Sorry I haven't blogged in quite a while. Aaron has been in the hospital for almost 5 weeks, and at times he was very, very, very sick. I just haven't had much chance/time/energy to sit down and just do it. I should have been posting updates here and on Facebook simultaneously, but didn't. Once I get caught up I will definitely start doing that. He is still in,but making some small progress everyday. I am not going to go into the whole situation now, it will probably take me a couple hours to type that all up and make sure I am not forgetting anything, but I figured since this was such a long update, I would post the whole thing here, and only bits and pieces on my Facebook page, but I promise I will blog about the whole situation and what happened soon. Aaron is doing ok- still a ways to go and probably will be quite a few more bumps in the road, and he isn't completely out of the woods yet, but we are slowly getting there. Here is the update for everything that happened with him on Friday night, into Saturday. I truly apologize for the length.
Aaron was moved today from the cardio-thoracic (mainly surgical) step-down unit and up to the regular pulmonary floor, where all pre- and post-lung transplant patients go if they are hospitalized. He is happy to be back up to the floor he is used to with all of the nurses he is used to. They are definitely more adept at caring for post-transplant and CF patients than most other floors, and realize that you know your body best. It's a huge step to go from ICU and intubated to up into a regular hospital room in just a few days (he just left the ICU last night). He is no longer on constant telemetry (heart rate, ECG/EKG, o2 sat monitoring, blood pressure, etc.), which is nice. Less things to worry about when getting up.
One big piece of news today..... Aaron got BOTH of his chest tubes out this morning!!! He is chest tube free. Two less tubes in his body to worry about and deal with! He said it was incredibly comfortable and painful, which I can only imagine especially watching them remove them. Because his oxygen saturation were pretty low (90% or so), they didn't want to give him anything beforehand- he has nothing for pain, except tylenol, as narcotics tend to suppress breathing, make you sleepy, and drop your oxygen sats more. They didn't want to take a step backwards and start putting him on more oxygen just to get the chest tubes out. I can see their point, but I can't imagine it was a pleasant feeling. At least the thoracic surgery fellow that pulled them has had a few before, so he knows what it feels like.
His oxygen sats have been holding fairly well on 3 liters of oxygen. They were around 90-91% this morning, and mid-upper 80s (a little low) when up or moving around, but that was mainly due to pulmonary edema/fluid in his lungs. After a couple doses of lasix (a diuretic) and removing close to 5+ liters of fluid off his lungs and out of his tissues, his oxygen sats are more like 95-98%, which is where they should be. Hopefully, they can start weaning him off oxygen day by day. He will probably be on Lasix or other diuretics for a while, even when he goes home to keep his lungs dry.
There are a few reasons that he keeps getting pulmonary edema/fluid: the high dose IV steroids he is on to treat the rejection and inflammation in his lungs causes him to retain water; his kidney function/creatinine aren't great, causing his kidneys to work less efficiently and need more help removing fluid from the body; with lung transplants, and Aaron in particular (because his left lung from his first transplant was chronically collapsed, the body kind of encapsulated it, causing it to calcify, so they had to do a LOT of scraping and cutting to try to get the lung out during transplant, making as much space as possible for the new lung), they end up cutting some of the lungs' connections to the lymphatic system, which would drain the fluid off if the connections were still there, but since the have been severed, the fluid tends to collect in the lungs; the rejection, infection(s), pneumonia, inflammation, pneumonitis injures the lungs, and what can happen is that the fluid tends to end up going to the site of the "injury"; and lastly, especially since being on the ventilator and unable to take his pills, they switched a lot of his meds, particularly some oral antibiotics, to IV, and many of them are mixed in quite a bit of saline or sugar water, so he is getting a lot of fluid through all of his IV meds, ending up overloading him, not to mention what he is eating/drinking (still just on a full liquid diet, but hoping to advance to a mechanically soft diet, or something similar today) and the constant tube feedings he is getting. Because of all of those factors stacking up on top of each other, you end up with quite a bit of fluid in your lungs.
They are hoping that the lasix will help jump start his kidneys, and many some of the medication changes will give his kidneys a bit of a break as well. Many of the antibiotics and transplant meds/immune suppressants are processed through the kidneys, really stressing them after years of these necessary medications. Most post-transplant patients, I know for sure with lungs, are NOT allowed to take any anti-inflammatoriesinflammatories/NSAIDs, such as ibuprofen, aleve/naproxen, aspirin, etc. only tylenol because the NSAIDs are processed through the kidneys. They try to save the kidneys for other medications. It is a delicate balance of trying to give the medication and at the dose it needs to be, without burning up/over-taxing your kidneys. I think that we need to make an appointment with a nephrologist after Aaron gets out of the hospital (which won't be anytime in the next day or so, probably another 4+ or so days), to see what we can do to better protect and preserve his kidneys.
He hasn't been sleeping much, and is absolutely exhausted. It is much quieter up on this floor, so hoping he will get more rest. After the rough day today with all of the fluid, he didn't get up to walk, just the bathroom was a big effort for him, but he is planning to start walking more today. The big incentive for walking is that they can stop the daily lovenox injections, which helps prevent blood clots in people who are in bed and not moving/walking around very much. They wanted him to try and sleep with the bi-pap tonight to keep his lungs open, but after a good 30-40 minutes of it, he realized there was no possible way for him to sleep comfortably, and sleep is the most important thing right now. His sats are fine, he's not short of breath, so it's not like he absolutely has to wear it. His is doing ok with just the nasal cannula. I think that's about all of the news for now.
We still don't really have a concrete answer to what caused all of this in the first place. The findings on the open lung biopsy were kind of inconclusive. Nothing grew out on the cultures, and the biopsy doesn't show infection or rejection. Based on the steroids working and everything else, we all believe that rejection played a big role in that. Because he has had soooo much immune suppression, rejection doesn't show up looking like you would expect in someone else that hasn't had the same chronic rejection treatments that he has had. They may never have a true or good answer for what happened, which frustrates us and the doctors, but as long as something they did worked, which it seems to have, then we're fine with it. Hoping he gets a good night's sleep and feels better in the morning. We are sticking to baby steps and taking a day at a time.
Anyway, I think that's it for now. Sorry for the length. Crammed a lot of stuff in there, and I know I am wordy! I'll get back to blogging and explain the whole situation and the past 5 weeks, hopefully soon. Been a lot going on and a lot to cover, so it may take me a while to make sure I don't miss anything. Please keep praying and sending positive and healing thoughts to Aaron. He has a long way to go, but between his fighting attitude and strength, plus the many prayers and outpouring of love and support have helped/are helping get through this rough patch. Hope everyone has a good Sunday, and thanks again for the love and support. It means more than you will ever know.
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