Malachi – Open Heart Surgery #1

8 May

May 8th, 2018. The day my oldest son is having his first open heart surgery. I hate typing the word “first”. It is scary. But, today is also the 6th anniversary of my double mastectomy. God’s timing is perfect. I know it is not just a coincidence that 6 years ago I was going through a scary, life changing surgery and today my son is also going through one. It is a huge reminder of God’s faithfulness. I reread a post my husband, Kevan, wrote while sitting in the hospital room the night of my surgery. This post is exactly what my heart needed to read today and is exactly how I feel. Our God is amazing. We definitely would not have chosen for Malachi to go through this, but God made Malachi’s heart the way he did for a reason.

Our doctor was talking about Malachi’s amazing life this morning and that he has lived long enough to be here for this surgery today. The doctor said, “He is already a miracle and I’m just tuning it up.” He also agreed that God has been with Malachi and I just loved that our doctor acknowledged God’s hand in Malachi’s life as well.

I want to encourage you to read my husband’s post from 6 years ago. The same words apply today.

Our little super hero…heart warrior….God be with him. I know you will be. Thank you for your faithfulness and love.

A Mama’s Worry

4 May

We have 4 more days until Malachi’s 1st major surgery. Tuesday is the day. I’m starting to dread it. I know it is necessary, but this mama wishes it didn’t have to happen. I don’t want my baby’s chest to be cut open. His perfect little scarless chest. I don’t want him to endure the pain and the scary-ness of it all. We’ve been having so much fun as a family. He knows so much English now. We have our routine down and his life is going to be interrupted again for a major surgery. We were never able to find a translator in time and develop that relationship. I did talk to a few heart moms and they said it is probably good that he won’t know until the day of surgery. So, he won’t worry. The surgery is going to take between 8-10 hours. That is a long time. I know they will give updates along the way, but it is a long time. Then, we must wait a little longer to find out if his body is going to handle the new shunt and pray against all complications. My little Malachi. Mommy wishes you didn’t have to go through this. I pray that all goes fantastic and we see your sweet smile beaming to all the doctors and nurses in no time. I will be ready with the jello, the popsicles and all the Paw Patrol/PJ Masks movies your heart desires.

We had a call with Boston Hospital today. I think it has added to my anxiety. This surgery is not “it”. There will be more and this isn’t even the “major” one. At some point in the next year or so (we hope) we will be traveling to Boston for 1-2 more major surgeries where his little chest will be cut open again. Lord, please be with my sweet boy. We know that he will also have to have surgery on his ear and another surgery to have 4 teeth removed. Please Lord help all of this to not diminish his sweet spirit. Help him to remain our happy boy despite all of these scary surgeries. Please bless him with successful surgeries and a long life. A life where he can glorify You wherever he goes. Please give him a heart that loves you more than anything else. You made him. You knew before he was ever born that he would need these surgeries to sustain his life and to give him a better life. A life as a son, a brother and a grandson. Not as an orphan. He is loved so much. We thank you for his life and for what you have already done for him. We ask that you provide wisdom for the doctors, for Kevan and I as we make decisions and grace that all will go well for him. You are our comforter, our salvation, our everything. Thank you for all of your many blessings, including our 2 sweet boys. I ask these things in Jesus’ Name. Amen.

An Angel at our Appointment

18 Apr

We had an angel at our appointment today. I’ll get to that in a minute. First, we got great news! I’ll get to that in s minute too. Ha! Today was our meeting with an oral surgeon about the missing bone in his mouth.

It took us 2.5 hours with traffic to get to Vanderbilt and 15 minutes to find an open parking space. Ugh. In the waiting room I google translated with Malachi hoping it would help his nervousness. The only response I got was “teeth” and him pointing at his mouth. So, he understood that much. 😝 He was more interested in the fountain he could see from the waiting room. Once we were called into the office they wanted an X-ray of Malachi’s mouth. He was immediately frightened of the machine. It was the type that you place your chin on the plastic thing and then this big machine rotates around your head while making scary noises. He cried and moved. No good. I got google translate out again to try to explain. It went better but once the machine got noisy he moved and cried. Poor thing. We gave up.

As we were walking up someone mentioned that a resident was there today that speaks Chinese. They asked me if I would like it if she came by. YES!! Please!! We met with the doctor next. By the time Malachi needed to sit in the dentist chair the Chinese resident was in our room too. She explained to Malachi all that the doctor was going to look at and he let the doctor look all in his mouth and did a great job. But, just like in China he would not respond at all to any questions. Not even a nod. She kept asking me if he really knew mandarin and I assured her that he does. The boy just does not respond for some reason. I noticed that he was squirmy and asked if he needed to use the restroom. He shook his head yes. The bathroom was attached to the room. We walk in and shut the door and the kid became a chatterbox, “light mama”, “pee pee”, “all done”, “wash your hands”, “hot?”, etc. We walked out and they said they could hear his little voice talking up a storm in the bathroom. Walk out and it is total shutdown again.

The doctor said he really needed the X-rays and if the they could try again with the translator (our angel). Of course. So, it went great. They got their X-ray first try! I told her to tell him he would get some ice cream for being so brave. She asked him if he wanted vanilla or chocolate. He nodded for chocolate! Finally a nod! But, we usually get him vanilla. Oops.

The doctor came back in and told us he does not have missing bone. What he has is 3 really decayed teeth on the right side due to poor oral hygiene at the orphanage. They are all baby teeth and will need to be removed. Bad news that he will have to have them removed but great news that he doesn’t have bone loss. He has periodontal disease. The doctor said it will improve over time and that he should be fine once he has some dental work and continues with better oral hygiene care.

The nurse asked me what doctor was doing his surgery. When I told her she said, “I am so glad. He is such a good man. I loved working for him”. I am glad she said it. Maybe God knew that we needed a little more assurance that we have the right doctor and are making the right decisions for Malachi.

After the appointment we went for some Mongolian Barbecue for lunch and for ice cream.

Surgeon Appointment

14 Apr

We went to Vanderbilt Children’s today to meet the surgeon that will be doing Malachi’s heart surgery on May 8th. We wanted to meet him in advance, get to know him a little, talk through the procedure, etc. Kevan’s cousin gave us (via Nana) a few dress up items for the boys. Among them were his favorite characters/superheroes! Catboy, Owlette and Gecko from PJ Mask. So, before we left I showed Malachi the catboy mask and cape. He didn’t take it off and wanted to wear it all day. I think it gave him a little extra courage today. He never seemed nervous at all and no vomiting! Yay!!

The meeting with the surgeon went well. Kev and I both liked him. He seemed very humble too. We found out that he thinks he can do this shunt surgery without using the bypass (heart/lung machine). This is amazing news. So, it is considered closed heart surgery, not open heart. He will still have his chest cut open which scares me and makes me feel so bad for him but because he won’t need the bypass (if all goes well during surgery) then he may get to come home from the hospital sooner. He may only need to be in the hospital 5-7 days. He wants Malachi to see a pediatric oral surgeon ASAP to make sure there is no active infection in his mouth or potential due to his bone disease.

Before we met with the surgeon we met with a bone specialist who is also an endocrinologist. She said she has never met a child with a bone disease like him where they have missing bones in their mouth. 😔 She believes it is congenital. She did some X-rays to determine whether he had rickets and he does not have it. He is very Vitamin D deficient but he doesn’t have rickets. Praise God we have some good news! She knows an oral surgeon and is referring him to see if he can help shed some light regarding his bone disease. His Vitamin D when tested didn’t even register so it is VERY low. Poor thing. He gets drops now at lunch each day (I sneak it into his juice).

After the appointments we took Malachi to Sonic for the first time and we got him an Oreo Blast. He loved it! He ate the whole thing.

After we got back to Nana’s house (she was caring for Josiah) we wanted to do something with the boys because the weather was so nice and we missed Josiah. We took them to a park. I didn’t get a single pic of them at the playground but I have a couple of them on top of the big mulch pile. Lol

Josiah’s favorite part was throwing mulch. He loves dirt. 😃 Now, I need to get off this blog and get some sleep. The boys now get each other up in the morning, around 5:30am (😭😭) and run to our room giggling to get us up. It is adorable but I really wish they would do it at 7 or 8am instead. 😴

Thank you to all those that are following this journey and praying for Malachi.

Progress

12 Apr

I forgot to add this to my post yesterday. When we first met Malachi he wanted us to do everything for him….get him dressed, bathe him, help him go potty, carry him over steps, etc. I was surprised that the orphanage didn’t teach him to dress himself but they taught him how to properly brush his teeth (brush, spit, rinse). It was good for bonding that he let us do all these things for him. We are realizing the last few weeks that he already knows how to dress himself, bathe himself and go potty himself. 🙂 He is becoming more independent and is wanting to pick out his own clothes (he says NO! if I pick socks or a shirt he doesn’t like), dressing himself, wanting the door closed to go potty on his own and he knows how to properly bathe (I still help him). I’m giving him options for his clothes now and letting him choose. Today he chose Thomas the Train.

As for going up steps (even just the 2 from our garage), I don’t think he could do this before or do this at all without help. After the cath we’ve been trying to help him do it himself. He didn’t want to at first. I think he was scared and didn’t (doesn’t have the muscle tone to feel secure). We started with having him try one step. He is doing so much better now. He goes in and out of the garage by himself now. We have a small slide in the house and he didn’t like climbing it himself. He loves it now and I’m so proud of him. At the playground he is doing so much better getting up to the slide. After about 3 times alone though he will need help. He gets tired. I am so proud of him though. I can see that he loves to be able to do things on his own once he tries and realizes he can do it.

https://jaydescancerjourney.files.wordpress.com/2018/04/img_9907.mov

We are having a beautiful day today so we took the boys on a trail (Malachi would walk, jog some (lol) and then get in the stroller when he was tiring, playground and had a picnic. Great day.

5 Weeks: Learning English

12 Apr

Malachi has been with us for about 5 Weeks. This includes our time in China and the time we’ve been home. He currently speaks about 65 words. He understands way more English than he can speak. I’ve listed the 65 words at the end of this post just to give you an idea. I’m amazed. I think he is doing so well. As many of you know, we decided to homeschool him for now and for at least a year. It is what is best for our family to bond and for us to have the flexibility to take him to the doctor, fun outings as a family, etc. Many that have adopted told me to wait a year to start schooling, but this kid absolutely loves to learn. He gets so excited when we sit down to learn colors, letters, numbers, etc or just to read. So….we’ve been doing different projects each day to try to help him learn. It isn’t traditional schooling but he is learning and it is so fun. Today, I was going through the alphabet with him and he wanted to write out the letters. We only did a few, but he did I, X and Y perfectly. For a child that only knew Chinese 5 weeks ago…I was amazed. They are probably the easiest letters to learn, but I was so proud.

I have learned that he does NOT like to get something wrong or to mess up. He will give up and not want to continue so I have to push him a little to see if he will continue. If not, I’m not pushing it just yet. One of those times was today. We were trying his “scissor cutting skills” and I was showing him how to do it. He said “I know, I know!”. Lol! I didn’t realize he even knew that phrase. So, I let him try. It did great on straight lines, but he wanted to try another one with curved lines. Once he messed up he didn’t want anything to do with it and he got quiet. I could tell it upset him. One step at a time little Malachi. You will get there. Funny thing, if he doesn’t know a word he will say “cat boy”. Cat boy is his favorite PJ Masks character. I don’t know why he chooses that word, but he loves it. He sang his first Chinese song today. Just a little bit of it, but I loved that he did it. He starting to talk more. In English and in Chinese.

This boy is such a ham. He is starting to make these grumpy faces. Then, I do it back to him with my face and then he cracks up. We had a lot of laughing today together. Unfortunately, Josiah is still moody and I am hoping it is just his molars coming in. He will be playing really well with Malachi and then all of a sudden bite him. Today he smacked Malachi really hard with a wooden spoon….I don’t even know where he got the spoon from. It hurt. Malachi cried real tears and I had to make Josiah apologize. It breaks my heart because Malachi just wants to play and Josiah keeps hurting him. I don’t know if this is a normal 2 year old being jealous or what is going on. It makes my heart sad.

I bought Malachi an “add on” purchase on Amazon. $3 lego kit. I wanted to see if he knew what legos were and if he could do them on his own. During Josiah’s nap time, first I showed him the instructions and let him try. He had a very hard time, so I helped him finish the first item. Then, the 2nd item in the kit I let him try a few times and then if he couldn’t get it I helped. By the last one he was doing it on his own with just a little help here and there. He loved it. I’ll have to try to find some used ones or some more add on ones. I’d like to have some for when he is recuperating after his open heart surgery in May.

We took the boys to the library today and it ended up being story time and they had fun art time after too. Both boys were shy with the other kids so I’m going to start going regularly so they can start warming up to other kids.

We will meet his heart surgeon on Friday along with the bone specialist to see what the cause of his missing bones is. Praying all goes well and for wisdom.

Words:

Hi

Hello

Bye bye

Potty

Lion

Elephant

gecko

Zebra

Sheepa (sheep)

Doggy

Fish

Killy cat (kitty cat)

Snake

Teddy bear (any bear)

Grandma

Nana

Papa

Mama

Daddy or Baba

Siah (Josiah)

Play it again (Alexa)

Catboy

Owlette

Where is he?

There we go

Shoes

Socks

1-10 (he can count too)

Uh oh

Shopping

Yellow

Green

Purple

All done

Brush teeth

Drink

Cereal

Hotta (hot)

Pee pee

Poo poo

Wash hands

Bubbles

Night night

Sun

Seat

Water

No

Yes

Please

Thank you

EIEIO (old MacDonald)

Butterfly

Dalmatian

Airplane

I know

I sorry

Unexpected Dental Appointment

6 Apr

I took the boys to the dentist today. Nanny Tiffany came too. The waiting room was great and the boys didn’t want to leave.

Josiah did really well considering it was his first appointment at the dentist and his teeth looked great. He’s doing a good job brushing. Also, the doctor confirmed that he’s getting his 2 year molars. Bottom ones are almost in. Top ones haven’t broke through yet. 😞 I didn’t get a good pic of them working on Josiah. But I think he did great and it explains his crabbiness lately.

Malachi needed a check up before his upcoming heart surgery to make sure he didn’t have any infections. He was doing real well at first.

But he cried a lot during the X-ray portion and then wasn’t happy at all after that. No more happy pics. Also, the doctor informed us that Malachi has some type of bone disease. She’s never seen so much missing bone in a child’s mouth. 😢 She showed me his back teeth and how much missing gums and bone he has. I am so sad for him. It looked like it hurts. She said she couldn’t confirm there is no infection so we are being referred back to Vanderbilt. 😭 He will need to be put under anesthesia while they investigate, clean his teeth and maybe do some procedures. Now he may not be able to have his surgery yet due to the chance of infection. Prayers appreciated for doctor to have wisdom on what is causing his bone loss and how to treat it. I’m praying that it is treatable and not serious.

Lastly, we bought the boys cots to stay at Nana’s house since we stay there when we go to Vandy and to have one in our room. Malachi has been waking us in the middle of the night and I don’t get any sleep if he’s in our bed. We’ve been putting him on an adult cot and he goes right back to sleep but it takes up too much room. The boys loved them. Hoping they work well. Malachi will outgrow his very soon unfortunately.

My Birthday

31 Mar

Tomorrow is my birthday. I won’t say “which” birthday. I am too many years over 40 now and I’m not happy about it. I know it beats the alternative. I am very blessed too but I sure feel old lately. For my birthday I asked Kevan if I could have a few hours to myself. I wanted to go to to eat alone. No kids screaming, no kids throwing food or wanting to go to the bathroom with me. I didn’t want to have conversation. Lol. I just wanted to be alone. I am an introvert. If I could spend a whole day reading a book all by myself I would be in heaven. I love being alone. Here is my alone birthday lunch today (they are not open tomorrow due to Easter).

Then, I wanted to go see a movie by myself. Yes, I love to go to the movies alone. I don’t know why people don’t like it. It isn’t like you can talk during the movie anyway. Unfortunately, our local cinema had no movies that I felt like I wanted to waste 2 hours on. So, I’m going to go home, to our media room and watch something on Amazon. Kevan is going to make me some popcorn. I’m still not sure what movie I’m going to waste my time on.

Speaking of Kevan. He has been so great. I’m so glad to have such a helpful husband right now during this crazy transition of going from one child to two. I have no idea how I would do it without him. I love you babe. I’m glad you are the one I’m walking through this journey with.

This morning we took the boys to their Grandpa’s farm. We brought or small and big 4 wheelers. They had a blast.

Riding with daddy…

Riding with Papa…

Riding the tractor spike like a horsey. They just did this. Lol. I didn’t tell them to.

Riding the tractor together…

Between rides this was Malachi….wanting to hold our hands…

While little brother explored…

We had a picnic lunch…

Does this 4 wheeler make me look big? 😂

Lets race daddy….

< img src=”https://jaydescancerjourney.files.wordpress.com/2018/03/img_9194.jpg&#8221; class=”size-full wp-

image-1034″ height=”4032″ width=”3024″>A few donkeys got out….

The cows didn’t really care about us…

Now, I’m leaving the restaurant to go watch a movie. Then, I might make me some cupcakes with the boys for my birthday cake. 🎂

Surgery Has Been Scheduled

29 Mar

We had a conference call with Malachi’s cardiologist this morning and we’ve scheduled surgery! If all goes well he will have his first open heart surgery on May 8th. This is contingent on whether Boston agrees with the plan or if they feel we should go a different route. If so, we will pray, evaluate and choose which one we think is best for Malachi. But, we are praying for agreement. It sounds like a great plan, we love the doctors and we would really love to stay in Nashville for the surgery instead of going to Boston. If the Lord does not like this plan then we hope he makes it clear to us.

During the surgery they will be removing the stent from the right pulmonary artery since it is already well supplied and has already grown. Then, they will put a shunt on the left pulmonary artery and join the two arteries together (for now). This will (hopefully) guarantee that the right won’t steal all of the blood flow and the left will also receive it. If I understand correctly. Kevan understands all this way more than I do. While he is under anesthesia they will be doing 2 tests to help understand his heart better for his next surgery. Yes….next surgery. It will also be open heart. They will be doing an esophageal echocardiogram and a 3 dimensional CT of his heart (this will allow them to actually hold Malachi’s heart in their hand and make sure they totally understand it). They mostly want to see just how big his VSD (hole) is. After the surgery Malachi will be in ICU for several days on a ventilator. Once he is free from initial danger they will remove the ventilator and he will move to a normal room for 5-7 days. During this time they will be monitoring his heart/lungs and incision to make sure everything is going well. Then, he will be sent home to recover with pain meds (if needed), blood pressure meds and lasix to help with any extra fluid. No rough housing, no jumping off furniture and no lifting. Then, they will perform cardiac caths to make sure the left pulmonary artery is growing like should. The first one will be about 4 months later.

Once the left pulmonary artery is ready (praying it will grow and it will grow in God’s perfect timing!), he will hopefully be a candidate for a biventricular repair. Since he has 2 chambers and only one is currently being used it would be so wonderful if they could do this surgery for him and get them both working properly. We want a heart with two pumping ventricles!

Please be in prayer that:

  1. Boston agrees with the plan unless God has another plan for Malachi. If He does, that God would give Kevan and I wisdom.
  2. That they do not find any infection or anything at his dental appointment next Friday that would put off the surgery.
  3. That God would give us opportunity at his appointments, surgeries, etc to bring Him glory and be a witness for him.
  4. That Malachi will do amazingly well during surgery with no complications.
  5. That Kevan and I will come up with a plan for Josiah during this time. We will want to be with him as much as possible during this time too.
  6. That Malachi will stay healthy and not catch any sicknesses.

Thank you to all that care about Malachi and are praying for him!

More Oxygen….Way More Fun

29 Mar

It has been 5 days since Malachi’s cath procedure. He’s been doing great. Playing non stop, running, walking all over the place and he literally never stops. In China he would walk a few steps and then he would reach up to have us carry him or put him in the stroller. He would never run. Having more oxygen is way more fun. He walked all over Vanderbilt Hospital on Monday and only one time Kevan carried him and it was mostly to cover him from the cold/wind. Yesterday I noticed that he was coughing and breathing heavy a few times during the day and he hadn’t done this the day before. Now, he did do this before the cath procedure so we were used to it before, but he was doing so well with oxygen sats in the low 80s that he wasn’t doing this anymore. I monitored his sats throughout the day when I would see him struggling and they were always in the 60s. I was getting worried so around 3pm I called the doctor. The doctor returned my call around 4pm and she was concerned that there may be a problem with the stent or that his lungs were suffering from the sudden oxygen. She wanted us to take him directly to the Vanderbilt ER…..which is a 2 hour drive. Kevan wasn’t home and he had the car with the car seats. He was on a long errand. In the meantime, his sats went up to 79 so the doctor said we could wait. If they were in the 60s again on Wednesday we would need to take him. He really seemed fine other than the coughing/hard breathing and we’ve experienced that with him before. Kevan called around 5pm and told me he still wouldn’t be home for another hour….I checked Malachi again and his sats were in the upper 60s. I was worried. Kevan started to get worried so we decided that I would pack all of our things for a hospital stay and when Kev got home we would start loading the kids and things then head to Nashville. We went along with our plan. Arrived at Vandy at about 10:30pm (due to stopped traffic on i-24 due to construction). About 1 minute from the hospital Malachi threw up. He is very smart and is now tuned into what the area near the hospital looks like and I could tell he was starting to worry as we got close. Fortunately, I am prepared for this now and was able to catch it in a bag before it made a mess. We decided that Kevan would go with Malachi to the ER while I took Josiah to my mother-in-law’s home (she lives 30 minutes from the hospital). We were both already exhausted.

Once Kevan walked in they were already ready for Malachi. His sats were in the lower 80s the WHOLE time. I felt like we brought him in for nothing. They did an X-ray and verified that the stent/lungs looked good. No issues. It was about 11:30. I was already in bed at my mother in laws and Josiah was also asleep. They were releasing Kev/Malachi soon and I didn’t have it in me to go back and get them. My very gracious mother in law went. I had actually already fallen asleep. Kev had texted her and arranged for her to come. I didn’t wake up again until about 2:15am when they laid Malachi next to me. It was determined that Malachi is playing a lot more than he used to before the cath/stent. He is loving this oxygen and he is overdoing it a bit. So, we have to start getting him to rest. Which means….I have to be okay with more TV and tablet time. Ugh. This means Josiah will have more too and we have noticed when Josiah watches TV or plays with the tablet he gets WAY more moody.

So, Wednesday we already had an appointment with an ENT for Malachi. We found out on Monday he has a perforated ear drum in his right ear. We had to get up early and drive to Murfreesboro to make the appointment. The doctor looked him over and unfortunately the perforation is 5mm….very large. So, it will require surgery. He will have to go ear infection free for 1 full year before they can do surgery. Since we do not know when his last ear infection was….we will have to wait 1 year. I do not want him having this surgery. I hate it for him. They will have to cut a small piece of skin from near his ear (from his skull) and use it during the procedure. It will be outpatient, but I am going to PRAY PRAY PRAY that this closes on its own. The doctor said that doesn’t happen with perforations this big….but my God is bigger and I am so praying with a mama heart that he won’t have to go through this surgery. Also, he has a little hearing loss in that ear but it will be better once he has the surgery.

After the ENT we met with the cardiologist. She is in the same office, knew we were there and knew that we took him to the ER the night before. After the ENT appointment they gave Malachi a blue lollipop. Obviously, this isn’t good for a heart patient who has cyanosis and is blue a lot. So, the cardiologist told the ENT doctor if he is sending another patient over to see her he is not allowed to give them blue lollipops. It was funny. We had a good laugh about it.

Malachi’s stent:

We found out that they are having another conference about Malachi tomorrow morning at 7-9am. We will know more after the conference on what Vanderbilt is proposing for next steps. We have an idea, but I’ll wait until tomorrow to write it up. We found out how much more of a miracle boy Malachi is. She told us that normally kids his age with such a large VSD (hole) have terrible lungs and they would not have lived this long due to the damage that size of a hole would cause to the lungs. But, because Malachi didn’t have working pulmonary arteries the blood was not mixing and causing lung issues. This gives us so much hope that after a few surgeries our sweet boy might have a heart with both working chambers, pulmonary arteries and lungs that are still in good shape! He currently can’t keep up with Josiah but maybe one day he will be able to. I have so many hopes and dreams for this boy and I will be praying hard that God continues to do miracles for this sweet boy. He has already done so much for him and has been with him since the beginning. Thank you Lord. We are so thankful for your amazing grace in Malachi’s life and for loving him so much.

Doctor’s appointments with a 2 year old and a 6 year old have been CRAZY. It is exhausting. I’m thankful that we won’t have another one for about a week. We will be able to enjoy being home for several days. Thank you for praying for our family. God bless you all.

This is what we do while waiting for doctors: