Sunday, October 16, 2011

Home..... Sort of

After a couple of days of stagnant counts, Saoirse's ANC shot up like a rocket! We had seen an improvement on Sunday, but her overnight counts hadn't shown any increase, so we had them repeat the ANC, and it jumped from 0 to 160 in just 10 hours. By Monday morning it was up to 600. She hadn't had a fever since Friday night, so she was definitely on the mend. I kept telling the nurses and doctors that as soon as her ANC started to rise, we would see a totally different baby within 24 hours. I don't think they believed me, but it was certainly true. By Monday she was up, playing, off morphine, and wanting desperately to go go go. We had a couple of scheduled appointments Monday, and my parents came in to do overlap control (the baby had an audiology appointment that ran into our meeting with her doctors about the stem cell protocol). After a trip to ophthalmology in the afternoon, we were getting antsy, and ready to leave. 
We were delayed, however, because we were going to be sent home on an IV antibiotic which had to be ordered and run once at the hospital to check for side effects. When we first came into the Jimmy Fund on Wednesday, they started antibiotics before they took any blood cultures. This mistake on their part meant that they didn't know for sure that Saoirse was free of bacterial infection, as the antibiotics work very quickly. We had been made aware of the mistake when it was realized, but we didn't know that it would cause her to be overmedicated throughout her hospital stay and once we went home. I made it clear to the doctors that I found it insane that she had to suffer from over prescribing because of a mistake made by a nurse, and that I wouldn't tolerate a similar mistake in the future. We had no choice in the home antibiotic, but it wasn't too bad. I chose to forgo her Bactrim for the week, as the full spectrum of the other drug would cover anything that was going on, and I hate over medicating - especially with antibiotics which mess with her gut so much. But with everything straightened out, and all the meds ordered, we were finally on our way home. Just in time to have to turn around the next morning and come in for an appointment. 
Tuesday morning we were in bright and early for her bone marrow biopsy. There was a terrible storm on the north shore overnight, blowing down some debris, and causing tons of flash flooding. The two main highways into the city from our house were flooded out, so we had to go around the flooding on side streets before getting back on the long route into the city. We got in a bit late, but they took her right in and got her started. Once she was out and we saw her, Mike ran to Logan airport to pick up his parents, who came to visit for the week. We woke Saoirse up from surgery quickly, and I ran her over to nuclear medicine to have her injection for her MIBG scan the next day. Mike and his parents met me there, and my dad was with us to help keep Saoirse entertained while Mike and I met with the Stem cell doctor in the early afternoon. Luckily, Saoirse napped through the whole meeting (sadly on my dad's shoulder, putting his arm to sleep). After the meeting we got to have a quick bite to eat, and then headed home. We were right back in on Wednesday, though, for her MIBG scan in the morning, and her CT scan in the afternoon. 
The MIBG went well for the first half, but she screamed through the second half. That is by far the longest scan, lasting a little over an hour. but she doesn't have to be absolutely still, so she doesn't get sedated. For her CT scan, we planned on napping her instead of sedating her. It was a bit tricky though, as she is becoming more aware of what is going on. We managed to get the nap for the belly and body part, however to scan her head we had to move her up the table into the head cradle. She woke up, and was mad and scared of the machine. There was no use trying to put her to sleep. We decided not to sedate her that day as it was late, and Mike's parents were patiently waiting patiently downstairs. We made an appointment for Friday, and planned on sedating her if we couldn't get her to nap right away. We came in Friday at 11 for her dental exam, and then had her run around until her CT appointment. We got her to go to sleep, but she wouldn't stay asleep on the table. We had to sedate her. We had been afraid of what it would do, but it was actually very simple and straight forward. She went to sleep, the scan was done, and then she went to recovery to wake up. She was awake after about 20 minutes, drank down a bottle of juice and went straight for the goldfish. We got home late, because we had to wait until 3:30 to sedate her since she had eaten a bottle at 7:30, but we were glad to have all of her scans and tests done. Now we had to just wait for the results. 
After being in the hospital for almost a week for mucositis, we felt like we were still in with all the testing she had to undergo that week. It's such a pain to have so many scans, but they did a really good job of squeezing them into as few days as possible. We did find out that Saoirse has some hearing loss at high frequency, and is borderline in the mid range, but she is still responding to us when we talk to her, and is repeating sounds and learning words, so we are not concerned that it is having an affect on her development as of now. As we wait for the test results, we will have tons of fun things to do with Mike's parents visiting, and we are looking forward to a trip to NYC and Sloan Kettering to explore her other options. 


  1. I can't even fathom the constant doctor's appts and scans, etc. When all you want to do is be at home with your little one enjoying her snuggles in a quiet room. I send you continued support and prayers. I do wish you a fantastic time with your visit and on your trip to NYC. Blessed hugs for your lil' princess.

  2. I am worn out just reading your post. Your family is amazing and I continue to pray for her (and you) for a speedy recovery and that her little body will respond to the medication and heal itself.

  3. we are praying for your family. We think we have problems til we read your story.I feel you are a very strong family.Stay positive. enjoy your family trip in NYC.xoxolove the
    monaghan family.