Monday, February 11, 2008

Monday, February 8, 2008 - Update

You know how you worry yourself sick about something and then it's not as bad as you imagined it to be? Well, sometimes it's 10 times worse. That was the case today. First, I got up at 5 am and somehow managed to keep Olivia awake until her appt at 9:30 am. I think I need some kind of award for that. She would just look at me as if to say, "Mommy, why don't you let me sleep?" Once we put her in her car seat, we thought all was lost, but Ryan and I kept spontaneously shouting "Hooray!" to keep her awake. It worked. We got to the appt. only to find out (once we'd been there for a little while) that everyone in the office was sick. They only have two techs who perform the EEGs. One of them was home with a sick daughter, the other who was there was hacking and coughing and believed she had a severe cold or bronchitis. We talked about rescheduling, but decided against it for many reasons. One, Olivia had already been exposed. Two, that would mean she would have to remain on the phenobarb for that much longer and we can't have her throwing up every few days. The longer we postponed it, the longer Olivia would have to suffer through with the medication. Three, how can you guarantee everyone would be healthy then? Four, we would have to go through the sleep deprivation all over again and that wasn't easy on any of us. Plus, Ryan would have to take another day off work. So, we put our faith in God, we made the tech Purell her hands about 1000 different times, we made her wear a mask, wipe her equipment down with Lysol and prayed some more. I usually bite my tongue when I write the updates because I don't want to offend anyone, but why in the world didn't they call us to reschedule????? How ignorant do you have to be to let a 23 weeker come in for an EEG and expose her to an environment like that? Especially when your office deals with premature babies? Then, we had to keep reminding them to wipe things down and Purell their hands again. They were all snickering at us and referring to us as neurotic parents and you know what? I couldn't care less. Have they lost a child? Have they come close to losing another one? Have they watched their child be on a ventilator for two months? I love my daughter and I will do everything in my power to keep her safe and healthy. Unfortunately, I think I failed today. After all we have done over the past 5 1/2 months and all we have sacrificed to keep her healthy. We have kept her away from her grandparents. I cancelled my shower that I was looking so forward to. I haven't seen my friends or my family. I haven't even met my newest nephew, Kaleb. Everything that we've done. . .all seemingly down the drain. I have never been so angry, so upset, or so scared in a long time.

The only positive thing is that her EEG was normal which means that we get to start weaning the phenobarb and in 20 days she will be done with it. But, at what cost. . .I don't know. We came home and I took a shower, Ryan took a shower, Olivia took a bath, we washed the diaper bag, blankets, car seat cushions and Lysoled everything down. Now, we just pray that all three of us remain healthy.

9 comments:

Anonymous said...

Wow. I just don't know what to say. You have every right to be furious. I'm furious for you. After all you've done to protect her and something like this happens. I'm really aghast, seriously pissed off (sorry for the expletive, but this situation definitely warrants a few). I'm so sorry that you have to deal with this. Let's just hope that all your "neurotic" (the nerve!)parenting these past months have not been in vain and she is strong enough not to get sick. And on a VERY positive note, I'm so glad to hear she won't be needing the phenobarb for very much longer. Yay Olivia! She's going to be okay, Jodi. She's a fighter.

Kerry

Sarah said...

I don't know if this helps or not. I can hear your frustration and worry in your post, but Olivia is far more robust now than she was as a 23wkr. You went above and beyond keeping her healthy today. Remember, the clock ticks up for us. Every day that goes by is another day of growth, new lung tissue, and new health. Trust me, I understand! We've been quarantined (literally on doc's orders) since October lol!

Anonymous said...

I'm so glad to hear she won't be needing the phenobarb!! YEA OLIVIA!! I believe your "neurotic" actions are quite appropriate. Maybe they don't understand since they have probably never had a premie. Keep up the good work Jodi & Ryan!

Juliette said...

Don't beat yourselves up. You have done amazingly well at keeping her healthy and away from any environments where she might get sick. The office really should have called you guys and at least explained the situation with the ill personnel and then left the decision up to you. I'm so excited that she is coming off the phenobarb now. That's great. She sure is a cutie!

Anonymous said...

As I read your post I just smiled to myself and said, "You go Mama Bear!" Don't let anybody tell you what to do for your daughter. You are the mom. And then, as you say, just try not to let it bother you. Sometimes that is the hardest part - to not fret over what people think about you. You are an amazing mom and God gave you Olivia and Logan. You were hand picked to be Olivia's parents. I will pray that God protects you all from illness and if that is not His will that He will walk close through any illness. I love seeing all the miracles and seeing God get the glory.
Laura

Anonymous said...

I will be praying extra hard that you guys don't get sick. I would recommend that you direct a letter of complaint to the manager of the facility -- I'm not sure where you had the EEG done. If you express your concerns to them too, maybe they'll change their procedures and be more cautious in the future. Won't help this time; but it might save somebody else.

Hugs...Shelly K.

Anonymous said...

I agree with Shelly K. I think you should definitely let Olivia's doctor know about the situation. This should be a place where they should understand your concerns, not think lightly of them. Your doctor needs to know.

Miracles said...

Jodi my heart goes out to you for having to go through that.

I know that feeling of your heart dropping into your stomach and loss of breath, when you hear that someone is sick and has failed to tell you. This happened to us just before Christmas. A 10 minute visit around a sick child, put my girl's in the hospital with pneumonia. All because if they had told us their child was sick we wouldn't have come over. Hmmmm....I wonder why?

Some kids lungs heal quicker than other's, my girl's are 2 and a half and still get sick easily. Their lungs have not fully healed from being vented.

Don't blame yourself for this. There was nothing you could have done to avoid this. They should have called you and let you make the decision on whether or not to take her in.

I hope nothing happens and Olivia remains bug resistant!!

Take care,
Shannon

Anonymous said...

Wow whatta awful situation to have to be put in, making the choice whether to continue with the test, meanwhile exposing your little one to something she doesn't need to be exposed to..I for the life of me can not figure out why people don't get it, Kellar will be 2 in April and some don't realize that just b/c he looks like a big boy, he still has a lot of prematurity issues that rear their ugly heads at times and he catches everything and then it lingers around for weeks and weeks, our latest battle being the flu..Hang in there!!!