Thought I’d try to write a quick post to let everyone know that things are going well in the Krajewski house and my “Angels”, my three girls, are doing well. One of my SMA mommy friends (Sarah Turnbull) wrote a couple of blogs about her daughter talking to angels recently. Many of the SMA children seem to look up or into a corner and get a special glisten in their eye, smile or even babble happily to something/someone no one else sees. Some of you may remember Ally’s 1 year old birthday/fundraiser when I read a poem written by another SMA mommy (Debby St. Onge) from Montana about this. I’d like to share it again (below), as it still describes greatly what our family experiences each day. I like to remind myself and others that SMA not only stands for “Spinal Muscular Atrophy”, it also stands for “So Many Angels.” Ally and her friends are angels sent down to us by God to teach us life lessons and sooo much more. Some for a short time and others for longer. Only God is in control of that timeframe. I’m so happy and grateful that Ally is still here on earth. She is a very happy little girl and although illnesses set us back and there is some suffering during our 2-18 day hospital stays, the GOOD, HAPPY days and LOVE far outweigh the difficult times. So, I know its impossible to completely understand our lives unless you live through the good and bad, but I really appreciate all the family and friends that support and prayer for Ally and us. Thank you.
DO YOU SEE THE ANGELS?
Sometimes when I see you look up at the sky
It’s as though you see angels, fluttering by.
You smile and you laugh with your eyes all aglow,
Do you have your own secret that none of us know?
Do you see the angels sent from above?
Are they here to remind us of God’s true love?
I’ll never forget that cold winter day
When they said you would never walk, run or play.
Little hope for a cure existed they said.
But you took our hand, down this path we were led.
Do you see the angels guiding our way?
Do they know we are thankful for each precious day?
Some people search their whole lives and they ask,
What is my purpose, my reason, my task?
But when you are given an angel on earth
The mission is clear, it defines your self-worth.
Do you see the angels lighting the night?
Do they give you the strength to go on with this fight?
The things you have taught us are endless you know.
The love that we feel just continues to grow.
We are lucky and blessed to have every day,
An angel from heaven to show us the way.
Do you see the angels sent from above?
Do they know that you taught us the meaning of love?
The ache that I feel in my heart every day
Is from knowing that someday you’ll be taken away.
To know you and love you is worth all the pain,
And if given the chance, do it over again.
Do you see the angels leading the way?
To God’s kingdom, where we’ll hold you someday.
By Debby St. Onge, dedicated to Veronica with so much love
Here are a few great, happy, pictures I’d love to share….
We made it home from the hosptial safe and sound!!!!!!! Ally is doing really well sating higher than her baseline for o2. She is SUPER happy watching cartoons in our living room with Melissa. Hospitals and illnesses stink, but I have a lot to thank God for. Thanks for everyone’s support!!!!
We plan on bringing Ally home from the hospital tomorrow (Sunday 10-11-09) afternoon. She is doing WONDERFUL!!!!, but they wanted one more day of weaning in front of them to be sure. Very horrible story I may share later, unfortunately she coded and stopped breathing (heart didn’t stop) when I stepped away yesterday possibly due to a positioning change and/or plug. Okay right after. Luckily two people who knew her very well (and the docs) helped her through it. I can’t even begin to explain how it makes me feel that I wasn’t here, but I am very happy to have God in control.
Thank you for all your continued prayers and support!!!!!
Tina, Ally and Family
Super quick update before going to bed for a “nignt nap” at the hospital.
Gotta be up at 6 am Thursday since Melissa has oral dentistry surgery here at Childrens Memorial at 8 am and Billy and her will be arriving at 7 or before. Praying things go smoothly as she needs 2-8 teeth pulled due to some gumline decay issues and serious cavities in her baby teeth. We’ve been unable to find her a good pediatric dentist until now (so things got worse and worse), but we are so lucky Childrens Dentisty accepted her as a sibling of Ally’s.
As you might have guessed by the title, we are STILL here at the hospital. It continues to be quite the rollercoaster ride. I told Ally we need some smooth sailing, but I guess she is an adventurous child and so the rollercoasters continue this hospital stay.
Too tired to write too much, but wanted to let others know we are okay and most of the time headed in the right direction of going home. I’m praying hard for Saturday or Sunday, but it keeps increasing because Ally is still fighing a cold with some serious bugs causing extra complications. Ally has been doing breathing treatments every 3 hours for a few days. Goal before going home is treatments every 4 hours and not have breathing trouble in between, also using little to no oxygen during treatments and no oxygen thru bi-pap. She still needs a big buffer of o2 during treatments. The biggest problem has been that when we make a change such as bi-pap settings or using our home bi-pap in the morning, Ally starts to struggle by mid afternoon and we have to go back to square 1 with her left lung beginning to collapse again. With hospital assistance we need to clear her bacterial, and possibly viral, pnumonia and we need to be sure her bi-pap settings are accuarate enough to keep her lung up. We explored using a ventilator with a bi-pap mask but ran into a roadblock of the hospital trainer thinking I would need 3-4 weeks of training before I could bring Ally home using a vent at night as her bi-pap. I have a call into Dr. Schroth for thoughts to keep Ally healthy and less likely to collapse her lung and Also the hospital plans to talk with Dr. Bach to hear their experiences.
I’ll write more tomorrow, but please know Ally is overall doing much better, but we need more support to clear this illness and be sure she doesn’t collapse another left lung.
Send FREE get well cards to Ally …. go to this link —- thanks sooo much! http://www.childrensmemorial.org/ecard/default.aspx
If interested, gifts can also be purchased online or over the phone at 773-880-4601 press 4.
Thanks again for everyones support,
Tina, Billy and the Girls
Unfortunately, Ally had some small setbacks today with breathing, o2 and co2 levels for the most of afternoon, but things are on the upswing again. What a rollercoster… but we are on the upswing again. Not sure 2, 3 days maybe, till we go home, IF she stays on an upward trend. Stinks how it keeps increasing, but the hospital is overall doing a WONDERFUL job
Wow—- It was a SUPER rough morning for Ally and a very emotional roller coaster for me. Things have improved though throughout the day, so I can take a few minutes to share what happened.
As I mentioned in my last post, Ally started having some breathing trouble Thursday evening. Well, it got worse and worse overnight and into the morning. We went from treatments every 4 hours, to 3 hours, and then had to do it every 2 hours (1 hour treatment, 1 hour break) and bleed in 50% oxygen through her bi-pap to keep her at a semi-safe breathing condition. This isn’t safe though since SMA kids have a hard time getting rid of carbon dioxide when they are sick and especially if given so much supplemental oxygen. We do tests to check the levels and they were in the normal range of 35-45, but then at 9 am her carbon dioxide level was 106 and this was before and after a VERY rough treatment with desats into the 40-50s o2 out of 100. Her secretions were very dry and thick with barely anything coming up. This means she could get a plug and stop breathing completely at ANY minute, so we most likely needed to intubate/put a breathing tube in to help her. This is so scary for an sma kiddo, but sometimes needed.
As a last ditch effort, we did a second pulmazyme treatment through Ally’s IPV machine to try to thin the secretions, tons more coughing and deep suctioning… for about 2 hours straight. Then, for the first time ever, I agreed to try a full face bi-pap mask on Ally before intubating her since with her nasal mask we were not getting high enough pressures and she had a significant leak. I have always fought this for fear she might aspirate on her secretions or choke since she cannot swallow, she cannot communicate with a mask over her nose and mouth, and she might just be so afraid and hold her breath. So I agreed to try it for at least a few minutes before intubating and IT WORKED wonders!!!! Ally went from 106 carbon dioxide to 70, then 60 and now at 9:30 pm is at 43 (completley safe). She has also gone from using 50% oxygen down to 30% and we should soon be at 21% which is room air. We have been doing treatments every other hour also, but I really attribute a ton to this full face mask giving her the extra support she needed to keep her lungs open. We haven’t had any big desats since this morning (knocking on wood right now).
So, God has answered my prayers again. God is in control of all of this. There are many times that I fear it may be time for Ally to go to heaven and she might not make it through one of these illnesses, but then she pulls through with more courage and strength than anyone I’ve ever met. She is a champion warrior and God is in control. I am just so thankful that she has more to do on earth and that I can be a part of that and share her life and story with others. She teaches me and soooo many others sooo much every day.
Okay, I’m getting a little/lot emotional, but it has been one CRAZY rollercoaster day.
Few more positives….
I talked to Patient Relations today and shared my major concerns about their new food company/policies of NO guest meals can be delivered to the room under ANY circumstances unless you pay $6-$10 even if you only need an oatmeal to sustain you and you are providing your own child’s meals that are very expensive. And there are no more meal tickets or garage parking passes since they have run out of donated funds. Nothing has been solved, but the communication has started that they have taken many steps backwards in meeting families needs. I also had an amazing friend who they allowed to call in a credit card to cover several hospital room meals in case I do not have CASH on hand and can’t leave the room to eat or get money (like I couldn’t from midnight till 1 pm today until Ally stabilized).
Another positive, Maribel (our home nurse and employee here) was allowed to come in on her days off and worked yesterday 3-11pm and today 7am-7pm to take care of Ally and the little girl next door. Since its been two rough days, this did make things MUCH better. I was able to take a shower in the hospital at 3 pm today (first time since Monday) and go out for an hour to get dinner with Billy (today and yesterday). I would have never left Ally with anyone else. Thank you Maribel (Ally’s Angel) and the hospital for allowing this.
The respiratory department did a wonderful job re-arranging things so Ally could have her own therapist today and tonight to do treatments every other hour to avoid intubation and work on clearing out her lungs and/or popping them back open. Special thank to all in the RT department (especially Avin, Helene, Catherine, Loretta, Kylie, Kellianne….).
Questions to other SMA families —
1) Have you ever used a full face mask for bi-pap during an illness and can you share a little about the experience? Or why haven’t you? Do they ever use it to avoid intubation in Madison?
2) If your child has used Tobi nebs, did they use 40, 80, or 300 mg? Did they use a 14 or 28 day cycle and how often are you doing the cycles? Do you do 1-3 times a day?
3) Do you deliver Tobi nebs through a nebulizer, nebulizer connected to bi-pap, and/or IPV machine?
4) Can Tobi nebs be mixed with any other medicated neb, or must it be done separate?
I am going to post this and try to add some pictures tonight or tomorrow. Scroll down on her blog to see them, or come back later if they aren’t here yet.
Thanks again to all of our friends and family!!!!!
Tina, Ally and Billy
OOOOOHHHHHH – this is not fun! But we will get through it!
I have to have faith and keep up my prayers.
I’ve made tiny updates on facebook, but then remembered not everyone is on there and I better update Ally’s blog too. I wish there was a way to coincide the two better, since I know so many of you are praying and wondering how my angel is coming along with this illness. I do updates since its the easiest way to communicate with so many people who care about us and it helps to sometimes put my feelings and experiences in writing.
So, Ally was holding her own doing breathing treatments every 4 hours and staying on her bi-pap breathing machine with no oxygen bled in for Wednesday and half of Thursday. Then around 5 pm Thursday, something turned nasty with this illness. I don’t think its something new caught at the hospital, I think its just setting in at its worst point. Fever started again, thicker yellow secretions, and BIG desats during breathing treatments (to 40-50 out of 100 for oxygen) but she comes back up quickly with cough machine and oxygen. X-rays at 10 pm and 5 am showed left lung much worse again and the right lung with some congestion too. We went up to treatment every 2 hours with quite a bit of coughing and deep suctioning in between. Unfortunately, we are also back on the hospital bi-pap breathing machine with oxygen bled in right now. We will continue with treatment every 2 hours with coughing in between. We also started tobi nebs and an antibiotic (she had to get stuck again, but they got it on the first try in her foot).
Good news — We switched to a different room (229) to make nursing go smoother while they care for two patients. With it so busy, our other nurses were mostly split between two rooms NOT next to each other -but thankfully the situation is fixed. They’ve also been overly busy with respiratory therapists and I don’t mind at all starting and assisting with her treatments, but I think today our therapist might have less other patients. That’s great since Ally is now 1 hour treatment, 1 hour break till she makes improvements.
BEST news — Since it is so busy at the hospital and they are short staff, they allowed Maribel (our home nurse who also works here) to come in on her days off and work 3-11 pm Thursday and now again Friday 7am -3 pm. For the first time since Tuesday, I left for an hour yesterday to get a bite to eat with Billy and today I plan to take a shower. Thanks a million Maribel!!!! Wooo hooo — the little things that make me a little more sane.
Special thanks to my sister Tammy who brought me some juice and treats, and my mom who made me meatloaf and a sub sandwich (and always helps with the older girls). Billy also helps a ton too (going to work each day, making Ally’s food/girls lunches, taking care of the girls, visiting every evening….). The hospital is now charging me $6 cash (no cc) for a patient tray of food to come to the room (even if I just want oatmeal) and I bring all of Ally’s food in from home. They have a new food service that actually makes things much harder for me when I am unable to leave the room. Thanks for the offers to help. So far, I’ve been able to work it out with Billy and my mom. With Maribel here today, I should also be okay stepping away during the day to get a quick meal (if Ally is okay).
Well – that’s about it.
I will keep praying and I appreciate everyone elses prayers and well wishes.
Angel Ally Blog - SMA Type 1 