Archive | April, 2019

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!

OHS: Update 7:15pm Please pray!

19 Apr

His cardiologist just came down to see us and called us into a room. Malachi is bleeding. On the back of his heart. Blood pressure is low. Heart rate is high. He was already moved to his room so the doctor is reopening his chest in the ICU to find the bleeder. Please pray he finds it and that Malachi will stabilize. I want to see him so bad. I love my sweet boy.

OHS: Update 4:14pm

18 Apr

The doctor came out to talk to us. He was glad they opted to change out the conduit. It was thickening a lot and would’ve required intervention sooner than later. The one he used this time should last until adulthood and can be ballooned if needed via a cath. The VSD closure was successful. No arrhythmia issues. He looks so tired. He told us to go get dinner. We will probably get a call around 6pm to come see our precious boy!

OHS: Update 3:52pm

18 Apr

TEE looked good! They are closing him up. We should be able to meet with the doctor in 30 minutes and see Malachi in about 2 hours. Thank you Lord. We are so blessed.

OHS: Update 3pm

18 Apr

He’s off the heart/lung bypass as of 2:40pm! His heart is beating on its own. PTL! 🎉His body temp is back up to normal (they put him into hypothermia or something during the procedure). They’ve ordered a trans-esophageal echo (TEE) and if everything looks good they will be putting in his drains, etc. and closing him up.

OHS: Update 2pm

18 Apr

They’ve finished closing the VSD (re-closing). The doctor is replacing the pulmonary artery conduit now. They’ve had to give him some red blood cells and the post-op blood products have arrived and are ready for post op procedures. It is nearing the time he had a bleeding episode the first time. Please say a prayer with us that Malachi’s body will not have any bleeding issues. He’s still on the bypass machine.

OHS: Update 11am

18 Apr

they just put him on the bypass machine.

OHS: Update 10am

18 Apr

Doctor is just starting the incision now. It took until now to get all of the IVs (3) and prep. 😔