Surgery Day for Heart Cath and Port

It’s surgery day! Please join us in prayers over Noah & his medical teams today. We are already at the hospital. They are needing some labs prior to and want him on IV fluids prior to surgeries. They are planning to start at 11:30 but since we have cases before us it could be set back some. We also need to be sure both teams can go back to back. We got some discouraging results from Noah’s missed infusion. His BK virus numbers rose over 200,000 points. Setting us back to the beginning of August numbers. This is a very aggressive virus.???? The good news is his kidney function remains stable and they will check out his heart function today. This means infusions probably won’t be done any time soon. Please pray for smooth procedures. He still has a cough. This puts him at an increased risk of pneumonia post surgery. He is scared????and already hungry. ????????‍??I’m always nervous when they put him under. We have our usual team which is comforting. It will be a long few days.????????????????????

Update 10am:There are concerns about Noah’s cough. We are pushed back to 1pm to make sure we are clear for surgery. Mat and Madison also have nose cauterizations today. Mat’s is done & is on his way to the hospital. Madison’s is at 4pm. Please pray this stops her bloody noses or she will need a more invasive surgery. A lot is happening today!!

Update 2:30pm- Cleared for surgery. There were several issues that caused some delays. He is in surgery now. They anticipate 2.5-3 hrs for surgeries to be done.

Update 4:45pm- first surgery of full Cath & heart biopsy is done. Huge blessing is coronary arteries are looking good!! However, the pressures in his chambers are higher than they should be. His echo’s are showing some thickening in the left walls and his end-diastolic pressures are at 15 when they should be in the single digits. The right is also elevated but not that much. This could mean they add another medication now or in the future but they will need to review all the findings. We wait to get the biopsy results in a couple days, but we are anticipating no rejection. He is in the next surgery now.

Update: 5:45pm- second surgery done and port is placed and ready for use. Waiting to go to him once he is awake in recovery. He will get his Cidofovir infusion tomorrow & meet with GI.

Update 6:31 pm- Noah is having a hard time post op. He has to lie flat for 4 hours????????‍?? He is also dropping in OSATs into low 80s & 70s. Again his cough is part of the issue & Anesthesia. He still requested his Baked Cheetos. A staple request post each surgery. His classmates sent him a card with a special friend. ??

Update 10am Thursday- Noah’s breathing has been better. He definitely has a deeper cough but that was expected. However, he is now tachycardic. That means his heart rate is going faster than it should. This could be a response to his infusion, pain level, or hospital anxiety, but we will have to monitor his heart rate over the next several weeks as he can’t stay in these rhythms long term. Thankfully they will let us monitor this from home so it won’t keep us here through the weekend or longer.

Update Friday- Noah is home & is sore, but doing well. He is running low grade fevers and his heart rate is going to be monitored for a while. We will communicate with his team every morning and night with his numbers.

Thank you for everyone’s thoughts and prayers ????????
Overall we received great news with the coronary arteries. We are aiming to be in the 56% to make it to 10 years post transplant. We are in year seven and with added renal & liver issues it can effect these percentages. However, we have God on our side and he has delivered Noah on several occasions. #Alwayskeepfighting #AlmightyGod

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