland Clinic and University Hospital’s) that buy up all the practices around.  I do however think that a private practice could possible give Logan better care (Doctor’s don’t get bogged down with rules, paper work, protocol, politics ect…) So my search began….and ended very soon.  There are hardly ANY private practices anymore.  Crazy.  Anyway, I called and spoke with a bunch of pediatricians on the phone.  My search ended when I was telling a pediatrician that Logan is about as complicated of a kid as you can get.  His response ‘Thats okay I just wrote the book on that.’  Hahahaha I laughed and said ‘yeah I wish’  and he replied with ‘No, I am serious I just co-authored a book with the American Academy of Pediatrics about how to care for complex children.’…  So did I just hit the lottery or what???

Long story short Logan and I met with Dr. Lavin last Friday.

 

He walked into the room with this sheet of paper! See the title The Logan Spyker Team!!! I about fell out of my chair.  Getting good coordinated care is like the holy grail for families with complex children.  He said that he would like to set up a conference call with al lthe specialists to put a big picture plan together for Logan.  What??? Are you kidding me, was all I could think?  He had even taken the liberty of calling Dr. Patel ahead of time to get more information about Logan.  I got to tell you I was just in complete shock.  He had already ‘taken the liberty’ of calling other specialists that he knows of to find out if they knew anything about Logan’s condition. 

He spent 2 hours taking Logan’s history down (It is crazy that a 10 mo. old can have a 2 hour history to be begin with but that is a whole other post.) He was very thoughtful and knowledgeable and I feel MUCH more confident in his ability to look after Logan.  He was completely floored by everything we have been thru. When I told him about Dr. Del Nido having to reoperate bedside because Logan was crashing, he kept asking ‘wait this was just a months or so ago?’ I kept saying ‘yes’ this is what we went thru about 6 weeks ago and he just couldn’t believe it.

He didn’t do any real exam of Logan we just talked.  But he listened, he was amazed, and he seemed like he could really help us.  Thank you Dr. Lavin!

That was last Fri., yesterday (Tues.) we met with the pediatric gastroenterologist at the Cleveland Clinic.  But that is is a whole other story for a separate post.  I will post that update tomorrow.

How I got my heart baby to gain weight.

So I though I would put a post together about how I got Logan to gain a pound in 2 weeks.  I took the input from the comments that were left on a previous post and did a lot of trial and error as well. 

This is what worked for him. 

Also, I should first state that currently Logan is drinking Similac Sensitive formula.  I stopped pumping at 6 months.  After his first OHS (he didn’t come home until he was 5.5 months old) I just couldn’t keep up.  He wanted more than I could make. Pumping in the hospital is very hard.  Although, I did do it, you never make enough, you don’t eat or drink enough in the ICU (and you never want to leave to go pump either) anyway when we came back home I HAD to start supplementing with formula and then it was just a matter of 3-4 weeks before pumping was a completely fruitless effort.  When Logan started drinking formula I also begun him on some baby food.  Previously he had only had some rice or barley cereal.  When I was feeding him formula and baby food (jars and homemade)he wasn’t getting enough calories to grow or develop. If you make homemade baby

 food I HIGHLY recommend the Beaba BabyCook maker, its expensive but really worth it steams and purees all the food in one step!)   Both of my kids and I have heard many heart Moms say the say thing that their child is most likely to eat fresh food than jars of food. 

Once I was threatened with a G-tube I quickly learned some tricks that greatly increased the caloric density in Logan’s food.  I also have some other problems to deal with in regard to Logan’s feeding because he has a host of other GI anomalies that I have to contend with as well.  He has a VERY small stomach capacity and he eats tiny amounts constantly throughout the day, he has delayed gastric emptying, and is prone to constipation (these are all heterotaxy issues not necessarily cardiac baby issues).  So for me it wasn’t about feeding him more food it was about feeding very high calorie foods in small amounts.  We had tried various higher calorie formulas (22-27 calories) and he wouldn’t tolerate any of them.  I am not sure if this was due to taste/texture or if it was too hard on his digestive system but he vomited them all up.   So I began by adding a tablespoon of olive oil to every 4oz bottle of 20 calorie formula.  A tablespoon of oil has an added 120 calories.  He had no issue with this at all.  I experimented with different types of oils and I found that Flax seed oil has the least flavor and although it changes everything to a yellow color it is the least noticeable in terms of flavor.  I also added some type of oil to every feeding of baby food.  That quickly changes 15-30 calorie food into 135-150 calorie food.  Once I saw that he could handle all this oil (please remember he is prone to being constipated if he was prone to diarrhea all this oil may not have worked for him) I decided to try even richer foods.  I began to buy jars of baby food that were 70-130 calories (these were all stage 3 foods that had some meat in them).  I still added a tablespoon of oil so now he was eating meals that contain 190-250 calories. 

I should also mention that I tried Pediasure with Logan and he just wouldn’t drink it.  I know that Pediasure has 240-380 calories but my personal feeling is that it may have more calories but I do not believe it is an readily absorbed or used by the body than natural foods.  I have no proof of this other than the fact that when Logan eats formula or Pedisure (which is really just ready-made flavored formula) he poops like crazy.  I believe this is because most of it goes right thru him.  But it doesn’t even matter because he won’t drink it anyway, and I have tried multiple flavors.

Here is a list of foods that I have begun to feed Logan…

Store bought foods….

Earth’s Best Stage 3 Baby Foods – My first Soups and My first Dinner’s have the highest calorie content. 

Plum Baby (food in those new pouches)- there were only two flavors that really had a lot of calories 1. Sweet Potato, Corn, and Apple blend and 2. the Pumpkin and banana

Fage Total Greek yogurt-this has the most calories out of any yogurt.   This has 240 calories. I also add a TBS. of oil, some fruit puree, and some agave nectar. 

Homemade foods….(again with any of these I add a TBS. of some type of healthy oil)

Bananas & heavy whipping cream, or bananas with flax-seed oil.

Sweet potato with butter, cream, and cinnamon (this is Logan’s fav. meal)

potatoes, with cheese, butter,  (who wouldn’t like that?)

avocados

Baby pasta (Pastina) with butter and cheese or with butter and cinnamon, and agave nectar

Coconut Butter (not the oil but I found the butter at a health food store it is so yummy and has a lot of calories!) I mixed it into yogurt and he loved that! But he also ate it plain.

Almond butter thinned with cream and some agave a nectar

*Another tip I have is that I always a spoonful of low-calorie vegetable  (like peas or spinach) to some of these meals just to make sure he is getting a variety of nutrients*

*Also I use Smart Balance or Earth Balance instead of butter sometimes (supposedly it is made of heart healthy fats and oils)*

  

Oils I have experimented with…

Olive oil (works great is savory meals)

Flax seed oil

(Fav. oil works in everything and is super good for your heart!)

Coconut oil

Canola oil (doesn’t seem to like the taste of this one although it is the most affordable oil)

Grapeseed oil

avocado oil

and Hemp oil (this has a strong flavor and although it is exceptionally healthy I haven’t found a great use for it yet.)

 

I think this is an excellant topic and again, if anyone has any other tips please leave them in the comments and I will compile all the tips into a separate page for reference!

Better.

Just a quick little about here. Logan is better.  He is smiling again! He still has a junky cough and is more tired than usual but definitely better.  His RSV test came back negative.  He still won’t eat any food which I am really disappointed about.  I am not sure if it’s because of the respiratory illness or because of the GI/rectal prolapse/constipation issues.  I don’t even want to know how much weight he lost and how long it will take for me to put it back on him 😦 I am however, VERY thankful I got what weight I did on him because he would have been a lot sicker if he was as malnourished as he was after his last surgery.  FINALLY got an appointment with a GI doc on the 19th (Crazy how long that took) hopefully they will be able to help us with his numerous GI issues.

Now he’s sick. Big sigh…

Can’t believe it.  Now Logan is sick.  We went to the pediatrician yesterday to have him swabbed for RSV.  If he has RSV Dr. Patel thinks it is safest if he is in the hospital.  I just can’t believe it.  This poor little sweet baby just never feels good.  I am starting to wonder about PCD now. He has gotten sick so many times already in his 10 short months.  It could also be that we are at the doctor’s office so often as well.  That is truly where all the germs are.

(Taking the whole gang to the ped’s office)

When we went to the pediatrician’s office it was a little silly because they kept telling me his Pulse Ox (oxygen saturations) were 97%.  I tried explaining to them that wasn’t accurate but they told me this was the best machine and this what it is reading (sigh….) This is a picture of him in the pediatrician’s office.  Doesn’ this look the face of a baby with 97% oxygenation?  Seriously come one….

Anyway, we got the results of the RSV part of the test back yesterday and he is neg. for RSV (thank god.) The rest of the test comes back this afternoon, I am not sure if there is any other illness that would require hospitalization or not, I just know Dr. Patel was very concerned about RSV. 

Logan is just coughing and hacking and having a very hard time sleeping because of all the coughing.  He isn’t eating much either (so I may have lost all my hard work…..)

Where is SUMMER????

I finally got an appointment with his GI doctor for 2 weeks from now.  They must not be too concerned then.  I don’t know how we could go from it’s an emergency to now it’s a two-week wait….

I am starting to really realize right now that Logan doesn not have just congenital heart disease this is Heterotaxy, a whole body disease.  It’s so hard to figure out what is going on.  To figure out what illnesses or infections can be deadly to him because of his no spleen, when is vomiting okay when it isn’t (vomiting is the first sign of a deadly intestinal blockage for him) then the rectal bleeding.  It’s just so much to deal with.  And the other day it seems like everything was happening all at once.  He was vomiting, coughing, had rectal prolapse, fast breathing, everything I was so scared and very overwhelmed.  I can handle one of these issues at a time but when they all occur at the same time I get very nervous.  The most frustrating thing is that then everyone wants to send him to the most dangerous place for him to be the ER.  I really need to find doctors that are willing to fit him into their office schedules when there is a problem.  So far I have not had this luck.  Not sure what I am going to do about that. 

We had a very tough week at the Spyker household and I am hoping that everyone starts feeling better by this weekend (including myself…I caught whatever Logan has, which in a way was good because then I know exactly what he has!)

Rectal Prolapse…Ugh.

So after a few days of SEVERE constipation and some rectal prolapse, Logan began having fairly significant rectal bleeding.  I called his GI doctor and his pediatrician and they wanted me to take him to the emergency room.   I  was so angry because you can’t just take a baby like Logan to the ER.  Everytime we have ever gone to the ER it turned into a COMPLETE disaster.  There are so many things that can go wrong with Logan (heart, asplenis, intestines ect…) that everyone overreacts and panics about every little thing.  I thought that it would be in Logan’s best interest to have a doctor just take a look at him and if it really was an emergency he could then be admitted to the hospital.  But, it isn’t that easy and nobody has time so I put my foot down and said that I wasn’t taking him in.  Most likely Logan was having bleeding from the severe constipation, when he wasn’t pushing he was completely fine.  Smiley, happy, ect…It was only when he was pooping was there any problem.  There was some fear that he was having Intussusception (telescoping of the intestines) but it wasn’t very likely given that intussusception is painful even when not pooping.  So we stopped his diuretic and gave him some pedialax and there was very little blood the next time he went and then the next morning there was none.  It was very stressful though none-the-less because I had to pick the lesser of two evils.  I didn’t know what was the bigger risk for him…the ER or the rectal bleeding. 

It turned out to be the right thing to just be conservative he hasn’t had any bleeding although he is still having rectal prolapse and pain.  For some reason when he goes he keeps going until the insides come out.  I am not sure why he can even feel them but sometimes there is nothing even there.  So I will be calling the GI to make an appointment tomorrow morning. 

This is what I have always heard about with Heterotaxy.  It is so much more than just the heart condition.  Hopefully there will be an easy fix to all these problems although, I have heard that many children with heterotaxy suffer from severe constipation and are prone to Hirschsprung’s disease.  Much like malrotated kids are prone to the interssusception.  I am just really hoping this isn’t a whole big can of worms.  Logan just doesn’t need any more problems or any more surgeries to deal with right now.