Ginny has been eating like Kobayashi since Tuesday evening. She sucks down at least 60 mL every 3 hours and hasn't spewed once. All great things. So, this morning we took out her stroller and car seat and set it up next to her crib in the hospital. "Are you ready to go home again?" we were asked jokingly during rounds. "Subtlety is not my strong suite," I replied. Just ask the herd of jackasses at parking services.
Within about 45 minutes our stuff was packed, Ginny's monitor was shut off, the leads were taken off, and her IV and PICC were removed. We strapped her in the stroller and we were off.
Since it was Thursday, we decided to stop at the March of Dimes NICU family lunch on our way out. I know I've mentioned it before, but thanks again to Gator Domino's for donating pizza to the March of Dimes every Thursday.
Today's lunch was a special one. On Friday, July 30th at 7:00 pm, the University of Florida football team will host the 3rd Annual Gator Charity Challenge. (You've probably heard of them, Nicole. They're kind of a big deal.) Some of the athletes on the March of Dimes team stopped by to sign some autographs and have lunch with us. They were March of Dimes Team Captain Duke Lemmens (football, #44, DE), Billy Steinman (football, #60, OL), and Claire Spurling (track & field - she's a pole vaulter). Of course they had already heard about Ginny (she's a pretty big deal, too).
If you are in Gainesville - or anywhere in Florida, really - you should come support these great charities. Check it out at: http://www.gatorzone.com/story.php?id=18308. We'll be supporting the March of Dimes team this year.
After lunch we loaded the car and headed home - this time for good, hopefully. When we got home, we fed her, changed her, and put her to bed. Today is my 35th birthday, and I couldn't have asked for a better gift.
Thursday, July 22, 2010
Tuesday, July 20, 2010
Problem Solved
We dropped Ginny off at the OR at 10:00 AM and she was back in her room by 11:20. She has just a couple of tiny incisions to add to her quite impressive collection of scars and she is doing great. She has taken some Pedialyte by mouth and kept it down, so we are back to working on feeding. Her "mechanical" issues with suck/swallow have been fixed and now it is just a matter of keeping it down. We had a visit from Dr. Baines (the other Dr. Baines, that is)and we are reasonably sure we will be home by Friday, if not earlier.
I'm planning on making a couple of appearances at the office over the next couple of days just to remind people of what I look like, and then I hope to be back to work next week. It's been so long, it will probably feel like I'm starting a new job.
I'm planning on making a couple of appearances at the office over the next couple of days just to remind people of what I look like, and then I hope to be back to work next week. It's been so long, it will probably feel like I'm starting a new job.
Excitement
After only getting a couple hours of sleep on Sunday night, and that being in a recliner at the hospital, Rachel and I slept a little late this morning. We got to the PICU at about 9:30 this morning. As we were waiting at the desk to be buzzed into the unit, Rachel's phone rang. It was our nurse, Amanda, letting us know that Ginny was about to be wheeled to surgery. We hurried to her room and helped Amanda get all her monitors and things ready for transport. The three of us brought her down to the second floor and dropped her off in the care of Dr. Islam at 10:00. If everything goes according to plan, she should be back in her room by noon.
Monday, July 19, 2010
Problem Identified
We actually had to take Ginny downstairs to radiology for her ultrasound rather than them coming up here. The radiologist was able to identify Ginny's problem as hypertrophic pyloric stenosis (HPS). HPS is a narrowing of the opening that goes from the stomach to the intestine due to an enlargement of the muscle around it. This is a known, but not very common side effect of the drug PGE that she was given to keep her patent ductus arteriosis (PDA) open before her heart surgery.
Ginny will need surgery to repair her HPS in the next few days. The good news is that the surgery can be done laproscopically and we could be home (again) only a few days after the surgery.
Ginny will need surgery to repair her HPS in the next few days. The good news is that the surgery can be done laproscopically and we could be home (again) only a few days after the surgery.
Friday, July 16, 2010
It's 3 AM - Welcome to Fatherhood
Teaching Ginny to eat has not been as easy as we thought it would be. The difficulties started at about 2:30 Friday morning when Ginny spit up her dinner and ejected her N-G tube with it. Rachel was a good sport about shoving a new tube up her nose and into her stomach. Friday was a zombie day for all three of us - it was the first day that we didn't wake up at or have to drive to the hospital since May 27th.
Saturday was a pretty good day. Ginny has learned how to eat from the bottle fairly well. We were instructed to give her whatever remained of her feeds via the N-G tube and a food pump. She did well with this in the morning, but as the day progressed she would take less by mouth at each feed. By the afternoon she started spitting up as much as we were pumping into her. It seemed like someone told me to use my kid to produce foie gras.
Sunday morning was pretty good, too, but it deteriorated a lot faster. By 1 o'clock in the afternoon she was spitting up (read: projectile vomit) as fast as we could pump it in. We stopped and called our practitioner. She told us to lower her feed volume and space the feeds out to 4 hours instead of the 3 we were originally instructed. The 5 o'clock feed went well, until the 9 o'clock feed. That's when she launched 2/3 of her 5 o'clock feed at Rachel. The remaining 1/3 went down the front of my shirt about 30 minutes later. We called our practitioner and she told us to take Ginny directly back to the PICU.
We've been here at the PICU since about 11:30 last night (it is about 8 am as I write this). Almost everyone has given us a quizzical look and asked "Didn't you guys go home the other day?" Indeed we did, but apparently we just can't stay away. We're waiting for the ultrasound folks to come by and take some pictures of Ginny's guts. Please pray that whatever it is that is upsetting Ginny's tummy, we can get it easily fixed.
Saturday was a pretty good day. Ginny has learned how to eat from the bottle fairly well. We were instructed to give her whatever remained of her feeds via the N-G tube and a food pump. She did well with this in the morning, but as the day progressed she would take less by mouth at each feed. By the afternoon she started spitting up as much as we were pumping into her. It seemed like someone told me to use my kid to produce foie gras.
Sunday morning was pretty good, too, but it deteriorated a lot faster. By 1 o'clock in the afternoon she was spitting up (read: projectile vomit) as fast as we could pump it in. We stopped and called our practitioner. She told us to lower her feed volume and space the feeds out to 4 hours instead of the 3 we were originally instructed. The 5 o'clock feed went well, until the 9 o'clock feed. That's when she launched 2/3 of her 5 o'clock feed at Rachel. The remaining 1/3 went down the front of my shirt about 30 minutes later. We called our practitioner and she told us to take Ginny directly back to the PICU.
We've been here at the PICU since about 11:30 last night (it is about 8 am as I write this). Almost everyone has given us a quizzical look and asked "Didn't you guys go home the other day?" Indeed we did, but apparently we just can't stay away. We're waiting for the ultrasound folks to come by and take some pictures of Ginny's guts. Please pray that whatever it is that is upsetting Ginny's tummy, we can get it easily fixed.
Thursday, July 15, 2010
Enough Said
That's Ginny, asleep in her crib, at home. In a couple days life will begin to approach "normal" - whatever that is. I'll keep posting updates on her continued progress getting off the feeding tube. It's good to be home. Thanks everyone.
Wednesday, July 14, 2010
Homeward Bound
The past four days have been considerably less than exciting.
Our Occupational Therapist Christine left us for the weekend with a plan to get Ginny eating. As usual, Ginny had plans of her own that didn't exactly match up with ours. The goal was to get her eating 65 mL through the bottle by Monday. We would do that beginning with 3 oral feeds on Saturday, then 4 on Sunday, working our way up to all 8 feeds through the bottle. Saturday started off great with Ginny taking 20 mL in the morning, but decreasing with every feed after that. Same on Sunday. She just didn't seem interested.
When Christine returned on Monday, we tried with a different type of nipple to see how Ginny would respond. She did well in the morning, but then continued to lose interest as the day went on. We removed the feeding tube for a few hours yesterday morning to see if that was interfering with her swallow, and to get her into a hunger-satiation cycle. That wasn't working either. Rachel stayed at the hospital last night with Ginny to try to get her in the habit of eating by mouth at every feeding. Nothing seems to be working. It really is quite discouraging.
This morning during rounds, Dr. Saidi (cardiology) suggested to Dr. Malhotra that perhaps since we live in Gainesville, and we are pretty smart and responsible parents (sadly, a lot of their patients are not) that we could take Ginny home with her nasal-gastric tube and continue to teach her to feed at home. "Would you be comfortable with that," Dr. Malhotra asked. "Can I bring the car around now," I replied. Things don't quite move that quickly around here.
This afternoon we have been going through the discharge plan - learning how and when to administer her various medications, how to work the take-home feeding pump we were given, and how to make sure her nasal-gastric (NG) tube is in her stomach correctly. Shortly she will get her car-seat test. We have to strap her in her car seat to make sure she doesn't have a freak-out that will require medical attention.
Tomorrow morning Ginny will head down to radiology for another swallow study. Hopefully she will be able to graduate to the standard-flow nipple. If she passes, we'll switch nipples. Either way, we're switching cribs. In the afternoon, we're strapping her in the car seat and heading to the house. Tomorrow will be a very good day.
Our Occupational Therapist Christine left us for the weekend with a plan to get Ginny eating. As usual, Ginny had plans of her own that didn't exactly match up with ours. The goal was to get her eating 65 mL through the bottle by Monday. We would do that beginning with 3 oral feeds on Saturday, then 4 on Sunday, working our way up to all 8 feeds through the bottle. Saturday started off great with Ginny taking 20 mL in the morning, but decreasing with every feed after that. Same on Sunday. She just didn't seem interested.
When Christine returned on Monday, we tried with a different type of nipple to see how Ginny would respond. She did well in the morning, but then continued to lose interest as the day went on. We removed the feeding tube for a few hours yesterday morning to see if that was interfering with her swallow, and to get her into a hunger-satiation cycle. That wasn't working either. Rachel stayed at the hospital last night with Ginny to try to get her in the habit of eating by mouth at every feeding. Nothing seems to be working. It really is quite discouraging.
This morning during rounds, Dr. Saidi (cardiology) suggested to Dr. Malhotra that perhaps since we live in Gainesville, and we are pretty smart and responsible parents (sadly, a lot of their patients are not) that we could take Ginny home with her nasal-gastric tube and continue to teach her to feed at home. "Would you be comfortable with that," Dr. Malhotra asked. "Can I bring the car around now," I replied. Things don't quite move that quickly around here.
This afternoon we have been going through the discharge plan - learning how and when to administer her various medications, how to work the take-home feeding pump we were given, and how to make sure her nasal-gastric (NG) tube is in her stomach correctly. Shortly she will get her car-seat test. We have to strap her in her car seat to make sure she doesn't have a freak-out that will require medical attention.
Tomorrow morning Ginny will head down to radiology for another swallow study. Hopefully she will be able to graduate to the standard-flow nipple. If she passes, we'll switch nipples. Either way, we're switching cribs. In the afternoon, we're strapping her in the car seat and heading to the house. Tomorrow will be a very good day.
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