I figured I would try to give a short synopsis of what's been going on with Aaron for the past few weeks and more detail about what's going on right now.
As most of you know, Aaron just spent six weeks in the hospital. We were home for about 2 weeks before he was re-admitted on Monday. His last hospital stay, he came in, was treated for infection, but despite several broad spectrum antibiotics, he continued having fevers of 102.5 and shortness of breath daily. They did another bronch, and weren't able to figure out what was going on through that. Because they had no idea what was causing his problems, they decided to do an open lung biopsy to get a larger piece of lung tissue and more cultures. They also wanted to try to remove some of the fibrous tissue on his left side in order to allow his left lung (mainly the lower lobe) to expand, and to get some airflow through it. We were hoping that we would get a definite answer for what was going on when the results came in, but the results came back inconclusive. A few days after the open lung biopsy, Aaron's breathing and respiratory status ended up declining to the point of needing to be put on a ventilator. They weren't very optimistic, but after some steroids and IVIG (both treatments for rejection), he started showing some improvement, and was able to get off the ventilator in two days. They believe that he started by having an infection and ended up rejecting both of his lungs (Normally someone who has had a double lung transplant has two lungs from the same donor, and would normally reject both, but where Aaron had a living donor transplant- 2 different donors, and since they only replaced one side when he had the re-transplant, he has two different lungs (one is really only a lobe) from two different donors, so he can reject one and not the other or reject them differently and with different severity), and with the steroids, IVIG and antibiotics, they were able to finally get him off the oxygen and then home. He was very weak and had a lot of recovering to do, but he was doing better. He had started going to pulmonary rehab to work on getting his strength back and to try and recover some lung function. He was able to do three sessions so far (they go from Monday-Friday for 3 hours a day for a total of 23 sessions).
Now to what brought him in this time. He had been doing fairly well for 6 weeks in the hospital. On Thursday, he had some shortness of breath, his lungs sounded wet (like there was fluid in his lungs), and had a low grade fever. He took some Tylenol and lasix (a diuretic) and that seemed to help. He had an ok day on Friday, and then on Saturday, he started getting short of breath and sounded wet again. He didn't have a fever, but he took lasix again (he really has been having a hard time with his kidneys and with fluid going straight to his lungs, so he takes lasix as needed). This time the lasix didn't seem to help much, and the same on Sunday. We decided that we would call his coordinator first thing Monday morning and see what they said. Monday he wasn't doing any better and ended up with another low grade fever. We decided to skip the lasix since it wasn't really making a difference, and we didn't want to dry him out too much. His coordinator had him come in for a bronch to see if they could dilate his airways and figure out what was going on. He was on no oxygen at home and his sats were ok, but by the time we got to the bronch suite his sats dropped into the low 80s (they should ideally be above 93%). They put him on 6 liters of oxygen and went ahead with the bronch, but said they would most likely admit him. After the bronch, he wasn't any better so they admitted him to the normal pulmonary floor where he always is when he is admitted. He was doing ok when we got up there, but over a period of the next 45 minutes he starting with rigors/shaking/chills, went from no fever to 102.5 (taken under his arm, so his fever was higher than that), and went into some respiratory distress. They did a blood gas on him to see why he couldn't breathe and why his sats were so low even with being on a lot of oxygen. His carbon dioxide levels were high, his pH was high and his pO2 (which measures how well the oxygen you are breathing in is attaching to your red blood cells), and that was very low for the amount of oxygen he was on (100% via a non-rebreather face mask). His blood pressure was also quite low. They decided that he was way to sick to be on a regular floor and that he needed to be transferred up to the MICU (Medical ICU). They gave him a small amount of fluid, but that seemed to go to his lungs and so they gave him more lasix. The tylenol started wearing off and he spiked a fever of about 103 (also under his arm), and his breathing was getting more labored. He was very sick. I went out and sat in the waiting room, planning to spend the night there because he was so sick. Around 3:30AM, his nurse came out to get me, and said he needed to talk to me. They were talking about putting him on bi-pap because of his breathing and sats, but as we were talking about it, they said that they were most likely going to have to intubate him, but we could try the bi-pip first, but would still most likely need to intubate, though it was up to him what he wanted to do. After talking about it, Aaron decided to skip the bi-pap and just have them intubate him. He was working so hard to breathe, was just so tired and just couldn't keep breathing that way, and if they were going to have to do it anyway, they might as well just do it. They also had to start him on some medications to raise his blood pressure. Due to the infection they think he has (he is septic, a systemic infection), his blood pressure was bottoming out (60s-40s/40s or so) and they needed to do something to bring it up, and with is fluid sensitivity with fluid going to his lungs, they couldn't just pump him full of fluid. He has a port-a-cath, but they needed more access than that, so they put in a triple lumen IJ (Internal Jugular Center Line), and an arterial line. Once they intubated his blood pressure dropped even more due to sedation and being so sick, and they put him on the maximum dosages of the maximum number of pressers (medications to raise his blood pressure)- 3 different meds, and he was still low. With the IJ line, they are able to check his fluid status and blood volume, and it ideally should be between 10-12, and he was 2, extremely low and dehydrated, so he received well over 8 liters of fluid to try to correct that, and thankfully it is now in the normal range. His kidneys weren't producing much, and still aren't. They are talking about now trying to get some of that fluid off of him because he may have gotten too much. Tuesday morning was very touch and go. Between his blood pressure, fluid status, and needing to be on maximum vent settings/support and still not satting where he needed to be. They said that he is much, much sicker than even last time when he was on the vent and not doing well. Unfortunately the cultures they got from the bronch and the blood and urine didn't grow anything. They know that he has an infection, but they can't seem to pinpoint what it is. His severe immune suppressed/compromised status makes it tough for them to grow much.
He has definitely made quite a few gains over the past couple of days. By Tuesday late morning, he was down to 2 blood pressure medications, and then last night they stopped another. He may have to go back on the second, if they decide to give him the diuretics, because that will drop his blood pressure. He is still on the other blood pressure med, but that is ok for now. He is no longer on the maximum vent settings, but he is still on a lot of support. They are trying to lighten the sedation so that he is aware and awake, and they want physical therapy coming in and working with him. They expect that he will be on the vent through at least the weekend, and are hoping he could come off by Monday, but if not they may do a tracheotomy in his neck and would ventilate through that so he could get up and waking. They are hoping he will be more responsive by the end of the day (he tries to open his eyes, raises his eyebrows, can turn his head towards sound and squeezes your hands sometimes. He is still very sleepy and doesn't always respond but he is definitely more responsive now). He is making progress and going in the right direction.
I finally went home last night. I had been staying in the hospital since Monday afternoon, and spent two nights in the waiting room, but he was stable enough last night for me to feel comfortable going home, getting a shower and some sleep. Looking forward to him being more awake and able to communicate some. With how his kidneys are doing, it could take a while for the sedation to clear out of his body. He is definitely a fighter! I'll try to keep updating as we go along. It's been a long few days and our focus has really been on him. Anyone has any questions, feel free to ask! Hope all of this makes sense. Things are improving, slowly and baby steps, but we are going in the right direction. Thanks to everyone for the love, support and messages. They mean a lot to all of us! Sorry for the length of the post, but I wanted to let everyone know what was going on!
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