The momumental screw-up... part 1

So we are home from Wolfson's Children's Hospital, where we endured a 4 day isolated stay that has left our poor Gracie looking and feeling like a human pin cushion- covered with prick marks, bruises, and bandaids. My poor sweet girl.

So let me give you the story- start to finish- of what really went down. Uncle Mack and Aunt Hyster did their best with second hand info, but I'm going to clear it all up so we can have a full picture of what exactly happened.

Rewind to a week ago- Sunday. Gracie is fighting a fever... it started out around 99 degrees. This is enough to warrant some concern, but 100.5 is our magic number. When Gracie reaches 100.5, we automatically head to the ER to have blood cultures taken and doses of antibiotic given. Anyway, she seemed ok despite the low grade fever, so we took a quick trip with Noni down to Gainesville to shop for a few hours. Gracie did well, but as time passed, she seemed to get more and more fussy. We headed for home and once we got there I took her temp and there it was 100.9. We packed Gracie up and Noni went with us to the ER (Shands at Lake Shore). We got in our room and waited for the inevitable needle stick which would provide not only a blood sample, but also an entry point for the IV antibiotics that would follow.

I'll give our nurse credit for trying, she did go for a vein in Gracie's arm with little success. Of course, Gracie squirmed and screamed her head off the entire time as the nurse wiggled the needle around looking for her vein. No go. On the other arm, she saw a big bruise we got from a previous draw which blew Gracie's vein over there. I think that by that time, she was nervous about sticking Gracie again and her judgement was not so clear. She suggested another method of blood capture- a heel prick, and we could give the antibiotic in a shot. Having just watched my baby writhe and scream in agony for a few minutes (which felt like an hour), I liked the idea of a quick stick and then a quick shot. WHatever would get us out of there the fastest. It never occured to me that I should question this method. I figured that if the nurse and doctor ok'd it, it must be a good alternative.

So she prepped Gracie's foot by cleaning it well with alcohol and chloroprep before giving her heel 2 pricks to make the blood flow more freely. Poor Gracie screamed again and kept screaming for next half hour as the nurse squeezed her foot and scraped the collection tube around her heel to collect enough blood for the sample. She had to get several tubes worth of blood, and this took a lot more time than anyone anticipated. By the time she filled the 3rd tube for the culture, the first 2 tubes (which were for a blood count and a metabolic panel) seemed to have clotted up. Fearing that the third tube would also clot, she called another nurse in to run it over to the lab. The second nurse saw the clotted samples and Gracie's still bleeding foot, and grabbed another 2 tubes and began squeezing Gracie's foot as well. I had noticed that she used hand cleaner when she first walked in, but I was distracted by my screaming baby and the discussion on the clotted tubes and I didn't pay much more attention to what she did. I was so paranoid that Gracie would have to be stuck yet again because of all of this mess. As Nurse 2 finished collecting the 2 new tubes, it was then that I noticed that her bare hands were covered in Gracie's blood. No gloves. I panicked, thinking only of the risk of contamination, and asked Nurse 1 if the 2 new tubes were for the the culture or the other tests. I was told they were for the other tests and then the nurses quickly took all of the tubes out of the room to send them to the lab before any clotting could occur. This was unusual because the blood for the culture is usually placed in the special culture bottle before being removed from the room... but with the entire process being out of the norm and my poor baby just absolutely terrified and screaming, I let it go and concentrated on calming Gracie down. In retrospect, I see the many red flags staring me in the face, but in the whirlwind of the moment, I was concentrating only on comforting my screaming daughter. The motherly instinct trumped my consciousness.

This was only the start of the screw-up...

On Wednesday evening while we were doing well and Gracie was fever-free and feeling better, we received a call from the folks at the ER telling us that Gracie's culture had grown something. I asked them to fax any and all results to our doctor at Nemours. I then called over to Nemours myself and asked them to page the on-call doc so that he could tell us what to do. He called back immediately and when I told him about the preliminary results of the culture, he told me to go ahead and pack up, that we were going to be admitted to Wolfson's for observation, a repeat culture, and a round of specific antibiotics. He asked me what kind of port or line Gracie had, and I told him that she had gotten her line removed at the beginning of the month. He asked how the culture was drawn, and I told him that they collected it from a heel prick. There was silence on the other end of the line, and then he asked me if I was serious. Ummm... this is clearly a bad sign. He told me that no one should EVER do an infection culture via heel prick due to the risk of contamination, but that we have to work under the assumption that the culture was correct and we needed to bring Gracie in. We packed up and loaded our poor girl in the car and headed to Jacksonville.

Upon arriving, we were ushered into the ER and we went through the normal registration and shown back to our little cubicle. Gracie endured 2 more pokes and then finally they were able to place an IV. They took another culture and hooked her up to the antibiotics while we waited for them to get us a room ready on the Oncology/Transplant floor. We finally made it our room at about 4 am and Jimmy got us settled in before heading back home in time to get maybe an hour of sleep before having to head to work. Gracie was restless and scared... and very annoyed to have the IV in her hand so it took some work to get her to sleep. We finally crashed about 6... although we were constantly disturbed by the many people coming in and out to check on this, or hook up that... etc. It was not fun for anyone, especially poor Gracie.

Stay tuned as the story unfolds in a future installment.

It's better than bad, it's nuts!

Hi, everyone. Aunt Hys is all riled up at Shands (I guess that's who came up with this hare-brained blood drawing method). Gracie's bacteria-ridden blood sample was meaningless from the moment it was drawn, so the information it would have provided was non-information anyway. Now, this sample is "lost" somewhere between the Lake City and the mothership. If you're up for reading a foot-stamping temper tantrum about this, it's in the comments on Mack's post (previous). I'll spare the rest of you.

Pfeh.

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.