Sunday, September 23, 2007

August 24th, 2007

Carver had vitrectomy surgery on his second eye (left) on Wednesday. The surgery went well. The surgeries have only been taking about an hour, which is different from the 3 - 6 hours that we had originally been told that they would take. The outcome of this type of surgery ranges anywhere from 20/40 vision to no vision.

Carver seems to be bouncing back well from surgery. He was kind of crabby today, probably due to trying to get his digestive system going again after the anesthesia. He has been getting all of his feedings via bottles.

Carver will probably be cleared for release next Wednesday (29th.) Originally we had been told that it would take 2 weeks from surgery for the air pockets in their eyes to dissolve, but now she is being told that it should only take a week. The babies can't fly until the air pockets dissolve. Kinnick won't be ready for release as soon as Carver will be, since she hasn't had surgery on her second eye yet, but we believe they'll be willing to keep Carver until Kinnick is ready to be released.

Kinnick unfortunately has been struggling more. Saturday night Kinnick developed an infection and had a high temperature for a couple of days. The infection has caused her breathing to become much more labored and she has required extra support breathing. She has been jumping between CPAP and nasal canula. She also had two apnea spells today where she quit breathing, which of course was very scary. They don't really know why this happened. Because she has been on CPAP, she is not getting any of her feeds via bottles.

She also ended up with IV infiltrate around one of her ankles, which is a bad chemical burn caused by the IV not being inserted correctly.

Because of the infection she developed, Kinnick was not able to have her second eye surgery on Wednesday. It is tentatively scheduled for Friday morning (24th), but not sure if they will still do it on Friday, after today's two apnea spells, or if they will decide to wait until Monday for the eye surgery. The retina is completely detached on this eye (left). Kinnick will hopefully be cleared for release from the Michigan hospital one week after her surgery.

Both babies have had a few bleeds in their eyes after surgery. Carver has had more (6 drops) than Kinnick (1 drop), which is the opposite of what they expected. The blood usually gets absorbed on its own, but it can cause scar tissue, so they're monitoring this. After the babies come home, it is possible that they might have more scar tissue develop. If it does, they might have to go back to Michigan.

The transfer to Michigan has been a big adjustment. In addition to the doctors and nurses not being familiar with the babies like the ones at Wesley had become, they do things differently there. They don't believe in sedating the babies, don't believe in using suppositories, don't use the nasal canual in the same way (here they would get all oxygen, there they get some air mixed in also) etc. So the babies are having to adjust, without any weaning period to get used to these differences. The nurses there aren't nearly as concerned about cleanliness as the Wesley nurses are. Although we have met some nice nurses, there are others that don't seem to pay close enough attention to what is going on with the babies. We also mainly deal with the nurse practitioners and talk very little to the neonatologists, which we spoke to frequently at Wesley.

I am staying at a hotel and take a taxi to and from the hospital. I go to the hospital in the morning and stay there until about 7:00 p.m. each night.

It's been a very stressful and frustrating time, but we don't regret going there so the babies could have the eye surgeries.

I am very anxious to get back home to the rest of my family, my own house, Wesley hospital, and having fewer out of pocket expenses. Medicaid says they will possilby pick up some of the hotel expense and $10/day for food.

Carver will likely be ready to go home once the babies are transported back to Wichita, and I feel comfortable with him going home, but Kinnick will likely need a little more time at Wesley.

Your continued thoughts and prayers are appreciated. It's been a long 5 months.

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