Tuesday, February 24, 2009

Paige's Eyes

Paige 20 months old

There are dates that are in my head that I never forget. I think it is an endearing quality but can make Bill nuts at times especially if it is one he is supposed to remember! Well February 24th is one of those dates. This was the beginning of the end of the road that simply put, was hell, for Paige.

The day this little cast came off she had her first "red eye".

It all started the day this cute little cast came off the first week of June 2003. She had a little red spot on her eye that did not really seem to bother her. As the weeks went on it got bigger until she woke up right before the 4th of July with a painfully red and swollen eye. An emergency trip to the ophthalmologist at Children's and we left with an antibiotic for peri-orbital cellulitus and possible surgery to remove the huge chalazion that was formed.

A not so happy July 4th weekend. Fortunately, the antibiotics worked well as cellulitis can be dangerous.

This became one of our countless trips down to Children's. Not just for the ophthamologist but to try and find the root cause of why she seemed to develop this severe form of chalazions and why nothing helped. We did allergy testing, saw infectious diseases where they drew huge quantities of blood and then were impossible to get results from! We went to a homeopathic doctor, eliminated foods even though she did not test allergic to anything, saw a dermatologist, along with our own pediatrician that we ended up switching during all of this.

Halloween 2003, looking pretty good.

She would often wake in the morning with her eye glued shut with drainage. Often times both eyes were stuck so she could not see when she got up, she was only 20 months, so this was scary and frustrating for her. She could not stand bright light and hated going outside to play in the summer for more than 5 minutes as it made her eyes hurt. She could not tolerate to wear many clothes and spent much time wrapped in a soft blanket on the couch. I don't think she could tolerate much in the way of sensory overload, her little body could not process her eye pain and much else. She was grumpy and irritable, yet sweet and pitiful. It was heartbreaking and very frustrating to be doing so much to make it better and not being successful.

Recovering from her last surgery, December 2004

We spent hours holding cold or warm washcloths on her eyes. Putting drops and ointments in, doing "lid scrubs" on her eye lids. Giving Motrin and basically doing anything she wanted or needed to feel better.

She had four surgeries to open and drain these. Throw in Lindy's 2 eye muscle surgery's and I pretty much knew the entire outpatient surgery staff. It got to the point with the last surgery that I only had to call and tell the nurse that she had another one and they just went ahead and scheduled her surgery without even seeing her. Her last surgery was 2 days before Christmas in 2004. I called and talked to the nurse relaying a message from Paige to her doctor. "Paige wants new eyes for Christmas." That was the week before Christmas, I received a call within an hour that her doctor would be working her in and giving her "new eyes" the 22nd.

Christmas Eve 2004 with Lindy and her new eyes!

Unfortunately, this was short lived relief, as usual. She had another case of peri-orbital cellulitis 3 weeks later. At this point we were told we would have to manage the situation as they did not know what else to do. The cellulitis and the chalazion that was forming would probably lead to another surgery. Something in me snapped, could have been the pregnancy hormones but enough was enough. I started my online search for other ophthamologists. I already had the best one in the city and obviously what we had was rare so I knew I would have to look everywhere. I called Mayo, looked at John Hopkins web site, spoke with people in Florida. I ended up finding the head of Pediatric Ophthamology at Cleveland Clinic Eye Institute. They could see her in 2 weeks. Unheard of!

2 weeks before going to Cleveland Clinic

So off we went, Paige and I, on a snowy morning February 24, 2005. I was 31 weeks pregnant with Erin and I know my family was less than thrilled about me driving 3 hours alone. To say I didn't care was an understatement!

This girl and I have spent some serious time in doctors offices and laying on a couch with cold cloths and a remote. (Picture September 2008 age 7)

We arrived for our appointment after lunch and were called back to a room. The nurse began taking a very detailed history. Of course the day we were there Paige's eye's looked better than they had in weeks! I had brought pictures of what she looked like so they could see exactly what I was talking about. When I told this to the nurse she replied, " this is a good day? You really have a problem here." Yep, that's why we're here.

October 2004 age 3

Two hours later after a huge history, a huge eye exam, the resident exam, we finally meet "The Man". He listens to everything, loves the pictures (went to scan them before we left!) and says to Paige he has some very magic medicine for her. I about laughed in his face and I think he knew it. He prescribed Erythromycin orally and Erythromycin eye ointment. I almost fell off the chair. That is one of the oldest antibiotics around! Shouldn't we have thought of this like 18 months ago?? He assured me it would help. He sees about 3-4 cases per year like Paige's. The condition of chalazions itself is not rare but the severity that she had was. It works he said. She would be on it indefinitely but what choice did we have at that point. He said that this severe of a condition can damage the corneas of the eyes. Fortunately she did not have any damage at this point but he felt she needed aggressive treatment so that she did not have permanent damage. He took a couple of pictures of her and told us he needed to see us back in 3 weeks. He said he understood that I was pregnant and nearing delivery but it was "imperative" that he see what her eyes looked like and make any adjustments to the medication.

That was the first of 5 trips to the Cleveland Clinic that year. I came home and filled that prescription and honestly did not believe it would work. I had spent no less than $60 on every itty bitty tube of eye cream and medication over the last year and a half, the Erythromycin was $10.

It worked! Not overnight but very gradually. We would return and he would assess her progress, compare photos, and adjust the dosage. We gradually weaned off of it by stopping first the ointment and then the oral. We had our final appointment 9 months later where her doctor asked her to marry him. I told Paige since she likes princesses so much that was an offer she should seriously consider. He offered to make her a queen! But still she would not speak other than when we left she gave him a hug and told him thank you. She had not spoken a word at any appointment, to the nurses or the doctor.

The lesson of this story for me was to always be my child's advocate. I almost gave up and threw in the towel and thought we would just have to live with a chronic painful condition. Thank God I found our doctor and Paige is happily living her summers out in the sun! She occasionally gets some little red spots on her eyes but nothing that does not clear up in a day or so. She remembers having "red eye" which she named it. She remembers driving far away to the doctor and going to get a brownie at the bakery in the hospital before we started our trek home. She still thinks those were the best brownies!

Swimming in the Atlantic, September 2008

Thank God that she is a strong willed and stubborn child. She loves with all her heart and is also the most persistent when she wants or needs something. But she also has an incredible tolerance for pain and discomfort (can be tricky when she ruptures her ear drum or breaks her arm! Ask her she'll tell you!). She is smart, witty, sweet, generous, a little sassy, happy, and has beautiful eyes!

We love you Paigee and are so glad you are over your "red eye". You are a beautiful girl, inside and out.

Age 7


Anonymous said...

Paige sure is fortunate to have such loving and caring parents. You sure know how to get tears from me, Margot! I never knew any of your kids had problems!

I'm allergic to both penicillin and erythromycin myself!

Uncle Bobby

Jennifer James said...

I remember all of this!! I am so glad you got everything figured out and she is such a happy healthy girl!! She is so lucky to have parents like you!!!

Gretchen said...

I am right there with you Uncle Bobby.

Kyle, Ethan, Paige, Lindy and Erin are so very lucky to have awesome parents and each other. It is the good times and the bad times that bring us closer together.

Persistence always pays off and we know Margot has it!!!