Surgery update and weaning

Last Thursday was River’s eyelid surgery, and everything went as expected! Here’s a little timeline:

Jan 16th 10:00pm: Fed River formula, last food she will get until after the surgery.

Jan 17th 8am-11:00am: Try our best to distract River from the fact that she is very hungry and very thirsty, give sips of water. Fasting is terrible for a toddler! Next time, if there’s a next time, only ever take a child to an early morning surgery! Wish I had been thinking ahead when I accepted this date and time.

Photo Jan 17, 11 34 40 AM
Just after check-in

11:30am: Check into Mary Bridge Children’s Hospital/Tacoma General for surgery. Taken to ACU and slowly get prepped. Good news is that we find out they won’t insert an IV into her until after she’s been knocked out from gas! We were highly concerned about the IV causing her problems because she’s very difficult to get one in, runs in the family. We hang out in the room, watch cartoons and color while we are waiting. They give her Versed around 12:15, which will calm her down, and causes an amnesiac effect. We speak to the doctor, Dr. Pratt, who will do the surgery, and basically they explain once she’s ready, he will only work on her for about 4 minutes! They don’t even want us to leave the hospital wing because it’s so quick. The nurse takes River away, who was calm and cooperative by 1:00.

1:1o: Surgery prep & OR.

Photo Jan 17, 1 04 00 PM
Leaving for the OR

2:00: Doctor visits to let us know that everything went great and explains her after care. We are taken back to the recovery room, River is now awake and very unhappy. River was crying and shaking her IV hand all about. She was in pain, and mostly upset by her IV site. She does verbalize that her eye and hand hurt. The nurse asks us if we want to give her painkillers and I say YES. Get her comfortable! So they administer fentanyl and Ibprofen, and in about 10 minutes River is much calmer and starts licking on a popsicle.Photo Jan 17, 2 25 30 PM

2:30: Daddy leaves to go get brother from school, we want him to be here to see River, and all leave the hospital together.

3:00: we are finally moved back to the ACU out of recovery, River is much more comfortable but continues to get upset by the IV in her hand. Her eye is  very swollen, and blood occasionally tears down into her eye, I have to keep dabbing it up. Daddy and brother arrive soon.

Getting ready to leave the hospital

4:00: we get to check out! River is dressed and ready and so happy to get the IV out.

Home we go, it was an exhausting day, but very worthwhile and we know that in no time River will start feeling better and we will leave this behind us.

Our little girl did amazing, she’s a great patient, and old pro, and our little warrior. Daddy caught a very good picture prior to surgery that really shows how much River’s vision was affected by her Horner’s syndrome and Left Eye Ptosis. It’s not a pretty picture but it really illustrates how important this surgery will be for her. It’s much too soon to tell how her eye looks, it’s still red and swollen, even today, but getting better everyday too!

While waiting for surgery, a good picture of her ptosis
While waiting for surgery, a good picture of her ptosis

And now onto weaning news: Since January 2nd we stopped tube feeding her. Now it’s been going really good! She’s lost a little weight, but not much, and her drinking and eating are going well, but we’ve hit a little plateau. We hope to get it to pick up soon. We’ve had to supplement a few times in the last 19 days, she had a brief gastric bug she caught from brother a week ago, and the fasting with surgery also made me want to supplement. We only supplement at night, about 7oz of formula. And have done that about 5 times since Jan. 2nd. It’s been an amazing accomplishment to go this long and we sure hope it continues to go up!!!

4 days post op! Her eye is looking great, just a tiny bit of swelling still
4 days post op! Her eye is looking great, just a tiny bit of swelling still

Upcoming Surgery #5

It’s that time again, although minor, it’s still time for surgery. I’m nervous, and would love to postpone postpone postpone. But this simple little surgery could mean a world of difference to little River.

Today we had a crazy fast consultation with a cosmetic surgeon. He’s an expert in eyelid and facial reconstruction, and works on babies up to adults. Dr. Pratt is who we visited this morning, River was an angel even though we had to wait a long time. Even though I was put off by the fast paced crowded office, after doing research and then meeting the doctor I feel confident that he can fix R’s little eyelid.

River has ptosis of the left eye caused by Horner’s Syndrome, acquired when she was undergoing her very first surgery at 2 weeks old to repair the coarctation of the aorta, a tiny little nerve runs up the aorta to the left eye and unfortunately it’s a risk that is taken when having this type of life-saving surgery. When that nerve is damaged or severed it will cause constriction of the pupil, drooping of the eyelid and several other minor symptoms. Usually harmless, but in cases such as River’s the eyelid can droop too far and obstruct the pupil and vision. We are hoping that by clearing her vision she will, first of all have full sight!, second hopefully improve her gross motor function(walking etc…).

Dr. Pratt is confident he can do the most minor of repairs, that she is fortunate to have not been born with the disorder, or otherwise her muscle would be much weaker. So in order to fix her type of condition it requires one tiny incision in the crease of the eyelid. Recovery and pain should be very minimal. We will be doing the surgery at Mary Bridge, and it will probably take 3-4 weeks to get in for the procedure. I’m so excited that this tiny little change could mean so much for her! Can you imagine that whenever you simply look up or to the side you lose one whole eye’s vision? That when you are looking straight on you only see out of half of one eye? This little surgery is a huge gift I can’t wait to give her. And I won’t deny that it’ll bring me to utter tears to see my little girl have symmetry in her face, to be able to see the beautiful eyes she was born with and the perfect eyelids she had, then lost. To know that she will have the gift of seeing with both eyes! To see her face as it was always meant to be. She’s so beautiful, so gorgeous anyway, but to know that we will be only correcting what was already there! Whatever, I’m crying already.

Waiting for the Doc, behaving herself wonderfully

A Pox Upon Thee!!

Just as the end of summer approaches and we are gearing up for the upcoming Intensive Wean Clinic, our time has not been dull. River had two appointments last week: her GI check-up and then the visit with her Neurologist. Her GI visit was rather run-of-the-mill. Her growth looks good. She’s up to 24lbs 8oz. All her growth numbers indicate she’s still trending well, even though she has never made it back to the percentiles previous to her winter weaning. She’s about a 10% on her BMI, so healthy, but a little on the skinny side. We are going to cross our fingers that she doesn’t dip too low during the next wean.

The neurology appointment was a little more eventful. We saw the same pediatric neurologist, Dr. Makari, she saw exactly 2 years ago regarding her ptosis, which was dx as Horner’s Syndrome. Back then the doctor was more optimistic that it was partial and would improve. Well it hasn’t, and now that he sees her now, can say it’s complete and will most likely not improve on it’s own. He agreed with me that her ptosis (the drooping eye lid) was a little worse. My concerns have been that with certain factors (brightness, swelling, crying, sleepiness) her eye is nearly closed. He ran her through a few neuro tests, and we discussed all of her motor skills, in particular how her walking is. Her movements are still quite jerky and wide-stanced, like you would see in a very new walker, also the occasional dizziness or off-balance nature. While there could be other issues going on that we are unaware of, it came down to that we need to fix the most obvious issue and see if it’s that. That being her ptosis obstructing her vision. It may be throwing her off enough to affect her balance, if her left eye is occasionally obstructed. I’m sure you can well imagine! So the next move is to return to her opthamologist and have a consult for surgery. Her appointment for that is in 2 weeks. More Surgery?!?!? I know right. Although this could really increase her quality of life! And it’s a small procedure, out patient. And hopefully it’ll be another check mark of triumph in River’s books.

More updates about that after her eye appointment. Now on to the news of today: VIRAL(or bacterial) RASH. Yay! OMG is all I have to say. I’ve been lucky to have dodged any childhood contagious rashes or mystery rashes up to this point. My poor little baby girl is covered in horrible red spots and plaques. It’s one of the most disturbing things I have experienced as a mother, and that says a lot. Rashes totally freak me out. This looks very similar to chicken pox. And one doctor even thought it was! Last Friday we noticed what looked like a bug bite on her leg, a really bad bug bite. No biggie though, didn’t seem to bother her too much. Saturday: morning she woke with little red bumps covering her knees, cheeks, and a few on the arms. I thought bug again, living in her sheets! I tore apart their room. No bug. Sunday: more spots!!! Her condition was worsening, she even seems grumpier. I took her to urgent care. First doctor claimed chicken pox, even though she’s been vacinnated. Second doc seemed to feel it was more Impetigo-like, like I thought(from google research). Which is a contagious bacterial rash. They prescribed an antibiotic and sent us home with a re-check in a few days. I gave her the medicine immediately. Monday: MORE SPOTS!! We are now quarantined at home this week. So far no spots on the rest of us, and no friends reporting similar rashes. Where this came from (my guess the children’s hospital) who knows. She’s even going a little hoarse from it, not sure why it’s affecting her voice. Tuesday: Spots may be, possibly, hard to say, getting lighter? I hope so! We just had a re-check with her regular pediatrician, Dr. Oltman, who feels it might be more viral in nature. But we are already doing everything possible. So only thing now is to continue the meds and wait it out. OMG I HATE RASHES. Poor Little River looks like she’s had a pox cursed upon her!!

Rash Town

So this Friday we were supposed to go up to Seattle Children’s for her swallowing study that the NP wants for the feeding clinic. I just rescheduled that to the following Monday, hoping that gives us enough time for this to go into remission. I can’t wait until my psychosomatic itching goes away, because I’M GOING NUTS. River seems more comfortable than I!!!

A Busy Summer

It’s been a very busy summer with the whole family! River and Ewan and I spent a near month in Utah visiting our family and friends. We traveled from Washington through Idaho, into Montana, down through Yellowstone, into Wyoming, and on to Utah. 1200 miles one direction! The kids did great on the road. We got to see many friends and family along the way, and then spent many hot days down at our relatives. Highlights of the trip were the many water slides we encountered. Both Ewan and River went down them from the first time in their lives.

Old Faithful, Yellowstone, July 2, 2012
Practicing the hoola hoop

Now that we are back home after our long trip it’s back to business with River’s treatments. Throughout the summer River has improved in her motor skills, her walking and running and jumping have all gotten better! She’s getting faster and taller all the time! Her drinking fluids also improved during our hot months. She’s up to around 5 ounces a day now of oral fluids, which is a pretty big improvement over around 1-3 oz. in a day.

Waiting for the geyser

Last week we had feeding therapy with Jennifer and she managed to get her to eat half of an avocado and drink a juice box. Those food themselves are not unusual but the amount was! Although River is usually full of energy and couldn’t sit still during the session, she mostly ran back and forth. We’ve also decided to stop the use of the Periactin, we think that it’s usefulness has declined(which is typical).

This week we’ve traveled back to Seattle Children’s Hospital for an appointment with the nurse practitioner that works with the Intensive Feeding Clinic. She wanted to clear River medically so she can attend the clinic. She was very impressed with River’s progress so far, and her previous weaning, and overall condition. She gave us more insight into the program, and assured us she will try to help us find a way to stay up in Seattle during. So far this will prove the biggest challenge. I spoke to the Ronald McDonald House last week and we are a whole 4 miles too close to qualify for housing. Yes that seems ridiculous but they must have their guidelines. But they may make an exception. We also have to go through her insurance first to see what they will cover as far as housing and/or gas. We may end up doing the drive everyday (which is of course a last resort for us). It’s a two-week long program (10 actual days), and the commute would be over an hour in each direction usually. The NP also wants River to get a swallow study done. She’s never had a real swallow study, and they have to be completely assured River has no swallowing dysfunction before attending. So that’s on the books soon. So we definitely have some details to work out before we go to the Intensive Feeding Clinic. But we are scheduled to go September 10th.

Today we go back to Jean for physical therapy. River needs to be seen periodically to make sure she’s progressing. I believe Jean will see many improvements. Next week we will check up with her GI clinic. Also I scheduled a check-up with her neurologist. He previously saw her for her Horner’s syndrome back as an infant. I have been wanting to follow up about her eye for sometime. There are times when she has her left eye closed all the way, and I’m concerned it’s impeding her vision, or going to cause her eyesight to decline faster. We may need to see her ophthalmologist sooner than expected as well. We will also be discussing possible balance or other neurological conditions that might be causing River movement and gait problems. She does lose her balance easily and appears to get dizzy at times, especially on a nonuniform surface.

So there will be many new things coming up for River this month and next! We are still working at having a great summer as well. We will be leaving this weekend for the coast, and we are very excited to show River the ocean(not just the sound) for the first time! The kids, even the dog, get to have another great adventure soon.

In other toddler news: we had a recent potty training attempt. It will ill-fated though. I know River is ready to start, she is showing great signs and interest. We bought the undies and got the potties out. We are also trying to move our rooms around in the house and I spent the weekend cleaning and painting the upstairs room for them. Daddy spent the weekend also cleaning and working. We just didn’t have the time to dedicate to potty business. Next week things will be a lot more settled and we can try again! 

At the Girls’ Lunch, she loves Salmon!

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