Saving My Son

Before I start ranting, please be sure you see the post below and the picture of the beautiful flowers James sent me yesterday for Mother's Day. I called him this morning and woke him up (I get my days mixed up and forgot it is Sunday) and first thing out of his mouth, groggy and still half asleep, was Happy Mother's Day Mom! Did I mention that my children are perfect?

Yesterday proved to me that hospitals are dangerous places and I need to keep my eyes and ears open. When the ENT did the tracheotomy, he reported to me with some pride that he was able to use a regular size trach tube for Parker. He told me he had to "shave back" part of nis neck to make it work, but he had done it. At the time I thought, how stupid .... why would you put in a regular size trach tube on a large 6'4" man with shoulders the width of Dallas and a neck to match? But! I figured, what do I know?

Once again, Mama Bear knows best. The Critical Care doctor was furious when he had to come in the middle of the night and retrieve the thing that had dislodged and slipped out of place. He replaced it with the larger size trach tube. Then he showed me his own neck, which to me looked long but not too wide, and told me when he had a trach tube he had to have the large size, too. There was no reason for Parker to have the one he had, and the Critical Care doctor shared with me that Parker could have died from that! I'm pretty sure I didn't need to know that part, but it did prove to me that I need to follow my instincts and continue to speak up.

Then yesterday, during the day, Parker spiked another fever of 103. Dr. Garcia ordered a CT Scan to be done to be sure the nasty cyst wasn't growing more infection (since the tube draining it had come out a couple of days before .... still don't know if it came out during his Physical Therapy or if he pulled it out himself). The larger CT Scanner was broken, which I think is really lame since this hospital does bariatric surgery and advertises quite arrogantly for their "world renown bariatric team" (what do they do, tell people they can't come just yet till the thing is fixed?) The regular CT Scanner is fine, except Parker is currently carrying an extra 40 lbs of fluid they are trying to get drained off via Lasix. So his weight was over what the regular scanner bed allows. Dr. Garcia and another doctor had to tell the Radiology department that it was a life or death emergency to get them to try and use the regular scanner.

Parker has serious anxiety over the CT scans. He usually throws up and they don't notice and he has to hold it in his mouth until they get back to the room and someone finally sees him frantically pointing to his mouth. The Charge Nurse yesterday, a very sour, heavy set woman named Francesa (who should NOT have been wearing hot pink), practically growled at me when they were preparing to take him for the scan. She grumbled to someone else something about "we shouldn't be doing this." Stupid woman. She didn't know Mama Bear has fangs in addition to ears. But I let it go. I wanted my son cared for and so for his sake, I kept my mouth shut.

I went to the waiting room and typed away, hitting the keys of my lap top with a fury reserved for the days when my gut burns with whatever the enzyme is that is also known as "heart ache," and waited for them to tell me when it was over. His nurse, a very, very nice man named Phillip (who met his wife on eHarmony and became a live version of The Brady Bunch) promised to let me know as soon as he was done. An hour ticked by before Francesca came to get me. She shook her head and scowled at me and said they hadn't been able to get a good scan. The table on the scanner kept halting and they couldn't get him to go back and forth through it.

We don't even know if it's working anymore .... she complained, staring at me as if somehow I was personally responsible since my son is critically ill and the other scanner was already broken. I used every bit of restraint and patience and tolerance in reserve to not hit her in the face. I will be leaving a message for Francis, the Critical Care Unit Manager, and let her know that Francesca is a bully and needs to go back to sensitivity training. And whatever her problem is, I don't want her near my son anymore. If you can't put aside whatever your own issues are when you are working with a critically ill person, then you are in the wrong business.

Last night's nurse, Shelley, was very nice. A bit abrupt at first, but then I realized she saw how distraught I was and wanted me to get some sleep. Parker had a good night, but Shelley didn't know he has been on the Versed for a month now and so she "weaned" him off it overnight. When I got here this morning, I told her he had been on it, up to 10 what-evers, since April 13th. She thought he had only been put back on it because of the trach surgery. I also told her there had been seizures in the family, his Dad and his brother, and that Parker'd had an episode of a "non-neurological" narcotic related seizure episode when he was weaning off the morphine. She rolled her eyes and looked back at the chart and put the Verced back up to .5 somethings. I really hope that's enough.

I'm getting pretty frustrated with this whole thing. First the split mesh and the nurse who was afraid to call the doctor to tell him Parker's guts were on top of his abdomen. Then the VRE infection and the fact he is now in isolation. Then the trach mistake. And the yeast infection in the picc line. The fact that no one noticed he hasn't had a bowel movement in over a month, and for over a week he has been getting fed through a tube which is going where??? And on and on and on.....

The good news is, he remained fever free overnight (99 degrees under the arm which translates to 100, but is a damn sight better than the 103 earlier in the day). His heart rate has been stable in the 120's, and he breathed on his own all night. His breathing is SO much easier since he has the larger trach tube, it is amazing what a difference that made. He is now on the .5 of the Verced and I am hoping I will get to share a nice day with him, and he will be a little more lucid than he has been for the past month.

I wrote the date on his board before leaving his room for the nurse change, and underneath I wrote Happy Mother's Day Parker!

P.S. The bush and flowers in the photo above are what smell like Bay Head. Does anyone know what it is? And please be sure to see the post below and the photo of my favorite lilacs that James sent me yesterday. :-)