April 2010 – Desperation!

Shots, shots, and more shots

Overnight feeds

A month of blood thinners, feeding tubes, diuretics, doctor visits, and home care nursing has gone by. Sophie’s belly is distended, she’s vomiting, and screaming bloody murder.

It’s 6:30AM, we’re tired, beat down and desperate. It’s clear that Lil’ Sophie needs to go back to the hospital. But after serious negligence, that we won’t go into publicly, we refuse to take her back to St Johns.

In the midst of the morning chaos my husband lead us in prayer. We needed guidance and we needed it fast. At that very moment the TV went black for so long we both looked to see if it was broken. Then came the most beautifully shot and edited commercial……for St Louis Children’s Hospital.

After several phone calls, our pediatrician was able to get Sophie admitted into the GI department of St Louis Children’s. Sophie spent a week here undergoing lots of tests, and getting familiar with her new team of specialists.

During this week we learned that not only did Lil’ Sophie have pulmonary stenosis, and absence of the portal vein, but it was believed that she never had a blood clot. The blood thinners were stopped immediately. We also found out she’s missing her gallbladder, her spleen is enlarged, and has developed esophageal varices due to the back up of fluid in her belly.

We took Sophie home with diuretics, feeding tube, and future appointments.

Up my nose with a rubber hose

~ by Jenny Bagwill on April 21, 2010.