Tag Archives | GI

Groovy once again

As of today, May 29th, Gabi weighs 31 lbs.  I am so happy with this weight!  She has kind of leveled off and I think we have found our new, temporary groove.

She is taking in 2.75 cans of Pediasure 1.5 and 610 ml of water.  1270 ml total of liquid. This is 42.3 oz or 5.3 cups of liquid.

Last week, she was throwing up a lot and the dietician and I went through all probable causes.

  1. The consistency- meaning the Pediasure was too thick for her to digest
  2. The volume- the amount of liquid she was taking in at on time
  3. The rate- the speed rate set on the pump. It may have been too fast.
Daddy loving Gabi

Daddy loving Gabi

 

Lauren, the dietician, suggested I start with the rate and cut the speed in half… going from a rate of 235 ml/hour to about 140 ml/ hour. I strongly disagreed with her because she was already on the pump for over 6 hours a day… I was not going to increase that time!!  She can’t move around and play like a normal kid which makes her weaker and her PT obviously wants her moving!

I changed the volume.  It was risky.  I went from 150 ml of Pediasure mixed with 150 ml of water to just 150 ml of Pediasure mixed with only 50 ml of water. It was like a milkshake.  She took to it with no problem!!  I have even been able to bump the rate up to 245 ml an hour on the pump so she can finish her feed in about 45minutes. I do have to give her boluses of water throughout the day via a syringe, but that is fine.  the less time she is on that pump, the better! She hasn’t thrown up once since that change.  Woot woot!

Now that we have this under control and her weight has stabilized, we will continue with this for about a month- but-  I am ready for this girl to eat orally!!

I have been a stickler about her sitting at the table with us every meal and trying to eat something in the past few weeks. She doesn’t like it, but that’s tough.  I’ve been so easy on her just thanking God that she is still here with us.  Now it is time to improve her daily life.

Gabi hanging with her neighborhood friends

Gabi hanging with her neighborhood friends

I am applying to several feeding clinics and the evaluation process is going to be brutal but we’ll get there and the other kids are just going to have to suck it up and come with us to all these appointments. Maybe I can find a friend’s house for them.

I still have glimpses of feeling like a total failure but I am really trying to stop beating myself up.  You want to know what makes me feel bad about myself?  Facebook, Pinterest, mom blogs.  I read other heart mom blogs where they are much more focused on getting their kid to eat.  Their kids are potty trained and far exceeding Gabi at eating and physical abilities. I look back and think, maybe I didn’t try hard enough with her? Maybe I was too lazy?  The excuse of having other kids wears thin real fast for me. I don’t like embracing that as an excuse.

I did read a blog that I think about all the time.  Her post was entitled Drops of Awesomeness.  Basically, we, as moms, beat ourselves up about all the little things.  But when we do act completely selflessly and do something great for our kids… that is a drop of awesomeness that should not be overlooked.

There is a person in my life that is addicted to being miserable.  No matter what good things happen, she always focuses on the negative.  It is a lot easier to be miserable than it is to be happy.  Happiness is truly a choice.  And I pray everyday that God will help me see the positives and choose to be happy.

I love my Gabi

I love my Gabi

 

I also love my Marissa and Thomas

I also love my Marissa and Thomas

 

 

Thank you for any prayers you may have spared for my Gabi. She is once again doing well.  And I know she’s going to make leaps and bounds this summer.

Love, Teri

Ethan's artwork was chosen to be displayed at our local library. It is the bike sketch. so proud of him.

Ethan’s artwork was chosen to be displayed at our local library. It is the bike sketch. so proud of him.

 

 

Gratuitous picture of Marissa ready for her dance recital

Gratuitous picture of Marissa ready for her dance recital

 

Thomas

Thomas

Max and me

Max and m

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Weight Gain.. Is it the Holidays for Gabi?

It is early Saturday morning and the house is so quiet. In a few minutes I have to go to Gabi’s bed and turn off her pump before it starts beeping. This will start the day’s long routine of feedings for her.  We still haven’t found our groove and her quality of life sucks right now.  Cardiology tells me to get her up and moving to get stronger.  GI tells me to keep her still 5 times a day, an hour each time, to feed her via the pump. I feel like I am going crazier!

Last Friday, April 26th, Max had his 18 month (even though he was already 20 months) checkup at the pediatrician and I asked them to please weight Gabi.  She had been looking chubbier and bloated the days prior.  She weighed 30 lbs. 2 oz!!  Let me say, she was 26 lbs. 14 oz on April 18th, the day we started this crazy routine.  4 lbs in 8 days! What the holy heck?  too much.

Immediately I called into Gi and cardiology. Of course, I got a hold of cardiology faster and I was on the phone with the nurse for about 45 minutes. We checked her sats, her respiratory rate, her pulse, I pushed on her belly, we checked her ankles for fluid retention, we checked her shunt and her eyes but everything checked out OK.  Dr. Cava had stopped her last diuretic on April 8th, so they were super concerned of any fluid buildup, but no signs of it. I knew in my gut that it was the food.

GI’s response was to blame the scale.  They told me the scale must be off, and that there is no way she could gain that much weight in so little a time.  I was furious. I explained to them I could feel the weight when I picked her up.  I agreed to give it over the weekend to actually have a true comparison on the same scale. So, she was weighted 30. 2 on Fridy, the 26th. By that Monday, the 29th, she weighed 30 lbs 10 oz.  4 oz of weight gain a day!

Finally, the dietician agreed to take the food down a notch, only removing 2 ounces of Pediasure and the tablespoon of veg oil.  But they were still acting so surprise that she was gaining so much weight.

I agreed to give it a week on this new plan and see what she weighs the following Monday, which will be May 6th.

She has been throwing up and hates going on the pump.  It is awful. I have the pump rate set at 211 during the day and it seems that is the fasted I can push food into her for right now. This means, the pump pushes 211 ml’s of food (a little more than 7 oz) of Pediasure (diluted with water) into her stomach in an hour.  Her total amount of intake needs to be 771 ml’s of Pediasure mixed with 515 ml’s of water.  This equals about 42.8 ounces of liquid or  almost 5.5 cups. She is not tolerating this well. Neither am I.

Please continue to pray for my Gabi.

Love,

Teri.

 

 

 

 

 

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Monday’s appts

Our day began with pouring rain, continued with gray skies but we emerged with sunshine!

Literally and figuratively.

We literally drive in to Milwuakee with scary, temultuos downpuring of rain. When we arrived, my car died in the valet and we were 45 minutes late.  It took us over 2 1/2 hours to get there.  Rarely does it take more than 2 hours to get to Milwaukee. We race up to the Herma Heart Center and we missed our spot for the ECHO. It was at 9 and we didn’t get there till 9:45.  Sigh.

We wait in the waiting room and deal with the car situation. We’ll have it towed from the Valet and while we had our appts lined up, we could get it fixed. Chris and Ethan to the rescue.

A kind nurse came out into the waiting room to tell me that Carol, Dr. Cava’s nurse, was trying to rearrange our day.  She had called to GI to get that appt moved from noon to earlier so that we could do cardiology appts later.  Just reverse them.

However- when Carol called she found out- The GI dept. didn’t. have. us. scheduled. Sigh. Gray days.

Long story longer- thanks to Carol we had our long day extended longer but were able to fit everyone in.  We started with seeing her and getting the EKG. We saw Dr. Cava briefly and chatted a bit about a few concerns.

We ended up waiting for the GI doc, Dr. Martinez, for 3 hours. Yes 3 hours.  We were an “add on” because they messed up our appt and Dr. M was, of course, way behind schedule. Sigh.

I love love love CHW but I have some suggestions for them as far as coordinating all of these appts.  More about that later.

Cardiology Results

1. Heart function is good. Not great, but good.

2. Rythm is good.

3. Her heart is still way enlarged but “normal” for HLHS anatomy. The fluid that has built up around her heart over the years is finally subsiding.

4. Sats were great- around 92. Heart rate about 120. Both perfection!

5. The valve that was the cause of severe backwash before the fontan is much better.  Dr. T made repairs during the fontan procedure and the backwash is down to just mild. Dr. Cava said the valve isn’t pretty… meaning lots of suture line and scar tissues but it’s functioning. For some reason, that stung a little.

6. Her fenestration (hole placed to relieve pressure) is working properly. At some point- either in 6 months or 6 years- or never- it may need to be closed with intervention. This would just be a cath procedure.

7. He did take her off the Aldactazide. She has been on this med since after her Norwood.. almost 4 years.  He contemplated for a while but said we need to try it. This is a diuretic and it has other benefits to reshape the heart.  Risky. We are supposed to watch for increased respiratory rate. All other meds stayed the same- Enalapril, Coumadin and lansoprosal.  I was so excited to get down to 3 meds… but…

All in all Cards was all good!

IMG_3312

GI Results

I almost left during the day because I was so frustrated but I am so glad I waited. Dr. Martinez was so nice and so knowledgable.  He helped me understand her feeding problems A LOT!

1. Gabi has lost 2 lbs since Dec. 2012.  She was 29 lbs in the summer of 2012 and she is now down to 26 lbs.  3 lbs is a lot of weight for a little one to loose. All depts agreed that something needs to happen to help her gain weight.

2.Gabi is currently on a formula called Pepiasure Peptide (a low fat formula) to avoid effusions. That is explained here.  Usually the post fontan kiddos are only on a low fat diet for a few weeks after surgery but knowing Gabi’s history, Dr. Cava wasn’t taking any chances. He FINALLY gave the go ahead to put her back on regular Pediasure! I met a new nutrionist and she went through a long term goal for Gabi and step by step procedure.  I am not too happy with this new plan because we were in such a groove with her feedings and now it’s changing, but I guess the groove wasn’t exactly working- so I will do whatever she needs.  “They will be done”.

  • In about 2 weeks, the formula should be changed over. It is a gradual process.
  • We need to get her off nighttime feeds- this completely affects her metabolism, stomach lining and interferes with any potty training efforts.
  • We need to start using the pump during the day for longer,  more stable feedings compared with freehand syringes. The goal is to get her to do 5 feedings at a rate of 255 ml/hour.  This will not be easy because we need to keep her in her seat for an hour at a time hooked to the pump, 5 times a day. Yikes.  And that rate  is really fast for her.  At night, her rate is at 46 ml/hour. Right now, I give her 60 ml’s in a syringe an hour!!  I have my work cut out for me.

3. Dr. Martinez started her on a medication called cyprheptadine. Back to 4 meds :). This is actually a med for allergies, similar to Benadryl. But the side effects of the drug is what will benefit Gabi.  The side effects are crazy. The drug will help her stomach muscle fibers stretch and constrict much more efficiently.  Right now, because Gabi is mostly fed liquids, the stomach doesn’t have a chance to stretch like it does when we have a big meal. This will help trigger the brain function to tell her she is hungry!! Amazing. Because her stomach will not be stretched and constricted so harshly, she will be less gaggy and more likely to swallow her food!! It takes about 2-4 weeks for these effects to kick in, but I am so excited for her!

The lengthy, step by step process of changing Gabi's feed plan

The lengthy, step by step process of changing Gabi’s feed plan

4. Dr. Martinez did mention being referred to the feeding clinic but he wants to get her off nighttime feeds first and get her stomach working more efficiently.

Baby steps in the right direction!

We never made it to Neurology.  Next time.  Last time I was there, they looked at Gabi’s shunt for about 10 seconds and said.. call me with problems.  So, I will get it checked… next appt time.

Oh right, the car you ask??? I forgot the put the car in park… doh!

After all the waiting and waiting some more, we finally got home at about 8pm but it was nice to have daylight… even sunshine on our way home. We left the house at 7am that morning. Gabi and I were absolutely exhausted. still are. But we came home to Daddy’s birthday with lots of hope for our sweet Gabi!

Love,

Teri

 

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