Tag Archives | cardiology

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It’s been 70 days since we got discharged.  We came home and followed the system exactly like they told us.IMG_8419

A strict 25 minutes with me having complete control. I said “take your bite, Gabi” and she did it, though reluctantly. We followed the pattern of 2 bites and a drink… over and over and over.  Because of school, we decided to only do 3 meals a day.  It was hard. It was exhausting. My feeding arm was sore.  I had knots in my back.  But it was working.

When I say, it was working, I don’t mean she cooperated 100% of the time.  I don’t even mean she cooperated 75% of the time. But I held my ground. I maintained control and Gabi was keeping her weight up.

My other children didn’t understand. They tried to help. They wanted to help and they felt conflicted.  They grew impatient with her and with our methods.  They saw her crying and gagging and then me ignoring the behavior.  I think their hearts were with Gabi.  And I think they were right.

About a month of being home, Gabi expressed an interest in holding the spoon herself and wanted to take the bite all by herself.  Of course, I let her! Isn’t that, as parents, what we strive for? independence?  I say yes. So, I let her.  She found a way to gain some control.  Which I was ok with.

Sounds great, right?  Well, she would take the spoon, stir the food, stir it again, scoop some blended ravioli onto the spoon and then shake it off, stir it up again, scoop again and then scrape some off.  After I prompted her several times to take her bite, the spoon would be lifted as if in ultra slow motion and finally reach her mouth. The spoon would sit near her lips for a slight moment and then she would finally take the small bite she was asked to do. It took every last bit of my patience.  How can you love and sympathize with a person so much but also want to strangle them at the same time!  There is no manual for this.

I have since consulted with the outpatient psychologist and her 2 feeding therapists and they wanted me to take back all control and go back to the methods of inpatient.  They said she is not ready for independent eating. Her private OT is working on the coordination of lifting a spoon to her mouth. We are still going to 7 therapy appts a week.

After another month of tears and frustration, we are coming up with our own plan to instill independence, confidence and have Gabi enjoy eating.  We are certainly not perfect and the inpatient clinic did teach us so much. We are forever grateful. But it’s time for our own system. We are doing sticker charts, working on chewing and independent eating.  She lost about a pound and a half but the doctors are OK with this. Gabi has turned into a little bit of a drama queen and I don’t do well with that. But we are working together and I have complete confidence that Gabi will eat and get off that G-tube.

Max had to have a gown too. lol

Max had to have a gown too. lol

Cardiology Appt

Wed 4/15 Gabi had a cardiology appt at Chidlren’s Medical Center in Dallas. I have to say I LOVE OUR NEW Cardiologist!  He is just so amazing.  Gabi had an ECHO, an ECG, labs and an exam.  All looks good for the moment.  We discussed closing the fenestration in her heart but since she is doing OK, he doesn’t want to mess with anything.  We discussed her future and signs of heart failure. That is always an uplifting conversation.

My biggest struggle right now is trying to treat Gabi like a normal child.  Her IEP (ARD) meeting is coming up on May 14th and I know the school district is going to tell me that she is doing so great and yes, I agree, she is doing so great.  But I struggle with that.  Are they trying to build her up so that they can get out of helping her?

Gabi won an award for perseverance at school :)

Gabi won an award for perseverance at school :)

She cannot keep up with her peers, she is no way age appropriate in any subjects or any areas.  But sometimes I feel like all I see is her weaknesses. I don’t want to just see her medical issues.  The way I watch my other children is so very different.  I love when Marissa is jumping on the trampoline with her friends and I supervise with loving eyes. Her laughter makes my heart sing.  I watch Ethan and his friends take off on their scooters down the street. I feel joy for him and I worry, of course, but not because he can’t handle himself. As I help Thomas with his science experiements, I am in awe of his knowledge and his desire to learn more.  I look at his beautiful face and his physique and smile.  I gaze at Max and smile while he is jumping and playing with his friends and there is no greater joy when he jumps into my arms. Gabi can’t jump into my arms. Our physical affection is different.

And when I watch her, I watch that she doesn’t get knocked over by her friend or that she isn’t turning too blue, or that she can make it down the curb on her own.  I watch her from across the room when she drinks her milk waiting for signs of aspiration.  I see medical needs, I see safety concerns, I see a winded Gabi that needs a rest. I try and look at her in a loving gaze and I try to not see the scars but sometimes all I do see is the work it takes to be her parent.  I am happy to do all the work. I really am.  But sometimes, it’s just lonely.IMG_8341

I want to see her strength with no weakness… because there is so. much. strength. I want to see her courage with no drama … because there is so. much. courage. I guess without the weakness and without the dramatic struggle, there would be no triumph. And she is so happy. Her smile is all I shall need.

Today I pray for Gabi. Today I pray for marriages. Today I pray for all young people that are being bullied. Today I pray for my children.  Today I pray for my husband and all husbands and their jobs. Today I pray for teachers.

I have so much hope, so much joy.  I hope you all do to!

With much love,
Teri

Happy Easter 2015

Happy Easter 2015

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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!

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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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