Ally and I are settled in at Lurie Childrens Hospital. She is in PICU Room 1634. If anyone needs to reach me by phone, cellphone reception is patchy with the TALL Chicago buildings downtown, so the hospital number is 312-227-1600 and then ask for our room 1634.
Luckily Ally’s home nurse Meghan helped us get down here and settled, so that Billy could work and then attend the wake of his AMAZING boss, Justin, who is now in heaven and free from pancreatic and liver cancer. He was one of the most caring men I have ever met and extra helpful to our family. I’m sad I am unable to make his services. My heart goes out to his wife and family.
We got down here at about 1 pm and Ally got settled into her bed around 3 pm. It is super busy here and we are going to stay to ourselves away from the other germs. Ally is scheduled to have her port replaced tomorrow at about 4:30 pm. I’m guessing she might be later on the schedule since she was so complicated last time. She had a line placed today by an ultrasound guided IV (to get continuous nutrition and pre-blood labs) and that took a lot of time due to her tricky veins. After surgery, she will also get her pamidronate bone infusions through her new port.
Positives — Our admitting nurse has had Ally before, so that makes things easier. We will have a new nurse on Wednesday and Thursday days (same one both days), but I’m VERY happy that Ally will have some consistency. Our night nurse will be here hopefully all nights we are here too 🙂 They are trying more consistency with nurses and respiratory therapists since the last hospital stay was more difficult with lots of different people coming and going. A HUGE thanks to the staff for trying to coordinate this, as it does relieve some stress. Another nice surprise — When we arrived to the room there was a special panda bear and card from our friends the Terhost Family and some delicious chocolate for me. Thanks a million!!!!
Billy will be here with us for surgery and all day tomorrow. We hope to go home on Thursday, but it will all depend on Ally’s pain status after surgery and how the infusions go. Big school meeting is still scheduled for Friday morning.
I will update Ally’s blog when I can. Thanks in advance for your prayers and positive vibes. I’m for some reason more uneasy than usual.
10:30 PM Tuesday night update — And the frustrations begin 😦
Ally desated to 70 (out of 100) for oxygen during her bedtime breathing treatment and I just took over for the most part (with the nurse assisting too). Its too hard for an RT (respiratory therapist) who is passive to pick up her treatment and signs for one treatment and she won’t be back in since she is off the rest of the time we are here (neither will the daytime one I trained today). She did watch me though, so maybe she learned a little. Ally hasn’t been below high 80s in a long time and she is well. Then the hospital doesn’t have two of her meds and won’t let me give the extra ones I have in her bag since I don’t have the bottles (only syringes). One is liquid albuterol that they have had for years here and the other is the injectable form of robinul that we give by j-tube. The compound does not work well on her, but we are gonna try it. I would just like everything at her baseline before and after surgery, not missing or different than her regular meds. Hopefully when Billy brings her bottles in the morning, they will let me give it. UGGHHHH, just wish we were home.
Angel Ally Blog - SMA Type 1 
Thinking of you! The port surgery should go pretty quickly! 🙂 Hope she does great during the infusions too! 🙂 Stella always gets hers in a day’s time because they don’t allow us to do it over a couple days like some kiddos. She may feel a bit achey and fever but just do tylenol/motrin and she should hopefully do fine with that. 🙂 The first couple infusions you will probably see some side effects but then the body seems to be pretty used to it after that. I’m assuming they are starting on the 1/2 dose for the first infusion and then working up the next infusion? That usually helps them do the best to get used to the pamidronate. 🙂 Hugs and love!
Thanks for your message Sarah. This will be Ally’s second infusion, so they are doing 1 mg/kilo. I think this is the full dose. The first time, they did it over 2 days (4 hours each), but this time, they are doing one 4 hour dose. This is a port revision and the first one was really tough due to her antatomy and then a fibrin sheath formed over it, so nothing draws back from it, plus it is floating and hard to access to even flush. I hope it goes well and she don’t have too much pain. Thanks again 🙂