Thursday, May 31, 2007

One Down, Three More to Go

We have completed one of our tests for the week. Today was the renal ultrasound exam. At first I was anxious about this because one of the scheduling nurses (or perhaps it was an assistant), said it was like a colonoscopy. YIKES! Given this information I grilled the ultrasound tech last week trying to find out what I should be concerned about and how we could minimize stress on Beth. Halfway through our conversation she finally said, "we are just putting a probe on her belly," (or something like that).

Okay, so that test was easy. It was supposed to happen yesterday but the scheduling nurse (was it the same one who told me it was like a colonoscopy) sent me a form saying the exam was taking place in the WRONG location. Needless to say, we had to reschedule and they had a slot this afternoon. So Beth squirmed a lot when they contrast gel was squirted on her sides and belly but she was generally complacent about the whole thing.

The anxiety this morning started when the scheduling folks for her Cystogram (happening tomorrow) called to change her appointment. She was orginally scheduled for a 9:00 a.m. exam and we were to arrive at 8:00. Given that she would be under conscious sedation, she was not supposed to eat for 8 hours prior to the exam. I was willing to go with this but then the call this morning changed the appointment to 12:30 p.m. I could not imagine keeping Beth from eating through this long morning time so again I took to the phones (I think the good people at Sutter Memorial hate me by now).

I pestered the scheduler to find out why the appointment changed. She told me the doctor had a surgery come up. I asked to speak to a nurse about the 8-hour food ban. By the time I did catch someone (thankfully a helpful guy named Steve who spoke with me last week), I was even more adamant that this schedule wouldn't work. We discussed the pros and cons of the Versed they prescribed for sedation and I told him that this is Beth's normal nap time and she would be quite close to passing out at Noon.

Steve agreed it was worth a try and kindly spoke with the doctor and an anesthesiologist who subsequently agreed to try the exam without sedation! This has been my aim all along because I hate the idea of sedating her. If I can get her sleepy and relaxed in a dark quiet exam room, we just might have better luck keeping her still. Granted she will be a little peeved by being catheterized but she'll get over that once I nurse her.

So tomorrow we get the cystogram and I don't have to worry about starving our little girl. And, if you saw her appetite during the last few weeks, you would agree that my concerns are valid!

More tomorrow.

Wednesday, May 23, 2007

Bladder Reflux Tests

We have a series of doctor appointments coming up for Beth and Elliott. We suspect that Elliott gets migraine headaches. My sister and I get them, my father gets them and my sister's youngest son gets them, too. Given our family history this might explain why Elliott sometimes has unexplained episodes of vomiting and headaches. Now that Beth is stable, it seemed a good time to pursue this affliction for poor Elliott. We feel badly that we have waited so long to pursue this but thankfully these episodes are far a few between; they happen on trips to altitude (like we've had time to go skiing these last two years...) or when he spends too much time in a stressful situation.

So Elliott sees the neurologist on June 5 and Beth has four appointments between now and June 6. Beth with have a renal ultrasound on May 30. At first I was told this was like a colonoscopy but then after hounding the poor technician with questions, she said, " it's not like we are going inside or anything." That changed the picture. Now I know it is just an abdominal ultrasound so that will be a piece of cake. Her appointment on June 1st, however might be difficult.

On June 1 she will have a nuclear cystogram to check the status of her bladder reflux. (more detail about the condition and tests)

She will be given Versed which is a drug for conscious sedation. This keeps her awake but rather loopy. I am not looking forward to this. If Mike and I remember correctly, this is the drug they gave Elliott the first time he had ear tubes placed and he awoke from anesthesia in a delirium. It took two of us to hold him down for an hour until he regained his bearings. He would have hurt himself if we didn't immobilize him with force and that was not something I want to experience again. Needless to say, we are highly anxious about this test for Beth.

They will insert a catheter through her urethra (or is it the ureter??) to her bladder where a small balloon will be inflated to keep the catheter in place. Then they insert a radioactive dye and take pictures as she voids. Apparently this test exposes her to less radiation than the VCUG did (voiding cystourethrogram) that she had when she was first diagnosed in June 2006.

After this test we have a follow up with the urologist to consider treatment or to hopefully close this chapter if she has grown out of the defect.

On June 6 we meet with the developmental specialist. I was first inclined to cancel this appointment because Beth is doing so well. But given that she still isn't walking entirely by herself and she has such a funny crawl, it might be a good idea to have a few other development tests to make sure something isn't amiss. I think she just is going her "own way" as she has from the point of conception. Won't hurt to get a professional's opinion and the development specialist from the Mercy San Juan NICU is such a sweetheart. She will enjoy seeing Beth and we will enjoy seeing her.

Enjoy these photos. The handsome grey-haired guy is my oldest brother Barry. You can clearly see how much we look alike. The other photos are of our recent trip to Monterey where Mike ran the very difficult Big Sur Marathon in just over 3 hours.

Thursday, May 17, 2007

Ah, Sleep!

Finally! One night of sleep! Beth made it from 9 p.m to 6:30 a.m. last night. Of course she had a few peeps during the night but I was so happy to stay in bed for 8 hours. She is going through a growth spurt and wants to eat everything in sight. Here is a check list of her recent "acquisitions" and my impression of her likes/dislikes:
French toast - "Eck, it is sticky."
Potato Bread - "A little gummy mom, but if you scrape it off the roof of my mouth, it's pretty good."
Bananas - "still no way I'm going to eat those mashed or otherwise."
Cheese - "too bland"
Pretzels - "The food of gods (or goddesses for that matter)"
Quesadilla - "Right on!"
Spagetti-o's - "You must be kidding."

Tuesday, May 08, 2007

Bethday Party Photos

We had a wonderful time at Beth's special party. Beth is doing just fine and took her last dose of antibiotics for the intestinal infection on Sunday (the day of the party). Here are a few photos taken by my sister-in-law who is becoming the de facto photographer of family events. Thanks Cathie!
Obviously most of these are of Beth and me in the play pool. The two little boys are Elliott and his red-headed cousin, Giacomo, who must have been admiring Elliott's muscles!
Nana and Grandpa came up from Arizona and were treated to watching Beth take her first solo steps. She has only made about 3-4 steps on her own but they were proud. In fact, they could be the primary reason she took these steps. They worked with her while Daddy and I were away for a few hours and when we returned, she had a new trick!

Tuesday, May 01, 2007

C. Diff

We have discovered the root of Beth's temperature fluctuations and irritability. She has a Clostridium Difficile infection in her intestines. This was discovered with a stool sample. Here is a link to information about C. Diff.

She developed this infection after the 25 days of antibiotics from the ear infection. The first 10-day course turned into 25 days after the confusion with Zythromax and then Omnicept. I'll write about the details of the test later but for now, we at least are on top of the infection. It is not serious for her at all because we caught it early. She is receiving Flagyl 4 times a day. I am serving as my own compounding pharmacist now. I have to cut and grind this tiny pill into four pieces and mix it in syrup or food 4 times per day.

Vitals: Today she weighed 15 pounds and 15 ounces and is 27 3/4 inches long. This was her 15-month appointment. Today also marks 1 year that she has been out of the NICU. We can't believe that this year passed so quickly when the previous year had been so painful and slow.