Wednesday, May 20, 2009

Lesson Learned: Part 2

We got Ryan and Gracie up and ready to leave. Ryan was upset about having to go to school, and Gracie was crying, not opening her eyes. I gave Gracie some more pain medicine, put in her eyedrops with Bill's help. I snuggled Ryan for a few minutes while Bill was putting our bags and coffee in the car, then out the door we went.

We dropped Ryan off, and as we were driving away, I saw him in the rearview mirror. He just looked so sad. Ok, kid, that's enough with the heart string pullin' already! Bill and I drove separate so that if we got a good report, he would head on to work.

We find the place, and park. Now that is quite the feat for me, since I am driving the full sized truck downtown, and parking in a garage. Go me! We find the office with no problem, sign in and start filling out yet another mountain of paperwork for yet another Dr's office. I have to say, I'm getting pretty good at them.

Then the wait began. We got there at 10 and weren't seen until a little after 12. Thankfully, Gracie slept most of the time. When she did wake up a little, I was able to get her to finally drink. She hadn't had anything since the night before, and very little at that. She wasn't acting awake, but when I put the sippy cup in her hand she immediately grabbed it and drank the whole thing. I offered more, but she was done. That was a relief, since I had been wondering if we were going to be admitted since she wouldn't drink, and didn't want dehydration to be added to our list.

We finally saw the Dr a little after 12. He came in like we were there for just a routine check. Very layed back, no problem, don't see why everyone is anxious type attitude. We didn't click very well. He proceeds to examine her eyes. Bill and I have to hold her down. He does a very poor attempt to open her eyes, so I do that part too. He puts the dye in, checks with the blue light for about 10 seconds each eye, says, "Yup, looks good." and is done. Now, since I was the one prying her eyes open, I KNOW he didn't get a good look. He maybe saw a quarter of her eye. Then Bill asks what her prognosis is. Will she be able to see, will there be any problems with her vision if she can see? His response, "Yeah, she might be blind, or have problems, but there's no real way to check it yet. Can she read a chart and point to animals or colors?" Um, no, she's 15 months old. No genius child here, just a normal development girl. Nope, she can't read yet, can't talk in full sentences, should I be worried?!! (Read sarcasm).

About this point, I am completely done with this man. I know he has no clue what he's talking about, says since he can't check her eyes out better without putting her under general anesthesia that that's all he can do for today. See you next week. Yup, that's an appointment we will not be making.

So Bill heads off to work, I head home. I meet up with my friend Shannon on the way, and she spends a moment with Gracie. I tell her how upset I was with the care I received, so she starts calling her eye Dr to see where we should be referred. We parted ways with her awaiting a call back.

I call Heidi once again, and she is livid for me. Thank you, Heidi for all your hard work getting us through this! She starts calling around, and gets me a Dr at Baylor that is the creme de la creme for Gracie's problem. I call the office when I get home, and let them know the issues. They call back after checking the schedules, and I get an appointment for Tues. at 3:30, but was told that I was a work-in, and to expect a wait. No problem, I'm getting good at waiting.

That evening, Gracie opened her eyes, and actually played for a bit. She picked up a ball off the floor with a purpose, threw it, and went and retrieved it. SHE COULD SEE!!!! I called everyone under the sun, and grinned like a fool for the whole evening. My daughter really was blessed.

The next morning, Gracie was back to not wanting to play much. She had slept through the night (12 hrs) and had woken up in pain. I gave her pain medication, a little bit of pediasure, eye drops, and she went right back to bed. She only got up every 3-4 hrs, right about the time the medication was wearing off. That afternoon was her appointment, so we go, this time just me and Gracie. Bill had to work, and since Gracie had shown improvement, he was feeling a bit more reassured that everything really was fine. I was as well, but I wanted true reassurance that we were doing all we were supposed to do.

We get to the new Dr's office, fill out more paperwork, and proceed to wait. We got there about 3, and I had really expected to wait for quite some time. Gracie was doing her repeat of yesterday, and was ready to play. She put on quite a show for all the old people there, being cute as a button. They called us back right at 3:30. I was shocked. We went in and were greeted warmly by a couple of resident dr's. They assured me they wouldn't do the exam until Dr. Hammil was ready, and would do it in one fell swoop. The got Gracie's history, and a few minutes later Dr. Hammil came in. What a great man. He had a sense of humor without being arrogant, answered all my questions before I had time to ask them. He was wonderful. And by the way, he could tell that Gracie needed an immune system check up right away, a thing her pediatrician didn't pick up until I asked for it.

The exam wasn't fun, but it was worth it. She wasn't so much in pain, as scared. He opened her eyelids with a speculum that kept them open, and was able to truly assess her eye. While he was doing that, he had one of the residents checking the ingrediants of the spray that got in her eyes. I was told it was a peroxide burn, and while that is still bad, its not as bad as an alkaline burn that we were thinking she had. He told me that it was healing nicely (which I was able to see for myself, and could already see new growth to both eyes). He prescribed an ointment that has a steroid and antibiotic, instead of using the drops we were currently using. And he said she should make a full recovery and have no lasting vision problems.

What a relief! Today, she is playing a little better, but has still be really sleepy. Here is a video of how she typically plays right now. She keeps her eyes closed as much as possible until late afternoon when the sun is going down.

Gracie 05-20-09 from wmmiller74 on Vimeo.

We are both so grateful the prayers and concern shown by all our family and friends. We couldn't have made it through this without all of you. Your prayers have made Gracie a walking, seeing miracle, and we thank God everyday. We rejoice that she is getting better and cannot thank each and every one of you enough.

Lesson Learned: Part 1

Its been a rather busy, crazy, stressful few days around here! It all started on Sunday. Here's the full version of what transpired, now that I can actually think a bit to write it all down.

I worked Saturday night, and got home Sun. morning about 7:15 am. I went to bed by about 8 and was sleeping soundly. About 12:00 that day, Ryan thought it was a good idea to climb up onto the dryer and get the Dreft laundry stain remover bottle down and squirt Gracie with it. Lots of fun, right? He proceeded to coat her entire head in the stuff. Gracie wasn't saying anything, no crying, and in general, just enjoying the fact that her brother wanted to play with her, as its not typically the case.

Bill walks in on them, and immediately takes Gracie to the bathtub and rinses her off. Since she's coated in it (sopping hair, face, etc.) this takes a little bit. After she's all cleaned up, she layed down for a nap.

She woke up about 2 pm and her eyes were swollen and she wouldn't open them. She just cried and cried. Bill went into our bathroom where all medications/supplies are at and was trying to look for any eyewash that he could use. Ryan was trying to 'help' but got kicked out of the bathroom. Ryan came crying to me, waking me up. No problem, its about time for me to get up anyway. I walk out to find Bill and see what the problem is. That's when I find Gracie all upset and swollen, and just not right.

I immediately start calling people. My first was to my sister Heidi, since she worked in an eye clinic for years, and knows alot about what I should do. No answer. Then my friend Shannon was called. No answer. Then I called my friend Rachael who is a nurse practitioner. No answer. Then I call my mother in law Sylvia to get her sister's number, since she is also a nurse practitioner. I was rather abrupt and to the point, got the number and hung up. Bless Sylvia, she didn't badger me at the time for more info, as at that time I'm still waking up, but trying to be coherant. I call Aunt Diann and no answer.

Shannon calls back, and says to call ER and see what I should do. I ask what she' s doing, and if she can watch Ryan if we go to the ER. She said she's got a few things to finish doing, but after that, she would be free. Fine. Thank you. (Understand, I'm still not freaking out, and don't consider this to be the emergency it really is yet).

I call Heidi again, still no answer. So I call Dad to get T.J.'s number so maybe I could get her that way. Dad asks what's going on, he gets a very abbreviated version like, "Gracie got sprayed with something, I need to see what to do".

I call T.J. and he immediately answers. I ask for Heidi and he tells me she's sleeping (bless her heart, I woke her up from a very deserved nap!). I start to tell him what's going on, he cuts me off and says, "Hold on, hold on, let me get her." I let her know what I know, that Gracie has been sprayed, her eyes are swollen and shut, and she just keeps crying. Heidi says to go to the ER. Its probably fine, but I need to go now. Thank you, Heidi for your help!

In the meantime, Bill wants to go to Walgreens to try and get some eyewash stuff. He gets in the truck and goes, now I have Gracie, who is continueing to cry, while I keep trying to make phone calls. I call the Dr's office, they tell me to call poison control and go to the ER. I call poison control, they tell me to go to the ER. OK, so now I KNOW I need to go to the ER.

I call Kingwood ER (where I work) to see if they can handle what we're coming in for (pediatric case involving the eyes). They say yes. I call my friend Demi who lives along the way we are going, but she is at the gym. Her husband Chris answers, I ask if he can watch Ryan while we're at the ER, he says no problem, bring him over. BLESS YOU!!! By the way, they have 3 kids of their own, ages 6, 3 almost 4, and 4 months. He's already got his hands full, but willingly takes my son.

So I quickly throw on some scrubs, brush my hair, pack up a bag for Gracie, grab Ryan's blanket, and out the door we go. On the way, Ryan asks me, "Mommy, are you happy for me?"

I question, "Am I happy for you?"

"Yes, are you happy for me."

I reply, "Well, no Son, I'm not happy, I'm sad. But I love you very much."

His little face crumbles and he starts to quietly cry. My heart breaks for him. My first thought is, I don't want him to shoulder the blame for what happened to Gracie. He can't possibly know that what he did would hurt her, he was just spraying, and though he knew he shouldn't and it wasn't water, he had no way of knowing that it wouldn't be 'like' water.

I reiterated over and over that I loved him, that he was going to have fun with his friends while Mommy and Daddy took Gracie to the Dr. By the time we got there, he was fine, went right in the house and started playing.

We arrived at the ER about 3:30-3:45, and were being seen by about 4-4:15. We got triaged and were quickly called back. Gracie was weighed, and it showed she had gained a whole pound! She was 19lbs, 8 oz! Yay for us! The Dr came in shortly after we got to the room, he had pH paper that he touched to her eyes, and it showed 9-10. Very bad. He checked the damage using some dye and a blue light, and says, "Oh wow, her cornea is completely gone.". Heart drop. The air in the room constricts. I'm trying to process this, but I'm having trouble wrapping my head around it.

He orders her eyes to be flush with a liter of fluid to each eye, under conscious sedation since she won't tolerate it any other way. The nurses start gathering things together, and they start the IV. Bill and I are holding her down for this, while she's screaming. They get it in, get one dose of the medication in to start to sedate her. Then they try to put in the lenses that will direct the flow for the flush to her eyes. Gracie screams, thrashes, and is obviously not sedated yet. She is being tortured. Bill and I both spoke up at that time, saying stop, she needs more medication. They get the Dr. , he orders one more dose.

Her IV stops working, and now they have to start it again. They get it in, finally, and give her another dose. She is finally manageable for the flushing, though she continues to scream, her thrashing is much more containable. It took over an hour to get it started from the time the Dr came in the room, till it was actually going. The whole time, Bill and I are trying not to lose it and start screaming at them. I'm thinking, its continuing to burn her eyes, there's already significant damage, HURRY UP ALREADY!!!!

In the midst of all this, I am getting various phone calls from concerned family/friends. I am sorry to all I talked to that I wasn't very coherant, but I talked to soooo many people, and between dealing with Gracie, and trying to relay our story, some people were lost along the way.

Since she was under conscious sedation, we were moved to a different trauma room. By now, Gracie was being managed by about 7-8 people, including anesthesia. We were told that the DR. had consulted the opthamalogist on call, and he recommended we be transferred to another facility downtown that would have the personell that could deal with our pediatric case. While waiting to be transferred, the Dr. checked her pH again, and it was still high, 8-9, so we did another liter to each eye, a total of 4 liters. Once that was done, the pH was checked again, and it was finally down to normal, a 7. So an ambulance was called, and off to Memorial Hermann downtown we go. I talked to Heidi right before the ambulance got there, and she prepared me for the possibility that Gracie might be blind. A very good possibility. I really hadn't considered this, so once again, big shocker.

I called Demi to let her know what was going on and to check on Ryan. I still didn't know when we would be able to get him, if we would be admitted over there, what we were going to do. Demi assured me that Ryan was fine, she just had an appointment the following morning, but until then, he was fine right where he was. I called Shannon to see what she could do, and she had to work Mon, but could drop Ryan off at his school. It was very hard to concentrate on making arrangements for him, when all I could think about was Gracie. I talked to Ryan for a minute, asking him how he was doing. He was having a great time, but he broke my heart when he asked, "Is Gracie gonna be ok?" I really didn't think he knew what was going on, but his little voice was so scared and tiny. I let him know everything was fine, and he went back to playing.

What a very surreal drive, riding in the ambulance. Gracie slept pretty much the whole way. Mom called me while I was riding, letting me know that everyone was praying for her, believing that a miracle was already taking place. I had a hard time concentrating on the conversation since the EMT person kept asking me for more info, and truth be told, I was just having a hard time in general processing everything. But I knew God was there, holding my Gracie.

We arrived at the next ER, and the DR on told us they had called for the opthamalagist on call to go ahead and come. There was nothing else to do but wait until then. By this time, Bill and I had had some time to process what was going on. I could tell he was having a very hard time with it. He blamed himself for it happening. He wasn't in the room. He didn't wash her enough. It was all his fault. I did my best to reassure that it was just an accident, and though we are both upset, it wasn't his fault. He couldn't hear me. All he heard was his guilt. We both had no idea that the spray could possibly blind her. We had no idea that we didn't rinse enough. We have learned a very valuable lesson, at a very steep cost. Soon we will be investing in a Hazmat cabinet that locks, since putting things up are not working.

Finally, the new Dr came, did a check of Gracie's eyes with more dye, and told us that yup, her corneas were completely gone, but it looked like there was enough stem cells around for regrowth. We were given antibiotic drops for her, and tylenol with codeine for the pain and sent home, to follow up in the morning.

By this time, it was 10pm and neither one of us had eaten, Bill not since breakfast. We called Demi to check on Ryan, who was sleeping, and let her know we would stop for food and be over. We dropped off Gracie's prescriptions, and went to get Ryan. He woke up, and just wanted me to hold him. No problem. I love you soooo much, Ryan! We picked up the prescriptions, and headed home. By the time we got inside, it was 11:30. We were all exhausted. I layed in bed with Gracie, Bill with Ryan. I couldn't shut my mind off. I kept replaying the day over and over in my head. Gracie would stir, and I would hold her and snuggle. About 1:30, she was fussing alot, so I gave her some tylenol with codeine. She finally fell asleep about 3, and finally I did too. I woke up at about 6 with my back killing me, and finally out of bed at 7 since there was no way I was going to get comfortably back to sleep. Bill was up as well, so we started getting ready for Gracie's follow up appointment.