Archive | September, 2018

So Thankful

29 Sep

This may be another rambling post of thoughts.  As you know from my previous post Boston changed Malachi’s surgery date again, and this led to expensive change fee for our living arrangements in Boston and my MIL’s flight (she is graciously coming to help us).  We have a lot going on in our lives right now.  In addition to the stress of Malachi’s surgery we decided recently to also upgrade Kevan’s dad’s house so we can move over to the Riley Farm.  We’ve had no debt for years, other than our mortgage.  In order to do the upgrades at the farm we had to get a loan.  That has caused additional stress, especially for me.  I do not like to spend money.  I am the saver.  Kevan is the spender.  Anyway, that is just to say I am worried about money lately for the first time in a long time.  It is probably good for me.  It is good to have to rely on God for everything, but it is hard.  After my last post someone anonymously gave us a check.  We couldn’t believe it!  It was a huge blessing to us.  I was able to do all of the rescheduling for Malachi’s surgery in Boston.  The amount ended up being a few dollars MORE than what we had to pay to make the surgery date changes.  God is faithful to provide.  I just need to tell myself that 100 times a day.  Thank you to whoever you are.  You are wonderful and your giving has blessed us so much.

Not again!

25 Sep

Boston Children’s Hospital scheduling called us again today. They moved Malachi’s surgery AGAIN! This is the 3rd time. They rescheduled for 10/19 and I am now left to try to figure out all of our plans again and pay an additional $1500 to change everything (and this is with travel insurance!!). We do not have the money right now. I am seriously about to have a meltdown. Work is stressful knowing this is coming. Home is stressful knowing this is coming. I don’t think they realize the amount of stress this is in my life. The scheduler seriously needs some people skills. She does not act compassionate at all. I need to just type this so I can get it off my chest and hopefully feel better. My son is having a very high-risk open heart surgery. They have told us that some children do not make it and wanted us to confirm that we understand the complexity of this surgery. Getting the call today, knowing that God is in control and his timing is perfect, I am now left wondering if God is giving us more time with Malachi. Is he not going to make it through this surgery? This is honestly what is going through my mind! I cannot imagine our life without him. He and Josiah are best brothers. I am bawling sitting here and I have already cried to our nanny Tiffany earlier today. My heart cannot handle the not knowing. I want to be on the other side of this surgery. I want to know what is going to happen. Is my son’s broken heart going to be fixed and will he live a long life? Please Lord hear my prayer. Please bless Malachi. Please help these doctors to quit moving our surgery date! Mama is going to have a breakdown.

Malachi: Heart Cath #2 Results

20 Sep

I just met with the doctor and Malachi’s pressures were good, his lung arteries have grown and look good. His left pulmonary artery is still narrower than they’d like but they are confident they can help this during surgery in October. His right pulmonary is great! It went from 2.7mm to about 7mm. The most amazing result is that Malachi has two holes in his heart. ASD and VSD. The hole between the 2 chambers (ASD) could not be found! He said they do not usually close up on their own at his age so he was very perplexed. I’m not! God is good and this is one less thing they will have to worry about during the BIG surgery! I’m praising God for another miracle! Thank you Lord for blessing us! One thing I wanted to do before we left for Boston was take Malachi to the Pumpkin Patch. They have jumpy house things, fun games, rides and pumpkins! But I thought that he wouldn’t be able to enjoy much because of restrictions from today’s surgery. Well, the doctor said after 3 days he should be fine to go jumping!! So, we will be making sure he gets to go next weekend. The little things. 😊

Malachi is still asleep. They are taking him off the sedation drugs and he is starting to move his feet. So, I’m going to get off this phone and make sure my full attention is on him when he wakes up. He will want lots of juice and popsicles!

Pic of catheter and dye during procedure.

Malachi: Heart Cath #2

20 Sep

I am blogging about Malachi’s procedure today because one day he may want to read about it and my mama heart will want to remember all that we’ve been through together.  My boy is strong and he makes me so proud to be his mama.

Today is Malachi’s pre-surgery heart catheterization.  We’ve been through this before so we are pretty prepared on what to expect.  We are praying that all goes well and that this will show the doctors that Malachi is ready for his “fix” in October to fix his broken heart.  I am really not looking forward to his upcoming surgery but I am very excited that soon our sweet boy will have TWO working ventricles and his oxygen will hopefully rest around 99-100%.

The morning was super crazy.  I only slept about 3 hours last night.  We are staying in Nashville at my MIL’s.  I fell asleep around 10pm, but if I get woke up at all I have a very hard time falling asleep.   Kevan got up around 1am to go to the restroom and I never fell back to sleep.  I am miserable and wish I could lay on this surgery waiting room floor and take a nap.  But, who am I kidding?  I have too hard of a time sleeping in my own bed let alone a spot on the floor here at the hospital.  Kevan can sleep anywhere.  I’m so envious.

Anyway, I got out of bed at 4:40am and got ready, drank some coffee and ate a snack.  I didn’t want Malachi to see me eating or drinking since he wouldn’t be allowed to eat.  Then, I went in to wake him up at 5:15am and Josiah was already awake and said, “Hi Mama, time to get up!”  Um… sweet boy.  You are supposed to be sleeping still.  I put him in bed with daddy and then grabbed Malachi.  Josiah was NOT HAPPY.  He wanted Mama and he wanted to stay up.  He cried and cried the whole time I was getting Malachi dressed.  I told him we had to go to the doctor and he said, “Not morning”.  It was still dark out so he thought it was not yet morning and we should be still in bed.  😊  Mama is always pointing at the sky in the morning telling them to go back to bed because the sun is not up yet and it is not morning yet.  Haha!  Then, here I am waking the poor kid up “before morning”.  Malachi did not want to leave daddy, Malachi and Nana, but when I told him there was a present in the car for him he perked right up and did a little dance.  He was ready to head to the car.  Every single day lately he has asked for the Heatwave, Boulder and Blades.  He already has Optimus Prime, Bumblebee and Chase (thanks to Aunt Cindy).  So, I bought him Heatwave for today.  I thought he would be very excited to play with him while we drove to the hospital and while he waited to go back for surgery.  I was right!  Although, when we got in the car I had no scissors.  Do you know what it is like to hand your kid a toy and not be able to get it out of the box because there are so many straps on it and teeny tiny knots.  Grrr!  I told him we would open it when we got to the hospital (someone would have scissors, right?).

As I drove, he kept asking me for help.  Then, I’d hear the box tearing into little pieces as he tried to tear the box away from the toy.  It came with two toys….Heatwave (who transforms into a fire truck) and a firetruck trailer.  Every time I stopped at a light I would work on one of the ties and try to unknot it from the box.  It was crazy.  It was about a 40 minute drive and it took until we were pulling into the parking garage to get this toy dislodged.  Malachi was not waiting until we got there to get scissors.  This kid wanted his Heatwave.  Note:  when Malachi says Heatwave it sounds like “Peatway”.

He was very happy all morning while we registered, got him weighed and measured (38.8 pounds, 4’1”).  We moved to the holding room.  He played with his new toy and showed it to every doctor and nurse that would listen.  They never understood what he was saying when he said “Peatway” but they would smile and say “firetruck”.  I wondered if they thought he was speaking Chinese.  Lol  I changed Malachi into the hospital gown, pants and hospital socks.  He did not want to give up his underwear or his Teenage Mutant Ninja socks which is very funny for a boy that would be naked all day if he could be.  Apparently, at the hospital he doesn’t want to be, but at home it is a fight to keep his clothes on sometimes.

They gave Malachi some Versed around 7:45am to make him sleepy.  By 8:15am he was pretty out of it.  He was trying to do put his leg over his head and almost falling out of the bed so they felt he was ready to go.  He started to cry (big tears) and he wanted me to go with him.  I followed him as far as they would let me go and then gave him some kisses.  Once he was out of my sight I went downstairs to get some breakfast and a, much needed, second cup of coffee (with an extra shot).  They just called me (9:08am) and informed me that he tolerated the anesthesia well, they sang him a song as he fell asleep and the doctor is just now getting started (9:08am).

I will write another update later once I know more about what they did during the cath and after recovery.  Thank you so much to all of you who pray for us.  May God bless you!  I could not walk this journey without my Heavenly Father and his amazing saints who pray for us regularly.

I’ll leave you with a funny pic. I couldn’t find my shoes this morning. I had to wear my flip flops. It is so cold in this hospital I can’t bear to be sockless. Please don’t judge.