Hope you enjoy the Halloween pics of Melissa and Ally. Didn’t get a chance to snap one of Kristyn in her Minnie costume. You know how teens are! Melissa and I went trick or treating on our block and then she LOVED giving out candy. Ally hung out in our living room in her Tinkerbell costume and a couple of neighbors stopped in to say “hello” while she watched some Halloween and other cartoons. Too cold and germy to bring her outside this year. Ally and I have had a small cold, but overall she is doing well, just more bi-pap and some extra breathing treatments. Kristyn went trick or treating with some friends but didn’t bring much candy home since she just got her new braces. She’ll be picked up in a few minutes to babysit tonight. She’s soooo grown up and earning her own $$$.
Hope everyone else had a great Halloween and has a Healthy Fall!
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.
Just a super quick update since I’m pretty tired and may take a short nap.
Ally is doing better and now has lots of air moving in her left lung. Her right lung has stayed good. No more fevers since being admitted. Rapid flu and RSV tests came back negative, but we are still waiting on the others. We have gone to breathing treatments every 4 hours and will be switching to her home bi-pap without any oxygen. She is on her bi-pap breathing machine 24/7 as she is very tired needs the energy to get better. Things are going smoothly at the hospital.
There is hopes we might even get to go home on Thursday or Friday and that was without me even pushing it. I think it might just be a cold that can run its coarse at home with some higher bi-pap settings and extra treatments (as long as she doesn’t collapse a lung again). I will see how Ally does tonight and tomorrow morning, as we are still using o2 during treatments as a buffer. I don’t want her to catch any germs at the hospital, but I also don’t want to go home and come right back.
Thanks so much for all the prayers and well wishes.
My faith is in god to help Ally and give us the strength to get through these tougher times.
Check out the below amazing, short video that inspired me with tears, joy and hope. Ally also does this for me daily. We can learn so much from others who have disabilities. Hope you’ll take 3 minutes to be inspired too…
(hope this works)
Well here we are again (as some of you might have already read on Facebook). The change of the season begins, colds start in many people (including my 5 year old), and Ally ends up in the hospital AGAIN!!! I hate SMA soooooo much, but my little girl is mentally strong and brave and will get through this! She has been doing very well since July. She had a great Monday morning with grandma and good afternoon, but then at about 6 pm Monday she started to have some breathing trouble and lots of snot. Her lungs sounded a little coarse, but with lots of air moving and then within a couple hours her left lung was completely down. This time, there was no starting to get sick and being able to try to handle things at home. With her left lung completely down, we had to start to use some oxygen bled into her bi-pap and cough assist and she still had some drops into the 50s for oxygen (needs to be above 90). That means, we need help, and no matter how scary it is, Ally needs to go to the hospital. I cried for a short time about it, but need to be strong for her and accept when its too dangerous to handle at home (even though there are lots of dangerous bugs at the hospital too).
We got here about 12 pm Tuesday and they did a good job in the Emergency Room giving us a room right away and following my lead until a room was ready upstairs in the PICU (Pediatric Intensive Care Unit) at about 3 pm. We did an xray which showed her left lung completely down. Interventional Radiology came and did an ultrasound guided IV and got it on the second try which was great. Praying it lasts since Ally is a super difficult stick. We are now in room 216. Ally has been doing pretty well in between her treatments which are every 3 hours. She has an amazing respiratory therapist Loretta until 11pm. Treatments are rough since her left lung is down, but we actually heard some air moving on the left after the last one (right lung is doing good). So far, the rapid tests have come back negative for flu and RSV, but she did have a fever up to 103 at home, so something big may be brewing.
I am praying hard for a super quick recovery so we can get home to Kristyn, Melissa and Billy. We have only gone to school a few times this year due to nursing vacations/shortage & appointments, but I think we are done for the season. I hope we can try again in the spring when germs are less severe, but I just can’t take the risk. Ally will do homebound school, PT, OT and speech to be safe. The staff comes from the school, so we will still need to be extra careful about germs.
On a good note, we just did the MDA Walk this past Saturday with 55 walkers on the Ally’s Angels Team and raised over $4000 (thanks so much family and friends who were able to join us/and or donate). One day, there will be a cure for SMA.
I’ll update when I can on Ally’s site.
Thanks so much for your support, prayers and well wishes.
