Not again!

25 Sep

Boston Children’s Hospital scheduling called us again today. They moved Malachi’s surgery AGAIN! This is the 3rd time. They rescheduled for 10/19 and I am now left to try to figure out all of our plans again and pay an additional $1500 to change everything (and this is with travel insurance!!). We do not have the money right now. I am seriously about to have a meltdown. Work is stressful knowing this is coming. Home is stressful knowing this is coming. I don’t think they realize the amount of stress this is in my life. The scheduler seriously needs some people skills. She does not act compassionate at all. I need to just type this so I can get it off my chest and hopefully feel better. My son is having a very high-risk open heart surgery. They have told us that some children do not make it and wanted us to confirm that we understand the complexity of this surgery. Getting the call today, knowing that God is in control and his timing is perfect, I am now left wondering if God is giving us more time with Malachi. Is he not going to make it through this surgery? This is honestly what is going through my mind! I cannot imagine our life without him. He and Josiah are best brothers. I am bawling sitting here and I have already cried to our nanny Tiffany earlier today. My heart cannot handle the not knowing. I want to be on the other side of this surgery. I want to know what is going to happen. Is my son’s broken heart going to be fixed and will he live a long life? Please Lord hear my prayer. Please bless Malachi. Please help these doctors to quit moving our surgery date! Mama is going to have a breakdown.

Malachi: Heart Cath #2 Results

20 Sep

I just met with the doctor and Malachi’s pressures were good, his lung arteries have grown and look good. His left pulmonary artery is still narrower than they’d like but they are confident they can help this during surgery in October. His right pulmonary is great! It went from 2.7mm to about 7mm. The most amazing result is that Malachi has two holes in his heart. ASD and VSD. The hole between the 2 chambers (ASD) could not be found! He said they do not usually close up on their own at his age so he was very perplexed. I’m not! God is good and this is one less thing they will have to worry about during the BIG surgery! I’m praising God for another miracle! Thank you Lord for blessing us! One thing I wanted to do before we left for Boston was take Malachi to the Pumpkin Patch. They have jumpy house things, fun games, rides and pumpkins! But I thought that he wouldn’t be able to enjoy much because of restrictions from today’s surgery. Well, the doctor said after 3 days he should be fine to go jumping!! So, we will be making sure he gets to go next weekend. The little things. 😊

Malachi is still asleep. They are taking him off the sedation drugs and he is starting to move his feet. So, I’m going to get off this phone and make sure my full attention is on him when he wakes up. He will want lots of juice and popsicles!

Pic of catheter and dye during procedure.

Malachi: Heart Cath #2

20 Sep

I am blogging about Malachi’s procedure today because one day he may want to read about it and my mama heart will want to remember all that we’ve been through together.  My boy is strong and he makes me so proud to be his mama.

Today is Malachi’s pre-surgery heart catheterization.  We’ve been through this before so we are pretty prepared on what to expect.  We are praying that all goes well and that this will show the doctors that Malachi is ready for his “fix” in October to fix his broken heart.  I am really not looking forward to his upcoming surgery but I am very excited that soon our sweet boy will have TWO working ventricles and his oxygen will hopefully rest around 99-100%.

The morning was super crazy.  I only slept about 3 hours last night.  We are staying in Nashville at my MIL’s.  I fell asleep around 10pm, but if I get woke up at all I have a very hard time falling asleep.   Kevan got up around 1am to go to the restroom and I never fell back to sleep.  I am miserable and wish I could lay on this surgery waiting room floor and take a nap.  But, who am I kidding?  I have too hard of a time sleeping in my own bed let alone a spot on the floor here at the hospital.  Kevan can sleep anywhere.  I’m so envious.

Anyway, I got out of bed at 4:40am and got ready, drank some coffee and ate a snack.  I didn’t want Malachi to see me eating or drinking since he wouldn’t be allowed to eat.  Then, I went in to wake him up at 5:15am and Josiah was already awake and said, “Hi Mama, time to get up!”  Um… sweet boy.  You are supposed to be sleeping still.  I put him in bed with daddy and then grabbed Malachi.  Josiah was NOT HAPPY.  He wanted Mama and he wanted to stay up.  He cried and cried the whole time I was getting Malachi dressed.  I told him we had to go to the doctor and he said, “Not morning”.  It was still dark out so he thought it was not yet morning and we should be still in bed.  😊  Mama is always pointing at the sky in the morning telling them to go back to bed because the sun is not up yet and it is not morning yet.  Haha!  Then, here I am waking the poor kid up “before morning”.  Malachi did not want to leave daddy, Malachi and Nana, but when I told him there was a present in the car for him he perked right up and did a little dance.  He was ready to head to the car.  Every single day lately he has asked for the Heatwave, Boulder and Blades.  He already has Optimus Prime, Bumblebee and Chase (thanks to Aunt Cindy).  So, I bought him Heatwave for today.  I thought he would be very excited to play with him while we drove to the hospital and while he waited to go back for surgery.  I was right!  Although, when we got in the car I had no scissors.  Do you know what it is like to hand your kid a toy and not be able to get it out of the box because there are so many straps on it and teeny tiny knots.  Grrr!  I told him we would open it when we got to the hospital (someone would have scissors, right?).

As I drove, he kept asking me for help.  Then, I’d hear the box tearing into little pieces as he tried to tear the box away from the toy.  It came with two toys….Heatwave (who transforms into a fire truck) and a firetruck trailer.  Every time I stopped at a light I would work on one of the ties and try to unknot it from the box.  It was crazy.  It was about a 40 minute drive and it took until we were pulling into the parking garage to get this toy dislodged.  Malachi was not waiting until we got there to get scissors.  This kid wanted his Heatwave.  Note:  when Malachi says Heatwave it sounds like “Peatway”.

He was very happy all morning while we registered, got him weighed and measured (38.8 pounds, 4’1”).  We moved to the holding room.  He played with his new toy and showed it to every doctor and nurse that would listen.  They never understood what he was saying when he said “Peatway” but they would smile and say “firetruck”.  I wondered if they thought he was speaking Chinese.  Lol  I changed Malachi into the hospital gown, pants and hospital socks.  He did not want to give up his underwear or his Teenage Mutant Ninja socks which is very funny for a boy that would be naked all day if he could be.  Apparently, at the hospital he doesn’t want to be, but at home it is a fight to keep his clothes on sometimes.

They gave Malachi some Versed around 7:45am to make him sleepy.  By 8:15am he was pretty out of it.  He was trying to do put his leg over his head and almost falling out of the bed so they felt he was ready to go.  He started to cry (big tears) and he wanted me to go with him.  I followed him as far as they would let me go and then gave him some kisses.  Once he was out of my sight I went downstairs to get some breakfast and a, much needed, second cup of coffee (with an extra shot).  They just called me (9:08am) and informed me that he tolerated the anesthesia well, they sang him a song as he fell asleep and the doctor is just now getting started (9:08am).

I will write another update later once I know more about what they did during the cath and after recovery.  Thank you so much to all of you who pray for us.  May God bless you!  I could not walk this journey without my Heavenly Father and his amazing saints who pray for us regularly.

I’ll leave you with a funny pic. I couldn’t find my shoes this morning. I had to wear my flip flops. It is so cold in this hospital I can’t bear to be sockless. Please don’t judge.

Surgery Plans

29 Jul

I wanted to give an update to my last post. Malachi’s surgery will be on October 8th. I have been so stressed about the planning for our time in Boston for Malachi’s surgery. The thought of how much it will cost us has caused me the most stress. I started to pray for wisdom. I don’t know why I always worry first and then pray second. What is wrong with me? Are you ready for some amazing news? Seriously, I cried.

Continue reading

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.