Help Aly Fight Pneumonia

Hi everyone, I am Aly’s mama. Right now she is on life support and is fighting so hard to stay with us. Her and her twin sister Estella were born at just 23 weeks gestation in 2022. The ICU life is something we unfortunately are very familiar with. Estella passed away at 24 days old. Aly has been home since October of last year with a dozen admissions since then and now, and multiple surgeries. Due to her being born so small and being on life support for the first few months of her life, she has chronic lung disease — meaning she can get very sick, very quickly. The last 3 nights Aly has had a pretty rough time sleeping because she’s been coughing a ton. Nothing I couldn’t handle, she is on a monitor at home and has oxygen support when she needs it. Yesterday I decided to bring her to the ER because she was having retracted breathing and requiring all day oxygen support, when usually she is on room air when awake and during naps. When arriving to the ER they immediately did a chest X-Ray and a viral panel to see if she had a virus or pneumonia. Her X-ray came back with no pneumonia noted. The attending physical in the ER told me if I’m comfortable with taking her home on oxygen support (we came in on oxygen support) that we could go home, and to bring her back if she needs more than 2L of oxygen to stay at baseline. Our oxygen flow meter at home only goes from 1L to 3L, no in between. When we got home she was requiring more oxygen so I bumped it up to 3L from the 1L. She had a bath with that seemed to cheer her up and she was acting quite normal. Fast forward to 10:30PM she woke up after about 2 hours of sleep, pretty irritable so I gave her her duo nebulizer breathing treatment. This is to be given max every 4 hours and if needed more we should take her to ER. She calmed down quickly after her breathing treatment and fell back asleep, but woke up about an hour later super irritable again and had retracted breathing. It was too soon to give her another breathing treatment so we just sat in her room in the rocking chair until I noticed her oxygen tank had run out. We have small spare tanks for transport use that we had to switch to and being that she was on 3L of oxygen these only last maybe 20-30 minutes before you need another one. We had 5 spare tanks. She was coughing and her baseline was about 93% on her monitor for oxygen and I decided she needed to be seen again. In October I received paperwork from Medicaid/Children’s Special Healthcare saying that they need updated paperwork from her specialists with all of her qualifying medical issues so that she can keep the insurance coverage. No big deal. I call the social worker from her pediatrician who quickly sent me the forms to sign and sent them to each of her providers. On November 8th we had an appointment with Neurosurgery and the social worker popped in to let me know she was re-submitting the paperwork for her Neorusurg provider to be sure we cover all of our bases and this one would have her actual doctor on it, not another doctor from the office. She said she spoke to CSHC/Medicaid office and they knew to wait on it. Great. That same week I received a later stating her Medicaid/CSHC expired 10/31 and we will be responsible for any lapsed charges that happen during this time until it’s resolved. So as of now, we are responsible for all of these bills until hopefully it is taken care of. Of course this is when Aly gets detrimentally sick. Last night I decided not to call an ambulance for this purpose and to just risk a speeding ticket 45 minutes to the ER. About halfway there her oxygen saturation dropped down to 79% so I needed to get off the expressway and switch out her tank, thankfully I had extra and brought extra because she was not doing well at all. After switching out the tank I rushed 25 more minutes to the ER and they had got her in immediately. She was on regular nasal cannulas on 3L of oxygen for about an hour. She was still having retracted breathing, so we suctioned her nose and decided to try the high flow nasal cannula. This actually seemed to give her body some much needed rest and she was no longer struggling to breathe, however she was at 100% oxygen support on this. So they opted to try the NIPPV which is a mask that goes over her nose. She fell asleep and though she was still struggling to breathe she seemed to finally be getting some rest. She was at 100% support on the NIPPV when we were transferred from the ER to the PICU. She was completely out of it and just so tired. About 2 hours after this she was intubated, and put on a drug induced paralysis and heavy sedation to try and keep her body at rest. 2 hours after that they put in a PICC line for quick access in case of an emergency, she’s still having a lot of lab draws and we still aren’t sure what exactly is going on — other than they are pretty certain she has pneumonia but it has not been confirmed. They sent out a lung culture this morning to see if anything begins to grow on it and since then they have her on a general antibiotic through IV to fight anything bacterial she may have. She is also on IV steroids. When the culture comes back they’ll be able to better treat her with a better idea of what they’re working with. Right now all I’m asking for is good vibes, hugs, and love. I’ve not cried this much since the passing of her twin. All of this is just taking me back to when she was in the NICU and to when we lost her sister. It’s so hard to see your baby suffer and we have and are continually doing all that we can to keep her here. I am beyond thankful for the staff in the PICU for taking the best care of her, and the respiratory team for keeping a very close eye on her as well. All of this has happened very quickly; even 1 day before we went to ER, she had started trying to walk with her walker on her own for the very first time. If you cannot donate, we greatly would appreciate for you to share our story. If you read this, thank you. We are so thankful for the love and support we continue to receive during this year of a nightmare that has been our reality.