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Last night went ok. Allyson had to get one of her antibotics at 3am and when that was done she had to have a.m. labs drawn. All things considered she did very well, it is not easy to get blood draws from the IV site. At least she got some sleep last night, I tried but a hospital is not designed for sleep. Dr. Bob stopped by first today. Allyson had cleared her chemo which was great news. We did not have to keep switching between the two different IVs. Dr. Bob did say that the culture from the infection did not grow anything, so whatever has caused all of this is a mystery. Dr. Bob said that we were going to treat this is a staph infection(it is not a staph infection, that test was negative) to make sure we got rid of all of the infection. Dr. Bob is doing this since Allyson will have to have another port put in. That will be several weeks away. So Allyson is now on two antibiotics and one antifungural for the next 10 days. Tomorrow morning at 10am Allyson is scheduled to have her pic line installed (I doubt that is the right way to say it but it sounds right to me). If all of that goes well we might get to go home tomorrow afternoon, yeah!

Benjamin had a good day at Tita’s. I picked him up at 5 and brought him back to the hospital to see Allyson. When Lisa went to get him this morning he was asking for Ally. He had dinner at the hospital and then we headed home for a quick bath. Our neighbor Ms Gerry cut the grass for us, so that was a very nice surprise.

Tomorrow is another day at the hospital pray that it goes well and we get to go home.

Until Tomorrow….

Ally update…Allyson had a fairly decent night last night.  She slept OK until about 3:30 when the nurse came in…Allyson’s IV spit out blood while the nurse was working on it…blood was everywhere…Allyson was freaked out…Brad held her for a big…then I had to hold her down- I imagine holding down an angry alligator is much the same…After that was taken care of, she slept again until about 6:45 in the morning when it was time for more meds.

She woke up in a good mood!  YEAH!  Surgery called for her right on time.   She did very well.  The port was indeed infected (this much we knew), so the doc did take it out.  He said there was still drainage there…he cleaned it out.  There was no need to put in a drain, so that was ok.  He just left a few loose stitches so what was left could drain (sorry if this grosses you out).  He could not put a pic line (again, spelling?)…that is a more permament IV line that can stay in for much longer than just a regular IV.  We need to wait until we know for sure the infection is clear before putting in a new line.  If we do it too soon, that line will get infected as well.  So..we wait…in the hospital.  Allyson has to stay there until they can get the pic line in because we can’t go home with a regular IV.  We’re not sure how many more days we’ll be in the hospital, but Dr. Bob said it could be three to four more days.  - As for a new port…She will get one, but we have to wait until the old port site is healed.  That could take two to four weeks.  Putting in a new port will require another surgery.

Ally is in decent spirits at this point.  We got to roll around in the wagon today.  We visited the second floor NICU where Allyson stayed when she was first born.  (Right outside the doors of the NICU hangs a beautiful (big) picture of Brad and Brendan.  We didn’t know it was there!  Ally knew right away who was in the picture!  - We also got to go to the Ronald McDonald Family Room (or “the kitchen” as Ally calls it) for a while today as well.  She loves to hang out there.  Jessica brought up Benjamin for us so we could take him home.  Bella came up too…that always makes Ally happy.

Benjamin had the best time playing with Ollie!  Jeck said it was like having twins ;-).  I can only imagine!!  He crashed on the way home and was asleep before 7:00.  They must have played him out!!  - Tomorrow he will go to Tita’s as usual.  We’ll keep his schedule the same this week (as much as we can).

Well…where to start…

Thursday was a busy day.  After all of our therapy and doc visits, the nurse came out to begin hydration for Allyson because it’s an IV backpack weekend.  Everything was fine…we went into the office on Friday…everything was fine…yesterday (Friday) evening, the pump alarmed and flashed “high pressure”.  Allyson flipped out because she HATES the alarms on these pumps.  I was home by myself because Brad was still at work.  Sparing you some details, I finally reached a nurse who was able to tell me what to do.  The “fix” worked, for a while.  As soon as Brad got home, the alarm started going off, constantly!  The nurse had to come to the house to help.  She checked Ally’s needles (she’s double accessed)… one fell out and began to drain a little (not a good sign!).   Anyway…We got Ally taken care of, pump working…until 5a.m. this morning.  I had to call the nurse again to help us.  This time, Brad and I (Brad actually did it as I was getting directions from the nurse)had to disconnect the line delivering the chemo and move it over to the other line.  That seemed to help…the alarm stopped going off…

We had to get everyone up early because Dr. Bob said he wanted to see Allyson first thing in the morning.  He wanted us in the office by 8:30 in the morning.  As soon as we got there, the nurse de-accessed her.  The site began to drain more than it did last night.  This is a sign of infection.  Dr. Bob came out and told us Ally would have to be admitted to the hospital (St. John’s is on the same campus as the Cancer Center) for at least a few days.  (At least we’re in a really  nice room, 3106.  It is in the newly remodeled section that just opened a few weeks ago.  The room is nice and big!)  They have to surgically remove the port.  When they get in there to remove it, they’ll see how bad and how far along the infection is.  That will determine how long we are in here.  For now, we know we’ll be here until at least Monday.

Right now Allyson is sleeping.  She is OUT!  They had to take both needles out of her port and start an IV in her arm.  That was a quite a feat!  It is soooo hard to find a vein on Allyson.  It took three nurses to get the IV in.  Poor baby…she cried and cried the whole time.  (Brad was with her…I just can’t take that at all…it makes me a wreck!)  She popped lots and lots of blood vessels on her head a face.  She looks like she’s got little red freckles all over.

They’ve started IV antiobiotic treatment already.  One of them can cause you to turn red (Redman Syndrome).  Of course, Allyson turned red and began to get really itchy.  She was given a dose of Benadryl (however you spell it).  I believe the combination of a stressful afternoon and the Benadryl has knocked her out!  I’m hoping she’ll sleep for the rest of the night.

Ally is scheduled for surgery tomorrow at 8:00 a.m.  We’ll know more after her surgery.

Benjamin is at Aunt Jecka’s having a ball!  He’s been playing all day with Ollie and Uncle Shawn and loving it!  (Thank God!)

Dr. Rob called Monday to let us know we were going to be changing her antibiotic.  They found out what the infection was and gave us a more specific med to treat it.  Good news…we only have to infuse the new one once a day instead of three times a day.  More good news…her counts are way up from where they were!!

Summer school started for Allyson this week.  Since she is accessed, we decided to keep her at home until next week.  Thankfully, I am able to bring her up to school for her therapy this week.  Today, she had speech with Ms. Carolyn and PT with Ms. Sherry.  She was shy with both of them at first, but then she got over it.  She did really well, and she had a great time!  We go tomorrow for OT and another session of PT.

Tomorrow is going to be a busy day.  Allyson has her therapy in the  morning, and then we’re off to Dr. Rob’s to get de-accessed at 12:30, and then onto the hospital for an ECHO at 1:00.  When we’re finished there, we’re back to Dr. Rob’s to get double accessed - one for her antibiotic infusions and the other is for her IV backpack.  The nurse will come out in the evening to begin hydration.  Friday, we’re back to Dr. Rob’s for a massive dose of methorexate and chemo for her IV backpack…ahhh, the backpack weekend…

Benjamin was back at Tita’s for the first time in almost a week.  I was afraid he’d cry, cry, cry.  He was happy on the way there and even smiled at her when she came to the door.  He was happy to see his little friend, Jack.  He fussed a little when I put him down, but as soon as Tita mentioned eating breakfast, he was fine…go figure!

Brad’s parents left this morning.  We are so thankful for all their help this past week.  We had a crazy, busy week, and they made it much easier for us.  I am sure the kids will miss them.

Allyson has adapted well to her IV antibiotic treatments.  She sleeps through the morning one and usually the night one as well.  During her afternoon treatment, she usually hands us the tube from her port and says we need to clean it.  She’s so good!  - She’s sleeping better as well.  I’m not sure if she had some sort of sinus infection or what…maybe the antibiotic is helping that.  Who knows…Hopefully Dr. Rob will tell us tomorrow.

Ally is supposed to start summer school this week, but because she is accessed, she might not be able to go until next week.

Today is our six year wedding anniversary.  Brad and I actually got to go out to a very nice dinner this evening.  We had such a nice time.  Nana and Gramps stayed home with the kids.