Sunday, April 24, 2011

Unplanned 3-Night Hospital Trip but Home in Time for Easter

Well, Mason's oversensitivity after tube surgery just kept getting least the retching part, and got to the point we realized it couldn't just be ear tubes. He seemed sick, nauseous, a little feverish, and seemed like more than "just reflux" to us (usually with that he is full of hiccups, watery eyes, coughs, etc). It wasn't like that. It was like, green around the gills type, very sick to your stomach retching. He just looked miserable. We wondered if he'd gotten a tummy bug...but this was 9 days out? How could it still be that? Then his G-tube leaked and we changed it to a new one which promptly burst the next day so we had to get a backup from the hospital. When he had a seizure Thursday morning and started crying inconsolably after his afternoon feed Thursday, we knew something was off. We didn't know what because his ears theoretically should be fine...there was no infection at the time of his tubes, and no drainage from them all week. Still it seemed like the nausea/fever/seizure symptoms were red flags that SOMETHING infectious wise was wrong. I called Nursery Follow-Up at the hospital and asked where we should start, since we didn't know what doc should see him or what system might be infected...GI had already offered reflux meds and they weren't helping yet. Probably wasn't ears. Pediatrician routinely just refers us to the hospital. So she talked to his neurologist and said to bring him to ER and they'd run some tests; if no infection was found, their department would increase his seizure meds since he had not had an increase in several months (in fact we're tapering down by not increasing for weight changes).

At the ER, they did more x-rays (poor guy is probably glowing by now) of his chest, GI system and mickey tube placement, blood tests, and urine check. The urine check came back positive for white blood cells. Mason was born with a kidney problem that makes him supposedly more prone to UTIs and was on preventive antibiotics for it but a while back they took him off after good results on a kidney reflux test. The ER doc assumed this was Mason's problem and needed to be admitted for antibiotics until he could better tolerate his feeds. They also had to wait 24-48 hrs to get the results of the more lengthy urine culture to see what grew and how fast. The other docs he saw in the hospital thought it was unlikely that he had a UTI based on the low number of cells in the first sample, but Brian and I were pretty convinced it was the problem based on the low fever and vomiting. The culture did end up growing 3 different strains of bacteria and one in particular they think was causing most of the problems, so they switched his antibiotic for that. He also changed from Pepcid to Prevacid in case reflux was contributing. He got to come home about mid day today (Easter) :D
Happy to be home, enjoying some Easter goodies :D
 He's about the same I guess, maybe a little better. Still retching some, and very crampy from his antibiotics in spite of giving probiotics too. It is manageable though. Just praying it does the trick and his system gets over all this yuck soon. They have ordered a kidney ultrasound for him and he would've gotten it today; however it is Easter so we have to go back for that after our genetics appointment in about a week.

His thyroid test (which I have begged for since he was born but was always denied because "it isn't really possible to have a thyroid problem as a baby if it wasn't caught on the newborn screen) ...also came back abnormal like we have suspected ever since he first couldn't gain weight then started gaining like a crazy man. They are in such disbelief about this high TSH that they want to repeat the test in a month to make sure it is for real/consistent before they treat it. Sigh. Pray for my patience and Mason's health as we play the waiting game again. Pray that he isn't being impacted negatively by this, as a thyroid problem as a baby is nothing to mess around itself it can cause hypotonia, developmental delay, weakness, etc (he has all this but how much is related to his thyroid and how much to his brain malformation is the million dollar question).

In the meantime we are celebrating this very special day and remembering one of my favorite songs ever..."this child can face uncertain days because HE LIVES!"

Mason's Mix

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