OHS: Update 11am

18 Apr

they just put him on the bypass machine.

OHS: Update 10am

18 Apr

Doctor is just starting the incision now. It took until now to get all of the IVs (3) and prep. 😔

OHS: Update 8:23am

18 Apr

He was pretty emotional and cried when they took him to surgery. He was pitiful. But he was pretty funny when the med kicked in. It wasn’t enough though once he couldn’t see me anymore. They are starting surgery now. Next call will be in 1.5-2 hours.

OHS: Update 7:30am

18 Apr

We are waiting on the meds to kick in so he can go back sleepy. He said he didn’t want to be at the hospital and he wants to be with Josiah. 😢 But, he’s been playing and in a good mood. He drew a Christmas tree on the bed with presents. He said the biggest present 🎁 is for Hannah Lu (his new sister…I don’t think I’ve posted on the blog about her yet. Lol. I need to do that soon.)

OHS: Update 6:45am

18 Apr

We’ve arrived and registered for surgery. Malachi got his surprise (we always give a surprise on surgery days). He loves rescue bots so we gave him “Hoist”. He has been all smiles and excitement this morning. I’ve been awake since 2:50am. I’m so sleepy. I’m going to need some supernatural caffeine to get me through this day. Surgery should start at 8. The doctor has already been looking for us this morning and he’s pretty excited. He loves Malachi’s story.

OHS: Re-repair of the VSD

18 Apr

For those that are not on Facebook, Malachi is having open heart surgery again tomorrow. We went to a routine office visit with his cardiologist and after reviewing his echo she determined there is a leak across the ventricles that is causing his heart to enlarge. Then, a few days later they did a heart cath and were able to see that the baffle that closed the VSD in October was coming unstitched and there is a 1.3 cm hole. Pretty large hole for such a small 7 year old heart.

Tomorrow the doctor will re-open his chest, replace the conduit that connects his new pulmonary artery that they created last May to his heart. He will also repair the baffle. He said it is very unusual for this to pull away so long after surgery. It usually happens within the 1st few weeks. The good thing is that there should now be some scar tissue and the stitches should hold better.

The surgeon is very optimistic. His only concerns are his approach tomorrow (whether to go through the aorta or the conduit to do the repair) and the conduction tissue. This tissue is what controls the electrical portion of the heart. This tissue is invisible. So, he doesn’t want to inadvertently put a stitch in the conductive path. This could cause the need for a pacemaker or some other issues.

We have to be at the hospital at 6:30am and surgery begins at 8. Malachi has been in great spirits. I’m sure it is all the prayers that everyone is praying. Thank you!

We were at pre-op appointments today from 9am to 2:30pm. He was perfect the whole day. Everyone loves him. The radiologist asked if he could stay with her. She called him “Sir” and he said, “my name is not sir! It’s Malachi “. Lol!

They gave him a CHD bag with a heart on it. It had some play dough, gum, heart pillow, bubbles, etc in it and he loved it. He called it his purse. Daddy reminded him it is a bag, not a purse. 😝 He had bloodwork with no tears so they gave him a Spider-Man toy.

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:

https://m.youtube.com/watch?feature=youtu.be&v=3k7xbILciCM

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.