About a week prior to his passing, I noticed Kaleb was looking a little puffier than normal and in hind sight, we probably should have decreased his feedings then but, there isn't a "how to book" for Sandhoff's Disease and we all did the best that we could. We celebrated his birthday on Saturday the 22nd and he appeared to have a good day - he was awake and seemed comfortable, his startle reflex was definitely gone so there is no way of knowing if he could even hear us at that point. It was a great party and family and friends got to see him and spend time with him, which we are all thankful for.
It wasn't until Sunday night/Monday morning that things started to get a little worse. He had developed a rash or hives, again, we aren't sure and there's no way of knowing. He wasn't going to the bathroom by himself, we were having to stimulate his bladder to get it to release and we really couldn't do that until it was full, we were having to give more laxatives and other things in order to move his bowels. He had been oxygen dependant for almost a week and we watched him struggle to keep his saturation levels up while his pulse continued to be high. I knew we were nearing the end but he kept up the fight. He barely opened his eyes in the days that followed his actual birthday on Tuesday, and the swelling seemed to be getting worse. We slowed down and even withheld his feedings until he started taking medication to help draw away some of the fluid. I talked to him a lot and through many tears I told him it was okay to let go, he was struggling too much and I couldn't stand to watch him that way. I prayed to God every night before I went to bed to keep him comfortable and to please let us be with him when the time came.
The day prior to his passing our nurse had to place a folly catheter (complete with a bag) which was going to make moving him and holding him more difficult. Within the first two hours of the placement his bladder emptied about 200cc's of urine - a good sign....or so we thought. After that initial empty, nothing more came out that evening or by the time we got up the next morning - a very ominous sign. That night, Kaleb was not tolerating being on his left side. Every time we tried to change his position his O2 stats would plummet, again not a good sign.
Usually in the mornings, Dave would go out at 6am and relieve our nurse, that gave him quality Daddy/Kaleb time, time to cuddle. Because I was so worried I came out too. We couldn't hold him so we curled up on the bed around him, Dave cuddled his waist and legs and I wrapped myself around his head and I was stroking his hair, kissing him and telling him I loved him. He gave a couple of loud and unusual sighs, the kind that make you jump up to see if he's ok. We watched as his O2 stats again took a nose dive down into the 50 range. We gently tried to move him thinking his side may be hurting but again, his stats dropped. We moved him back to where he was and I noticed his arms and hands were looking purple and for a brief moment his stats came back up to the 80's. Dave had just come back from the other room and we were both standing/kneeling by his bed - he sighed that awful sigh again, his body stiffened and he was still purple - through my stream of tears I selfishly began begging God not to take him. I wrapped myself around him as best as I could and cried and kissed him and begged him not to go....then I remember the stiffness left his body and all I could hear was Dave saying "he's gone honey, he's gone - he's not suffering anymore". The time was 7:36 am, Wednesday October 3rd.
It was true, his still, lifeless little body laid there, his chest was not moving and he still had the oxygen on. Dave turned the oxygen concentrator off, removed the canula from his nose, had me sit in the chair and he gently placed my baby in my arms - he said "just hold him honey, hold him close to you" and I did. I sat in our chair for two hours holding and rocking the still body of my beautiful boy. I was truly happy and relieved for him but so very sad for us. I cried, stroked his hair, his soft little cheeks, I kissed his head, his nose, his lips and kept whispering I love you. I could feel my heart breaking into tiny little pieces as the reality of his death began to set in.
Somewhere within the next 15-20 minutes, his sister Jessica called and my heart broke again as I heard Dave tell her he was gone. Our next call was to Doug, our Hospice nurse - who arrived at our house around 8:30. I was still holding him and he said it was ok and I could take as much time as I needed, he just needed to listen to him and of course there was nothing to hear.
Another hour passed and the funeral home was on their way, I had to put him down and get dressed before everyone started coming. I placed him on his bed and asked Dave to stay with him until I got back. Doug and I gave him a sponge bath, put a clean diaper on him and covered him up. I stayed with him until the funeral home arrived, we wrapped his little body in a sheet and Dave carried him to the gurney where we said good-bye. Doug helped wheel him to the van and stayed until the doors were closed. Then I watched the van drive away with my baby inside of it.
I know with all of my heart that he is pain free and in a much better place, but each day that passes is another day without him to hold and I miss him more everyday! I love you my little man!!!!