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Malachi – 1 Year Home

10 Mar

I haven’t updated my blog in awhile because I update Facebook regularly. I’ve recently had 2 blog readers, that are not on my FB, ask me how Malachi is doing. On Tuesday we celebrated his 1st Family Day. We met and adopted Malachi one year ago. It is amazing to look back, just one year ago, and see how much he has grown, learned and bonded. He is so precious to us. I put together a video and wanted to share. Here is the link:

Today’s OHS

19 Oct

6:30pm Update: Malachi is having some bleeding. They are starting him on some blood products. They don’t seem too concerned since this happened last time and bleeding products helped. We won’t be able to see him until 7:30pm. They will keep him sedated and paralyzed overnight.

5:00pm update: God is SO good to us. Malachi’s oxygen is 100%!!!! I cried. Everything went as planned he has not had any bleeding. As of right now he doesn’t believe he will need a pacemaker. The next 24 hours are critical. Keep the prayers coming. We get to see him in 1.5 hours.

4:30 update: He is OFF the bypass as of 15 minutes ago!!!! Woot woot!!!! We will see the doctor in 30-45 minutes!

2:35pm update: still the same. Still working on him. Still on bypass. Still being cooled. 😔. Almost 4 hours on bypass.

12:50pm update: he is still on the bypass. Dr Emani is working hard. He is still being “cooled” to keep his temp down. Once they start “warming” him he will come off the bypass soon but he’s not there yet. 😢 1.75 hours on bypass so far.

11:16am update: he is doing well. He just went on the bypass. 😔 scary for mama. 😢

10:15am EST update: his blood work came back with low factor XII and XIII. 😔 Please please please pray against bleeding episodes!

9:30am EST update: just began with the incision.

7:46am EST update: they just took him back.

6:45am EST: We are at the hospital and all checked in. I will post updates on this same post throughout the day instead of having multiple posts. Malachi is in a great mood. Smiling and dancing through the hospital. 🙂

Open Heart Surgery – Biventricular Repair

19 Oct

Kevan wrote up a post to describe Malachi’s surgery tomorrow. He understands the technical portions more than I do so I asked him to write it for those interested.

For those that may not read this whole post but want to pray. Please pray specifically for:

  • No bleeding episodes
  • Limited time on the bypass…just the right amount for what he needs
  • Healthy kidneys
  • No high fevers (sometimes after this procedure children spike very high fevers and he won’t be able to progress and get out of the icu until his temp is down)
  • His mood. He is always happy….that God would continue to give him special grace for being so happy
  • Full healing of his heart
  • No pacemaker (although it would be ok I would just hate it for him bc he would have to have maintenance in the future)

Post from Kev describing the surgery:

As we prepare for Malachi’s big surgery tomorrow, we want you guys to know what is being done.  Many of you know he had a previous “open heart” surgery in May of this year.  That was technically an “open-chest” surgery as there was no heart involvement.  Before he could have his heart repaired, he needed good blood flow to his lungs.  That is what was done in May.

The procedure tomorrow is a true “open-heart” surgery.  Currently, his lungs are fed from his aorta, because he has no pulmonary artery connection to his heart (single outlet).  If the surgery tomorrow goes as planned, he will have a dual outlet heart (aka a Biventricular repair, or Bi-vent).  He will have two outlets from his heart like normal.  One, the aorta, to send blood out to the body, and a separate pulmonary artery after to feed the lungs.

If that is all you want to know, you can stop reading now.  But, for those like me, that like all the details, here is more.

First some quick background information.  Malachi was born with a series of congenital heart defects.  He was born with a hole in the membrane between the upper heart chambers (the atrium) known by the acronym ASD (atrial septal defect).  He also has a rather large hole between the lower chambers of the heart, the ventricles, known as a VSD (ventricular septal defect).  Additionally, he had no pulmonary artery (pulmonary atresia).  His aorta is primarily fed from his right ventricle (TGA/DORV).  The aorta is the main artery that supplies blood to the body.  In his case it also feeds blood to the lungs.  This blood flow to the lungs was via collateral arteries, since there was no pulmonary artery.  These smaller collateral arteries severely limited the amount of blood flow to his lungs.

In March, Malachi had a procedure (cardiac cath) to place a stent in the largest of the arteries feeding  the right lung.  This widened this artery and made a huge initial difference in Malachi’s ability to get oxygen into his blood.  Later, in May he underwent an open-chest procedure called a unifocalization.  In this procedure, they took the best of the collateral arteries feeding the left bunch and brought them together to become a pulmonary artery.  However, since there is no pulmonary artery connection to the heart for Malachi, this new artery was joined to the aorta (the artery that feeds blood to the body).  This is called a shunt.  This bumped up his ability to oxygenate his blood even more.  But, there are limits to this.  His current normal blood oxygen saturation is only 80%, and 82% or so would be the best he could get from this arrangement.  As he grows, with no additional intervention, this would become less and less effective.

What he needs is a pulmonary artery connection to his heart.  A normal heart has two sides.  One pumps blood out to the body, the other out to the lungs.  The procedure tomorrow is to do the following:

  • Using the existing Aorta and the VSD the left side of the heart will be dedicated to pumping to the body.
  • The shunt will be removed and replaced with a new “conduit” to join the previously created pulmonary artery to the right ventricle.

In this arrangement, his heart will function similar to a normal heart with one side pumping out to the body and one side pumping to his lungs.  He should be able to achieve and maintain 100% oxygen blood saturation like a normal health person.

This will be a true “open heart” surgery.  They will hook him up to a system referred to as a “By-pass” that will act as his lungs and heart, and they, will for a time, stop his heart.  They will make at least two incisions in the heart.  One to fix the VSD and aorta connection (which are linked in his case).  The other incision is to join the the pulmonary artery to the heart via the conduit.  As a result of a surgery like this he will spend between 5 and 10 days in the cardiac ICU.  More if there are complications.  He will then require another 2 to 3 weeks in a regular room as he continues to heal.  We appreciate any and all prayers offered for Malachi, the doctors, the medical staff, Jayde, myself, Josiah, and Judy (aka Nana).

It has been an amazing road so far, since we began our process with adopting Malachi.  God has shown Himself faithful again and again, and we know He will do so many more times.  He is truly great, and though He often calls us to difficult paths, He walk with us through the struggles and gives us the necessary strength and encouragement.  He knits our hearts together to show us a glimpse of His great heart for us.  Though in many ways I do not look forward to the road ahead, I have great peace knowing He is with me.  And I know, looking back, I will see the amazing ways He showed us His grace and love.  It is my prayer that others will see Him working through us, and by that, gain strength and comfort and know that He loves them more than they will ever fully grasp this side of the grave.  Soli Deo Gloria

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.

Surgery Plans

29 Jul

I wanted to give an update to my last post. Malachi’s surgery will be on October 8th. I have been so stressed about the planning for our time in Boston for Malachi’s surgery. The thought of how much it will cost us has caused me the most stress. I started to pray for wisdom. I don’t know why I always worry first and then pray second. What is wrong with me? Are you ready for some amazing news? Seriously, I cried.

Continue reading

Open Heart Surgery #2

7 Jun

Kevan took Malachi to his follow-up appointment yesterday. Great news is that he is doing great. Scar looks great, oxygen SATs looked great, etc. He is healing really well. I am so thankful to God that the surgery went so well. When I look back to just 3 months ago and all that God has done for him I am amazed. This little boy couldn’t even play with a beach ball in our hotel room in China without his SATs dropping to 35% and he would start coughing and have to sit down until his SATs came back up. It scared me half to death. We had to carry him most of the time in China because he could only walk VERY SHORT distances. He was constantly asking us to carry him because it was so hard on his little heart. Now, he is RUNNING, he never stops to cough and sit. He never asks us to carry him. He walked the entire visit to the aquarium the other day. It is just so amazing. Last night he was playing with a beach ball that he received at VBS and I didn’t have to worry at all that his SATs would drop. Sweet boy even slept with the ball last night. Ha!

The other news, I don’t want to say it is bad news….just sudden. We thought we had at least 6-12 months before his next surgery, but his doctor wants him to have it before flu season begins. This means August/September timeframe. Please be in prayer for us. There is so much involved. We will be going to Boston Children’s Hospital for the surgery. The surgery he will be having is a Complex Biventricular Repair. We will be there for at least a MONTH. I am so stressed over this. We will bring Josiah with us and I guess we will have to tag team between the hospital and Josiah care. We may be asking our parents to help again. We will need an apartment or house. Ronald McDonald house and most of the other places like that will not let us bring Josiah. A hotel room for a whole month gives no area for Josiah to play. The cost of renting an apartment for a month is VERY high. So high I called Just to make sure it wasn’t an error. Close to $10,000! Please pray for wisdom for us as we decide what is best for our family during this time.

Also, the surgery is contingent on the following:

  • Weight Gain – he must gain weight
  • Feeding Tube removal
  • Oxygen SATs
  • Boston’s surgery schedule
  • A place to stay

Funny Stories to Remember

23 May

We had a good day today. Tube feeds went well. No vomiting. He ate pretty good, but not as good as yesterday. Malachi saw his pediatrician today for a routine visit. A friend came up and helped with Josiah. It was so great as I have a pretty bad cold and I did not have much energy to try to listen to the doctor and take care of both boys. Everything went well at the doctor. Incisions look great. Heart/lungs sound good. She could detect a murmur but it is his stent. We knew this from his hospital stay. He was very brave at the appointment. I’m so proud of him.

We had a lot of funny things happen today. Just what life is like as parents. Kevan was taking apart a webcam that he has on his 3D printer (he likes to watch it from a different room. Lol). It had all kinds of parts to it. Anyway, he was working on it at the kitchen table while eating his dinner. The boys had finished eating and wanted down. Then, they climbed onto my lap to eat mine. I was not feeling well at all so I told Kevan I was going to go take a bath and put a hot towel on my face. Apparently, the boys hopped up on Kevs lap to help with the webcam. Lol. I couldn’t hear anything while the water was running, but as soon as it stopped I could hear Josiah crying. Loudly. Kevan said he had been crying since I went into the tub. We figured he wanted me so I got out of the tub. On my way back into the kitchen I must have stepped on a little piece of glass. It was stuck in my foot and very painful (we broke something in our room way back at Christmas and it appears that it was still on our floor despite the many times we’ve vacuumed). Anyway, I was screaming to Kev to get the glass out of my foot, Josiah was still crying (we never over and over figured out why) and Malachi was whining for an orange. It was CRAZY. I was laughing on the inside at the chaos at that time wondering how people have more than 2. Lol. What do you do with a 2 year old that is bawling his eyes out at the same time you have glass in your foot? It was pretty funny. Kevan was able to get the glass out….I screamed in pain which made Josiah cry even louder. Having kids is pretty crazy sometimes.

Tonight I was reading a Paw Patrol book to Josiah before bed. One page described Rocky, one of the characters. He has a toolbox on his back. Josiah got up, ran to the playroom, grabbed his toy toolbox and wanted to sleep with it. He is just like his daddy. He loves his drill and screwdriver. He uses it to pretend he is daddy and he’s putting batteries in toys. So cute. Another funny Josiah story…I threw away some stickers today. I just got tired of seeing them around the house. Josiah was throwing something away, saw them and dug down in the trash to get them out. He is so like his dad this way too. I will throw away something of Kevan’s that I know he does not need and he will somehow figure out it is in the trash. I don’t know how he does it. Trash radar I guess.

Another funny story. So, I was watering the plants on the front porch. Josiah was sleeping and Malachi was sitting on the bench on the porch watching. I found out later while looking through my pictures that he got a hold of my phone and was taking pictures. I have about 10 pics of his feet and several of me bending over in my short (home only shorts) watering the plants. It sure made me laugh. No one will be seeing those pictures. Kev enjoyed them. Haha!

Well, I’m going to go to bed. In honor of my grandma I put Vick’s on my nose, chest and feet. Hoping I feel better tomorrow. I have so much I need to do and I go back to work in one week.