We failed to meet our whimsical goal of not being in the hospital for 7 days. For the third Friday in a row, we are on the cardiac floor at Children’s. The first week was for CHF, the second was a UTI and we are back because home health really didn't like his breathing. She was pushing us to go in by ambulance, but thankfully cardiology thought that was not needed. It felt a little excessive to me. His breaths were between 70 and 100 (70 when he was cuddled up and sleepy, closer to 100 just after he finished eating. His O2 is currently sitting around 95%-96% and occasionally dropping into the 80s.
They had us come in through the ER. We got in much faster this time. I still need to be a bit more of a squeaky wheel, but its better. They wanted X-Rays and this tech did chest X-rays by dangling him by his arms in front of the X-ray machine. The Cardiology floor team now recognizes our names. So the resident we usually had ran down to check us out...
Then, they decided they want an IV for Lasix. Getting the line in was HORRIBLE. They had called someone down from surgery to put it in because they expected it to be very hard. In the end, 2 nurses and 3 doctors were trying. The third doctor in the room was the one who eventually got it. Actually she stuck him twice and she got blood out the first stick, but then his vein blew, so she had to switch to the head. She only had the option of the vein they used last week or the head... by the time she got in, everything else had been tried already. She was actually awesome.. she was the attending who saw us early on in the ER visit. She was on the way out the door for the day and saw me standing crying by the nurse’s station. She asked what was up and when I told her she said she had some IV juju so she'd go try. She tossed her stuff on a cart and went in...
When all was said and done, he had been stuck 8 times, he blew veins at least twice, his little hand was covered in blood on the third stick and they had tried all the viable veins in his hands and feet and couldn't get it. I couldn't stay in the room after the third stick; I lost it a little bit... I wanted to stop it after the third, but what the heck else could they do? What do I ask for next time to prevent this?
I really wasn't that stressed over his breathing rate though home health got me there when she said he could just get too tired and stop all together. That freaked me out. When I finally got in and the cardiology attending checked him out (after apologizing for the whole ER thing... everyone was really upset about how the IV thing ended up) she asked why we were back in. I explained that yesterday my pediatrician was kind of concerned by his breathing rate, my mother in law (a respiratory therapist) was kind of concerned, I started counting respirations late last night after a feeding and then home health expressed serious reservations about his condition.
I told her I wasn't panicked but home health was. She asked if I was really concerned by his breathing and I told her I honestly wasn't freaking out over it, he breathes fast, he retracts a bit at the throat and belly, that's just how he is. The retractions were slightly more pronounced and enough people had expressed concern and I was feeling enough concern that he should be checked out, but it honestly didn't feel like an emergency. Originally I had planned to call his cardiologist and have them squeeze me in to be looked at. It just didn't work out that way.
My understanding of what is happening is that this is less about fluid and heart failure at this point and more about his defect directly. The VSD and ASD are so large that he's basically pushing mixed blood in all directions. Which means he has to push a lot more blood to keep his O2 as high as it is.
Someone started making NG tube noises last visit, which I thought way, WAY jumping the gun. Nothing suggests he is aspirating his feeds, it really seems like we could fortify his BM if he needs more calories before we go all the way to NG tube. I'm already exclusively pumping so he has less work to do to eat...
To top everything off, he went almost 6 hours without a wet diaper after all that with the IV. I was so worried. On Tuesday we are scheduled for testing to see if he has renal reflux so the kidney thing has me nervous too. He finally started peeing and pooping about 1am… He had two good diapers while we were still in the ER, he peed on the scale when we got to the floor then nothing from about 7 to about 2am.
I’m exhausted and emotionally weary. I’ve been crying on and off all day and I feel like I might be reaching a limit here.