Tag Archives | medications

It’s all Praise!

DSC_0028We have a plan!  And God is chuckling.

We got approval for “the church house!!” I want to write a deep, thought provoking post here but I am up to my neck in boxes, so I will write all the details after we move this Friday, August 2nd.

These are the wonderful things that have happened to us in the past few days.

1. We planned a trip to Great America because the kids get their free tickets from the reading program.  We planned the day only to have Ethan sr. call me 2 days before from work and tell me that he had to go into work that day.  They scheduled a meeting for that day and he had to be there. I was mad. angry. pissed. I felt like he was choosing work over his family which I know he sometimes has too. I shook it off and made a back up plan. The day we were supposed to go, Marissa woke up in pain and sick. Our backup plan was to head to the zoo with my sister and niece so before we were to leave, I raced over a urine sample to the pediatrician and we tried to go to the zoo… Marissa’s FAVORITE place!  She was too uncomfortable and we had to head home after only an hour.  (We did get to see the Dolphin Show- although she cried through half of it). We got results of a bladder infection and started an antibiotic. Our trip to Six Flags would have been ruined.  God works in very funny ways.

2. We also started my second oldest son (almost 8) on a new medication this week and it is a miracle for him. I cried tears of joy for him as he is so happy and calm and not down on himself anymore.  Ethan Sr and I had talked about starting treatment for a while now and I have been praying and felt the Holy Spirit telling me to help my son.  We did and it is truly miraculous…. I know it’s going to be a constant rollercoaster but I am just so happy for him right now.

3. We got approval on a house!!!  WE HAVE A PLACE TO LIVE!  We will be renting a home from our parish, St James.  They own a few houses and we were able to push them along to be approved.  I will post the entire story of how God worked in this story later.DSC_0062

4. I called the new feeding clinic to check on Gabi’s status.  They had “never received” her records so I made a few phone calls, got a few apologies and we have an appt set for August 8th!  I am thrilled to get her started…

5. Gabi went pee pee on the potty!!

6. I got a phone call from one of my favorite organizations called Dynamic Catholic started by Matthew Kelly. We have made donations in the past and I frequently order books from their organization. She was calling to see if we could possibly make another donation at this time.  I told her that we were really in a tough spot right now and just couldn’t. I felt terrible.  We chatted a few minutes and not surprisingly I started crying when she asked about Gabi. She personally added Gabi and our entire family to their prayer list.  I was so touched by that phone call.

7. Did I mention we are approved for a house?!

Thank you thank you for all of the prayers and support. A special thank you to my  awesome sisters, Heather and Steve, Steve and Steph, Mark and Karie, Sue, and my mom.  

I almost forgot to say thank you to the St. Brendan’s Men’s Group in FL for all their prayers for Gabi.
The kindness and support means more than you’ll ever know.

My sweet friend, Nicole, that I finally got to see after many years

My sweet friend, Nicole, that I finally got to see after many years

My handsome 2 oldest boys

My handsome 2 oldest boys

So much love and praise,
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!

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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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More meds

They are still tweeking all of her meds. Their short term goal is to get  her chest closed. She was so awake today that she became too uncomfortable and that changes her oxygen levels and all of her numbers, so they put her on a Katamine drip to help her stay more sedated.

She spit up a large amount twice today, so they pulled back on the breastmilk feeds to half the amount. She had hiccups a few times today that looked excruciatingly painful. She tried so hard to cry but being intubated, she can’t. Her grimaced face told me all I needed to know, so I got the nurse to make her more comfortable.

I love seeing her beautiful big blue eyes staring up at me but at the same time, I just want her to be comfortable, so I tell her to go back to sleep. Like the rest of my children, she didn’t listen to me at all.  I sat next to her holding her hand for hours today and she held my hand back. It is really frightening to get so attached to her because her life , and all of our lives, are in God’s hands. It is scary to love your family so much … to allow your self to be so vulnerable. But I need to feel her and love herbecause without hurting , there is no learning and no trust and that would lead to a very empty life. As I watch her numbers fluctuate and hear the alarms go off when her oxygen levels get too low, I have faith that God will show us all the way.

I am very tired and very emotional tonight. Thanks for your all of your prayers…

Love,

Teri

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