More Oxygen….Way More Fun

29 Mar

It has been 5 days since Malachi’s cath procedure. He’s been doing great. Playing non stop, running, walking all over the place and he literally never stops. In China he would walk a few steps and then he would reach up to have us carry him or put him in the stroller. He would never run. Having more oxygen is way more fun. He walked all over Vanderbilt Hospital on Monday and only one time Kevan carried him and it was mostly to cover him from the cold/wind. Yesterday I noticed that he was coughing and breathing heavy a few times during the day and he hadn’t done this the day before. Now, he did do this before the cath procedure so we were used to it before, but he was doing so well with oxygen sats in the low 80s that he wasn’t doing this anymore. I monitored his sats throughout the day when I would see him struggling and they were always in the 60s. I was getting worried so around 3pm I called the doctor. The doctor returned my call around 4pm and she was concerned that there may be a problem with the stent or that his lungs were suffering from the sudden oxygen. She wanted us to take him directly to the Vanderbilt ER…..which is a 2 hour drive. Kevan wasn’t home and he had the car with the car seats. He was on a long errand. In the meantime, his sats went up to 79 so the doctor said we could wait. If they were in the 60s again on Wednesday we would need to take him. He really seemed fine other than the coughing/hard breathing and we’ve experienced that with him before. Kevan called around 5pm and told me he still wouldn’t be home for another hour….I checked Malachi again and his sats were in the upper 60s. I was worried. Kevan started to get worried so we decided that I would pack all of our things for a hospital stay and when Kev got home we would start loading the kids and things then head to Nashville. We went along with our plan. Arrived at Vandy at about 10:30pm (due to stopped traffic on i-24 due to construction). About 1 minute from the hospital Malachi threw up. He is very smart and is now tuned into what the area near the hospital looks like and I could tell he was starting to worry as we got close. Fortunately, I am prepared for this now and was able to catch it in a bag before it made a mess. We decided that Kevan would go with Malachi to the ER while I took Josiah to my mother-in-law’s home (she lives 30 minutes from the hospital). We were both already exhausted.

Once Kevan walked in they were already ready for Malachi. His sats were in the lower 80s the WHOLE time. I felt like we brought him in for nothing. They did an X-ray and verified that the stent/lungs looked good. No issues. It was about 11:30. I was already in bed at my mother in laws and Josiah was also asleep. They were releasing Kev/Malachi soon and I didn’t have it in me to go back and get them. My very gracious mother in law went. I had actually already fallen asleep. Kev had texted her and arranged for her to come. I didn’t wake up again until about 2:15am when they laid Malachi next to me. It was determined that Malachi is playing a lot more than he used to before the cath/stent. He is loving this oxygen and he is overdoing it a bit. So, we have to start getting him to rest. Which means….I have to be okay with more TV and tablet time. Ugh. This means Josiah will have more too and we have noticed when Josiah watches TV or plays with the tablet he gets WAY more moody.

So, Wednesday we already had an appointment with an ENT for Malachi. We found out on Monday he has a perforated ear drum in his right ear. We had to get up early and drive to Murfreesboro to make the appointment. The doctor looked him over and unfortunately the perforation is 5mm….very large. So, it will require surgery. He will have to go ear infection free for 1 full year before they can do surgery. Since we do not know when his last ear infection was….we will have to wait 1 year. I do not want him having this surgery. I hate it for him. They will have to cut a small piece of skin from near his ear (from his skull) and use it during the procedure. It will be outpatient, but I am going to PRAY PRAY PRAY that this closes on its own. The doctor said that doesn’t happen with perforations this big….but my God is bigger and I am so praying with a mama heart that he won’t have to go through this surgery. Also, he has a little hearing loss in that ear but it will be better once he has the surgery.

After the ENT we met with the cardiologist. She is in the same office, knew we were there and knew that we took him to the ER the night before. After the ENT appointment they gave Malachi a blue lollipop. Obviously, this isn’t good for a heart patient who has cyanosis and is blue a lot. So, the cardiologist told the ENT doctor if he is sending another patient over to see her he is not allowed to give them blue lollipops. It was funny. We had a good laugh about it.

Malachi’s stent:

We found out that they are having another conference about Malachi tomorrow morning at 7-9am. We will know more after the conference on what Vanderbilt is proposing for next steps. We have an idea, but I’ll wait until tomorrow to write it up. We found out how much more of a miracle boy Malachi is. She told us that normally kids his age with such a large VSD (hole) have terrible lungs and they would not have lived this long due to the damage that size of a hole would cause to the lungs. But, because Malachi didn’t have working pulmonary arteries the blood was not mixing and causing lung issues. This gives us so much hope that after a few surgeries our sweet boy might have a heart with both working chambers, pulmonary arteries and lungs that are still in good shape! He currently can’t keep up with Josiah but maybe one day he will be able to. I have so many hopes and dreams for this boy and I will be praying hard that God continues to do miracles for this sweet boy. He has already done so much for him and has been with him since the beginning. Thank you Lord. We are so thankful for your amazing grace in Malachi’s life and for loving him so much.

Doctor’s appointments with a 2 year old and a 6 year old have been CRAZY. It is exhausting. I’m thankful that we won’t have another one for about a week. We will be able to enjoy being home for several days. Thank you for praying for our family. God bless you all.

This is what we do while waiting for doctors:

2 Responses to “More Oxygen….Way More Fun”

  1. Cira Abreu March 29, 2018 at 2:37 am #

    Precious family!

  2. Patrice March 29, 2018 at 9:11 am #

    Continuing to pray for Malachi, you, Kevan, and Josiah. ❤️

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