Tuesday, August 18, 2009

My irritation level is running high these days. I am finding just about every facet of Tomas' health care is bothering me.

His GI doctor is one of the best in Dallas but hasn't reached out for other opinions to find out what is causing the swelling around the g-button. Tomas is still retching when the swelling goes down and would throw up if he could. As it is he just starts to suffocate from all the choking and retching and I have to empty his stomach so he can breath again. It is reminiscent of the time before his nissen surgery although with much less frequency. The thought of switching doctors and moving records and especially re-testing Tomas is what is making me wait through one more round of appointments before I do anything. Irritated.

His sleep study was done on the 12th but I don't have the results yet. The PEDIATRIC sleep institute didn't have infant cannulas They only had pediatric sizes. Could they not see they had an infant scheduled? I mean really what would it cost to buy a box of infant cannulas and leave them in the closet for when you need them, and why bill yourselves as able to serve infants? Even worse,I'm afraid it will need to be repeated because he hardly slept at all (his stomach was bothering him)and did not fall into a deep sleep until around 3:30 in the morning. I'm not sure the doctors got enough information. Irritated.

Tomas' oncology checkup was last week. His hemoglobin levels have dropped but are still in normal range so he just needs a follow up in a month. However, he as some white spots that are popping up on his body. I showed them to the doctor (not his regular doc - she was stuck at hosp.) and she said they were nothing to worry about. When I got home I read his checkout summary and the visit was coded as "Low Grade Myelodisplastic lesions". What? Irritated.
His pulmonary issues are the same. I do not hear any improvement with his breathing. Most likely it is because I can not manage to fit in 4 breathing treatment a day. Sometimes I get 2, sometimes I get 3, but rarely 4. I just run out of time. I am trying to improve my schedule and make it a priority, but between physical exercises 3 times a day, oral exercises 3 times a day, suctioning at least once a day, breathing treatments, chest patting, oxygen set up when he naps, making sure the feed bag doesn't run dry and all the tubing stays in place, medication, and regular household stuff, something always gets forgotten. Irritated (at myself).

Now, since this is the crankiest post I've ever written I would not want you all to think I am sitting on my front porch surreptitiously shooting bb's at all the skinny joggers going by or anything else like it. I am grateful to God for every moment of every day, thankful for the good ones and offering up the bad ones. He has graced me with the gifts of calm, peace, and hope. They have never left me, not even when all the darkness the world can conjure up tries to suck me dry. He is always there, if not immediately present in my mind, then quietly calling me to walk away from the troubles of the day and find rest in Him. I know I am blessed, and I know I am unworthy. Therein lies the paradox of humanity. C.S. Lewis calls it the "unbearable compliment".

God bless you all,

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