Liam Update

Alot has been going on. I had a huge blog with pics ready to post when I accidentally erased the whole thing.

Heres the short version yesterdays events:
When the docs came in I asked for him to be taken off oral steriods. They decided to bring down the pulmanologist and see what he said.

Liam started showing signs of respitory distress. He even sounded crackly. We called the pedi-surg on duty and the past the ball to RT. RT came in and listened. She gave an albuterol treatment. After the albuterol he sounded worse, like velcro on top of the crackly. She informed pedi-surg and now he gets albuterol every 4 hours, just like at home.

The best part of the day was our visit from Jen Walker and lulu. Liam and lulu were roomies in the icn. Lulu was born a week after Liam, we share a birthday. It was so wonderful to finnaly get to see them and be able to hold lulu and see how well shes doing now. We havent seen them since UCSF ICN days. When I saw them walk out of the elevator I was flooded with emotion. My spirits were lifted when I held lulu. Its so amazing how well shes doing and almost impossible to believe that she had to have heart surgery at just days old. A special thank you to them for comming all the way back to UCSF and visiting us. I will have pictures as soon as I can upload my camera.

While administering Liams biotin into his g-port it got plugged. We tried warm water, coke (soda), something carbinate, and 2 hours later it was still clogged. We had called pedi-surg and everything to let them know. Finnaly at 2:30am the nurse was able to get it unclogged. That was 5 and a half hours clogged and alot of meds missed.

Today has been a similar day. Liam has been cranky and sleepy. His lungs have been crackly off and on.

Pulmonology came down to see Liam. The conversation stressed me out massively. The pulmanologist thought from Liams pattern that it was an airway issue. He ordered that yhe steroids be stopped and theyre going to do a bronchioscope tomarrow or tuesday. He is looking for palips, hemangeomas, or cists. He said there are a few options if any of those are present. He talked about a betta blocker, having EMTs either drain or laser off and a trach. When the word trach was said, my heart stopped. That one word is what caused all my stress. I know we were just talking possibilities but if someone came at you saying trach, I dont think youd smile and be ok with it.

After the visit from pulmonology I just had to get out. I took a walk and tried to relax. I had to remind myself that this was all what ifs and ideas. Its all in Gods hands and I need to leave it there and pray. I need to pray for the right thing for Liam and not for what I want to happen. I have no idea whats best for Liam right now. I know I did the right thing getting him here and asking them to stop the oral steriods. I know im doing the right thing by sticking to my guns and following my gut instinct.