And Another Day Down

Update from Tuesday, May 12 and Wednesday, May 13 - I woke up yesterday morning to the resident walking into our room. She proudly announced "we're going to get you guys home today!" I looked at her in disbelief and said "no - you're not." I think she was shocked to hear me say that - but as I explained to her - we hadn't had CPR, we hadn't had car seat training, we hadn't had the follow up with pedi surgery about the g-tube, we hadn't seen Dr. Edmonds about Elle's nose or hearing, Elle hadn't had her hearing test, we hadn't seen Dr. Justino or his nurse regarding a study drug we agreed to put Elle on and we hadn't seen a discharge nurse yet. My reply got the ball rolling and by the time the resident was making rounds with the other doctors, she had already placed calls and put orders in to get everything taken care of for us to leave TCH. When the doctors were making their rounds yesterday I told Dr. Slesnick (the attending cardiologist) that I was concerned about Elle's breathing. She sounded horrible and congested and Dr. Slesnick agreed. She had also started to de-sat the day before in the evening. Her oxygen saturation levels (which are normally in the mid 80's) were continuously dipping into the high 60's and low 70's. This is of great concern because it could mean that the shunt they put in Elle's heart to help it function wasn't working properly. Dr. Slesnick ordered a chest x-ray, another echo cardiogram and also called Dr. Edmonds to get him back to see Elle before the end of the week. Elle has also decided that she hates her crib - she screamed every time I put her into it - so between the doctors constantly coming into our room and Elle screaming - I had a very tiring morning. Thank goodness my mom came around 2 to help. We took Elle for her chest x-ray in the afternoon - thankfully it came back clear. My mom and I spent the rest of the afternoon talking to random doctors and nurses that came in and playing with Elle. She definitely has a huge pacifier dependency!

The Power of the Paci

Today, I woke up to the transport team coming in and telling me that they were taking Elle down for her echo cardiogram. I asked if they could wait for me to brush my teeth and put on real people clothes and they said yes. I got dressed and walked out of the bathroom and found Dr. Edmonds looking through Elle's chart. Talk about timing!! Dr. E said he would come back later to discuss Elle - but later in Dr. E's world either means 10 minutes or 10 days. We took Elle down to the echo and about an hour later, we were back in our room. I got to see the BT shunt in Elle's heart which was pretty cool to see on the echo. When we got back to the room I got Elle dressed and ready to face the day. Since today will most likely be our last full day in Hotel TCH, I dressed Elle up in her brightest outfit. She is such a little ray of sunshine and I had to make sure her outfit matched her personality!! Elle had her hearing test this morning as well. The technician wheeled her computer into our room and put a sensor behind both of Elle's ears and then a sensor on her forehead. She put a little probe into Elle's left ear and then let the computer do it's job. I think that sound was emitted from the probe and then the sensors were reading Elle's brainwaves to see if her brain acknowledged the sound. She failed on both her right ear and her left ear. We had known from the CT that Elle had some form of hearing loss, but it really sucked to actually hear that she failed the hearing screen in both ears. When the tech left the room I started crying - just from the shear fact that I had actually heard those dreaded words said. I emailed Lee and told him the news. He asked if I was ok and I told him that I was upset - just because I was praying she would be a miracle child with deformed ear canals and perfect hearing. His reply was exactly the reply I needed - he said "she is a miracle child and she is perfect - just the way God wants her to be! And the best thing is...she's ours!" He's exactly right - she is our perfect little angel and we are so blessed to have her in our lives! At 1:30pm, Lee and I had car seat training. A physical therapist came into our room and went over the proper way to put Elle in her car seat. We then had to go down the car to be sure the base was in correctly. As we were waiting for the elevators to go down to the parking garage - Dr. E came flying out of the elevators - talk about timing again! I stayed with Dr. E while Lee went to the car with the therapist and the car seat. Dr. E put the scope down Elle's nose to check to be sure the holes he drilled are still open. Her right side has closed a bit and so has her left side but Dr. E feels that they should stay open with saline drops and suctioning with a bulb. He said he might have to put stents back in her nose - but he will make that call in a month when we follow up with him. Our talk then turned to her hearing. He had already told us that she has ear deformities. She will definitely need hearing aids and may possibly need a cochlear implant. I told him about the hearing test she had and he told me they did the wrong test on her. Since we already knew she had hearing loss - she was supposed to have a diagnostic test done. Since we are being discharged tomorrow, her hearing test will have to be done outpatient with an audiologist. AHH! Dr. Slesnick came by this afternoon and told us that her echo looked good. Awesome! Another thing checked off the list! We had CPR at 6:00 this evening. That was an eye opening experience - it really hit home that we may actually go home tomorrow! We're still waiting on a few loose ends - but hopefully we will be heading home tomorrow - we have the big stuff marked off the list and now it's just the little things that need to be taken care of. I can't believe this whole adventure might soon be over. It's hard to believe that we have been here for 7 1/2 weeks. How time flies!!