Urgent

I'm sitting here in the dark beside Noah's bed just watching him sleep.  Just minutes after posting my last blog post, I walked over to check on him because Hannah said his breathing sounded odd - like he had the hiccups.  He was very hot and when I checked his temp he was running a fever.  Things happened very quickly after that.  I called hospice who called Dr. B.  I drew labs so our nurse could run them to the lab as soon as she got here.  Within minutes both the nurse and Dr. B were here (SO thankful for a pediatrician who will come to our house on a cold rainy night!!!!), antibiotics were ordered, and labs were on the way to the hospital.

Noah is very sick.  At this point, it is a reasonable guess that he has the same virus his siblings have.  Dr. B looked at them and doesn't feel that it is strep b/c the first ones to get sick were better within 2 days.  Of course, last time we thought Noah had the same virus his siblings had, he was septic.  Even if it is "just" the virus, this could be bad.  Noah reacts very, very badly to viruses and some of his worst things have happened in conjunction with viruses, not infections.

Noah's fever is rising rapidly, (103.7 last I checked) and he is swelling visibly with pitting edema all over his body.  The petechiae are worse.  He doesn't look like the same little boy who was laughing and playing this afternoon, and in fact doesn't look like the same child as when Dr. B was here a few hours ago. His hemoglobin is down, platelets down quite a bit, PT/PTT elevated, liver enzymes up just a bit.  He'll probably need lasix in the morning and Dr. B will be calling heme/onc to see if they want him to come in for blood and/or platelets.  I'm not sure how I feel about taking him anywhere with him this sick, so we'll have to see what the morning brings.  His lungs sound OK so far but his belly is very distended from fluid retention so we'll need to watch closely for congestive heart failure or respiratory distress from the fluid.  He's very hard to rouse at this point but he is retching every few minutes.  Fortunately he isn't throwing anything up, probably because he has copious amounts of bile and blood draining from his stomach and there just isn't anything to throw up.  If the retching continues, we'll start IV Ativan in the morning.

Noah's hospice nurse just left but is on call all night if I need her back here for any reason.  She stayed for a few hours to watch his vitals.  He's tachy but his blood pressures are OK.  We increased his fluids almost as soon as we realized he was sick, which is probably helping his blood pressures.  He is still breathing oddly with a hiccup sound every couple of breaths, but all and all he is reasonably stable right now.

A courier will be here in an hour or so about 2 AM) with Noah's antibiotics and some IV ibuprofen.  We'd stopped the Caldolor (ibuprofen) in favor of Toradol, but we are switching back for now for fever control purposes.  I'll hang his meds as soon as they get here. It will take a couple of hours to run them all, then I may try to sleep for a little while.  Matthew is also here sleeping on an air mattress and we have a very sensitive video baby monitor trained on Noah, but I can't think of leaving his side right now.

I am so sad and scared.  I want Noah to have a wonderful Christmas here with us and this is breaking my heart.  Right now I don't think we will lose him before Christmas, but don't know if he will be in any shape to open gifts or celebrate.  This will almost certainly be his last Christmas and for him to be sick and suffering through it is nearly inconceivable - and I can't even consider the idea of his getting worse and not making it.

It's after midnight - it's Timothy's birthday.  Dr. B felt that it would be fine to go to the movie with Timothy with 2 nurses here (1 is his regular nurse who was here tonight plus a NICU nurse), but I feel so torn.  I imagine that by the time I need to make a decision, Noah will be more stable or worse and the decision will be made easier.  I've missed so many birthday celebrations with the children and no matter how understanding they are, it makes me sad.

I don't suppose I even need to ask you all to pray.

Blessings,
Kate