2 weeks, 2 days.
Two weeks and two days after the last infusion of IVIG
Ivy is sick.
It’s not surprising, really, considering she didn’t get the whole dosage of the Intragam P
Two weeks and two days without IV antibiotics and both of her ears are discharging.
Growth: Staph and Pseudomonas.
The staph is just your garden variety though
and so the paed
has decided he will trial her on our old friend Erythromycin.
I’m not sure whether to laugh or cry.
Part of me lives in hope that the oral antibiotics will be enough,
that we can avoid the hospital and make it through the rest of the week.
Then it will be IVIG time again.
Plus the paed is off to Sydney.
Plus David is running training.
So next week would be a much better week for Ivy to fall in a heap, all round, it seems.
Part of me wants to be thankful that it is only staph A
and not the dreaded multi resistant staph that plagued us last May, June and July (okay and parts of August and November too)
but
another part of me wants to throw my hands up in horror.
Staph!
Again!
Pseudomonas!
Again!
It’s only been two weeks and two days!
Also;
(and I hate to be the pessimistic one in this relationship)
I don’t think the orals will do much to help Ivy, we are long past that
and if the EES helps with the destruction of Staph, we are just making way for the Pseudomonas to take hold.
Pseudomonas and Ivy have a long history together.
That nasty little bug makes Ivy acutely unwell,
very quickly
and
it gets into other places
like the lungs and her eyes.
I suppose you could say the Staph is our friend, right now.
It’s making it almost impossible for the Psuedomonas to take hold.
Staph loves oxygen
Pseudomonas loathes it.
Bacteria 101 at its finest.
The fact that the Pseudomonas is there at all though, is just not a good sign for the girl
and if I was anything worth my salt
I would get back on the phone with the doctor and tell him
that I think
that IV antibiotics are the only thing that will clear this new infection
or old infection, revamped.
Who knows.
The other problem is Ivy’s inability to stomach oral antibiotics…
I could go on and on but it all seems so overwhelming right now
and stressful
and frustrating
and repetitive.
The sad thing is,
I think it will mean ballet is out for the girl
and pre school too
and
for this week, at least,
we will be lounge dwellers
once more.
thinking of you , we send our love .if you need any help please please ask . luv alisa xxxxxxx
got all my fingers and toes crossed here… mine and the babies… hoping that there is a minor miracle and the bugs drop dead from all the love and positive internet vibes… hey we can live in hope!
Thinking of you!
Oh sweet little Ivy, I wish she could lick this once and for all. She is definitely in my prayers.
I am so sorry you and your sweet baby are going through this again. Trust your gut. If you think this isn’t the best course for her, do what you think needs to be done. Nobody loves that baby girl like you do. Nobody knows that baby girl like you do. Trust yourself. I will be praying for you both. Blessings.
Oh no! I’m so sorry. This absolutely stinks. You and your little girl deserve and NEED a break. Thinking of you. Hugs
bugga bugga bugga bugga.
sending love and hope
The whole deal sucks and I wish the paed would listen and listen to the biology of bacteria 101.
(hugs) you make it to Monday.
I truly hope the paed has made the right decision with oral antibiotics, and you both get to stay in the comfort of your own home xoxoxo
So, so sorry & frustrated for you & Ivy. Here’s hoping the EES will keep the pseudomonas & staph at bay without too severe ill effects for Ivy until IVIG on Mon. I know it all seems so hopeless but you & Ivy both have to remain as persistant as these monster bugs are until they give in and leave Ivy alone, even if it’s for the long haul. This just HAS to improve sometime, hopefully sooner rather than later. xoxo
Grrr. Grrr. Maybe he’s down in Sydney at a conference on how to treat chronically ill children?? How oral ABs don’t work well for immune suppressed people? I hope you can make it till Monday.
Stressful all round. xx
Why did Ivy not get the full IVG dose?? Please tell me they’re NOT using “our” girl as a guinea pig in some weird medical trial. I don’t like to think of her being so sick again, it just makes me cry.
I was at the doctor myself this afternoon with an earache, thought I might be starting an ear infection or sore throat or something. Nope. Just a blocked Eustachian tube. No medication required and it seems to be clearing already. Certainly swallowing is easier and my ear has stopped “popping” with each swallow.
Please give Ivy extra hugs from me, and I really hope she is well again sooner rather than later. The oral antibiotics have me worried for her. Why don’t they just go with IV?
Fuck. So sorry to hear she’s not well again. (((hugs))) to you both. xxx
How very stressful
Good morning from San Antonio.
I just got my kids out the door and logged on the computer to see what the blogging had to offer this morning… and THIS was not what I wanted to hear. I am so sorry that Ivy isn’t doing well. It always drives me insane when I see how your pead acts with Ivy… I cannot imagine what you all enduring. I love you all! Please take care of yourself and of your sweet little Ivy. We’re thinking of you and praying for you all.
Feel better Ivy!
You are so patient, Tiff.
One foot in front of the other. One hour at a time. One day at a time. This, too, will pass.
I am praying for you and Ivy and your family.
So stressful, I’m so sorry.
I wish I had something helpful to say Tiff, I’m just appalled by all that Ivy and your family have gone through. If one more prayer from the other side of the world helps though, know that you have it. Hugs.
Dang .. I hope that the oral antibiotics kick butt. If not, I hope that the ped will listen quickly and get the IV ones in Ivy so that she can get better soon. I’m sorry she’s down and out right now!
How is that beautiful, sweet angel doing today??? Thinking about you guys!
poop ! day by day matey … I am wishing things better for you le xo
Oh bugger. I’m so sorry. I hope it all turns out ok but I guess you’ve got a long week ahead.
Is there a spare room for the paed to move in? I think it’s the only way he’ll fully understand the ramifications of an underpowered “trial” of oral antibiotics, and many other things. OR maybe it’s time to pack up and move to his house. Yes. Yes. I believe it’s time to move in with him.
I feel frustrated FOR you. Now off to catch up because I’m sure this has progressed and/or gotten better and I’m hoping it’s the latter.