looneymom Posted August 12, 2014 Report Share Posted August 12, 2014 Tyler had his tunnled central line put in yesterday. He is very sore from this procedure and is still in some pain. The doctor has allowed him to be given moltrin/alive, morphine and this seems to really help take the edge off that pain.This mornng, he had the plasmapherisis and did ok during it. He said he felt like he was taking a hot bath without the water. He was sick and nausate to his stomach and his tremors were more frequent about an hour after the treatment. He was given some zofram through his IV and that really helped with the nausa. He will not have another treatment until Thursday morning but I will be asking if they can give Zofram before they start the treatment.Our doctor has told us that it might take several treatments before we see any difference with any symptoms. Tyler will be in the hospital for the rest of this week and will be getting some more plasma treatments as the week goes on. The length of his hospital stay will depend on how well his body handles the treatments. Quote Link to comment Share on other sites More sharing options...
corina Posted August 12, 2014 Report Share Posted August 12, 2014 Thanks for letting us know! Sending healing thoughts Tyler's way and keeping my fingers crossed this will help lessen his symptoms. Being so young he deserves to get a break from being so sick. Quote Link to comment Share on other sites More sharing options...
xRobin Posted August 12, 2014 Report Share Posted August 12, 2014 Best of luck to Tyler!Is he done with IVIG? Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 12, 2014 Author Report Share Posted August 12, 2014 Our doctor wants to stop the IVIG treatments for a while. Tyler may have some later on after he finishes with the plasmapharisis. Our doctor is not certain about how many of these treatments may be needed. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted August 12, 2014 Report Share Posted August 12, 2014 Some hints related to plasmapheresis: hydrate, hydrate - drink plenty of fluids in the hours before the procedure; the procedure takes out blood sugar from the bloodstream so, eat something about 30 min-1 hour before the procedure and keep a bottle of gatorade, powerade, ensure, or something like that at bedside to sip on during the procedure; you are correct to pre-medicate with Zofran before getting started - might want to consider pre-medication with benadryl as it helps with nausea and tremors also. Be absolutely sure that the plasma team is not trying to keep calcium levels up with oral calcium tablets just before the procedure - it won't work and oral calcium takes hours to digest and get into the blood stream. IV calcium gluconate during the procedure will keep away the tremors and prevent the tetany of muscles from low calcium levels. If low blood pressure during and after the procedure is an issue, the MD can order IV fluids to be given during and after the procedure. I always receive at least one liter of Normal Saline during the procedure and sometimes, a second one after the procedure. If receiving IV calcium, your son must be on a cardiac monitor in an area where resuscitation is available. This is a national standard for the IV administration of calcium. I have my procedure done in the PACU where there is always a monitor, resuscitation equipment, and experienced physicians and nurses. I have been receiving plasma exchanges for over 2 years now and I also started with 2 weeks in the hospital - a double exchange every other day. I am now down to once/month for exchanges - the plasma team can adjust how many exchanges your son can tolerate - I cannot tolerate a full double exchange as an out-patient but, I can make it to a 1.5 exchange before crashing with low blood pressure and nausea. Adjusting the pre-medications, and medications during and post-procedure makes a huge difference. I have IV benadryl, zofran, phenergan, and pepcid ordered on an "as needed" basis - Hope this works for your son - it has made a big difference in the quality of my life Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 12, 2014 Report Share Posted August 12, 2014 Always wishing Tyler and your whole family a good outcome! Quote Link to comment Share on other sites More sharing options...
Becia Posted August 13, 2014 Report Share Posted August 13, 2014 Best wishes to Tyler! And Zofran is awesome stuff, it always makes me crave pancakes... Quote Link to comment Share on other sites More sharing options...
Goschi Posted August 13, 2014 Report Share Posted August 13, 2014 Good luck and best wishes for Tyler!!! Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 13, 2014 Author Report Share Posted August 13, 2014 The doctor came in again this morning and ask Tyler if he could try another treatment today. Tyler said he thought he could do it. They will be giving him the Zofran before they get it started. They are not giving him calcium through the IV but they are giving saline. His blood pressures did stay up through the procedure yesterday. Overall, our doctor was pleased and surprised that Tyler did so well. The plan for today is for Tyler to have another treatment and then take a break tomorrow.from treatments. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted August 13, 2014 Report Share Posted August 13, 2014 Hi, I'm so happy for you guys and relieved to hear he went through it pretty well. I never had any nausea at all. Are they replacing with albumin? Soskis tips are really good. I think back and realized they didn't do any of those extra's for me. I would get cold sometimes from what was coming back in and they used these warming blower/sheets. I had that one sudden drop/bounce in BP. I do remember within a few treatments seeing my hyperandrenergic bp/hr normalize. I was amazed at how quick that happened. I think I got it twice a week for several months. Then the anemia showed up with an infection. I'm guessing from the cath, but it could also have been my undiagnosed hypogamma. Pretty sure the anemia was do to the exchange, but there are those kind of blood issues with hypogamma too. I had iron infusions to fix it. Then once we found the hypogamma, my doc switched me to ivig. Which I fully admit took much longer to work and required a change from carimune to privigen. Carimune had to many side effects for me. I'd say about six months after starting the privigen I started to see improvements in the autonomic issues. It was a year before the bacterial infections lowered. I haven't had one of those in more than a year.Unfortunately, igg replacement of privigen doesn't cover all types of infections and I am currently fighting a pathogenic form of yeast called c. glabrata. I'm going to see an immunologist to assist with figuring out how to clear it.Keeps us up on how today goes. Really happy your doctor is pleased. I am too! Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted August 13, 2014 Report Share Posted August 13, 2014 Best wishes to Tyler! I hope this treatment will really help. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted August 13, 2014 Report Share Posted August 13, 2014 Best wishes to Tyler! Hang in there - I know it's hard for you as a parent to watch your child have to go through all of this. Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 14, 2014 Author Report Share Posted August 14, 2014 Well, Tyler got a break today from treatment. However, he is scheduled for tomorrow morning and Friday morning for treatment. According to some guidelines in this hospital, he cannot have another treatment until 24 hours after the first treatment. Quote Link to comment Share on other sites More sharing options...
badhbt Posted August 14, 2014 Report Share Posted August 14, 2014 Tell him to hang in there and that he is doing a great job! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 14, 2014 Report Share Posted August 14, 2014 It's so nice to hear of a proactive doctor. Hope Tyler sails through the next few days! Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted August 14, 2014 Report Share Posted August 14, 2014 The very best of wishes to Tyler. How encouraging that the doctor is pleased and that Tyler has been able to tolerate the treatments. I pray they are successful. Janet Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 15, 2014 Author Report Share Posted August 15, 2014 Tyler made it through another treatment but his headache pain level went up again and he was sick to his stomach about 3 hours after the treatment. His headache spiked up during the middle of the treatment. BTW Can they give saline during this treatment? Or will that make it worse on Tyler? He was drinking gatorade througout the procedure. This procedure takes 3 hours to finish. His doctor is going to give him a break tomorrow and do another treatment on Saturday. He will try some different medications on Saturday before starting treatment to see if they will make a difference. Tyler told me tonight he could not make it through another treatment if his headache pain level does not go down. So glad we have the day off tomorrow but I'm dreading Saturday. Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 20, 2014 Author Report Share Posted August 20, 2014 Tyler made it through the treatment on Saturday. The doctor was able to get the nausa under control. He was released on Saturday and started out patient treatments again this week. So far we have not seen any improvement with symptoms but have been told we should notice some type of change after 4 weeks. His headache does get a little worse during treatments but it does not stay at that level for more than a day. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 20, 2014 Report Share Posted August 20, 2014 Thanks for keeping us updated. Keeping my fingers crossed he sees an improvement, even if small, soon! Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted August 20, 2014 Report Share Posted August 20, 2014 Rachel:I'm keeping my fingers crossed!!!Pam Quote Link to comment Share on other sites More sharing options...
Goschi Posted August 20, 2014 Report Share Posted August 20, 2014 Tell Tyler that dinet-members from all over the world send him power and best wishes for his soon to come recovery!! Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 21, 2014 Author Report Share Posted August 21, 2014 Tyler had another treatment this afternoon. He tolerated well it but it has not affected his headache. I hope this is the first symptom to go. Quote Link to comment Share on other sites More sharing options...
corina Posted August 21, 2014 Report Share Posted August 21, 2014 Sending good thoughts Tyler's way! And to you too Rachel! Quote Link to comment Share on other sites More sharing options...
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