Day 4: More Changes
((((((HUGS TO ALL))))))
Jon had a good day today. YAY!
He was asleep when I arrived, for which I was so grateful, because he didn't sleep a wink last night. Unfortunately, the RT decided to suction Jon, while I was on my "lunch break," and woke him up! Jon managed to get 4 1/2 hours of sleep, so at least that is something. But I was a bit perturbed that the RT suctioned him then. Jon didn't really need it, but the RT was there at his appointed time and wasn't inclined to return when Jon was awake later in the day. And, actually, the nurse and I can and do suction him as needed, but I guess the RT wanted to do something other than chart and check the lines.
Thankfully, Jon was alert for the rest of the day, and we enjoyed our time together. He was all smiles and hugs. He wanted desperately to talk to me, but he can't vocalize with the cuffed trache. The balloon must be deflated, then re-inflated, and the trache must be capped. I haven't been trained in that aspect of this trache, so I felt helpless.
I will request removal of this trache and replacement with a cuffless trache, when he is ready to go home. We'll likely leave the cuffed trache in until then, just in case he needs to be vented again. As of today, I can't foresee that occurring, but then I didn't expect him to have a vicious hour long seizure on Monday morning either.
All vitals are excellent. His BP did drop today after he was given the full dose of Lasix (40 mg), which required a small dose of Levophed to bring it up. Jon's nurse tweaked down the Levophed, as Jon regained his normal BP, and he's off it now.
Jon's nurse today is one of my favorites. She is the sweetest young gal and so compassionate. She's been through some of our more trying times, and she's seen me shed many tears and comforts me with hugs and reassuring words. Today was no exception.
Jon's doc approached me in the hallway this morning, as I was talking with K (nutritionist). The doc's demeanor toward me has changed dramatically. He very gently offered me his opinion, after giving Jon's situation a great deal of thought.
He said that he believes that Jon's hypothyroidism is the underlying cause of all of Jon's issues. The fluid retention, the insomnia, the low sodium, the chronic low BP, the subnormal body temperature, among other things. While Jon's thyroid level isn't alarming, and for many people without symptoms would require no treatment, he feels that Jon's hypothyroidism has "come to roost."
He said he completely understood my hesitancy for the past 8 years, since Jon's hypothyroid diagnosis, in giving Jon Synthroid. It affects Dilantin levels, and Dilantin affects Synthroid levels, and to me that is like chasing your tail. How do we ever achieve suitable levels with either one? There are other issues with Synthroid, but that one is primary.
However, he feels that if Jon could manage the lowest dose of Synthroid, and levels for both drugs are taken every week for the first month and then monthly thereafter, it might be sufficient to bring his hypothyroid under control, which would then "make Jon feel much better and mitigate these chronic issues."
Until Jon's illness (46 day hospital stay) in 2009, I managed Jon's thyroid levels with diet. I removed all of the offending foods, and he did quite well. When he got the Gtube in 2009 and started the formula, which contains the 3 worst foods for hypothyroid, soy, corn, and maltodextrose, his hypothyroid symptoms did begin to appear. That was the principal reason for trying the Blenderized Diet of real food. But that failed, because Jon's digestive system couldn't handle the food, and he filled with air, because I couldn't get the air out of his food, after it had been liquified in the Vita-Mix. That's when he landed in the hospital at Christmas time 2010.
The decision to start Synthroid is huge for me, because I researched the drug in 2005 and decided it wasn't the best option for him.
I stood there listening to the doc's rationale, and I could not dispute it. I looked at K, then at Jon's nurse, who had joined us at the beginning of the discussion. (She is very protective of me with this doc, because she was there when he was really mean to me in 2010.) K nodded "yes," and so did his nurse. I trust these two women implicitly, and I know that they know and understand me, and that they both adore Jon.
The doc didn't push it with me, but he said, "While he's here, in this controlled environment, where we can observe him carefully, and test him any time of the day, starting Synthroid will be as safe as possible. The smallest dose will be used and may be enough to bring him to a therapeutic level. And if we can do that for him, he will feel so much better, will be so much stronger, and hopefully won't be back in here for a long time. What do you think?"
With a deep breath, I quietly said, "Okay."
K and Jon's nurse nodded in agreement, and Jon's nurse put her arm around me. The doc smiled at me, and he said, "It will be okay. We will take it slow. Let's just try it. We can always take him off of it, if it isn't working or causes any problems."
After the doc left, K said, "You've really gotten to that man, you know?" She continued, "He is very smart. He really is. He finds things that other docs overlook, and he's obviously been giving Jon's situation a great deal of thought and put in some detective work."
In the afternoon, Jon's nurse brought in the first Synthroid dose. As she gave it to him, I prayed. Then I burst into tears. "I feel so guilty," I blubbered. "I should have done this before now."
She hugged me and told me never ever to feel that way. She said that I did what I felt best to protect Jon, as always, but as the doc said, it looks like the thyroid is the culprit, and now is the time to address it. She comforted me by saying that I was a wonderful Mother, that everyone at the hospital thinks this about me, and that everyone absolutely loves Jon. Then she said that the doc is a brilliant doctor, although his bed side manner needs a lot of work. She said, "but he has softened towards you in the most amazing way. I am in awe of how he handled this today with you."
After this, I left for my "lunch break," and instead of going to the cafeteria, where I like to sit outside in the sunshine while I eat, but now must contend with construction noise and stench, as a new patient tower is being constructed, I went to the chapel garden. Jim sent me off this morning with a thermos of Wolfgang Puck organic tomato soup and crackers, so I didn't have to eat the pathetic excuse for soup in the cafeteria. Vegetarian items are rarely on the menu. I sat in this beautiful secluded garden, surrounded by flowers, trees, and foliage, in front of a lovely bronze statue of St. Francis. Just the peaceful setting I needed at that time, and this will be my new retreat at the hospital. It's convenient, as it is right behind the chapel, where I light candles and pray every day.
So, we pray that this little dose of Synthroid will be the answer and sufficient to turn around Jon's assorted problems. Of course, we also pray that we will be able to keep his Dilantin at the right level, while it is dueling with the Synthroid.
Meanwhile, Jon is improving with regard to his pneumonia, and that is truly a blessing. He is so incredibly brave in every way. He is my hero. My everything.
Thank you all so much for your prayers, support and love. You're the best.
Love & Light,
Rose
xoxoxoxoxoxoxoxo
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Lisa O: mom to Caitlin (12-CP, VA shunt, seizures), Brandon (10), Tyler (7), Logan (5)
