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.

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.