1/1/08 – Sammy is hanging in there. His electrolytes are out of balance, so they are working hard on that. A recent ultrasound shows that the gall stones are moving around in his gall bladder, and that is a concern because one of the stones could be causing an obstruction of a bile duct. He will have an x-ray this afternoon to take a closer look at that.
The stress, lack of sleep, and dry hospital air have contributed to Steve and I both becoming ill. Steve was diagnosed with walking pneumonia and bronchitis, and I’m taking antibiotics for a sinus infection. Our family is just one big mess!
1/2/08 – The past two days haven’t been the best. Sammy has definitely been experiencing more pain which breaks our hearts. Even while asleep, his heart rate and respiration rate have been elevated. Last night, his respiration rate was running between 70-90 breaths per minute, and we believe that this was his body’s reaction to the pain of pancreatitis. With regular doses of Morphine and Tylenol, it seems that we have the pain managed better. X-rays are showing that Sammy might have an ileus or a partial obstruction of his bowel. As a result, all feeding to his intestines have been discontinued temporarily. For the next two days, he will be fed intravenously using TPN (total parenteral nutrition).
1/3/08 – Today was a better day. Sammy’s Lipase levels are lower, so his pain has lessened. Today is the first day that he has tolerated being held, so he did have some time spent outside of his bed cuddling with Daddy. He continues to receive his nutrition via TPN, but if all goes well, he may try Pedialyte again on Saturday.
1/5/08 – Sammy is in desperate need of your prayers. He took a turn for the worse this morning, and he crashed on three separate occasions. Currently, he is in the PICU on a ventilator. White blood cell counts indicate an overwhelming infection, and one of his lungs is very cloudy on x-ray. He is receiving blood and platelets in addition to other vital medications and antibiotics. He has had a difficult time maintaining his oxygen saturations, and his blood pressure and heart rate dropped at one point requiring Dopamine. At the present time, he is on medications to paralyze and sedate him, and he is very unstable.
1/6/08 – For the most part, Sammy’s vital signs are stable. Of course, as soon as I tell you that, he will crash again because that is just what Sam does! He was doing well this afternoon so his vent settings were adjusted down; however, his vital signs are dropping whenever he is stimulated (i.e., suctioning his trach, changing his diaper, etc.). As a result, his vent settings have been increased again. Anyone watch the TV show House? I always notice how House and his team think they have found the correct diagnosis for a patient, so they relax. Then 20 minutes into the show, they cut to the patient who either begins seizing or bleeding just before going to commercial. When they return from commercial, House and his team are scratching their heads and back to where they started. Yesterday, we saw the bleeding, and now Steve and I know exactly what goes on during the commercials.
1/7/08 – Sammy has moved into the category of Acute Respiratory Distress Syndrome (ARDS). He has an overwhelming infection (septic), and his lungs are taking a hit. From what I’ve read about ARDS, it can be quite a rollercoaster ride.
1/8/08 – Sammy continued to struggle with his breathing throughout the afternoon and evening yesterday, and we learned that ARDS had made Sammy’s lungs stiff and rock hard. We have always prayed that God would lead us and let us know when Sammy’s work on earth was finished. At 10:40pm last night, Sammy’s spirit left his body and leapt into the arms of his Heavenly Father. Today, we have hope that he runs, jumps, claps, laughs and all of those things that he couldn’t do here. We miss him deeply, but we have joy that he is free.
1/9/08 – Sammy’s obituary is scheduled to run in the Indianapolis Star on Thursday, but here’s the basic info:
Funeral services will be held on Saturday, January 12 at 11am at Legacy Funeral Center at Memorial Park (9350 E. Washington Street). Visitation will be on Friday from 4pm to 8pm at the funeral center, and also on Saturday from 10am until service time. Burial will be at Memorial Park Cemetery. In addition, there will be a balloon release following the service.
Memorial contributions may be made to Families for HoPE, Inc., 1219 N. Wittfield Street, Indianapolis, IN 46229. This is the nonprofit organization that was formed with Sammy as its inspiration.
1/10/08 – On this morning exactly five years ago, we learned the devastating news that our unborn baby had a severe malformation of his brain known as holoprosencephaly (HPE). The front portion didn’t separate to form the left and right hemispheres; it was fused together as one. We were cautioned that he could be stillborn, and if he did survive to birth, it was likely that he might not live very long. We were told that he would have severe mental retardation and facial deformities.
Within the coming days of the diagnosis, Steve and I decided that we would prepare for the worst, but hope for the best. We knew that our time with him might be limited, so we promised each other that we would make every day count. We tried our very best to give him as many experiences and opportunities as possible. We also had a keen awareness that Sammy was sent into this world to be a teacher, and we openly shared his life with others knowing that he was not ours alone. We deeply believe that God was using Sammy’s life for a special purpose, and as parents, we tried our very best to stay out of His way and let God move in Sammy’s life.
Today, I praise God that He has given me a cup overflowing with joy even in the midst of my sorrow.
Sammy Yammy and HoPE 