And another hospital visit...

Last Thursday night around 11 pm, Lily woke up coughing and coughing again.  I gave her a neb, but it really didn't help.  After waiting a bit, I decided to give her another neb, and try some CPT's (chest physiotherapy....basically pounding on your chest with a little rubber cup thingy...they use it with cystic fibrosis patients to help break up the mucus so it's easier to cough up).  Still didn't really seem to help.  Her cough was so harsh and unproductive.  Her sats kept dipping until she was on 5L of oxygen, and not keeping her oxygen sats above 90%.  I woke Mark up (he was in the other room with Leah because Lily was in our bed with me), and told him we needed to call the ambulance. (We also brought her downstairs and put on the non-rebreather mask, so she was on 8-9L of O2 total, which stabilized her until the ambulance got here).    

By the time the ambulance got here it was midnight. (Worst ambulance trip ever, but I won't go into that.)  It took awhile to get settled into the ER (5 pokes to get an IV in....it WAS in TWICE, but one time I'm pretty sure either the nurse or the EMT helping infiltrated it because they were messing around trying to change the tape and clean the area after they let Lily bleed all over herself....I almost refused to let them try anymore, but I really wanted her to get in a dose of solu-medrol - IV steroids, and the 5th time was the charm, thank GOD).  They did 3 nebs 30 minutes apart, and the nurse was running in saline nebs the rest of the time.  We were able to maintain Lily's sats with 15 L of O2 on a non-rebreather mask.  The doctor said the chest x-ray was unchanged from 2 weeks ago, still pneumonia/fluid in the left lung and areas of atelectasis or partial collapse.

We moved up to the floor, and when we switched Lily over to the MR-850 (heated, humidified O2 that can be bled in at a higher flow through a nasal cannula), her sats dipped into the 70's.  They increased the flow to 12L and 100% O2, so we were basically maxing out on the oxygen we could give her.  Her respiratory rate was in the 80's and 90's, and she was retracting all over, so the nurse called a Rapid Response.  Within a minute we had 2 RT's and a PICU nurse in the room talking about what to do.  It was decided that continuous nebs might be helpful, as it really did the trick last time.  However the intensivist came up to see Lily (this particular one doesn't normally see pulmonary patients), and he felt that her lung sounds were pretty clear.  He said she didn't need continuous nebs.  I explained that she was sleeping, and once she woke up and started in with the coughing and crying, we'd have to work that much harder to catch up again.  He still felt that everything was upper airway, and she just needed to cough it out.  I wasn't very happy with his assessment, but I decided to wait until the other docs came in to relieve the night shift before I said anything else.  

Lily and I slept for about an hour and a half before the pulmonologist came in.  She ordered a chest x-ray, which came back showing even more fluid in the left lung (about 2/3 of her left lung was full of fluid).  She sent us down to the PICU to see whether or not we needed to consider CPAP or BiPAP (CPAP is continuous positive airway pressure...it can be delivered through a mask and is used for patients with sleep apnea, as it helps stint the airway open.  BiPAP will also give you breaths, like a ventilator).  

When we got down to PICU, the intensivist said to me, "She's here because we need to decide whether or not we need to intubate her." (Place a tube through her mouth into her airway to help her breathe) I nearly freaked out at that!  I kind of had to make myself not think about it so I could focus.  He said he wanted to observe her for a bit to see what we needed to do.  Meanwhile he ordered 3 nebs 30 minutes apart - epi, xoponex, and epi.  Epi is short for epinephrine or adrenaline.  It's very effective with kids who have tracheomalacia (floppy cartilage in their airway) because it kind of opens things up and makes the airway rigid.

The epi nebs made an immediate difference.  I noticed that her cough was a bit more effective.  We also started doing some really aggressive CPT's or "vibes" with a special vibrator and something I think they called "tussive squeezes" (not sure if that is the correct name, but basically they squeeze/shake over the lung fields to kind of break up the mucus so it can be coughed up).  All of these treatments were extremely effective, and we didn't end up needing to intubate.  

By Saturday, Lily was asking for crayons.  She colored for 10 hours on Saturday and again on Sunday.  They transferred us to a regular med surg floor on Sunday afternoon, and we went home yesterday afternoon.  (I should say that from Saturday through Tuesday around noon-ish, Lily colored, drew or painted for about 34 hours!  NO exaggeration there!  You should see the stack of artwork I came home with!) 

Lily is still on some O2 (1-3L).  She's on oral steroids for the next 10 days and antibiotics for the next 7 days, but she's doing better.  I'm also doing nebs every 4-6 hours and BDs/CPTs when she's awake.  It's nice to be home though!  Now, we just have to hope and pray she can get over this and give her lungs a chance to heal.  

I'll try to post pics again at some point, but I haven't had much to take pics of lately!