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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.

Pretty Good Monday

22 May

The great news for today is that Malachi ate 50% of his food by mouth today! He was a very hungry boy and even ate his Mama’s lunch when she wasn’t looking. Ha!! It made me so happy. He ate so much that we only had to do 3 feedings via his tube. No vomiting today! Also, I let him help me push the syringe when I was giving him his meds thru the tube and he didn’t whine like usual. He loves being helpful. He did have a fever of 100.5 for about 1 hour. It was so strange. He even asked to lay down. Doc told us not to give him anything unless it was 101.5 or higher so I checked it awhile later and it was gone. He walked around a lot more today and played on the deck more. Also, the “glue” on his incision fell off today. It was just hanging there (I know…tmi) so I cut it off and he didn’t care much for that. It didn’t hurt. Just scared him. The scar looks good. He has a pediatrician checkup in the morning.

Josiah had a fever again today (100.5) and his voice is a little raspy. He actually asked to go “Night Night” for his nap today, an hour early. He woke up 3 times crying though but went back to sleep. Then, tonight he did the same thing. He was in a fairly good mood and he really has no other symptoms. I woke up with a sore throat. I’m guessing it is allergies.

I’m pretty tired but I think it was a pretty good day. I’m so happy Malachi had such a good appetite.

The tube….

21 May

The morning started out great. Both boys slept in until almost 7. It was wonderful. Neither had a fever all day. Yay! They played well. They were sharing well. Josiah would bring Malachi the toy he wanted and then say “thank you!” Instead of waiting for Malachi to say it. Adorable. Malachi played more today than the previous day. Walked around more and is no longer needing a diaper because he can make it to the bathroom walking on his own now. We are continuing to have to feed him through his feeding tube. BTW…his 4T pants no longer fit in the waist now that he’s lost so much weight. I hope he gains it back. It is pitiful.

A very sweet friend stopped by to help me today. She is a nurse and I wanted a little more confidence that we are doing it right. For some reason he throws up after his 10-11am feeding every day. We cannot figure out what is causing this. He threw up after his afternoon feeding yesterday too. Around the times of each of those he eats solid food by mouth. We are trying to figure out if that is what is causing it. Tonight he was in the mood to eat solids. He ate 1/2 a bag of popcorn, spicy peanuts that papa was sharing with him, watermelon, cherry tomatoes, cucumber, tuna and few little peach slices. When he was eating the watermelon he coughed so I had to take it away. He cried real tears so I cut it up into the TINIEST pieces and told him he had to eat 1 at a time. He did. He didn’t cough after that. He kept asking for more so we had to cut him off. We didn’t want him to get a stomach ache.

After baths tonight Malachi cried for milk. He saw me getting the “thickener” ready. He cried “Nooooo”. I told him why he can’t have it without it in it. He cried. I got a spoon out and fed him 1/2 a tsp. He didn’t cough. I proceeded to give him 20 1/2 teaspoons. No cough. Kev took over and I think he drank about 4 ounces just with the teaspoon. He was happy. Poor thing. He wants to drink so bad, but we just cannot chance him getting pneumonia from the liquid aspirating into his lungs.

Josiah felt great today. He played well, no whiny’ness and so so sweet. The only thing was that he wanted me to hold him a lot. He would say “down” and he meant “up”. Haha! I held my sweet baby because one day he won’t want mama to hold him.

Overall, we had a great day.

Rough Day

20 May

I was unable to do much today. I don’t know if this is what exhaustion feels like, but I felt like I was drugged for the first 1/2 of the day. Poor Kev. I couldn’t make myself move. I laid on the couch and I actually fell asleep a few times. Those that know me know that this is not normal. I have trouble sleeping. I normally could not fall asleep on the couch let alone when there is so much noise from the boys. When Josiah went down for his nap I did too and I slept hard. I didn’t want to get up, but I knew I needed to take care of the boys. Very strange day. I can usually push myself when I do not feel well, but I just couldn’t do it today. I hope I sleep better tonight and there are no cats crying in the middle of the night. Our cats apparently missed us and cried from 2-4am.

Malachi has not had a good day with his feeding tube. He has thrown up twice. He had some oranges earlier in the day. Then, he actually ate dinner tonight with us and then threw it up after his bath. I am so sad. We will have to call the doctor tomorrow. We are wondering if it is the antibiotic. We have also struggled a few times with the feeding tube. When he throws up we don’t know how much he lost so we are confused on whether we should try to feed him through the tube again or wait until his next feeding. I really can’t believe we are given this tube for him and they think we totally know what we are doing. It is really hard to figure out, the pump is a pain and when he does eat solids it is hard to determine how much we should be feeding him through the tube. Ugh.

Josiah is still running a low grade fever. He bit me a few times today and had his fingers in his mouth. I’m wondering if this is all 2 year molars. He has been having meltdowns too where he just cries and cries. This is not normal for him. I can’t wait until my sweet boys are back to normal. Malachi is so thin it breaks my heart.

We pretty much had a lazy day watching TV today. Malachi was more active. He played with toys and even went out on the deck for while to do bubbles. I hope tomorrow is better for both boys (well, and me too).

We Are Home!

19 May

We are home! It was a long trip home. I dropped Kevan and Malachi off at home before heading to the doctor with Josiah. His fever was 104 again at noon. I was worried. Malachi now has a 99.5 degree temp. I’m starting to wonder if our thermometer runs high. He did not have a fever the entire time we were at the hospital. Kev and I checked our temps though and it was 97 something….so I’m guessing it must be accurate.

Malachi tried to walk around the house some but it was too hard for him. He asked to swing but after about 3 minutes decided it was too much. I gave him a bath tonight (making sure not to soak his incisions) and it was hard on him. He could barely hold himself up. He has lost so much weight too. It is heart breaking. He is in good spirits though. He pretty much laid on the couch and watched TV. It makes me sad for him but I know he needs the rest. He did eat 2 chicken tenders and fries tonight but he refuses thickened liquids. He is sleeping next to me tonight. We have to do nightly feedings through his tube so we thought it was easier that way. Plus his voice is hoarse so if he calls me I might not hear him in the monitor. They think Malachi might have c diff. 😭☹️ We are waiting for the results. He is back in diapers for now. I’m not sure he could make it to the potty at this point. He’s too weak.

Josiah was scratched in the face by the cat tonight. Huge tears. Forever. Finally calmed him down but he had several more meltdowns. Poor thing.

I have no pics of being home. We are exhausted. I never thought about taking one. I am so excited to lay in my bed. Night night.

Good news and Bad news

17 May

Malachi had a good day today. He woke up and was dancing to his Paw Patrol music. Kevan brought Josiah to the hospital and I took him to the sibling play room and outside to the fish pond.

Then, when we got back to the room Malachi was on a break from the “IV pole” so we went for a ride. Took him to the play room on his floor but it was too loud and overwhelmed him very fast. He wanted to go back to bed. But, once we got back out to the hall he wanted to go outside. We took him to the fish pond. On our way back to his room he wanted rice. We didn’t want to miss an opportunity if he wanted to eat so we stopped by the Asian restaurant in the cafeteria and got him some rice. He ended up eating rice, noodles and even a few slices of orange chicken. 😃 I was so happy.

When we got back to the room a huge Chase from Paw Patrol was sitting on his bed with an NG tube sticking out of his nose. Malachi was soooo excited. He said, “MAMA!!” Then pointed to his NG tube and back to Chase’s. He was so excited Chase had one too. 😍 This hospital is wonderful!

We found out Malachi’s infection is serious. 😞 Also, they took a kidney ultrasound and we are still waiting to hear back.

I had asked the woman that did the swallow study to stop by. Malachi was able to swallow small amounts of liquid without issue. So, I asked her if I could allow him to have some liquid in a medicine cup. I thought it would be better to allow small amounts of liquid than saying no altogether. I took Josiah back to my MILs for a nap (I slept too). While we were gone Kev said they came back, thickened some Pediasure and he was able to swallow it just fine! We are so excited for him. He was so happy!!! I think God answered our prayers! He still had the tube but we also decided that the NG is a blessing. We won’t have to force him to take meds when we get home. We can just use the tube! Since he is eating solids and drinking a little we will just supplement the extra via the tube.

Also, while I was gone a very sweet friend sent Malachi some balloons, stuffed animal and some candy. He was so excited! I wish Kev got a pic but he didn’t. I will explain in a bit why I haven’t taken a pic. I called Malachi on my way back up to the hospital and he screamed balloon over and over. Lol! I think he loved them.

When Josiah woke up from his nap he seemed off. Not to mention it took me an hour to wake him up. He felt hot so I tested him and his temp was 101. After 3 attempts to give him some Motrin he got maybe a 1/2 a dose. Giving kids meds is worse than giving them to cats and cats scratch you! 😔

When I got back to the hospital I started feeling sick. Sore throat, earache, chest pain…..so Kev is coming up to switch with me. I really hope Josiah and I aren’t sick. A good day is starting to feel like a bad day. I am hoping after some good rest at Nana’s tonight I will feel a lot better. I do not want to touch any of Malachi’s things in case I’m sick so I don’t have anymore pics of the day.

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.