Saturday 2-22-14, 7:45pm — HOME and antibiotic infusions

Got home about 3pm.  Just finished learning how to do Ally’s antibiotic infusion that will be given 4x a day (approx 6am, 12pm, 6pm and 12am – with me needing to take it out of the fridge about 2 hours before infusing).  I’m glad to be home, but will have an interesting schedule for the next 10 days of sleeping (in order to stay on schedule since we only have nurses about 6a-8/10p M-F and occasional weekends, but they don’t have experience with this either).  I pray I do it correctly tonight at midnight.  I could call the the infusion RN, but is anyone else up at midnight that can assist if I have a brain fart?  Also wondering how “off” the scheduled infusions can be if the times don’t quite work out? The hospital said up to 3hrs off, but that doesn’t seem right to me.  This is all new to me and I hope I don’t make any mistakes.  Need to be sure this blood infection clears completely.  I learned today from the infectious disease doc that we are suppressing it right now, but need to be sure it completely gets killed off. I learned some other interesting things too from her. We will do labs a few days after the antibiotics end and before Ally’s spine surgery (most likely at the end of March) to be sure it is clear.   — Gosh, one more medical thing I hope to become an expert at to keep Ally healthy.

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Saturday 2-22-14 Ally’s going HOME / Ways to help…

Yipppeee!!! Blood cultures are officially negative for the last three days!!! Ally and I get to come home TODAY, hopefully around 12/1pm after an antibiotic infusion. An agency will then come out and teach me how to do the infusions 4x a day for about the next 10 days. I’ve done it before, but need a refresher.

Several have asked how they can help… and I’ve learned over the last 8 years it is okay to accept help (and then pay it forward later). #1 If anyone would like to ever do meals post and during hospital days or a meal giftcard, they are extremely helpful. I am not one who likes to cook and especially after a hospital stay, I am a little exhausted and regaining energy. #2 Ally and I will need to start getting out of the house and/or have visitors. If anyone is up for a movie, go out for pie… I am game. Ally will most likely wait another two weeks to attend school due to the infusions and some colder days, but playdates or someone “healthy” reading and doing crafts with her is a nice change in the boring winter days. #3 I need to start helping my family financially and the best way is for me to get my Pampered Chef with Tina Krajewski buisness going again. I took a break this winter due to my hysterectomy surgery. PLEASE, PLEASE, PLEASE consider hosting a real or online show. You will also benefit by earning LOTS of free products and having fun with friends. Placing orders also helps, so let me know if you need something and I will be setting up another mystery host show online. #4 Another way I can help my family financially is to tutor. I have taught grades K-2 and subbed longterm in 6-8th. I am very good at helping kids with reading and math at all levels. Please let me know if you know anyone with a need.

Thank you again for eveyone’s support, prayers, and well wishes!!!! 🙂

PS — Meal info for anyone interested… Our address is 3614 N. New England, Chicago 60634 (near Shabbona Park). A meal or gift card are equally helpful. Meal gift cards could be for anywhere in the area (any pizza place, Panera, Chipotle, McDonalds, Subway, Mr. Beef… or even a restaurant since we will start getting out soon to get rid of the winter blues for me and Ally). Thank you again

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Friday 2-21-14, Ally Hospital Update 9am

WOOOOOHOOOOO!!!!! Ally’s blood cultures from the 19th came back after 48 hours still negative, cultures from the 20th are negative… so most likely tomorrow morning today’s labs will be negative and we will go HOME on Saturday. They are already pre-planning the discharge so that her IV infusions can be set up for at home (which will be given about 12-14 more days). Today she will be molded for a new, unique tlso (back and neck support) to use till she has spine surgery in about a month. We should also be meeting with two more docs that we will be around for post surgery care. Have to say again, I am LOVING the team work and consistency/dedication at Lutheran General Hospital.

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Thursday 2-20-14 Ally Hospital update, 7:30pm

I’m very sorry that I haven’t updated yet today or returned texts, emails…. It has been a very, very, very productive, busy and good day. Ally’s blood culture from the 19th is so far staying negative. 🙂 We draw blood every morning and if this one stays negative, plus we get negatives for the 20th and 21st, there is a VERY good chance Ally will get to go home on Saturday!!!!! She will be on IV antibiotics a few times a day for about 12 more days after that, but she will be HOME!!! She is doing very well with no fevers today. She still has a bit of mucus, but treatments are going smoothly and she is in good spirits. She even had a visit from her teacher, Ms. Luz, and one-on-one aid, Ms. Kava, who brought cards from her entire school and belated Valentines’ gifts!!!!! Thank you to New Horizon Center and all of her friends including Adriana Marquez Yazmine Reyes. We also had another mom of medically fragile children visit today. This is the second mom in one of my support groups which means a ton, as we LOVE healthy visitors. Thank you Cindy Ruting Mammoser and Terese Milligan Byrne!!!! Today we got to talk with Ally’s new orthopedic surgeon and discuss plans for surgery and a few steps that we need to take before it occurs. As long as Ally stays free of blood infections and healthy it will most likely occur mid to late March at Lutheran General. There is soooo much more, but I will share more when I can. I am soooooo happy with how things are going and the great teamwork at Lutheran General and willingness to work with me to help Ally. I even filled out an application to be considered for their Parent Advisory Council. I almost positive Lutheran General will be Ally’s primary hospital moving forward. Lurie Children’s is great, but there are some extra pros here and not dealing with downtown chaos and expenses is a big one.

Thank you again for everyone’s support, well wishes and prayers!!!!

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Wednesday 2-19-14, Ally hospital update – 1pm

Ally still has occassional fevers to 100-101, and now quite a bit of extra mucus/junk in her lungs, but overall she is doing well. They will keep doing IV antibiotics, started an antibiotic nebulizer med/ Tobi, and will test her blood everyday. So far it is still positive for an infection. We will be in the hospital till it comes back negative plus a couple days, then would go home on iv antibiotics for 14 more days. If she gets worse or the blood infection doesn’t clear, she will have to have surgery to remove the port. Different things could have caused the infection but it adheres to her port since it is a plastic foreign body inside her. Praying it clears very soon. She will be moving rooms to a step down unit right outside the picu (Tower 2, room 5) which was the room of an angel friend, Kira who is very special to us. Healthy, adult visitors are very welcome as I am not leaving the hospital since Ally is new to everyone, but they are doing a great job learning her unique care. Thanks again for the prayers and well wishes.

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Tuesday 2-18-14, 12pm Ally hospital update-

Just wanted to let you know Ally will be in the hospital a few days. Here is the update I did on facebook…

Ally was admitted Monday night to Lutheran General since her cultures came back with a blood infection that MUST be treated with IV antibiotics. For a week, she has had tougher AM breathing treatments with yellow secretions but then fine overall the rest of the day/night. However she began fevers 99-102.3 Friday and Saturday, so we brought her to the ER for all different types of cultures/tests and xrays. Overall, everything has been clear except we got the call about the blood infection and that we needed to admit Ally. Clinically, Ally is actually doing much better with only low grade to no temps and better heartrate. However her secretions/sputum has gotten a little worse/thicker… and she did have a desat to 75 at 3am with tons of mucus and blood. It was only a brief time and “I” helped her recover, but we are re-runing respiratory, blood and stool tests. We will be also be testing blood daily till it comes back negative or we will have to remove Ally’s port. I am hopeful we can fix it with the antibiotics though.

This is Ally’s first hospital stay at Lutheran. We chose to come here so their medical staff can get to know Ally and her unique care before we do spine surgery here in the near future. It’s a little hard working with a new team and hospital, but overall things are going really well with only a couple small bumps we have/are working through. Overall, many of my friends who have medically fragile children or come here were right, Lutheran is REALLY family friendly, possibly less stressful, and definitely easier to get to than going downtown Chicago. We are only on our first full day, but I am very hopeful.

Thanks again to everyone for the prayers, support and well wishes.

Tina and the Krajewski Family

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