June 21, 1990 – Thursday

Eli was sick to his stomach early this morning and then he fell back to sleep. After his morning cares, Eli drank four ounces of apple juice and kept it down. Eli’s morning ANC was 66, Platelets 152,000, and HGB was 9.4. I took Eli to the eye clinic, and he could now see twenty feet with his left eye and five feet with his right eye which was encouraging.

Dr. Landon stopped by to see Eli and said he was stable, but that there was yeast found in his stool samples.  That was a downer.

At 12:30 PM Henry showed up and I left for a while. Then at 1 PM a meeting commenced. Present in person or by speaker phone were Lucy Stone and Frida Bales of EU Social Services, Zoe Penson of SRS in Durango, Henry’s lawyer in Silverthorne, Dr. Harmon from EU, Henry and myself. It was decided that we had to come up with a plan together that would work for Eli’s going home and that both parents needed to work with the provider of medical equipment, meaning that Henry must attempt to learn an IV pump and Eli’s cares.  I initiated the phone calls to start the process of Eli going, home even though Henry said he would, but he never did.

Eli received his Vincristine chemo IV push while we were all in the meeting.  Total Pharmaceutical Care arrived about 4 PM to arrange for new IV pump training and they would call in the morning.

In the afternoon, Eli broke out in hives and for this he received IV Benadryl.  I wondered if Eli was allergic to Vincristine.  I prayed he was not as that was one chemo medication he certainly needed.

Eli and Noah got to speak with each other around dinner time, and the smile on Eli’s face was such an illumination to my weakened heart.

Henry called from the Ronald McDonald House and yelled at me, saying, I would rather see the SRS place our boys into foster care than go home with you.  That bastard cared not one bit about Noah or Eli, and I loathed him.

When Hannah called in the late evening, I spoke to Noah on the phone and I also informed Hannah of what Henry said about foster care. I cried with what that man was trying to do. How could one man be so cruel to his children?  My heart broke with things looking hopeless.  My faith was receding again, and I cried myself to sleep.

June 13, 1990 – Wednesday

I was up at 6 AM and both Eli and I had our usual morning routines. During Eli’s bath, I found a yeast infection in his groin. Worse, I found open areas, two of them, of his coccyx.  These were both Stage II bedsores and preventable. Henry didn’t have Eli sleep on his side, just his back, and if his bed was raised Henry didn’t get the fact of shearing force on the skin caused bedsores, or he didn’t care. When I was not here the nurses weren’t doing their jobs, either, in preventing bedsores. I was rather ticked off about this as they knew Eli was susceptible to skin breakdown and infections. I had Eli’s nurse come in and see the yeast and the bedsores. Skin treatment orders for Eli’s coccyx were done and some nystatin was ordered for the yeast infection.

After looking at Eli’s labs I saw his ANC was 736, Platelets were 61,000 and his HGB was 8.1. Both Henry and Gavin arrived and they were just nit-picking everything.  I was not sure why they must be this way.  I knew, though, that I couldn’t let them know that Eli was going home or they would cause trouble and prevent that from happening. Everything was planned and set up perfectly. Arrangements were made through Dee Hardy for Eli to go home tomorrow.  I was ecstatic for Eli, and Eli was thrilled to say the least. He wore a big grin knowing he would go home tomorrow.

Dr. Landon came in at 5 PM and more arrangements were made for Eli to go home tomorrow. Then I found out that about one hour earlier Henry had heard about the plans for taking Eli home and all the arrangements that were made in Durango and Denver.  Henry took Gavin with him straight down to administration for yet another visit with them trying to cause enough trouble to prevent Eli from going home.  All I could do now was to wait and see what happened as far as going home with Eli.

Dr. Mason pushed in Eli’s IV Vincristine and we chatted some more on how Eli was doing.  Henry popped inside Eli’s room at about 8 PM and loudly stated that he was of the opinion that Eli wouldn’t be going home.

Upon hearing this, Eli cried.  I comforted Eli as much as I could as Henry had left right after voicing his opinion. That bastard intentionally hurt Eli by saying what he just said and then leaving.  He was such a cruel person.  I did not think Eli would go home now as I believed the social workers would see Henry as a threat to Eli and they would make him stay for safety reasons.

Hannah phoned close to 9 PM and I talked with her and Noah. Henry had left and Eli was asleep so I just crashed again as I felt worn out from all the struggles.

June 3, 1990 – Sunday

Right before noon, Eli’s name was announced on television on the Children’s Telethon with a $5 pledge, and Eli had part of the segment devoted to him. Eli was just tickled and loved seeing himself on the television. Eli was grinning and so was I to see him that happy to see himself on TV. We watched Spider Man using the VCR this afternoon and I had thought things were rather quiet for once. In the evening Henry phoned twice but not to speak with Eli. He just wanted to yell at me and to try and find out what I had planned down the road. I hung up on him twice. I was not sure if he wanted to know what I had told my lawyer lately, or if I had reported him to the SRS for not taking Noah to the doctor. I decided since I wasn’t sure what his problem was, I would just let him stew instead. After Eli had gone to sleep, Matt called me and we spoke for an hour or so, a more than perfect way to up the day even just a bit.