Antibiotics

Lyric will have to have two antibiotics, three times a day until the first of March. One will be given my mouth and the other will be given through her picc line. The latter will be in the form of a balloon that will hook to her pick line and deflate itself, administering the antibiotic over an hour period at the correct dosage. She wears a fanny pack around her waist that holds the balloon while she is getting the antibiotic. Besides this she will have to have five or six medicines twice a day, including a Lovenox shot for her factor five blood clotting. Lyric will go back the 2nd of March to have the picc line removed. She will still have to take the rest of the medicines for several months until told differently.

Last Bath

Lyric had her last bath at the hospital and got ready to go home. They had to put plastic over her picc line on her arm to keep it from getting wet. We will have to flush he picc line three times a day just like her central line and give her several medicines and antibiotics daily. It will be a lot of work but worth going home.

Going Home

I just got word that we may get to go home today. Lyric will finish her antibiotics at home, one through her picc line the other by mouth several times a day. Just need to get all the details for her care.
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Here For The Weekend

The bacteria sensitivities have come back. The Dr. was able to narrow her antibiotics down to two, one given by IV, the other by mouth. However, It appears that we won't be going home this weekend. Lyric's Dr. Wants her to stay to ensure there will be no issues with the antibiotics. They will revisit the issue on monday.
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Picc Is Working Again

Our nurse tonight was able to finally flush Lyric's picc line after letting it sit a little while with heprin in it. Her antibiotics are running again. I am thankfull for this. I also found out that her antibiotic's have been narrowed down to two, one to be given through her line the other orally every eight hours. We may yet get to go home and finish her antibiotics there. I should know somthing tomorrow.
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Picc Problems

The nurse came in to flush Lyric's picc line and start the next dose of antibiotics but it would not flush or get blood return. This could mean a possible clot. They put in a little heprin and are letting it sit. I really hope this line is not damaged. That would mean another surgery or IV. I should know somthing shortly.
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Good News

Lyric has been doing a lot better today. She has had two negative blood cultures thus far and some more great news. The genetics on her marrow came back and it appears to have no Luekemia cells. As of right now they are calling her cancer free. If we can get past these infections and taking antibiotics, then Lyric can start her clinic visits. Her greatest chance of relapse will be during the next two years and unfortunately, there is a high chance of this. However we are constantly in prayer and hopefull. The Dr. told me that lyric will have to take the antibiotics until the 1st. Whether we get to go home between now and then will depend on the bacteria sensitivity tests being done to determine the species of bacteria. Once they know exactly what we are dealing with, they may be able to narrow how many and frequency of dosage of the antibiotics. If she has to continue to take 3 kinds every few hours, than we will have to stay until the 1st.
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Recovery

Lyric was still sleeping by the time I met her in recovery. As soon as she wakes a little, we will head back to our room. I will meet with the Dr. to see what we may expect next.
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Picc Is In!

Just got word that Lyrics procedure went well and they are already done. With the XRay tecnology they were better able to feed the picc through to the heart. She will be taken to recovery shortly where I will meet them to see her.
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To The O.R.

Lyric being carried to the operating room. She was so scared this time that they had to give her something to calm her down before even going back. I hurt for her.
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Radiology

I just spoke with radiology who will be performing the XRay and dye procedure during her picc placement surgery. He said they will try to enter both arms if needed at the bend and tunnel to just before the heart. His technology will help determine what the blockage in the shoulder area was from the last procedure and if they can get past it. If they are not successful they will have to try to enter through her leg or neck. I have even asked about oral antibiotics to avoid the need for IV's and picc's but since the infections are so deadly and in the blood, it's best to treat them intravenously.
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3RD Surgery In 3 Days

Lyric is on her way to the O.R. for her 3rd surgery in 3 days. After her IV put in place from her last surgery failed, her team of Dr.'S decided it was now necesary to go ahead with the surgery using XRay and dye to put a picc line in place. Lyric has now reverted back to the day this all started in July where she screams and cries everytime someone comes near her.
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Fourth IV Blowout

Today the Dr.'s decided to cancel the picc procedure and try to preserve the IV in her right arm. The idea is, why put her through another surgery if they can use what they have to finish the course of antibiotics. I would rather have a picc put in since they are more permanent. I know her history with IV's and they don't last. Then you have to fight and argue to make sure she has sufficient pain control when they send the IV team in to put in another one. I know now after everything the team doesn't even want to face me when these IV's go bad. I will not allow them to stick her without some sort of sedative and they prefer to not sedate her, even mildly. This is her fourth one in a couple of days. The other down side to not putting in a picc is that we cannot go home and administer the rest of the antibiotics ourselves with an IV, which means we don't go home but stay another 10 to 14 days.



The above photo is lyric about 10pm. As I suspected would happen, her IV in her left arm blew out and one had to be put in place in her right arm. She was given Adavan, which made her real loopy and as you can see in the photo she is happy even though they stuck her twice to get this new IV in place. After this episode the team decided to go back to the original plan of putting in a picc tomorrow under radiology. That will be the third day of no food and drink for over 12 hours. I'm praying they get in right this time.

Surgery Unsuccessful

I just got in recovery with Lyric. The surgery was not successful. The team attempted to run two picc lines, one through each arm, but ran into some sort of vien blockage in both shoulder area's. They settled on another IV in her right arm. This has been an extreamly stressful two days with a baby that doesn't understand. She has endured 17 pokes that I know of to give her a working IV or picc. The Dr. Is saying that we will go back to our room and wait to speak to an additional Dr. Who specializes in doing these procedures with X-Ray technology to determin what is blocking her viens. I suspect this will add a few days to our stay.
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Heading To Surgery

Lyric has been transported to the O.R. and will be starting surgery any minute.
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Second Surgery

Lyric has had a pretty rough morning being uncomfortable with two IV's, one in her leg and the other in her foot. She has had a full morning and afternoon without eating or drinking in preparation for a second surgery. This time they will add a picc line and take out the IV,s. A picc is a more permanate line, similar to her central line that was removed. This line will enter her arm and travel through a vien to just before it enters the heart. The reason for this line is, being more permante we may be able to treat her infections with antibiotics through this line at home. It turns out that she actally tested positive for three infections which we have not received two negative blood cultures on. That means the antibiotics have already begun to work. She will be going down to the O.R. Shortly.
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Recovery Issues

Recovery is not going to well. Lyric had two IV's put in during surgery but one blew out after the nurse tried to flush it, looking for blood return. Now while in recovery the Dr. Had to sedate her again and put a third IV in her head.
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On Her Way To Recovery

I just spoke with the surgen and Lyric is doing fine. There was no issue with the removal of her central line. Just waiting to go back to recovery to see her.
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Surgery

Lyric is on her way to the O.R. She will have her central line remove and have two iv's put in to continue giving her antibiotics. She's not happy at all, pretty cranky from not eating. I am getting there also. When Lyric can't eat, I don't eat.
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2 PM Surgery

It looks like Lyric will have surgery sometime today to remove her central line. As of right now it is scheduled around 2 pm. She seems to be in a little better mood this morning. Although she cannot have any food or drink in preparation for the surgery, I get the sense that she would finally eat if she could.

A second blood culture came back positive this morning, so the antibiotics still have not licked the infection.

Surgery On Monday

After speaking with the Dr., I have been told that Lyric has tested positive for a bacteria infection, probably caused by her central line. After some more sensitive testing, the medical team will be able to determine exactly what kind of bacteria. It appears at this time that the best course is to send her into surgery and remove the line, probably on Monday. We are also still waiting on the complete results from her bone marrow aspiration performed on last Tuesday. If the results come back positive for the presence of Leukemia, she will have to have a new central line added down the road. Also depending on what kind of infection this is, the surgery team may put in a pic line during the removal of her central line, to continue to give her antibiotics. At this point we may be here until Wednesday or Thursday.

Middle of The Night Temp

Lyric spiked another temp of 101.2 around 1:00 am. I think the Tylenol started to wear off causing the temp to go up. She has also been disinterested in eating or drinking anything since we have arrived.

Positve For Infection

After several hours in the emergency room, lyric finally received a room. The medical team got her fever to break and her blood culture came back positve for an infection. We should know a little more tomorrw about how long we stay and have her on antibiotics.
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Still Running A Temp

Lyric's temp seems to be going up. She is very uncomfortable. The emergency team just added a pee bag to test her urine. Still waiting for a room.
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Trip to The Emergency Room

We still have had no word on the results from Lyric's bone marrow aspiration, performed on Tuesday. We may hear something by Monday.

At about 9:45 AM, Lyric began to have the chills and run a fever that reached 102.5. After speaking to her Dr., we loaded Lyric up to head to Vanderbilt's Emergency Room. On the way she vomited pretty violently and was drifting in and out of sleep. By the time we arrived her temp reached 103.2. The emergency team took blood cultures and immediately began to give her antibiotics through her central line. It appears that Lyric will be admitted to the 6th floor, Hematology unit for an overnight stay to figure out what we are dealing with. Once they determine what's going on, we will have a better idea of how long she will have to stay.

Clinic & Bone Marrow Surgery

We had a full day at the Vanderbilt Children's Hospital clinic. They checked Lyric's blood counts to make sure they were high enough to have her bone marrow procedure. They were. She came through the procedure fine. She woke up cranky and hungry from not eating since the night before. We should get the results in a few days. If the marrow shows the Leukemia still being present, we will have to go back and start another treatment and start to talk about a bone marrow transplant. A clean test would mean that Lyric just has to visit the clinic to monitor her counts a couple times a month to ensure she has not relapsed. She would have to visit the clinic for the next four years with the highest possibility of a relapse being within the first two years.

Bone Marrow Set for The 9TH, Not The 3RD

I mistakenly wrote that Lyric's bone marrow procedure will be on Feb 3rd. It has actually been scheduled for Feb 9th. We appreciate everyone's prayers for her and this procedure. It means everything. Please continue to pray for the procedure on the 9th. The results will be a very important and telling. Thank you.