On Monday of last week I noticed Tomas' mick-key button (for the feeding tube) was loose on his stomach and not fitting right. I checked the balloon that holds it in place and it had only 1ml of water (should have 5).
By Tuesday morning I would have to fill it before each feed so the weight of the extension set would not bend the button to far. But after about 3 hours it was back down to 1ml.
So I called the doctor and the nurse called me back at 4pm (argh - you all know where this is going) and said to take him to the ER. I asked if I could just take it out at home and put a G in since I haven't used the J part in 6 weeks. She said no because if something went wrong I would have no help.
Ok fine, I go to the ER, and ask them to take the tube out and put in a G. But they won't without speaking to the doctor first. Fine, the ER doc calls the GI (who is NOT associated with the children's hosp) and guess what? He is OUT OF TOWN for the night. The doc covering for him does not know Tomas' history and so everyone (except me) agrees that they should just put in what they are taking out. Which means a GJ.
Of course the radiologist has gone home (it was about 7 by then) so he can't do it until the morning. Ok, whatever, we'll go home and come back in the morning. NOT SO says the doc. The tube has been "compromised" and is not safe to feed through and since he has fasting hypoglycemia they need to keep him and run him on IV fluids through the night.
If I take him home it would be AMA, which my husband still wanted me to do. But I was afraid if I did that CPS would be at my door in the morning.
But wait it gets better. So the doc makes me stay and insists he be admitted for the night but the hospital is FULL. So we get to spend the night in the ER exam room. It is quite nice as far as ER rooms go but there is a bed, not a crib, with side rails that have slats wide enough for me to slide through much less a 20lb baby, and it has a chair. Not a chair that turns into a bed or even a rocker/recliner, but just a chair. So we spent the night with Tomas in the bed with 100 (exaggeration) blankets and pillows bumped up against the rails to keep him on the bed and me with the chair pushed up against the bed and my arm through the slat resting on him to "feel" where he was.
Around 3am the staff brought me a more comfy rocker and I did fall asleep from around 5-8 in the morning. His procedure was done at 10 and we were out by noon.
At 2pm that day Tomas had his annual ECI evaluation I've never had one before and it is quite something when all the therapists show up at the same time. I was exhausted and sick but it went very well. He is 18 months old and "scored" 7 months for physical and 10 months for cognitive/emotional. The numbers are nice to have but really they don't mean much. He is making forward progress and I am content with the amount/duration of therapy he gets and don't intend to push things to help him catch up. That is just not my way. It did drive home my "forever baby" feeling though. His infancy is not the fleeting, snapshots in time, breathing in the scent of their skin kind that I had with my girls. His infancy is the languid, lazy, winding path, breathing in the scent of his skin kind.
That night at the hospital I started running a temp and ended up with a UTI and kidney infection. Fevers and nausea for 3 days while the antibiotics did their thing and by Friday morning I was feeling somewhat better.
But that is when Olivia decided to start wheezing. She had been coughing and had the same cold that brought Tomas bronchitis the week before. Just a sidebar here but what is it with summer colds this year? So, off to the pulmonologist with her and SHE has bronchitis and is wheezing and her lung function is down by 50%. Great. More antibiotics (remember the pharmacists know me?) and more nebulizer treatments and hopefully we can kick it in the butt before it turns into pneumonia. The doctor wants to get to the bottom of why her lungs are so susceptible, which will mean more testing sometime down the road. Maybe I can piggyback onto some of Tomas' tests, hah!
The weekend brought a new rash for Tomas. I did not take him to the doctor yesterday because he is not running a temp and he has a Hem/Onc follow up on Thursday anyway. It really can drive a person (mainly me)crazy, though.