911, ER, PICU Day 1

There are no words to express last night. Yesterday started off just like any day, we all went where we needed to be. According to our day nurse it was a rough day, extra treatments, suctioning a little bit more then normal as well as on and off of oxygen due to decreases saturation levels. She pulled him thru and when she left at the end of her shift we hoped he was over whatever was going on. The night continued and Ian was good, was off oxygen, ate dinner. Nana, Pop, Josh and Devin came to visit after dinner. I went to my Girl Scout meeting, all was good when I left the house. 

Around 9pm, I got a text from Brian that I needed to come home. So home I went, not really sure what was going on. When I got home, Brian was doing Ian's nightly treatments. Ian was working a little harder to breath, I honestly can't remember of he was on oxygen at that point. Everything we were seeing we have seen before and worked thru with no problems. We continued to do his treatments (vest, cough assist and suctioning). Made it thru them all and move onto the next step of giving his nightly medicines. Again, pretty much all good, Ian was still working a little harder. Finished everything up and started getting some things together for the next day.  Ian did his clucking to get my attention, he needed to be suctioned. So I started, got nothing, he said there was something there, his numbers started to drop, down they went. At this point he was on oxygen but we turned it up to 5 liters. Pulled out the ambu bags to see if we could help break things up, we didn't break anything up because there was nothing to break up, however when we were bagging him up went his saturation levels. As soon as we would stop bagging him, down the went, they were steadily declining into the 80's and 70's. This is not a place you want to be. Brian went across the street to get our wonderful personal respiratory therapists (he is not really our personal one but having Mr. Mark live across the street and be a respiratory therapist is a huge plus in our book). Mr. Mark assessed Ian, tried all his tricks, which we had done already...listened to Ian and didn't hear good things. At this point it is around 9:45, and in walks Ian's night nurse hearing me ask Ian if he wants me to call 911 to take him to the hospital. Ian said no which did not surprise me, I told him we would see what we could do to manage him at home. I had already been in contact with his Gilchrist nurse. We walked thru everything with her and she was getting in touch with Dr. Hutton, Gilchrist MD. Thru all of this Ian was still struggling for breaths while on 10 liters of oxygen. His numbers were just above 90, none of this was good. I told Ian we had no choice but had to call 911, managing him at home was just not going to happen. 911 was called, while I was on the phone with them Mr. Mark and our nurse were working on Ian and trying to keep him calm...Brian, Becca and I...well...Brian was somewhere breaking down. Becca was in her room with the door closed (my guess is trying to pretend this was not happening) and I was trying to hold it together while on the phone with 911 giving them the information they needed. 

It seemed like an eternity waiting for the emergency team to get here. I went into mommy mode...Becca's mommy...needed to figure out who was going to come stay with her...thank you to our wonderful neighbor, who put her personal loss aside and came over to sit in Becca's room with her and Joey while the paramedics were working on Ian and getting everything ready to transport him. Thank you to Mackenzie and Erika for coming to sleep here with Becca so both Brian and I could go to the hospital. I went into talk to Becca to make sure she was okay...as soon as I told her we called 911, she started to cry, pulled herself together and said ok, I understand. Have to love my girl. Mommy mode was over...well Becca's mommy...she was taken care of. 

Now time to have my breakdown....paramedics were here working on Ian. The nurse was helping giving them information and trying to help me collect myself...the paramedics asked me to go get Ian's protable vent ready for him so once they got him downstairs they could get him on it and out the door...I did this while stamping my feet and yelling....I HATE THIS FUCKING DISEASE...I HATE THIS FUCKING DISEASE. Tantrum was over...vent was together...Brian was getting meds and other things together which needed to come with us...I have not idea what time it is at this point...it seems like this whole process took hours, I know it did not. From the time it took to get Ian downstairs, out of the house and into the ambulance, his saturation levels we down to 71, his lips and skin around his mouth were ash and blue...not something you want to see on your child. I rode in the ambulance with Ian and Brian followed in the car...I have not idea how long the drive was to Hopkins, well actually I do from driving it so much but it felt much longer then normal. The paramedics were wonderful, keeping me calm, Ian fell asleep on the ride which was good because sleep for the rest of the night was hard to come by. 

In the ER, they got him stable, took x-rays, did blood cultures, did a trache culture, all the usual stuff. Nana, Pop, Aunt Susan and her friend Ester came down and we all rotated being in the room with Ian. Once Ian was stable, I would say some where around 1AM, they had all left and it was just Brian and I there with Ian. We tried to get a little bit of sleep while we waiting for the doctors to come in and let us know what the plan was...finally they came in to let us know they were admitting him up to the PICU (good thing because if you thought we were taking him home you were wrong, as Brian has said this is not our first rodeo). Now it was time to wait for a bed to be ready and for the PICU team to be ready for him....well that did take forever. We did not get to a room until 4AM...now it was time for everyone there to start gathering their information, poking and prodding Ian some more, and he had been sleeping. I think everyone finally left the room for us to try to get some sleep around 5AM. 

When I posted this status update on Facebook last night, we were not even into thinking we needed to call 911, nor was Ian really having major issue..yet...Rough day/night and nope we don't always do it so gracefully. I posted it because it was just a rough day and I wanted to say we don't always handle it well and aren't always strong.

The 1st x-rays came back with a spot, which they were not able to tell exactly what it was so they sent him to radiology for another one to try to determine if the spot is a plug, pneumonia or collapse. The 2nd x-ray showed things clearer but still they were still unsure if a plug or pneumonia. Ian's white blood cell count was elevated so they are thinking pneumonia, however Ian is not running a temperature...well Ian never runs a temperature. They started him on antibiotics. He was on and off of oxygen today and when I left the hospital tonight he was on 40% oxygen.They are keeping a close eye on him as things could get worse before they get better. His vent settings were increased, with the plan to be able to decrease him back down to his baseline. He has been sleeping on and off all day.

I am home with Becca tonight, hoping to get some sleep and hoping that Brian and Ian will get sleep as well, especially since Ian has been sleeping on and off most of the day.

Sorry for the in depth post....I needed to be able to put it all into words...

Sleep well boys...your girls will sleep well here.