24 hours

Well, it's been a little over 24 hours since Dylan was (finally) admitted at the hospital and I just wanted to drop a quick update.

The first night was a rough night. They started him on fluids, which is like, protocol 1 for kids with POTS, and after we got settled they sent an aide in to do his vitals.  He was fine with his laying down and sitting vitals but when we stood him up he nearly fainted. At first the automatic cuff wouldn't even register his blood pressure, and his heart rate went up to the 140s, and the thing that surprised me was that his sats dropped to the low 80s. He was breathing heavily and before he actually hit the floor we sat him down and called the nurse in. After he sat for a few minutes we redid the standing vitals and it happened again, his sats dropped, this time into the 70s.

Now I have no idea why his sats are dropping, and no one has given me any ideas yet, but it is charted and is something we are watching. We aren't sure if this is a capture problem or an actual saturation problem yet, but suspect there is some kind of perfusion issue.

Sometime in the night he woke up in pain, his arm swollen because his IV had infiltrated so we had to deal with that and get another IV put in. He is NOT a fan of needles, but thankfully his nurse knew who to call, and that person got it first shot. (I remember calling the nurse in the night bc his IV was infiltrated, and I remember her walking in the door, but everything after that is a bit hazy lol)

Of course this morning he woke up feeling much better after they pumped him full of fluids over night. We were able to go to the rec room and play Rock Band on the XBOX for about 30 minutes, but then he came back and took a 3 hour nap. He said when he woke up that he was starting to feel bad again. I was hoping the fluids would last a little longer, but we'll see in the morning, I  guess.

For now the plan is to adjust some of the meds that he is already on and see how it affects him. It's a slow process, but I've got nothing but time. This kid needs his life back and I have made it ABUNDANTLY clear that we aren't here for a band aid. We will also be running some more blood work in the morning. We are on the general peds floor, but thankfully our amazing cardiologist is talking with the pediatricians frequently because he is making sure things get done.

I'll update more when there is more to update. Or if I'm ready to pull my hair out!