Back in the hopital

Hello. Sarah asked me to make a quick post.

Gracie had a fever, so the lab in lake city drew blood, and something grew on the petri dish, so Gracie had to go back to Nemours in Jax. Everyone thinks they contaminated the sample when they drew the blood (again) but they need to be in the hospital as a precaution. To top it off, they were supposed to fax the test results and send the sample to Nemours so they could identify the suspected bug. Well, they sent it to Shands in G-ville. Brilliant. Naturally, Shands has no idea what is going on, and don't know what sample we are talking about or where it is...

So, they had to have another blood draw in Jax, and are waiting for results. Preliminary data suggests that Gracie's potassium is low. The doc thinks the blood sent to the lab was hemolyzed (all of the blood cells burst - happens sometimes when too much suction used to draw blood). They'll draw again and check again... :(

In summary, they feel good, and think all is ok. That said, they will be in the hospital for a couple more days until it is all figured out. In the meantime, hospitals are very boring - no internet or anything - so feel free to give Sarah a call. I'm sure she'd appreciate it. 386-344-1095.

Uncle Mack

Its super-late but...

I am so overdue for an update and our Gracie-bean could use a few prayers.

So, the stomach bug took a little longer to kick than anticipated, but she did wind up kicking it and things started getting back to normal. There was no need for a blood transfusion. We saw Dr. Joyce last Wednesday and he said that Gracie looked pretty good for the most part, but darnit the mystery tummy rash has returned! Total bummer. Dr. Joyce is again worried that we're dealing with GVHD and we are now back on what is called a "therapeutic dose" of CSA for the time being. While I am totally disappointed in this turn of events, it really is the safest and easiest option to determine if in fact it is GVHD that we're dealing with. I told our nurse that while Dr. Joyce may be right and I am on board with restarting CSA, I am not so sure that our mystery rash is what he thinks. So as an experiment, I have discontinued my constant application of the mystery-rash-killer-ointment aka triamcinolone (with Dr. Joyce and Nurse Paula's approval) to find out if CSA will handle the rash. Its been 5 days, and so far I am winning. The rash is still there (thank goodness its not itchy) deapite our CSA increase. The bad news is that this will probably mean that my poor peanut will need another skin biopsy to determine what the heck this crazy rash is. We'll just have to wait and see.

Fast forward to yesterday... Gracie spiked a fever and as per protocol, off we went to the ER for cultures and antibiotic. It was here that I can honestly say I began to miss our central line. They had to draw blood for the labs and unfortunately, Gracie has little baby veins and she was slightly dehydrated, so they were unable to get an IV. So they did a heel prick to get the blood sample and then we got our medicine as a shot. All in all, too many needles in the Peanut. She was not a happy camper. This morning she woke up and our fever was still hanging around, so we had to go back to the ER for another shot of antibiotics. :( Luckily thats all we had to do. So far, her cultures from yesterday have not grown anything, so there was no need for a second blood draw. We got home and Gracie took a long nap. She woke up and her fever was up again, but after some tylenol and a nice bath, she was cool and comfortable again. Here's hoping we wake up fever-free tomorrow.

So for all of our adoring fans, we ask for prayers against infection and prayers against GVHD. We would love to be able to begin our wean again. As long as we are on the "therapeutic dose" of CSA, Gracie must have regular blood draws to check the level of meds in her body. With no central line, this will not be a pleasant process for Gracie and I hate for her to be poked and prodded so frequently.

I hope I have better news for our next update.

So...

Gracie is still not quite 100% over our bug, but she is better. She started feeling better the morning we went to see the doc, of course, and we were sent home feeling a bit better about how long its taking her to kick it. She's still tiring pretty easily and getting crabby once she gets tired. We head back to Nemours tomorrow for our regular appointment and I'm looking forward to getting some bloodwork done to make sure that everything is ok. My present thinking is that her hemoglobin might be a bit low (this happens when she gets sick) and thats why she tires so quickly. Maybe a little boost of blood can perk her up a bit more. She's happy and perky when she wakes from her naps and such, but she just doesn't seem to maintain the energy for as long.

She's eating and drinking fine now though, and I am thankful for that and knowing that she's not feeling quite so yucky anymore.

xoxoxo.

Spoke too soon...

It turns out that Gracie's tummy problems are not quite over. She's still having yucky diarrhea and she's started vomiting a bit today. I switched her back to clear liquids (apple juice, pedialyte, and chicken broth) from her normal toddler formula and the puking has subsided, but she's completely refusing solid food. She only wants to drink and drink until she is full. Poor baby- her tummy hurts. :( We head to Nemours tomorrow so they can get a look at her.

I'm hoping all will be well, but prayers are definitely appreciated right now. She's been doing so well for so long... its almost like we were getting too comfortable. :(

P.S.

Gracie has had 4 baths since Monday (when she got the ok for a bath) and she has loved every one of them. :) Thank goodness for the bath ok, can you imagine a stomach virus without baths?????? Yikes.

Sorry for not updating after surgery...

but things for the most part went well.

The surgery itself was quick and easy. As a matter of fact, they had to page us up to the floor when she was done because we were still down in the cafeteria having a quick bite to eat.

We got back up to recovery and she was sleeping well and comfortable. When she woke up, she was fussy, but nothing more than what we expected after being sedated. She drank some apple juice and we were given the ok to go home. So we went to change her diaper and put her clothes back on and we saw 2 huge scratches on her left leg. Ouchie.

We called the recovery nurse over and asked her about them. She said she had no idea what they were from and called into the OR to speak to the OR nurse who was with Gracie the entire time. It turned out that they were having a particularly difficult time with their present surgery, but the notations on the chart said that Gracie had the scratches when she came in. Ummm... no. Not possible. Even if it were possible for her to even get those kind of scratches, there is NO WAY we wouldn't have known about it.
We told this to the recovery nurse and added that we know that accidents happen and that its ok, but we wanted to know what she might have been scratched by in case we need to hit her with some antibiotics just in case of possible infection. The poor recovery nurse said she would try to talk to the OR nurse again. She phoned into the OR again and the nurse told her that she was still wrapped up, but that the scratches were already on Gracie when she got her. Ok, now I'm starting to get upset. We gave the lady a pass, we just want her to fess up so that we know what the next step should be. Its not a big deal, just tell us that her leg got scratched on the table or something and she shouldn't need any extra precautions.
This never came about and we left with the promise that the OR nurse would call us when she has a spare moment. We haven't heard from her yet. I am a little peeved and I'll be letting Dr. Joyce hear about it on our next visit.

So Gracie took a nice long nap after we got home and I expected to have a cranky little Peanut throughout the evening, but it turned out that she was very happy to have her line out. She was all smiles and giggles... we even went out to Applebees to celebrate. Woohoo!

Saturday and Sunday were great days as well. Gracie was definitely feeling good and we were having a ball. Another celebratory dinner at Red Lobster and church on Sunday morning.

Then Monday rolled around and Gracie started not to feel so good. She turned away food, then threw up, and then started having some yucky diarrhea. Mommy started to worry... first about infection, then about the possibility of GVHD of the gut which is even nastier than the skin kind. I called Nemours first thing on Monday and when I heard back from them they eased my mind by telling me that it sounded viral to them. Hee-hee. I remembered the true meaning of a "mixed blessing" by Monday evening when I was also blessed with this lovely stomach virus. It turns out that I got the worst of it (which is also a mixed blessing) because Gracie pretty much sailed through it while I fought the sweats, chills, and a 102 degree fever while worrying my head off that Gracie was going to do the same thing and end up in the ER or even an extended stay in the hospital.

We're both past the worst of it now, although her diapers are definitely still yucky. I'm hoping she'll be back to normal in a day or 2 and we can keep trucking like we always do. We had a mishap with one of Gracie's meds over the past few days too, but we were able to iron it out and hopefully tomorrow will be a better and smoother day.

xoxo.

Prayers...

Gracie will be having surgery at 8 am tomorrow (err... today) to have her central line removed and also she'll be having an eye exam under sedation. Of course since surgery starts at 8, we have to check in at 6:15. Yuck. Factor in a 1.5 hour drive and then look at the time of this posting and just imagine the lovely mood we will all probably be in. :P

No seriously, we are so excited to get this line out. As of yesterday, the entry point on her chest began itching a lot and Gracie kept scratching at it. Then to my delight (note the sarcasm) it began seeping a bit and the yucky ooze really irritated the skin around it. I gave her a bath and dressing change today because it was so yucky and wet and I discovered some serious skin breakdown under the bandage. Poor baby. This happened before and we learned that Gracie's sensitive skin doesn't like adhesives and plastic bandages and chloroprep and other stuff like that. We switched all of her dressings to breathable cloth and used different adhesive remover and cleaner, but I think her skin has just plain had enough. This line has been in place since the beginning of Sept, so 4 months of covering the same area is bound to make your skin unhappy, right? Anyway, I know that her skin issues will calm down once she is free of the 24-7 bandages. I'm looking forward to that quite a bit.

Please pray for an easy and quick procedure and safe travels for us. We love you all so much.