Praying for God’s Mercy

15 May

We would like to ask for prayer for God’s Mercy overnight tonight. Kevan and I prayed over Malachi today and we are praying throughout the night. Kev is now with Josiah. I am at the hospital with Malachi. Will you join us in prayer? We had a great morning this morning. Malachi was able to get off of the oxygen. His oxygen has been in the 80s!! He had a good night’s sleep and we thought today was going to be a great day. He has not been himself today. Even this morning he wasn’t in his normal happy mood. I wasn’t sure if he was getting depressed today or what.

He had a swallow test today because he coughs whenever he has liquids. Solids are ok, but even on thick liquids he’s been coughing a very wet cough. They thought that he may be aspirating the liquids. He hasn’t been able to have liquids since he had surgery on Tuesday. Anyway, they did the swallow test. Kevan and I were able to watch it. They tried thin liquids, thickened liquids and very thickened liquids and we could see part of the liquid go down the wrong way each time. It was very sad. They came a few hours later and did a scope down his nose to investigate further. I couldn’t handle it. I had to leave. He was wailing and crying. I have never seen him cry like that so I stepped out. Kevan was holding him. I came back in when it was done and comforted him. The scope showed that he has paralysis of his left vocal chord. It is caused by a nerve issue and happened during the surgery on Monday. They cannot tell us how long he will have this paralysis. They want to put in an NG tube. It will go in through his nose to his stomach. We will hydrate and feed him through this tube. He can still eat solids (although it will feel funny in the back of his throat) but he cannot drink at all.

Kevan and I were having a VERY hard time with this earlier. I have no problem caring for him and doing what I need to do with the NG tube. The problem I’m having is the communication barrier and trying to get him to understand why this is all happening. I can tell all of this is getting to him. Also, today I noticed that color of his urine was darker. I had brought it up to a nurse yesterday and she blew me off. Well, I was still concerned. I brought it up during the doctor’s rounds today. They took me seriously and looked into it. He has an infection. They are going to be putting him on antibiotics. I’m hoping this is what has made his mood change today and why he hasn’t been eating well.

Anyway, please pray for our sweet Malachi. Pray that God will have mercy on him and that he will not have to have this NG tube placement tomorrow. That he will be able to drink liquids. His feelings are so hurt every time he asks for a drink and we have to say no. He held on to two straws today for hours waiting for us to say yes. He cries tears. It is awful.

THANK YOU for your prayers for our family.

Malachi: OHS1 Day2

11 May

Last night they told me that Malachi may be extubated (removal of the ventilator) during the middle of the night. I told her to wake me up by calling me on my cell (I was in a sleep room not in his room). She called at about 11pm and told me he had been extubated and he fell right back to sleep. I told her to call me as soon as he woke up so he knew I was there and wasn’t scared. I woke up around 5. Never received a call so I assumed he was still asleep. I decided to take a shower since once I was with him I wouldn’t want to leave him. I got in his room around 6. He was wide awake watching TV and started to cry big tears as soon as he saw me. I was pretty upset when she told me he had been awake since 4! I loved her as his nurse but I was so disappointed that I wasn’t with him when he woke up. I was able to calm him and love on him. She told me how they had him in his restraints but had never fought with them and was very calm. That’s my sweet boy. I am so blessed to have 2 sweet boys.

They had to give him more blood (his 5th transfusion). He had a pretty bad cough and the X-ray showed a lot of fluid on his left lung. Due to that his oxygen SATs were dropping to the 60’s and his heart rate was in the 140’s. They had to switch to high flow oxygen machine. This meant he can’t get out of the PCCU (critical care unit). 😢 He is still on morphine for pain but he didn’t take a nap until about 6 tonight. I was so surprised. I’d be out! His first words to me were “PJ Masks”. His favorite show. Lol. I got him setup watching it. Next words were drink. When he’s on the higher oxygen he can’t drink due to aspiration. He can’t eat yet either. He wants to eat so bad. He kept crying little tears when we had to tell him no. I tried to google translate and explain but I’m not sure he did. They did let him brush his teeth and that made him very happy!

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en I left his levels were good and they dropped the high flow oxygen to 85%. I left to go help with Josiah. Boy have I missed my baby boy too. We had such a great afternoon together. We got to have one on one time together and twice today he just held my face to his or held my hand to his face and just loved on me. I'm so blessed with my boys.

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v is there with Malachi. They had to up his oxygen to 90% but other than that he's doing well. They couldn't get a translator in person or on video so we are pretty disappointed. Please continue to pray. I'd love to see him well enough to move to a normal room tomorrow. Thank you to all who have prayed and loved on him!!

Malachi: OHS1 Day 1

10 May

Yesterday was a very stressful day. Surgery was about 6.5 hours. Everything went according to plan. They were able to do the unifocilization, put in the shunt/stent and Malachi was doing great. He went to recovery for a bit and then up to the PICU (Pediatric Intensive Care Unit) for about 2 hours before we could see him. When you come off the elevators you are required to hit a button to get in. They can see you on camera and then they buzz you in if you are a parent. Anyway, we pushed the button and then were told that a doctor would be coming out to talk to us. I immediately thought we were about to get bad news and Kevan told me that everything was probably fine. The nurse for our doctor came out and told us that he was bleeding heavily and that we could not go in yet. He was fine in the OR while they were watching him, but once he got up to the PICU he started to bleed. It was very alarming. I cried. We prayed. We went to the waiting room and waited. They were going to give him some blood products and then get back to us in about 30 minutes. There was a chance they would have to take him back into surgery. We asked friends and family to pray. God was so gracious. About 45 minutes later they told us we could come back and see him. It was the first time since we sent him into surgery. It was very emotional to see him with all the tubes, IV drugs, etc. I know it is necessary, but it doesn’t make it less hard. My sweet boy. He was still bleeding. There was still concern. Everything is kind of a blur now. I can’t remember if his bleeding got better by the time we laid down to sleep or if it was in the morning. I’m guessing it was last night because I don’t think I would’ve went to sleep if we were still worried.

Our experience here at Vanderbilt has been amazing. They let us sleep in a “sleep room” last night. The first night they won’t let us sleep in his room. It was hard to leave him, but it was probably good for us. I woke up at around 3:30 and had a hard time sleeping after that worrying about him. Finally went to his room at about 5:45. Today has been a really long day. He was doing really well this morning with this bleeding. His blood pressure was pretty low. They would give him some fluids and it would come backup each time and then drop again. He had an issue with his oxygen overnight and had to have more blood products a couple of times today. I think he has had 4 blood transfusions since surgery. Everything is going really well right now. Oxygen is 84! Which is great for him. Blood Pressure, heart rate, etc are all good. They just divided his chest drains so they can tell which lung is draining the most. He had an Echo today to get a baseline and look at his new shunt. It all looked good.

Our sleep room:

I’m pretty exhausted. Hoping I get some good sleep tonight since Malachi will be extubated tomorrow and will need me. Looking forward to him losing the ventilator tomorrow and seeing him awake breathing on his own. Kevan left at about 3 today to go stay with our sweet Josiah. Miss my baby too.

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.

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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.