Thursday, July 30

On Tuesday afternoon, Tommy got a beard trim (much-needed...I told him he was too young to look like Gabby Hayes). Kirsten (who will be Tommy's home-health-care aide for a month, maybe more) did a great job. Next Tuesday, Kirsten is going to cut Tommy's hair, and she is teaching me in the process. Her husband trained to be a barber and has taught her; she says he doesn't have a barber shop yet but hopes to eventually open one. Kirsten is also a barrel of fun. What a treat.
Yesterday, Tommy saw Dr. Giddins, his new primary-care doctor. She told Tommy several times how great he looks and that unless something else comes up she wants to see him in the usual three months. Everything turned around for Tommy when he saw Dr. DeMarco in Salisbury on July 13 for that emergency "second opinion" on his inability-to-urinate-at-all problem, and Dr. DeMarco took care of that by irrigating Tommy's bladder. During that same visit, his nurse, Jeanne, told me that there is a doctor named Dr. Giddins who is affiliated with their hospital (Peninsula Regional Medical Center, or PRMC, in Salisbury) who has an office right next to our post office in Ocean View! Dr. Giddins saw Tommy two days later, and she helped Tommy get over the pain hump (including making a call to Dr. DeMarco's office while we were there, which was the kind of communication that had not been happening with so many of the doctors we had previously been seeing). Finally, we could get some sleep. Dr. Giddins also called in the home-health-care troops from PRMC (which will now be our hospital of choice), and so for the past week these folks have been getting Tommy back up to speed: Mariel, the R.N. (who helped me with the fine points of catheter/bladder-irrigation techniques); Scott (physical therapy, who has a garage full of boats so he and Tommy are instant pals); Megan (occupational therapy, who finally solved my longtime problem of how to keep the bathroom floor dry during the shower when the shower bench sticks out into the room); and, of course, Kirsten.
In the spring, Irv, Tommy and I agreed that our big project this summer would be to go surf fishing. So, Irv and I got Irv's pickup truck registered and ready for us to take Tommy surf fishing. Now we can finally start to think about that!

Monday, July 27, 2009

We can now safely say that Tommy is out of the woods. The last couple of days, his entire food-and-water-processing system has stabilized and he has slept soundly through the nights. Yesterday morning, I asked him how he felt, and he said, "Like a new penny." What a hassle we've had since he went to the hospital on Memorial Day weekend--first the gall stones, then that horrible bladder problem that came out of left field. But now it looks like we can move on. Yay.

Thursday, July 23, 2009

Yesterday, it looked like Tommy was going to get through the voiding trial without a hitch--after the catheter was removed in the morning, he was able to urinate several times during the day with no pain. However, last night he tossed and turned for several hours; only after I gave him a pain pill was he able to sleep. Fortunately, the visiting nurse is coming today. Two steps forward, one step back.

July 22, 2009

In two days, Tommy will have a "voiding trial" to see whether his water works come back on line when the catheter is removed. The trial will require two appointments--one in the morning and one in the late afternoon. Dr. DeMarco's urology practice is in Salisbury, but on Wednesdays one of his colleagues comes right here to Millville, to the same suite of offices where Dr. Giddins has her office (these doctors are all affiliated with Peninsula Regional Medical Center in Salisbury, rather than with Beebe Hospital up in Lewes). So, on Wednesday, Tommy will visit the doctor twice--and it's only five minutes away. Yay.

Thursday, July 18, 2009

Overall, the past week was very difficult--no sleep turns us both into zombies--but gradually things are looking up a little. Tommy's inability to urinate was such an unexpected problem after that endoscopic procedure--and then, even when he had a catheter, he still was unable to urinate a lot of the time because the catheter was getting blocked up. It was difficult on several levels--I ended up getting that second opinion from Dr. DeMarco (very good move), who saw Tommy immediately on Monday; and Dr. DeMarco will now be Tommy's urologist. Then, yesterday, I changed Tommy's primary-care doctor (a huge move, but necessary for a growing list of reasons); and together, the new team is beginning to move us past this impasse. Tommy saw the new doctor, Dr. Giddins, yesterday; and after conferring with Dr. DeMarco's office, she prescribed a pain killer for Tommy so that he can sleep. Dr. Giddins also lined up a visiting nurse, a physical therapist, an occupational therapist and a bathing aide; each of them will come twice a week for a month and possibly longer. The home-health nurse is coming today, sometime between 12 and 1.
This month, I especially thank my lucky stars for Gaie (for her invaluable phone support) and "the three Musketeers" (Irv, for his unflagging help; Steve, for making it possible for me to attend the wedding in Michigan of my godson Jesse; and Marshall, my brother, who came for nine days and helped in myriad ways, including yeoman chef service).

Tuesday, July 14, 2009

After a very rough Sunday night, due to Tommy's bladder shutting down (it turned out to be a clot/obstruction where the bladder drains out into the catheter tube), the "second opinion" urologist agreed to see Tommy yesterday morning if I could get him over to his urology team's home office in Salisbury, Maryland. Thank goodness for that. The urologist, Dr. DeMarco, who is very good, got up to speed with Tommy's overall medical situation amazingly quickly. Just as Dr. Caruso had done with Tommy's difficult liver-enzyme problem, this doctor immediately laid out a treatment plan that was just what I had hoped for. Then, to allow Tommy's bladder to drain, he and his nurse, Jeanne, irrigated it using something Jeanne compared to a turkey baster, insterting its tip into the outside end of the catheter hose and sending up a stream of distilled water. Out came the bladder's contents, and Tommy didn't float away after all. Then Jeanne showed me how I can do the same procedure at home if his bladder gets stopped up again and handed me a turkey baster to take along. Now to the plan. This Friday, I will take Tommy to Peninsula Regional Medical Center in Salisbury for a renal sonogram and also some blood work. If all looks okay, then next Wednesday, Tommy will see one of Dr. DeMarco's fellow doctors, who comes to Millville once a week to see patients. Tommy will go in the morning. and then again in the late afternoon, for a "voiding trial"; the catheter will be removed in the morning, and then--it is hoped--by the time Tommy comes back in the afternoon, he will demonstrate an ability to send that urine out of his body through his own hose. Dr. DeMarco was careful to warn that sometimes, when a patient, in recovering his functions after anesthesia, loses the ability to control the bladder's functions, it never returns at all. But we have to try. In the meantime, Tommy (and I) had a much-needed good night's sleep last night, and things with the catheter went swimmingly while he slept.

Friday, July 10, 2009

Yesterday, I took Tommy to Lewes for his appointment with the urologist (actually, the urologist's nurse practitioner), who was recommended by the emergency room doctor who put in Tommy's second catheter last week. I thought this would be a relatively straightforward procedure; i.e., that the nurse practitioner would take out the catheter and give us strategies and exercises to help in getting Tommy back to normal so he can urinate. But, instead, he ordered a total workup of Tommy's urinary system...tests, blood work, CT scan at the hospital of Tommy's one kidney... instead of being removed, he said, the catheter would have to stay in for more than a month longer. That delay is worrisome, because if Tommy's problem is neurological--i.e., if something about the endoscopic procedure such as anesthesia temporarily shut down his brain-to-bladder connection, then it seems possible that the longer the catheter remains in, the more difficult it will be for Tommy to relearn how to control that function. In any case, this morning I found out that there is a urologist right here in Millville, and so I have booked Tommy to see him on July 22 for a second opinion. I've never gotten a second opinion before, and if this doctor agrees that the catheter needs to stay in for another month and that all these other tests must be done, so be it. At least this urologist is only five minutes away rather than almost an hour away (I wish the emergency room in Millville had recommended him in the first place!), so it will be worth the extra effort.

Thursday, July 2, 2009

Tommy's enzyme numbers (I took him to the blood lab Tuesday and they came back yesterday) look really good. After a steady and alarming rise since at least December, they have dropped significantly since the endoscopic procedure last week, when Dr. Caruso, the gastroenterologist, pushed out a bunch of gall stones from Tommy's bile duct. So, clearly the gall stone obstruction in the common bile duct was a large cause of the problem--maybe the whole cause (my fingers are crossed). So these lowered liver numbers are exciting. Dr. Caruso will talk with us tomorrow or Monday and he will tell us what the numbers mean and what needs to happen next.
There has been a problem this past week and a half, but nothing on the order of the liver problem. It's with the urinary system. Tommy's bladder hasn't gotten up and running since the procedure, so it's been on-again, off-again with catheters. I had to take Tommy back to the emergency clinic last night to get his second catheter since the procedure--he couldn't have gone through the night without floating away. This catheter will be removed late next week at the urologist's office in Lewes.
Thank goodness, during the summer we have an emergency room right here in tiny Millville--it's a tourist-season outpost of Beebe Hospital in Lewes. It's only a five-minute drive that would otherwise be an hour's drive up to Beebe.