I guess roller coaster is the best way to describe this journey so far. I can't really remember what my last update to this blog included. I try to cover everything but not repeat. No promises.
Maddy was intubated for the third time on June 15th. The same thing happened as the first time. Her alveoli started swelling and bleeding. Sats went down, pulmonary artery pressure up. They spent the next three days with her on the vent making sure they ruled out all reasons this could be happening. Top on the list of reasons was a backup in blood flow in her lungs and an allergic reaction to Cell Cept. As she recovered on the vent the docs continued checking these other possibilities.
Thursday was a pretty chill day but we were all on pins and needles so no one got much rest or went very far from the hospital. Friday was pretty good too. I got some work done and by the evening we were looking forward to Maddy coming off the vent on Saturday or Sunday. But then the doctors started ordering more tests and did not want to say why. We all figured it was to rule out any other possible reasons for the earlier trouble. Late on Friday they sent Maddy for a CT scan. She was very tired after that so none of us stayed too late. Saturday morning Dr. Faber, the surgeon, came by to let me know that the CT scan came out normal but Maddy had started to have a little blood coming out her left drainage tube. He was watching it carefully and checked her platelet count to see if low clotting factors could be the cause of the bleeding. Her platelets were fine so he said he would just watch it closely. When Melissa got here I went into work.
By early afternoon I got a call from Dr. Faber Saying he was not happy with the radiologists reading of the CT scan. So he tracked him down and they went over it together. He said he was not happy with the look of the blood flow in the vein he had to do the repair on. He believed the blood flow restricted which could cause a backup and high pressures, leading to the problems we see when she comes off the vent. He wanted to go back in and check, and replace the repaired area. He said he would do that on Sunday morning after Maddy had time to digest the nourishment she had been getting through the tube in her nose. He also said they saw some small pulmonary embolisms in her right lung and they wanted to put an IVC filter in to catch any future clots before they get to the lungs. This is a ten minute procedure they do in radiology and they needed me back to sign the consents for the procedures. So I headed back to the hospital.
This all seems to be movement in the right direction. I guess I'm like a surgeon in that I like concrete answers to problems. Find what's broken and go in to fix it. I was not happy they were going to have to go back in, but I was relieved they could point to another possible complication and go in and fix it.
When I got to the hospital the radiologist who was going to do the IVC filter explained everything to me and I signed the papers. Then I went in to hang with Maddy until they took her down. While the nurse, Kelly, was moving all the equipment to Maddy's bed in preparation for transport Maddy started coughing. Kelly suctioned her tube twice and cleared the mucus. Just after she finished that Melissa noticed Maddy's right drainage tube was full of blood. We tried to calmly point it out to Kelly, because Maddy was awake and we didn't want to alarm her. Kelly immediately called Dr. Haddad and he called Dr. Faber. Within minutes there were at least three doctors checking everything and consulting. They decided to get her into the OR right then instead of waiting until sunday morning.
Dr. Haddad pulled me aside and asked if I had any questions. He explained what they believed to be the problem again. Dr. Farber got there soon after and explained it as well. It took about an hour to get the whole surgical team to the hospital on a saturday afternoon and get the OR prepped. Maddy bled out about 400 CC's in the first 15 minutes then it slowed to a minimal amount. All her numbers looked good and she was very comfortable and stable.
After about three hours is surgery Dr. Faber came out to explain everything. He found a stricture in one side of the repaired blood vessel and a clot blocking the other end of the repaired area. He removed it and replaces the repaired section all together. I posted a pic of the diagram he drew us on the tumblr blog. He also checked every other connection they had made during the transplant and he said everything looked good. He said that the problem with the pulmonary vessel can explain the bleeding from her left side. He could not point to any direct reason for the blood that came out that afternoon on the right side. He hoped this problem explains the issues she has when she is taken off the vent. If it does not solve the problem there is nothing surgically that can explain it.
It took another hour to close Maddy back up. They went in through the original incision area they used for the transplant so she is back to square one. We were able to go back and get a quick look at her at around 9:00. She was resting comfortably so we went home. I stayed away as long as I could make myself today because I want her to rest. When I called to check on her this morning Kelly, her nurse again today, told me that Maddy tried to get the night nurse to call me and wish me a happy father’s day at 4am. Such a sweet kid! She was up for a few minutes when I got here but is asleep again and that's good. Dr. Haddad wants to wean her off the vent tonight, scope her early tomorrow morning and ex-tubate her soon after.
Again transferred comments
I last saw Madelyn when she was about 4 or 5 years old. You were at your Aunt Jane's in DeLand.
Nancy Lail
(Cousin from the Miller side of your family.)
My mother-in-law who is 68 years old with COPD had a blood clot in her lung and was intubated for over 2 weeks recently. I know what you are going through. They tried quite a few times to extubate her, but kept reassuring us that the longer she was intubated, the better the healing process. She had water on her lungs as well. There was mention of either a lung transplant being needed or another surgical procedure where she would have needed to put that machine over her throat in order to speak. Priase God, she didn't need either, especially at her age. Obviously, you don't want Maddy intubated for too long, but her lungs need to heal. My mother-in-law needed speech therapy and rehab as she had trouble walking after the ordeal - very weak. Today (a couple of months later), she is doing much better.
Maddy is a strong, young woman....I pray for a full and speedy recovery.
God Bless you all!!!
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