No Real Change
Today hasn't brought a whole lot of change to James' condition, but since we have many faithful readers who are as anxious as we are about progress, we provide this update. James continues to be on about 2L or oxygen and spikes fevers throughout the day and night. Tylenol and Ibprophen give him some perkier times where he feels up to playing and chattering.
They did a nose swab today which came back negative, indicating that he does not have an upper respiratory infection/virus. When he had another fever spike this afternoon they ordered a blood culture to be done to look for other types of viruses or issues that could be causing the fevers. We have not received the results from this yet (and don't really expect it will tell us much more). He has been on IV antibiotics for 24 hours now but has not really improved, so the results from this blood work may determine whether to increase the amount of antibiotic they are giving him or not.
James' sore throat seems to be gone, or at least it doesn't sound bad anymore. Instead he now has a very chesty cough, which is in line with the inflammation which the x-rays show. He continues to vomit at least once a day and we don't know why this is. It could simply be because of phlegm when coughing, causing him to gag and then vomit. He has not had his GM-CSF treatment since last Tuesday, which suggests that the treatment itself is not the direct cause of his vomiting; we have always assumed that the loose phlegm (due to the treatment) was the reason for his vomiting.
James also continues to require a lot of venting to get the air out of his stomach. This again could be because of his increased oxygen needs, but there may be other reason for this. We have been getting a lot of phlegm out of his g-tube when we vent him, so we wonder how much this is backing up his system. Since we are still waiting for the C. Diff results we don't know if that's still a factor. GI has also suggested that sometimes the digestion of food can cause gas (e.g. a person who is allergic/intolerant to milk can become bloated) ... so if it continues we'll have to take a closer look at his formula. But yet, he never had this before, and he’s been on this formula for a while now. At nights we leave his g-tube open to let his stomach drain and we've been seeing huge chunks of phlegm coming out of his stomach. We always knew that he was getting stringy phlegm similar to what is in his lungs coming out of his stomach, but we've never really seen chunks before. Hopefully this is just because of the procedures and will settle within a few days.
They have decided to hold off on the CT scan for a couple weeks until his right lung has fully recuperated. Doing a scan now would give false results of how effective the lavage was.
Grrrr: They took blood (again) while he spiked a fever, and tested all other things but what they specifically took blood for in his fever. So now they're back again for more!! (Did I say Grrrr?? Let me clear my throat......GRRRR. Thats better.)
So for the time being we’re still bumming around here, waiting for things to settle down and improve.
8 comments:
So sorry to hear of the hurdle on the recovery road. Hopefully tomorrow will bring some answers...and solutions.
Praying for you all.
Thanks for updating us all.
Love, Al and Diane
Praying for a brighter tomorrow!
Rich and Tracey Stam
Keeping you in our prayers...it must be easy to feel so discouraged. May God give you much patience and strength. Hope to hear more good news soon!
Matt and Sarah Bartels
Dear James
you have done far better than anyone expected and maybe even dared to hope for. And we cant wait for you to be 100 % better, so you can come on home. We all look forward to hearing that you are back in your nice toddler bed - man you looked so cute in that - and that you can cuddle with Matthew and play with your trucks again and to be with the girls as well.
Big hugs and kisses
May you be given much strength and encouragement as you must overcome another hurdle.
Thanks for posting pictures as well,
In our thoughts and prayers
Nathan and Aileen
May you receive the patience you need to get through yet another hurdle. You continue to remain in our thoughts and prayers. All the best,
The VanderLaan's
I am concerned with some of the treatments that James is getting although at this stage there are obvious treatments that he needs and cannot do without. It seems that they keep switching him between Tylenol and Advil which I'm sure confuses his body and Advil being the better medicine, I would suggest using only Advil. Generally, hospitals are only allowed to use Tylenol (from my experience anyway). Tylenol numbs the brain censors; Advil goes right to the source of the pain/problem. That's my two-cents worth for today.
Ike
Ike
Using both Tylenol and Ibprophen is something we've always done with James and is somewhat a common approach. Since both of these "attack" a different part of the body they usually like to give both so that they can work together to help relieve any pain/discomfort, or in James' case to bring down his fever. It is especially common to do this when they don't really know what the cause is. Usually they are given intermittently so that he always has some sort of medication in his system. When James gets sick we often have to go through a "testing" period to determine which of the two will be most effective for each illness ... with todays case it seems to be the ibprophen is a bit more effective but they are working best together. Something we also try to keep in mind is that tylenol has little to no side effects (and therefore is the drug of choice) versus ibprophen which has several, the most common being stomach ulcers. As for your suggestion to use only Ibprophen ... since we have seen that it is more effective this time around that is usually the first thing they give him, if that hasn't brought down the fever we then also apply the tylenol.
Thanks for your "two-cents".
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