William “Bud” Hollis Muse, Partial Trisomy 13 and 17, 1/20/1993 – 4/4/2015, Santa Cruz, CA
I wish to continue celebrating Bud’s Birthday.
April 4, 2015
This morning when we woke up Bud’s tummy was distended (swollen). I was sure the JTube had dislodged from where it was down in intestines. I got ahold of Dr and she wanted me to take him to Urgent Care so we could get an Xray and coordinate getting JTube reinserted from there. This is something we have dealt with several times before but had never had his tummy swell because there was always a place for the air or fomula to vent. We got to Urgent Care and they got us right in and sent us down for Xray. Bud was still quite alert and active. He even sat himself up to help positioning while getting Xray. We got done with Xray and headed back up elevator to Urgent Care. As soon as we got to Urgent Care I let the front desk know we were back so they could get us right back in. Jerromey and I waited in hall with Bud for them to get us back in to room. I was talking to him and telling him I love him and mommama was working on getting his tummy fixed. I was getting concerned that he wasn’t looking well and again told the lady at the front desk that we were supposed to be taken right back and i was not liking how he was looking and really felt we needed to have him on a monitor. She kind of acted frustrated but got up and went back. I kept talking to him and rubbing his face, but, something just didn’t seem right. I went back to desk and again said i really feel like something was wrong and needed to get him on a monitor so i could see what was going on. She then picked up the phone as i went back to Bud and continued talking to him and again saying mommama was working on getting it fixed and i rubbed his eyebrows saying i love you. I then saw a look on his face as if he was starting to lose consciousness. I ran and told the lady at the front desk again and said he was looking like he was trying to lose consciousness and we need to get him on a monitor NOW!! One of the nurses came and opened the door and as we were taking took him in I heard someone say he is starting to turn blue and the Doctor and nurses and I got him out of his wheelchair and onto the exam table to start CPR and suctioning and on monitor. It seems like forever that we were working on him then EMT’s got there and took over CPR. I was continuing to suction and talk to him and holding his hand and rubbing him. The stupid defibrillator from the first time they attached it to him said “Shock not recommended!”, I wanted them to anyway. We still kept going. I asked them for an emergency tube to try to open airway better than his trach. They got it and got it inserted and still cotinued working on him and still I was telling “I know you are still here baby and momma is trying to make it better” and asking God please, as I was again suctioning and rubbing his arms and legs and holding his hands. At one point the EMT said “momma, we will keep working as long as you want but there are no signs that he is still here.” We were just getting Flatline and the defibrillator just kept saying “shock not recommended” so they wouldn’t do it, I wanted them to anyway. I finally realized he was gone. They called it at 0933. I picked him up to the edge of the table and held him sobbing and saying baby please come back I need you and still talking to the Lord for him to intercede. I held him until I couldn’t hold him anymore and didn’t want to let go but asked them to help me put him back in his wheelchair. I covered him back up with his Snuggie like I always do to keep him warm. He was getting cold and they kept bringing me warm blankets also. I put his chapstick on his lips so they wouldn’t dry out. I still kept talking to him and rubbing his eyebrows. Friends, relatives and even two of his doctors came to the Urgent Care. I kept talking to my baby boy and hugging him and holding his hand and looking at him. He looked as if any minute he would just wake up. I wanted him to wake up. I just couldn’t believe this could be real. He just could not be gone. How could i still be breathing!! I just wanted him to open his eyes.
Evidentally a shooting had happened across town the night before so nobody could come to get him. We waited and waited, but, i was not leaving. They finally came around 330 in the afternoon.