Sharing Knowledge Is An Invaluable Experience
Was put on Ecmo 3 days ago and a had tracheotomy for ventilation yesterday. Not on computer much now. Keep hopin for lungs. My <3 to all!
Dew Rotor4 minutes agoDew had another bronchoscopy today,and was sedated afterwards. But is alert and eating now. They took about 10 samples of her new lungs and said she might need more oxygen support and might cough up a bit of blood until the lungs heal from the sampling.Her right lung is still folded at the bottom and they said that it made sense that it is easier for her to breathe sitting up than lying down as gravity helps open the lung more when she is sitting up.She is still in a lot of pain today from having had her coughing destabilizing her breastbone which was healing.She didn't walk yet today because of being sedated from the bronchoscopy, but is hoping to have me help her do her "walk around the block" in a little while.The hospital also said that they had finished testing her diseased lung and whatever disease that caused her pulmonary fibrosis was definitely NOT sarcoidosis (which is also what the Ottawa General Hospital said in February of this year). They also told her a little bit about what it might be, but Dew didn't absorb it, so I will have to talk to the doctors directly, as it may have a bearing on the future course of the disease.She had 2 friends visit her today, so that was a very nice lift for her spirits and she had a better day today than yesterday.
12-23 12 noon PstDew Rotor13 hours ago · The area around the hospital has lots of electricity -- Christmas lights. street lights and office lights on everywhere. Lots of light pollution so it is never actually dark in downtown Toronto -- except today where a lot of neighbourhoods are without power. Many of the hospital staff homes are without power. But the hospital and area around it are unaffected. Even if this area was affected, I suspect the hospital has emergency generators for most functions. Today Dew asked virtually every hospital staff member who came into her room if she was being too whiny. They all laughed and said, "No". For her physiotherapy, she walked less than 1/2 the usual distance with the physiotherapists, but then asked me to try again with her later, as she didn't want to do less than previous days and managed about the same distance again. She had several very bad coughing fits, and although the doctor wanted her to try going without any oxygen today, they had to increase her oxygen substantially to get her oxygen saturation levels up again. Then they put her back on 1/2 litre per minute for most of the day -- about the same as yesterday. She had some more severe coughing fits while I was there, and I had to put her oxygen up to 3 litres a minute for maybe 3 minutes, when her oxygen saturation levels dipped into the low 70s, but then we were able to decrease fairly quickly back to a 1/2 litre a minute within 6 or 7 minutes. The nurse then decided to leave her at 1 litre a minute overnight. Dew was in a lot of pain suddenly from her breastbone, which was deliberately broken as part of the surgery to allow access to transplant the lungs. Previously she had not had any noticeable pain there. She is afraid she dislocated the two pieces of bone from each other with the severity of her coughing. The pain was so bad that she asked for narcotics again tonight. She had not wanted to, but couldn't manage the pain anymore. Then she promptly conked out around 9 pm. I thought, finally she will get a night's sleep for a change. But the nurse came in about 9:10 to give her some medications and she had to sit up for 1/2 hour after taking them because of the tracheotomy. Then there were another set of medicines that had to be taken 1/2 an hour after the first set and then she had to sit up for another 1/2 hour. Then, after that, her dressings on her wounds needed to be changed and that takes a while. So finally about 10:30, when she was wide awake, she was able to go back to sleep, but by then was wide awake. She was out of sorts and fretting most of the evening. She didn't want me out of her sight. The nurse who was her day nurse the day she was told she might get the transplant came in again to check on her as outreach from ICU to step down. She told Dew not to be afraid she was going crazy as the drugs during this phase of transplant are very destabilizing physically, mentally and emotionally. She said that they start the post-transplant period with very high dose of steriods, then bring them down very rapidly which plays havoc with people, even if you don't add in almost dying and then going through the trauma of major surgery and all the mix of all the other drugs combined. She told Dew to cut herself some slack. She said , "You are in a fish bowl, being observed 24/7 and you are going through all this immense trauma and drug induced instability. You can't just have a bad moment without someone noticing it. She said the nurses can go home and have a cry in the privacy of their own homes, but the patients don't have that luxury." Basically she told Dew to stop worrying about being perfect for everyone else when she is going through hell. However, her perfectionism is a trait I have tried unsuccessfully to break her of for decades. I even sent her to India to try to crack that perfectionism and only slightly succeeded in making a small dent in it. Dew also had one pill with corn in it today. They are intending to increase the number of pills with corn in them over the next few days. I wondered if that had anything with her doing so much worse today physically and emotionally suddenly as they have been changing the steriods for a while and she was doing great. Let us just hope that increasing the dose of the pills with corn will not tip her over the edge again and set her back with anaphylaxis.
Dew, you look so beautiful!! You have withstood every crappy thing that has been thrown at you!! We all admire you so much!! I hope that with each new day, you feel stronger and better! I'm so happy that you are feeling better for Christmas! God has been by your side all along! Hope you have a wonderful holiday!
DEW is the Incredible WOMAN!!
Dew RotorAll of the previous post was leading up to the following. Dew is feeling strong enough to receive healthy visitors, wearing hospital masks now.So if anyone really wants to come at this busy time of year, please do. However, if you even suspect that you might have been exposed to a cold, flu or worse, or if one or more of your family members are sick, please don't come.Also, if she goes into anaphylaxis, I will have to rescind the invitation! But despite all these caveats, please come if you have time and want to. Her grandparents and Aunt came for a visit today for the first time since a couple of weeks before she went into the ICU, and she was up to seeing them.Tonight I was going to leave early, around 9:30 pm so I could get to the grocery store to get some food for her for tomorrow before the store closed at 10. But she didn't want me to leave as I was reading her your posts. We started back at the beginning of the day she had the ECMO surgery and went into ICU. This time, she wanted to her my posts and your comments, prayers and support as we went through so she could understand what had happened all that time. We got up to about Nov 25. She was really amazed at how you were all sending such love, prayers and support to get her through it all when we really didn't know if she would survive until the transplant. She was falling asleep, and I asked her if I should stop and let her sleep, but she wanted me to keep reading, and finally I stopped when she was sound asleep.We have been lucky enough to have the same very nice nurse now 3 days in a row and will have her tomorrow, because nurses are needing to work overtime as colleagues are on vacation. This is great for continuity. Just wish they could try to have the same nurse on, even on rotation on a regular basis, as then they are more effective as they know where the patient is and have strategies for helping them with difficulties and can work on building strength day by day when the physiotherapists are not around. Or at least this one does. The first day Dew had her, she gave Dew a bath in the bed. It was the closest thing to a real bath Dew has had in hospital. This nurse is not afraid of using tons of soapy water and then lots of rinse water (the beds are sealed plastic). She couldn't do Dew's hair, but Dew felt cleaner than at any time in hospital. Another nurse told us that Dew's nurse is "the queen of baths" and she really is! Dew is really hoping for the day she can have a shower and wash her hair. The oxygen is no longer a limiting factor -- it is the tracheotomy. Tonight's nurse thought the trach might be removed and closed even tomorrow. She was surprised it had not already been removed, until we explained about the experiment with anaphylaxis that the doctors plan. Then she said it might be at least another week before the trach comes out.
about 8:30 PSTDew Rotor13 minutes agoThere was a very nice nurse on duty the day before Dew had her transplant. She was the nurse on duty when Dew went into anaphylaxis. I had said the anaphylaxis might be from the antibiotic. But she told me that as she increased the tube feeding formula Dew started getting itchy, and then when she increased the feed, Dew went into anaphylaxis. Dew had been on the antibiotic for a while at that point, so she didn't think it was the antibiotic as there were no previous signs of her reacting to the antibiotic. It happened while she was increasing the rate of the formula down Dew's feed tube. She was not on duty the next day when Dew had her transplant. She had a class that day, but still took the time to come and see Dew in the afternoon (while Dew was unconscious) to see how Dew was doing.Dew had her as a night nurse last night and when the doctors came around, she explained why she thought it was the corn and not the antibiotic. Tonight she dropped by just to be kind and visit for a couple of minutes with Dew and I, although she was not Dew's nurse tonight. She said that the doctors told her last night that they were hoping that the anaphylaxis was caused by the vancomycin antibiotic, not the corn. They said that vancomycin reactions would most likely show up after a couple of days, not immediately. So they still thought the anaphylaxis might have been caused by the antibiotic, not the corn, despite the fact that Dew had had itching and a rash and was given two antihistamines to try to suppress the allergic reaction while she was being fed the formula with the corn, and was on the 2 antihistimines when she had the anaphylatic reaction.They think it would be more convenient for her to have allergic reactions to yet another antibiotic, than to have reactions to corn, because corn is in almost all their medicines. (We have bought dozens of kinds of supplements and vitamins all free of all major allergens including gluten, corn, soy, dairy, etc for decades, and there is no difficulty finding these natural supplements, as all the good companies manufacture without major allergens, but apparently the big drug companies are all wedded to cheap corn and other ingredients). I don't think they are thinking about when she is going to need antibiotics though, as there as so few left that she can use.Regardless, it is not a matter of assigning blame for the anaphylatic reaction to the most convenient possibility, but the fact of what actually caused it. I am beginning to wonder if it was the total load -- the antibiotic plus the corn together that pushed her over the edge. I believe the nurse's observations were correct. But maybe if Dew had not been on the antibiotic at the same time, she would not have had such a violent reaction.The nurse thinks that the doctors will try the medicine with corn tomorrow. I suspect it might be Monday, but perhaps the regular doctors will not be in on Monday since it is so close to Christmas and may leave these doctors to deal with the problem while they are on holidays in which case they may well follow instructions and give it to her tomorrow.
Dew Rotor2 hours agoI'd been thinking that in a few more days, Dew might be able to start doing some of her own posting. Left her alone with the computer for 45 minutes, and came back and found she had used computer to take her picture and had been able to do a little posting! Pretty sound I will not need to "Commandeer" her facebook, as Rocque put it!The doctors on today are different than yesterday's doctors and I guess they weren't that keen to risk having her go into anaphylaxis on their watch, so the experiment with the medications with corn will wait until the other doctors rotate back.Dew's kidneys are still pretty under the weather from all the drugs, but are better than they were. No other news yet about the badly functioning diaphram. On the whole now, she is doing much better! 1 1/4 laps of the ICU/Step down unit and 20 minutes on the non-resistance bike. A few days ago after she had semi-collapsed again trying to get Dew from chair to bed, they went back to using the hoist. But hopefully soon, she will be able to do that too
It is so marvelous to see you smile and to know you are no longer on the ventilator. Even just the short experience I had of having lung trouble as a complication of my transplant surgery makes me see how you are enduring and advancing with much greater respect. You remain in my prayers. May hope remain an ever present companion. Many, many hugs.
HI Dew! It is so good to see beautiful you! What a wonderful smile...
You are a true inspiration and your mom has been wonderful in keeping us updated. Thank you for sharing your journey. Breath easy with those new lungs.
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