2nd worst day of my life

First of all, I want to say that I am writing this from home and not the hospital. For which I am so thankful.  Second, Cailynn's surgery is Monday, September 13th, don't know the time yet.  We have been working hard to be infection free until then.

Now for the "2nd worst day ever" part....
We have been using the PICC (peripherally inserted central catheter) line (that was started in the beginning of August during our second hospitalization) to administer Cailynn's antibiotics at home.  It was pretty much smooth sailing, at home anyway, with the IV antibiotics.  Then this past Thursday night, when I went to give her the 9pm dose, the saline flush just leaked out all over and was dripping from her arm, so I called the Home Health Care (HHC) nurse and she came out at like 10:30pm to see what was wrong and try to fix it. We had hoped it was just the connector piece that had come loose, but it wasn't.  The line had a hole and was leaking.  The HHC nurse called into the hospital to IV therapy and asked if there was any way to save the line and was told, no.  So she called our doctor and got orders for us to go to the hospital the next morning at 10:30am to get a new PICC line put in.  OK, no big deal really.  We were supposed to be leaving for a long weekend in Erie, but maybe we will just leave a little later than planned, and with a brand new PICC and dressing so I'll have nothing to worry about..... or so I thought.

 So Friday morning I took myself and Cailynn to the hospital and checked in to the Almost Home unit.  We were told to be NPO (no more eating for the baby) after 10am.  Of course, the IV therapy team was running behind, so they didn't come in til about 2pm.  Before putting in the PICC, they have to start a peripheral IV to administer the sedation medication so Cailynn would not feel anything and would be calm for the PICC procedure.  I was told that I was not going to be able to come with her to the treatment room when they did the PICC procedure, which I was not OK with and I made my feelings known.  Eventually the IV therapist relented and said I could accompany her, but had to sit  to the side during the procedure, but I could be in the room, so that was ok with me.  Good thing too, because well..... it didn't go so well.  Two IV therapists tried for 2 hours to get an IV started on her.  They made 5 attempts where they actually put a needle in her, including one on her head!, all of them failures.  At this point the poor baby had been crying for hours and hadn't eaten in 6 hours.  The IV therapists were apologetic, and kept saying "this never happens."  Our options were try to get orders for an oral sedation medication- which would take another 45 -60 minutes to start working, more time before she could eat.  OR, we could go ahead with the PICC placement without sedation and be done in less than 45 minutes and she could be eating again.  I went with the quicker route and the PICC was placed without sedation, but she was so tired from crying, that she mostly slept through the whole procedure anyway!

Finally it was done, we just needed to wait for our turn at the x-ray lab so they could check the placement of the line.  So another hour wait, then x-ray, then wait for results.  Results were not good.  The line had curled around her shoulder so they needed to adjust it.  By this time the IV therapist was not willing to keep going at this alone so she got a doctor to adjust the line and they did it under fluoroscope (a video x-ray).  It took like what seemed forever and poor Cailynn screamed the whole time.  It did not hurt her, but they had to hold her down and immobilize her arm, and she really hated that.  My mom had come to stay with us after work so when we were done she brought us home.  It was 7:30pm.

At 9pm I got her antibiotic ready but when I went to flush the line with saline, nothing happened.  I could not get anything to go through the line.  So I called the HHC nurse again and she called the hospital and after talking to them she recommended that I go back to the hospital and have them check it.  So at 11pm I was back in the hospital.  The same IV therapist had stayed past her shift to check out Cailynn's line.  Long story short, she found a hole in the line and pulled it.  That's 2 holes in 2 days.   She said she goes 5 months and doesn't see one hole in a PICC line.  Lucky, lucky us.  Everything we had gone through that day and the result was NOTHING.  I honestly felt something against us all day.  I had prayed so hard, called all my prayer warrior friends and continued to watch my baby suffer.

The IV therapist called our doctor and we were told we needed to stay and spend the night so they could try again in the morning.  At his point I finally conceded defeat and realized our little family getaway wasn't going to happen. I was broken and tired and done.  At 2am the night IV therapist came to try again to get an IV started so Cailynn could get her medsmeds in the morning.  But surprise, surprise!  Couldn't get it!  She was merciful though and only tried once, the only one left I suppose.  So we went back to our room, Cailynn slept on my chest while I dozed in the chair, not really knowing what the morning would bring...

So then it was Saturday morning and as far as I knew, the plan was still to try and put in another PICC.  No one wanted Cailynn or me to suffer any more.  That was a huge consideration when discussing the next move, second only to her health.  She needs to finish the treatment of her last infection, and we are desperately trying to keep her free of infection til her scheduled surgery.
         Finally our doctor came and we started discussing our options.
1. Try another PICC.  The problem was getting her sedated and that was the problem the day before. She could finish her antibiotics, but no guarantee she won't get another infection before the 13th.  AND inserting another foreign body into her came with a risk of infection.
2.  Put in a central line.  That would require a visit to the operating room where a surgeon would place a catheter in a main vein near her neck or shoulder.  It would be accessed at her chest and it would be in place as long as we wanted it.  She would not need any more needles because they could draw blood from it, administer meds and fluids, and the anesthesiologist could use it too for her surgery next week.  She would go under general anesthesia (gas) so no need to get an IV line started.  Its pretty invasive for 5 more days of IV antibiotics, but I was leaning that way because of how much IV stuff she had already received and how many more times she is likely to have to have IV access in the near future. (I count 2 times in the next 10 days without counting the IV antibiotics).  Again, she could finish her antibiotics, but no guarantee she won't get another infection before the 13th. AND inserting another foreign body into her came with a risk of infection. The doctors felt we had kinda pushed the limits of that already that day.
3.  Try an oral antibiotic.  The problems with oral antibiotics is that she doesn't always take them well (spit up, puke up or just push out of her mouth) and the bacteria we are fighting needs a really strong antibiotic and the doctor didn't know if there was even one we could use for such a young baby. 

So we discussed this with the doctor.  He went off to talk to the infectious disease doctors to see if there was something we could take orally to fight this bacteria.  I was still leaning toward the central line, just because if we could do that and never have to torture her again with another IV it would be so worth it to me but Trent was more concerned about the invasiveness of it and wanted to take a more conservative route.....  Then the doctor came back and proposed we put her on Cipro.  It isn't indicated for babies under 1 yr old, but there are twins in the NICU who were on it because of bad infection so the infections disease doctors, the pharmacist, and our doctor felt that the drug could be used with our baby.  The selling point to me was that she could be on the Cipro til her surgery date almost guaranteeing that she would not get another infection before that date.  We got it flavored grape, praying it would be more palatable and she would tolerate it better.   She will still need to get IVs, but the doctor wants them to try once she is under general anesthesia and if they still have so much trouble even when she is still, then they can consider putting in the central line while she is already in surgery.  That option got us out of the hospital that day, without any more "trauma" for the baby (or mommy!).

So we finally came home about 4pm.  And as the other kids were with my Mom, baby and I spent the rest of the day napping.  She seems to take the Cipro OK, so I am encouraged that we will be able to have surgery on schedule.  Hopefully there is no need for more blog updates til then!