Lexi Update, part 2

Tuesday, October 12, 2010 7:58 PM, EDT

Sorry about the abrupt end to my last entry. The PICU nurse came in and told me we were being transferred to J5 right then so I went ahead and posted my post so I wouldn't lose anything. (If you haven't read my post from earlier today go down and read the post right before this one first.)

Anyway, Alexis arrived to the PICU from the ER at 6:45am. Since it was almost shift change we had to tell our story twice in an hour. After that I was finally able to get an hour and a half of sleep.

Around 5pm on Monday, Dr. Ranalli, Alexis's oncologist visited us in the PICU. When he arrived I reminded him of our scheduled Disney trip beginning on Sunday October 17th. He immediately picked up our room phone and called Make a Wish to let them know that Alexis was in ICU and that we may need to postpone our trip. The unfortuante thing in all of this is that Alexis finished her 6 month antibody protein therapy on October 2nd. The next step was already scheduled for Alexis to have all of her final scans this week before her trip to Disney. Then if all went well she was going to have her Broviac removed. After Dr. R called Make a Wish he decided that he wanted to continue with the original plan of having the scans completed this week. Then after Alexis receives her IV antibiotics to treat the infection he is going to remove the Broviac. Since she is done receiving her treatments there is no need to have the Broviac line in after the scans.

Today we learned that the infection growing in Alexis's lines is a bacterial infection. This is a very serious infection. The positive thing is that it is curable but it will take an aggressive treatment approach to fight it. As soon as the infection was found, Alexis was started on 4-5 antibiotics to fight each time of potential bug. Then additional bood cultures were taken to determine specifically which type of infection she has. Once it is determined what caused the infection then the lab will determine which antibiotics will treat the specific bug Alexis has. At this point Alexis's infection was narrowed down to two possible bugs. For the mean time she is on two antibiotics. The plan is for her to go home by the end of the week. Alexis will then receive two weeks of IV antibiotics at home.

Dr. R and I talked this afternoon and it was confirmed that our Disney trip will be postponed. We are just thankful that Alexis caught this infection now and not while we were at Disney. Dr. R told me we could still go to Disney if we wanted to stop in between the rides to take IV antibiotics. It didn't take me long to veto that idea. We definitely want Alexis to be feeling well during our trip.

The newest issue is that since yesterday, Alexis has been struggling with frequent diarrhea and terrible cramping. When we arrived up to J5 I was talking to the nurse and Dr. R about this symptom and it was decided immediately to test her for C diff. Alexis has had this before and it can come back easily when you are on a lot on antibiotics. It was decided to start treating Alexis for C-diff before the results come back. If any of you remember the treatment is another antibiotic called Flagil. Ironic isn't it.

Today was another rough day. Alexis still hasn't ate anything. she has been drinking some but very little. She even passed on a massage which doesn't happen often, even when she is feeling crummy. Her temperature even keeps going up and down from having a fever. Hopefully tomorrow will be a better day. When we arrived to J5 we were given a nice welcome. Before we arrived to our room, I think 5-6 people stopped to say Hi to Alexis and I and find out why we were here. I am sure the Picu nurses that were taking us to our room quickly understood not to take it personally that we would rather be on J5! It is just like seeing family that you haven't seen in a while.

It is 11 pm right now and Alexis has another fever of 103.4. The nurse an I tried to get her to take the tylenol but she got sick on it. She has already had Zofran and pheneregan recently tonight for nausea. It looks like their is blood in it, so I don't know hwat is going on. The docs already started her on zantac so hopefully that will stop any issues from blood being in her stomach.

Thanks for all of the thoughts for a quick recovery for Alexis. There is a lot more I could write but I will write more later.

Love,
Jen

If you would like to catch up on Lexi's story, you can read all about her here. Please keep her in your thoughts and prayers.

Lexi Update!!

Jen, Lexi's mom just posted this on their CaringBridge website:

Tuesday, October 12, 2010 10:38 AM, EDT

Well, for the past week and a half I kept meaning to update the site to share all of the positive things that keep happening and changing almost on a daily basis. Unfortunantly though, the news I have to share now isn't the greatest. Alexis has a double line infection in her central line (the broviac port in her chest). For precautionary measures she was admitted to the PICU, but they just told us that since her blood pressures are now stable and she is doing so well they are going to move her up to J5. It has been 14 months since Alexis has had a broviac and this is her first line infection. Even our nurse practitioner, Faye, just told me how impressive this is! Sometimes kids get line infections after each round of chemo. Unfortunantly though this infection picked a bad time. We were suppose to leave for Disney on Sunday the 17th. At this point it looks like the trip will be postponed.

It all started on Friday night at 1:30 in the morning. Alexis woke up and started vomitting for the next two and a half hours. When she woke up on Saturday morning she didn't feel so well, but before lunch she convinced herself to eat something. Alexis had an incentive for eating. Her and Aaron were invited to Sydnie's birthday party (a little girl they know from their babysitter Tammy's house). Alexis felt pretty good at Sydnie's party and really enjoyed seeing Sydnie and Abby another old friend. Aaron stuck right by his sister at the party but had fun making a glitter guitar and a boy necklace!

Then on Saturday night, Alexis had another vomitting episode, a killer headache and low grade fevers. Sunday was a horrible day for Alexis. She felt pretty miserable for most of the day. She didn't have a fever but she wouldn't eat anything. Then around 10:45pm Sunday night, as I was goingto bed for the night I found Alexis in the bathroom. She started chugging water, had some diarrhea and asked for a drinkable yogurt. I was excited that she wanted something to eat. Then after, I touched her skin and realized she was burning up. She had a fever of 104. I called the hematologist on call at the hospital and they advised me to bring her in for evaluation.

Alexis and I arrived at Children's ER at 12:30am Sunday night. Her temp had dropped down to 103 but her blood pressures were irratic and a little low. We waited in the ER forever and then they decided to give her an IV antibiotic that runs over 1 and a half hours before we could be transferred to another floor. Alexis was able to get some sleep in the ER but I only managed to get abnout a half hour worth. The chair I had to sit in, in the ER was a hard wooden rocking chair. I had the chair covered with blankets but even that didn't help much. Finally around 6am the ER told us that the Hem/Onc doctors (J5) felt more comfortable sending us to the Picu to be on the safe side since Alexis was so sick. I didn't want to be transferred to PICU because the nurses on J5 know Alexis and are familiar with her normal low blood pressures but after I had some sleep I felt better about the situation. Once in the PICU, Alexis became stable rather quickly. Within a few hours they had given her so much fluid that her blood pressures rose to numbers that I have never seen them.

If you would like to catch up on Lexi's story, you can read all about her here. Please keep her in your thoughts and prayers.