Archive | April, 2019

Malachi is Doing so Well

28 Apr

Malachi is doing so well. God is amazing! Here are a few of my latest FB posts:

Friday 12pm: He looks a little disheveled but he is so happy to have the breathing tube out! Look at that sweet smile. After they took it out he went a little hysterical, for what felt like, 30 minutes. Just crying, screaming, asking for Josiah, Daddy, Papa Gerry, Grandma….we FaceTimed with them and he hysterically told them what happened. I think having that tube in for so many days, without being able to talk (the kid loves to talk)…he just needed to let it all out. Now he is happy watching a show. Unfortunately, his blood pressure has been climbing and they had to add in another med to keep it down. It is crawling back up again. It is serious because they believe his seizures are being caused by the high bp. His spinal tap came back fine. So, they are treating him for PRES syndrome and we will go home on Keppra twice per day to prevent seizures. We are scared to death of him stopping breathing so we’ve asked for some kind of meter with an alarm. They took the eeg off but didn’t wash his head yet. That is why his hair is a mess. I wanted to add something else to pray for. He bit his tongue bad during that last seizure and has a huge sore on his tongue. It looks so painful. Please pray it resolved quickly. Eating makes this kid so happy.

Friday 3pm: Happy to have his hair washed and teeth brushed! We are still waiting to see when he can eat/drink.

Friday 8pm: I’m home. (Kevan is at the hospital with Malachi.) I’m in my own very comfy bed. Josiah is sleeping and I’m about to doze off. I am laying here overwhelmed by God’s goodness. A few days ago I thought I might lose my son. Today, I’m rejoicing that he played all afternoon, sat up in a chair, ate a ton including a plate of spaghetti and our boys had the most precious FaceTime phone call together. Malachi told Josiah he missed him. Before Josiah could reply his pants fell down (he’s so wiggly). Josiah burst out laughing, Malachi laughed and laughed. He thought it was the funniest thing ever. It was such a joy to see so much happiness after such scary events. God is so good to me. We’ve been overwhelmed this week by so much love. Thank you for loving us, praying for us, visiting us, texting us, bringing us food, gifts, etc. God takes care of His people. Through all of you He has provided us with so much. My heart is full tonight. My sweet Malachi is a miracle and he will have such a testimony of God’s love.

Saturday 8am: my other cutie, Josiah helped me make pancakes this morning. So great to spend time with him today.

Saturday 5:30pm: I’m back up at the hospital. Kevan is on his way home. Malachi moved to a new room but he’s still in ICU. Hopefully, we will move on up to the 7th floor tomorrow. I ordered Panera for our dinner tonight but they canceled our order because they were out. I was so disappointed. I asked Malachi if he wanted Ramen 🍜 noodles, pizza or taco. He said “both”. 😂😂 So I got him all 3. Ramen and pizza were free so that was awesome. I had to call Miss Tiffany because I had no idea how to make the noodles in the microwave. Lol. She’s a pro! He has had a great day. The best part is that he is no longer on IV meds!! Woot woot! I can sit with him in bed now (it was too hard before with all the lines). He can walk around the room. Get up to go potty!! The nurse told me and Kev that Malachi is the talk of the ICU floor. He’s just always happy. He makes everyone smile. Even in the hard things he is so joy filled. #wecouldhavemissedthis #heartwarrior #somuchlove

Malachi – Thursday update

26 Apr

We’ve made huge progress today. Thank you to all those praying for our boy! Here are some posts I made on FB today:

Thursday 7:30pm: Look at this smile! We are watching Big Hero 6 and he keeps laughing and laughing. He used to watch this movie when he was in China at the orphanage. He’s told us before. I am so glad he can laugh through all this awfulness. I’m so glad he’s my son. 🥰 We could’ve missed being his parents if we let fear guide us instead of relying on God.

Thursday 6:30pm: Look at this sweet boy winning at candy crush!!! He amazes me! He is such a warrior. The nurses are so impressed with how sweet he is. That he’s not angry, not fighting the tube but just trying to make the best of such an awful thing.

2:30: Guess who finally fell asleep and IS STILL BREATHING!!! We are so relieved! He’s been breathing on his own (cpap) for hours and we’ve been waiting for him to fall asleep. I am soooo excited!!!

Thursday 11am: Malachi was doing really good. We played and he’s been laughing. Bad news is they will not be removing the ventilator today. Since when he would fall asleep he would stop breathing there is a concern that his poor body is so swollen inside from being re-intubated so many times (it was hard for them to do it last time) that they don’t want to remove it until they are absolutely sure it won’t happen again. They are doing some trials with it just on cpap mode to see when he falls asleep whether he still breathes. They had to put a feeding tube in. They want him to have nutrition. He, understandably, did not like it. X-ray revealed it was in the wrong place so they just had to remove it and redo it again. I sure hope it’s in the right place. He’s been through so much. They are still treating him for PRES syndrome and they believe the seizure med is working since he hasn’t had another seizure since they upped the dose. He was seeming depressed so they brought him a transformer toy and he’s doing better now. If he does well today I’m considering going home tonight. Our fundraiser for Hannah Lu’s adoption starts tomorrow and I just hate asking others to help with it when I really wanted to work hard to get everything done for it. 😢 Hopefully, the video doesn’t disturb you. We were actually very happy he was playing. He even rolled it into a ball and threw it at me. 😃

Our Daughter – Meet Hannah Lu

25 Apr

We’ve had a few blog followers ask about our upcoming adoption so I thought it would be a good time to sit here and type out the story of how we came to start the process of adopting her.

Last fall, Kevan and I started questioning whether we should adopt again. Does God have another child for us? We started to ask God what he wanted for our family. We were feeling led to adopt another child with CHD (congenital heart disease). A girl. We wanted it to be a girl that would be the oldest (we are going backwards lol). I reached out to our adoption agency and asked them for the waiting list. I asked them if they had any girls older than 8 with CHD. Our contact responded right away and told me they JUST RECEIVED a girl (THAT DAY) that met that criteria. I kind of freaked out. What are we thinking? But, I received her file and then sent it to Kevan. She was beautiful. She seemed so sweet in all of her videos. She had a minor (compared to Malachi) issue with her heart, but her heart was “fixed” in May 2018. She is 13. In China, children age out of the orphanages at 14. Then, they can no longer be adopted. We’ve had to hurry the process to make sure we get her by her 14th birthday.

As we were praying about what to do, Kevan was very open to adopting her. I was the one that was scared and unsure. I felt overwhelmed already, working part-time, homeschooling Malachi, raising Josiah too and all of the household duties. I would be adding another child to homeschool. We started adding onto Kevan’s dad’s house so we could move there so the boys could grow up on the farm. So our savings went into the house renovations. It took me some time to come around. I never wanted to go to China again. Mostly, because of the flight. Ha! My back hurt so bad sitting in the coach seats on the plane (the ones that do not make a bed) that I just never wanted to do the flight again. Plus, I hardly slept and going that long (26 hours) without sleep in such a stressful situation was SO HARD. I told myself that unless we had upgraded tickets I would never do it again. Ha! [just FYI…..We do not have upgraded tickets. 😔] Given these were my only major reservations I continued to pray for God’s guidance.

Malachi’s October surgery was coming up. We decided to make the decision before his surgery so that we didn’t make the decision out of sadness if something happened to Malachi during his surgery. We had one more weekend before we decided to make our decision. I decided to do some research. I found a Facebook group of her orphanage and asked a question about adopting older children from that orphanage. Then, long story short, I found her best friend, Lilly. Lilly was adopted in May 2018. Lilly didn’t get to say goodbye to our daughter before she left and she’s been praying every night that her best friend would find a forever family too. I was thinking…..God…..why are you doing this to my heart? I cried. How do I say no to a girl that has been praying for her best friend to also have a forever family. How do I say no even not knowing this, but this made the decision so much easier. I couldn’t get past it. I had no reason to say no. I wanted another child. I wanted a girl. I wanted a child with CHD. God had me miraculously find this girl’s best friend. It was his confirmation for us. We said YES. We decided to name her “Hannah Lu”. Hannah in the Bible has meant so much to me through all the years of infertility and begging God for a child. She had so much faith. I want our Hannah Lu to have that kind of faith. That even though she was abandoned God knew her before she was ever born, He heard our prayers for a child and He knew she would be our precious daughter.

Our pediatric cardiologist read her file and thinks that she won’t need any more surgeries. She should live a healthy life. Malachi and Josiah already know about her. We’ve been talking to them about her for a months. Josiah carries her picture around the house and says “my mister” (my sister) and then kisses her and says, “she’s so cute”. Melts my heart. Malachi doesn’t want us to go to China to get her because he will miss us, but if we bring him back snacks he’s okay. Haha! He is pretty excited too and loves to be in her room and lay on her bed.

I’m concerned going to China after all Malachi has been through this week and what he may still be going through if they don’t find out the cause of his seizures. We will hopefully be going to China at the end of June or early July. The time will come fast.

If you are still with me reading this we’ve set up a Go Fund Me to help with the remaining travel and in country (China) expenses. We are also having a fundraiser yard sale at our church this weekend. If you want to help bring Hannah Lu home the link is below. If you give, we will put your name on a puzzle that she will have on the wall in her room visually showing her all those people that love her and have helped bring her home.

Malachi Update: Day 7 post-op 7am

25 Apr

Kevan and I had to get sleep last night so we went to a sleep room since Malachi is on the ventilator and precedex (keeps him sleepy). When I came in his room at 5 he started to cry and almost jumped out of his bed. I didn’t realize he would be more awake or I might not have left him. He was very happy to see me and he’s been responding very well. He nods when we ask him questions, can tell us numbers on his fingers and gives us a thumbs up when we ask him… so his brain seems to be working well. It breaks my heart though that he’s not sedated and knows what’s happening. He tries to talk and sign but I don’t know what he’s trying to say. Regarding the spinal tap, some results have come in. It doesn’t look like it’s an infection. One result looks like autoimmune encephalitis but the MRI doesn’t correlate with that. It doesn’t sound like they will remove the ventilator today since he hasn’t had a seizure since they reintubated him. Also as we were all talking last night we think that he was showing seizure signs on Saturday but we just thought it was the Ativan. 😔 He’s just watching his tablet. I did ask child life to come by and do some play things with him. I know he’s bored.

Malachi MRI Update

24 Apr

The MRI was abnormal. There is abnormal activity (areas of injury) all throughout the brain. It is atypical for PRES. It doesn’t look like a stroke. No bleeding. No signs of pressure. They’ve consulted infectious disease. I asked them to check him for a UTI yesterday and it came back today as an antibiotic resistant E. coli. They are wondering if it got into the brain. The culture they took before surgery was clear. He did not have it when we got here last Thursday. Some of the places in the brain that control the breathing and the balance are lighting up, as well as other areas. They think that is why he stops breathing when he goes to sleep. They are going to do a spinal tap tonight. We have no answers currently. They still have no idea. My sweet and funny Josiah will be here to play with me in a few minutes so I’m going to go love on my little baby for awhile. I’ve missed him so much. Oh, also, his heart and lungs are great!!

Malachi – please pray!

24 Apr

I haven’t posted much here. It is easier to post to Facebook. We need prayers for Malachi. He was progressing well and we were going to move to a new room yesterday. The only thing that was keeping him from being upgraded was that he was having high blood pressure. Yesterday morning (Tuesday) at around 5:50am his heart rate went up to 150’s, he had an episode that caused him to desat to 40, stop breathing and his eyes rolled back. It was very scary. They called it a stroke alert. They called everybody in, got the crash cart and intubated him in front of me. They asked me if I wanted to leave, but I wanted to stay with him. I’ve seen him intubated in front of me before when he had his bleeding episode a year ago. Unfortunately, by the end of this post you will see that he is intubated another time. Anyway, yesterday….they took him to a CT of his head/neck almost immediately. They didn’t see anything and ruled out a stroke. They then thought it was a seizure. He was put on an EEG for the day. Nothing showed. They told us it must be PRES syndrome. They extubated him (removed the breathing tube). Malachi woke up, after awhile he was able to have a popsicle and he was himself again. I went to get some sleep. I slept about 30 minutes and Kevan called my phone to come back right away. Malachi had another seizure (they were now calling it a seizure)….it was a focal seizure. His muscles on his left side cramped up, he began to shake his leg and look to the left. This was not as bad and they did not reintubate him. He recovered in about 30 seconds, but Kevan was quick to push the alert button so they were able to watch the seizure. They gave him Keppra for the seizures. He was acting okay again and I knew we needed sleep so I went to lay down in a sleep room again. I slept 3 hours, but while I was sleeping……..

He fell asleep and immediately stopped breathing. His sats went down. They woke him up, they bagged him and sats came back up. He did it 6 more times. The med was making him drowsy. They did not understand what was happening and they were trying to figure out a pattern (high blood pressure, stimulation, etc) to see what might be causing it. They got him on a cpap instead of reintubating him again. I woke up at around 1:15am and came back to see how he was doing. He was doing great. Just sleeping. But he would wake up very agitated. He was trying to rip off all of his dressing and scratch off all of his scabs. Kevan decided to go lay down at 1:30am. Shortly after Kev left I asked if we could give him a popsicle to get his mind off of the itchiness. He was back to himself and acting great. Then, after he would have periods of staring, not knowing his name, not knowing how old he was. But, every time he knew his brother’s name. Not his own, but he knew Josiah’s name. Warms my heart. He called me daddy and he also did not know his colors.

Kevan woke up at 7ish. I decided to go back and lay down because we can only have a sleep room until 9am. Kev texted me they removed his pacing wires to ready him for the MRI today. I decided to take.a shower and while I was blow drying my hair his heart rate went back up to 156. I got Kevan’s text and ran out to his room. He started having a seizure as soon as I entered the room. It was a bad one. He stopped breathing for several minutes. They re-intubated him, gave him more Keppra again and ativan. They told us the seizure was a left lobe seizure and was caught on the EEG. They scheduled him for an MRI and he is currently having his MRI as I type this. We are praying for answers. Answers that have fixes. Hopefully, easy fixes.

OHS: Day 1 post op 8:45pm update

20 Apr

Good news. The doctor ordered a certain CT that requires certain people and they are not at the children’s hospital. He was going to call them in but wanted to repeat the echo first to see if there were changes. The earlier echo was around noon. They redid the echo and he’s had 20% improvement with the heart function on the left side. He’s very happy. He hasn’t canceled the CT just yet. They may do it in the morning before the vent is removed but he is pretty sure, since his echo improved that there is not an emergency right now! I believe God has answered our prayers!

OHS: Update Day 1 Post op 7pm

20 Apr

Malachi needs your prayers. Please flood heaven. We want good results. Please Lord.

We got some not-so-good news. They won’t be taking him off the ventilator today. 😭 They did an echo and the right side of his heart looks good. The left side looked great after surgery yesterday but after the bleeding issue it diminished and is depressed. They believe his heart may be having an issue or it could be because he had high blood pressure earlier today. It could be that the conduit is stretching his coronary artery or a clot. PLEASE pray it is not the latter. That the CT he is about to have reveals that everything is fine. If it is the latter a temporary injury could turn into a permanent injury. It would not be good.

Also, he is so pitiful. He wakes up and cries. He gags and tries to talk but he can’t with the ventilator in. It is breaking my heart.

OHS: Day 1 Post-op 8am

19 Apr

I wanted to give an update about what happened yesterday. Malachi came out of surgery and was doing great. They moved him to his room and then his blood pressure was dropping and his heart rate was high. They did an X-ray and they could see a lot of blood pooling around the back of the heart. They did an echo and could see the pericardial effusion more clear and thought he had a bleeder. They prepped his room so they could reopen his chest to find the bleeder and burn it. First, the doctor opened a small part of the incision at the bottom in order to suction out the fluid/blood. 100mls came out. It looked like it was no longer accumulating so they inserted another drain to monitor the flow. It slowed down so they didn’t actually have to open him back up. Praise God! It was everyone praying for my sweet boy!

He had a high fever (102.7) last night so he’s been on ice. Still has a fever off and on this morning so he’s still on ice and uncovered. I hate it. His feet and hands are so cold. Beautiful (no longer blue or clubbed since October’s surgery) but cold.

His blood pressure is still fluctuating but they think it was because he needed blood products and then when he finished getting the blood products which then made it go the other direction.

We are hoping they get the tube out this morning. He keeps trying to talk or remove the tube. He’s had tears running down his face. Breaks my heart. They are trying to keep him sedated but when they need to move him he usually wakes and acts like he’s choking on the tube. 😢

He develops bed sores on his bottom (bony tailbone troubles) very quickly so we’ve been telling them to watch him. The are is already getting discolored so they’ve taken some preventative measures.

I was able to sleep about 5-6 hours. Kevan got more I think. I am having terrible leg cramps though and it woke me up several times. Kevan has been helping me remember my thyroid pill each day. I’m guessing I’m getting high and it’s causing hyperthyroid symptoms. I usually only take it 3-4 times per week instead of 7. So, with Kevan reminding me my body is probably wondering what’s going on. Lol

We are waiting on doctors rounds to get an idea of when the tube can come out. I miss my sweet boy. Please pray with us that he won’t have swallowing issues. We don’t want a feeding tube or thickened liquids.

OHS: Update 8:15pm

19 Apr

Malachi is stable now! The surgeon just called. He said we should be able to see him soon. Thank you for praying for him. I was so scared!