A not so Happy 4th of July

So Sean is still inpatient at Duke and today he spiked a fever and has an ear infection. I thought a couple days ago that he was getting one because he tugged on his ear all day but they didn't believe me. Same ear even, looks like momma was right again. The doc really wanted to give him an oral antibiotic but I steadfastly refused (thank god Scott called me) because I don't want Sean's GI tract messed up for days maybe even weeks. They ended up giving him two shots of Rocephin after much debate I got my way. They refused to give him Tylenol but the fever did come down on its own this afternoon. They forgot that the hematologist said to draw an ANC anytime Sean runs a fever over 100.5 so I had to call to make sure that was done. Sean gained an ounce he is up to 7.645 kg today. The fact that it is only an ounce concerns me. He is sitting in a crib all day is he going to be able to gain once we get home and he is more active? I think the 34oz a day is to much as evidenced by the ear infection. Ear infections can be caused by uncontrolled reflux but since they refuse to do the pH probe how do we know if his reflux is controlled or not.
I decided today that if they tell me Tuesday morning he can't come home then I am going to call his pediatrician and see about getting him transfered to a hospital who works WITH the parents not against in the best interest of the child. This is getting ridiculous.


7.3 Duke cont'd

So Scott is up with Sean at Duke and already they are trying to be a PITA while I'm not there. Sean does NOT do well with a Prilosec compound he reacts to it. So ALL WEEK we have been giving him his home Prilosec powder packets and they supposedly keep telling the pharmacy to quit sending up the compound since the patient can't use it (we better not be billed for it!) Anyways this morning they tried to insist that Scott HAD to use it and not the home supply. Idiots I tell you, WHEN will they start listening to the parents! So Scott insisted he get the home supply and he called me to confirm but he shouldn't have to do that. Yet Sean still doesn't have Benedryl or hydrocortizone cream for his HORRIBLE reactions on his skin. He BLISTERED and swelled from the EEG leads yet they give him NOTHING after me asking repeatedly, he got a bad red raised rash from the monitoring leads on his chest, he still had a prickly red rash from the urine bag they put on him two days ago to get urine the poor child NEEDED some cream he had way to much reactions going on. STILL NOTHING. The doc came by and wrote for VASELINE wth? Luckily it is clearing on its own with time but in the mean time the blisters have to be uncomfortable.
Weight 7.6kg
PO feeds 120ml 3x a day
Overnight feed 54ml/hr tonight (going up 2ml/hr each night)

7.2 What is the plan man

So last Friday Dr. Lin said there was a 50/50 chance Sean would still be in for the holiday weekend. Unfortunately the odds are against us. One GI said we may be out by Mon/Tues the other said a couple weeks. Who knows at this point.
So GI was in here trying to figure out how to swing 140 more mls every 24 hrs is tough. Looks like we will be in here a couple weeks. He gained .29 oz since Monday but it is a gain! The really wanted him weighed while they were here I had a sinking feeling it was too soon after he ate and it would be artifically high. I was proven correct when the weighed him right before his next bottle and he actually only gained .35 oz.
Weight 7.5 kg
PO Feeds 120 ml 3x a day
Overnight feeds 52ml/hr x 12 hours
Scott and I switched out tonight. Scott took the amtrack up from Charlotte and I drove down to Charlotte to work for the weekend.
I'm going to miss them this weekend, this is the longest I have been away from Sean ever (3 nights/2 days) but I guess I could see it as preparation for when I go to camp. Ashlynn is getting super excited about camp I think she said it was 19 days away in a text. Ashlynn has had an excellent week hanging out with my sister and her kids and my mom and dad, she also got to go to pottery camp so she isn't feeling too too left out lol. Scott's parents will be getting her tomorrow!

7.1 Still Duke

So the morning started off fantastic I interviewed with Bayada for a position in Raleigh (crosses fingers). While I was at my interview a very good friend from high school watched Sean. I had a couple people offer and I am so blessed to have so many friends and family that want to help us through this. Jackie did fantastic even though Sean of course gave her a run for her money lol. He gave her a super stinky poop to change, then pulled out his NG tube, showed her how well his lungs worked and I'm sure much more. But she was still smiling and not on the floor when I came back! Thank you Jackie for allowing me to go, it was very important for our family and wouldn't have been possible without you!
Weight- Unable to obtain due to leads
PO feeds 120 ml 3x day
Overnight feed 50ml x 12 hrs. Sean was VERY restless for this but we aren't sure if it was the leads and all the wires or the formula so only the next night will be able to tell if off the EEG.

6.30 Inconsiderate staff

When you work night shift on a pediatric unit please remember you are not a cheerleader at a football game there might just be sleeping sick children who really need their sleep. So the nurse, the CNA and the respiratory therapist all couldn't figure out how to whisper and not turn on bright lights last night. I mentionned it to social work today and apparently they said something because the CNA (not even the offending one) has already made two snarky comments. The nurse lied to the docs and said I shut off the feed last night which is not true. Then the nurse today lied to the docs stating I refused to feed my child. When in actuality he was NAPPING and I just delayed his feed by 45 minutes because I will NOT wake a sleeping child. A child who already has a hard time sleeping geez.
Also another very interesting fact- the fact that my son's pupils aren't equal wasn't recognized until last night. Why did three nurses miss this you ask? interesting question. None of the docs questioned this either. Wonder how many of them documented PEARL (Pupils equal and reactive to light) because they are most definitely not equal.
Neuro came by ordered a bunch of blood work and an EEG. They recognize his assymetry but hope it corrects with therapy they believe it was due to something during my pregnancy either the flu or the HE/PIH. Sean got hooked up to an EKG (twice due to miscommunication), and a 48 hr EEG. The EKG showed the sinus arrythmia and bradycardia they said it is insignificant at this point. Bad thing is it is video and audio taped so on more walks in the hall or visits to the playroom:( We also can't weigh him because of the head leads.
SCORE! Super Mini backpack to the rescue I knew there was a reason I brought it lol, it is now holding the huge EEG recorder thingy so he is mobile in his crib at least! Yeah for feeding tube supplies being multi purposed!
Weight - unable to obtain
PO feeds 120ml 3x day
Overnight 50ml x 12 hrs (they tried to change this but no doctor spoke with me and I refused to let them change it without discussing it with me. Last I heard from the dietician was that we would try 26cal not up his feeds.)

6.29 More Duke

"Cuz I'm the mom and I said so" is my new catch phrase not only to my own children but to all the idiots with superiority complexes also.
Duke has an agenda they are not sharing it with me and they don't include me in Sean's plan of care, drastically different from Levine.
Weight 7.34 kg
PO Bottles 120ml three times a day
Overnight feed 50ml/hr x 10 hrs

6.28 Off to a rough start

It took over an hour to get a nurse overnight when Sean is crying and in pain. Then he had two more episodes of pain and they didn't want to do anything for him, unless he was unconsolable for hours.