Today was a long rough day. A lot of ups and downs. Daniel was up and down with a fever all day and up and down with his moods and up and down with his nausea and vomiting and even up and down a lot with aches and pains in his joints. It kind of looks on the surface like a full body flu to me. Thankfully he slept a lot. The nurses and doctors were great about his birthday and I think he was only upset when it came to food and meal time when he wanted special birthday treats and knew that they were not happening. Once again his body is not cooperating with what he wants and he is not even sure he wants what he wants. Poor guy couldn’t keep down what he wanted at this point anyway, which brought us to one of the least welcomed visits of the day from the nutritionist. Seeing as though his weight is down so much again and he is so weak and even whatever his caloric intake is, is coming right back up we are at decision time for dietary concerns. If he can’t keep weight on he won’t be able to get strong enough to get better. Well that is not exactly true but the weight is definitely a huge factor for keeping his strength up and getting better faster (as we have already seen). There are several options and several of them are good but none of which he likes. He does not want an appetite stimulant because it scares him too much because of what happened last time he had one. For those of you just tuning in he ended up in the ICU because he had what they determined was a stroke or some type of overdose reaction last time and it was basically scary as shit and there is no way he ever wants to experience that again. I don’t blame him. I saw him trapped in his own body and I know it is my guarantee for life that this child will NEVER do illegal drugs. Even though the doctors told him that these appetite stimulants will be very different, he is not hearing it. Period. End of story on that route. Plus I personally think it is kind of cruel to stimulate an appetite and make hime really hungry for food that his body can’t hold and that he will just throw up. Another option is TPN which is liquid nutrients that is okay, but not the greatest option. It is the medical meat and potatoes and he has had this before. It is in an IV and one is white and one is in a brown bag (hence the meat and potatoes). It is not directly feeding the gut, so it is not the most organic way to go but it is medically sufficient and it will fit the bill for nutritional value but it pretty hard on kidney and liver. This is probably the Doctor option, but the best option and nutritionist choice is an NG tube. It may or may not work because chances are it could still make him nauseous and throw up but they could try to bypass the stomach to avoid this. They say he should feel more full and he will get digestable food directly to his gut which is the most natural. At a sooner point he will feel better because he will have more caloric intake which will in turn give him more strgth and enrgy if he can keep the intake in. Plus he can eat on his own as well with the NG tube. So what is Daniel’s choice, since it ultimately is Daniel’s choice…none of the choices. He has chosen to just eat. Seriously? Dude it’s not working. He said he will try harder and try to eat even if he doesn’t want to. So what happens, dinner rolls around, he gets upset he can’t have what he REALLY wants for birthday dinner. Says he will have room service…gets upset because he hates the thought of room service and then I go to get him soup. I finally get back with the soup and after several excuses to not eat it he finally forces down a few spoonfuls of broth avoiding the chicken BUT eating a few grains of rice. I swear I am living with a daughter with an eating disorder at this point, but try to understand how hard it is for him and try to not badger him about how he has to try harder to eat more. I leave it at a few spponfuls trying to remember he hasn’t held any food down for almsost 4 days now and hope for the best. He made it almost 20 minutes before throwing up. He felt so defeated. It is not for not trying. His belly and this virus is just not cooperating. Again the doctors assure us that this is par for the course and it is what they expect to see with these viruses. By this time he has started his Anitbiotic for the CMV and they have told us that this morning his levels were over 200,000. Again treatment typically starts at 1,000. I was saddened further to find out that CMV can potentially be tough to treat and although does not typically go further that this stage to attack further organs or systems can be lengthy to knock the numbers back down…argh pesky numbers. Now we want these numbers to go down. We were informed that we should plan to be here at least a couple of weeks. Tomorrow I will go home to pack some things for our stay. But wait as I am now getting ready for bed and writing a list of things to gather at home in walks an Attending to inform me BAM! Another one of his cultures came back and 1 of the two that they grew came back positive for a bacteria POW! So now we have Viral and Bacteria on board. Double whammy. Now she did say it could be a false positive and they see if the second one grows and they draw another one (which they did already as we were speaking) but to be safe they can’t give it a chance to grow at all so he has started ANOTHER different antibiotic for this infection now this means he is on three different IV antibiotics right now. The thought of this at this point makes me want to vomit. The one they just put him on (hopefully short term) is the one he was on back in June which has already caused some kidney damage. Do you know the repercussions of long term use of antibiotics on the body. Look it up. they are just playing with petri dishes and test tubes trying to balance levels to keep everything in check and not upset the balance. He was going to come off of a big drug on Friday. Instead he is now adding more. I think this brings his total up to 38 pills sprays or ivs drugs in the morning and then 42 plus at night. Yep, I want to puke for sure just thinking about it. Again I remind myself every hour that this is all part of the process and he is actually doing really well overall. Then I wonder if I am kidding myself. Are these hiccups, speed bumps, whatever you want to call them. I have to believe they are. I am not blind, or naïve, I know how bad it all stinks but when I really think what they did to his body and the miracle of what is happening I know that it is going to take more than an instant miracle to just make it better. It is going to take a long hard road of rehab and repair until it gets to the point where we can say he is OK or he is fine or he is all better. I wish I had a crystal ball and I know when that was going to be. I have to put it all in perspective and slow down for the marathon they warned us for. I guess I got excited about going home the first time and then the second time but now after being back ---what is this the third time I won’t get so excited and just slowly slip into the steady pace of reality an start thinking about my running race as more of an ocean and just ride the wave. Mahalo friends. Come along with me for the ride.
2 Comments
Anna Mallinson
1/7/2015 11:38:52 pm
Happy shitty birthday! May he could be like the Queen and have two birthdays - this one sucked but once he's feeling more himself - pick a date and celebrate then!!
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Chandra Rosenthal
1/8/2015 12:54:40 pm
Great idea Anna! What a crazy day — you must all be exhausted. Wishing you many better birthdays...
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