And the hits just keep on rolling. Today got off to a banner start when the doctor came in and declared Daniel “officially “ nutritionally deficient. He was extremely serious about needing to address this issue immediately and the decision was made for him when it was determined to drop an ND tube. This will bypass the stomach to hopefully bypass vomiting. Daniel was very upset that we trumped his choice and the doctors tried to reassure him that it is not his fault and we are not punishing him but that his body just isn’t cooperating and because of the dextrose in the IV fluid in his empty little body it is creating a perfect breeding ground for bacteria and infection, so we need to get him another source of nutritional intake. So as that decision was made, then there was only the follow through to go through. I have to say this may have been one of the most traumatic things Daniel has ever had to go through. He was scared and angry and upset and all those things when you can’t relax are not conducive to a smooth insertion of an NG tube. Needless to say it did not go well and he was a hot screaming mess that disturbed the entire unit. Now that it was in, but there was no consoling him it was not sitting right and he would not settle down and he needed to go downstairs for a chest xray. One because his oxygen level keeps dropping and two because they need to see the tube placement. He uncomfortably made his way down to xray with muffled screams in the hallways and when done found out not only was the tube in bad placement but that the chest xray itself looks bad. Bad placement means no eating or using the tube until it can be adjusted and at this point the next person to come close to him is surely getting punched in the face so now that is in holding pattern and now we are highly concerned about his chest and lungs. But he is now also on the no eating list because the chest xray indicates that he needs further testing to evaluate what they see. A few hours later and more information than I can process and Rob finally arrived after 1pm. By this time Daniel was in agony with this NG tube and begging to take it out. I can not at this point it hadn’t occurred to him to pull it out on his own, but it didn’t. Now he is so uncomfortable and Rob doesn’t deal well with Daniel’s discomfort. I have spent the entire morning trying to calm him and trying to explain that he did not do anything wrong or ask for this, his body is just needing him to accept whatever it needs to to get better and unfortunately it all sucks and we just have to get through it. Well that isn’t getting me anywhere in the mental health department and before we have to go back downstairs for a PET/CT SCAN we compromise and remove the ill placed tube for a while so he can get a little rest but the deal is that the tube will be replaced when he is asleep for the lung biopsy he needs to have. The tube in fact was kinked in his stomach which ultimately would have probably caused a feeding issue once we tried to use it anyway, however that is not an issue anymore. They will insert a smaller tube which will still be uncomfortable and feel weird, but it in no way should hurt. He needs to remember he felt the same way about his broviac chest tube that I sure he is now glad he has that took him a while to get used to and sort of forget about. As fa as the two major lung tests. They will be to determine what exactly the infection is that is going on. Is it a true infection that will be detected by the CT and can be treated with Bactrum (which has negative effects and fights against the transplant-not good) or is it something they find during the lavage procedure (lung wash and biopsy) that will more likely indicate my greatest fear of Graft Versus Host Disease. Neither a good scenario but in the grand scheme of things this is early in the game and although his oxygen levels are dropping they are not in a dangerous low area, just are very concerning and indicating a looming condition on the rise. The name of the game in BMT seems to be head it off before it becomes something…now if you could just tell that to the pulmonary team that we are waiting for before the end of the day. On a bright note. Daniel’s BK levels came back low and he is off all medications for that. Yeah, wah, wah, wah he is on about 6 more now for nutritional stuff, Album, magnesium…So all that being said we just met with the Pulmonary team that will be doing his procedure tonight at 7 pm and basically the deal is infection versus imunnosupression therapy…stay tuned. We will know more tomorrow. I am just glad they are proactive and always thinking of the best aggressive treatment for us.
5 Comments
Anna Mallinson
1/8/2015 02:23:11 pm
The only words I have can't be printed here....am pretty sure you've all said them out loud anyway. What else is the poor boy (and you) going to have to go through??? Enough already!
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Ilana Steinberg
1/8/2015 02:37:40 pm
Thinking of you all so much, and keeping you in our prayers. So sorry that you have to go through all this. Wishing you a better tomorrow, and a better tomorrow after that.
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Hilary
1/9/2015 05:15:39 am
Thinking of you sending love, prayers and some new vocabulary words!
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Brenda
1/9/2015 05:51:22 am
So brave...wish I had the words to give you some relief from these trying times. 😢
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Leslie sidell
1/9/2015 03:04:12 pm
Sorry sorry to hear about the extremely difficult days. Sending lots of prayers.
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