Day 7: Getting There
((((((HUGS TO ALL))))))
Jon had a good day today. He slept for 5 hours! He would have slept longer, but at 7:00 this evening, his blood pressure plummeted, unnerving his nurse (his "hospital wife") and his nurse, who cared for him in 2009. I told them that this was typical, while he is in deep sleep, and that when he woke up, his BP would probably come up.
His nurse gave him a bolus of 250 cc's of water, and we woke up Jon to reposition him ~ pull him up in bed and turn him. I wasn't crazy about doing this, but we needed to know whether his low BP was related to his positioning and deep sleep. Thankfully, Jon woke up without any problems, and he immediately grinned at me from ear to ear.
I said to his "hospital wife," that I didn't think he was experiencing organ failure, which is what she and the other nurse were fearing. They conceded that I know Jon well, and we were all relieved.
Jon is breathing on his own entirely with SATS of 100. Wow! He isn't coughing or requiring suctioning. Great progress!
His body temperature is normal, no longer in the 93 range. His urine output is excellent. And he's pooping great quantities! Everything is operational. YAY!
Treatment for his toe ends tomorrow (bathing in Betadine and applying Gentamiacin twice daily), but the podiatrist didn't leave a protocol for what to do next. I will ask his nurse to call the podiatrist in the morning.
Of greatest concern now, other than his low BP, is his hemaglobin, which has been low since his arrival and has decreased daily. If his hemaglobin drops below its current 8.1 level, he will likely need a blood transfusion.
The on-call doc today is the Chief of Cardiology. In 2009, he did a scoping of Jon to determine whether he had fluid around his heart. He told us that Jon's heart looked perfect. He is a lovely man, and the chattiest doc I've ever met.
He looked at Jon's echocardiogram results, and said that the 50% injection fraction was nothing to worry about. Then, he and I went over all of Jon's chemistry. He said that he feels that much of Jon's issues relate to his poor gut motility. He listed drugs, like Reglan and Erythromyacin, and I nodded, "He can't take those." He responded that he was sure that I'd already investigated everything, and that all of the needed specialists had been consulted and had given me their advice or suggestions.
He said, "Usually, when we see patients, such as your son, it is quite obvious that their care is substandard. In those cases, we sometimes find it difficult to tolerate the demands of the family or caregivers, because it is clear that their care has been poor. But, when we see Jon, we see that his care is impeccable. We are amazed and delighted that Jon is so well cared for and so loved. And, we are impressed with your knowledge and understanding of his complicated medical condition. You are a wonderful Mother, and he is blessed to have you as his Mother. And we all know that you only want what is best for him, and we must listen to you and hear your concerns, as you know him best."
I thanked him, as tears welled, and he put his hand on my arm, and said, "Dear, no thank you necessary. We do our best, of course, for all of our patients. But it is especially heartwarming for us to work with you in the care of Jon."
These compliments from the docs and nurses about our care and devotion to Jon are helping me to cope with my guilt feelings ~ why didn't I know to do this? Or recognize that it could be that causing his problems? Or ... you name it, and I have a long list of could'ves and should'ves. I am so grateful for the reassurances given to me by Jon's medical team.
I didn't have an opportunity to go to the Towers ICU to find Roslyn today. I will try to get there tomorrow.
As always, I thank you so much for your love, support, and prayers. Your prayers are working miracles on our sweet boy, and we are anticipating his return home some time this week. We just have to coordinate everything (His home health nurse's work schedule for the week and obtaining the necessary supplies and equipment to give Jon IV Zosyn [antibiotic] and a feeding pump for Jon's formula).
Thank you, thank you , thank you!
We Love You!
((((((((((((HUGS)))))))))))
Love & Light,
Rose
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Lisa O: mom to Caitlin (12-CP, VA shunt, seizures), Brandon (10), Tyler (7), Logan (5)
