Help Laoghaire Recover from Necrotizing Pneumonia

On 2/20, Laoghaire was taken to Urgent Care for a high fever, lethargy, and shoulder pain. After an xray, it was determined that she had a bad case of pneumonia and her right lung was completely full of liquid. Antibiotics, a steroid, and an inhaler were given. On 2/21, we drove her to Kingman Regional because she was getting worse. Her O2 was in the 80s and they had her on high flow oxygen. She tested negative for Covid, Flu, RSV, and Strep. Another x-ray and an ultrasound were done and she had indeed gotten quite a bit worse in less than 24 hours. They admitted her and we had her 1st sleepover in a hospital. Her stomach also bloated out so far and they let us know that she had an ileus and her intestines weren't moving in the way they should be. She also was in such extreme pain that she couldn't move on her own at all and when we had to move her, she would let out the most blood curdling screams and her oxygen would drop.

On 2/22, while sleeping, her heart rate jumped to 225 and they made the decision to fly her to Phoenix Children's. She took her 1st helicopter ride and was admitted into the PICU. All of her vitals were wildly unstable, and they added more antibiotics, breathing treatments and other medications to help her. More xrays and ultrasounds revealed that none of the treatments were doing much of anything, but we were all cautiously optimistic that she just needed a bit of time. On 2/23, based on how bad her right lung still looked and sounded, they decided to move us to airborne precautions while they tested her for Tuberculosis and Valley Fever. Her temperature started to hit 103. On 2/24, after her labs came back much worse than the days before, they made the decision to put in a chest tube. During surgery, 300ml of infected fluid was pulled from her right lung, and since another 160ml have drained. They sent the fluid for testing as there was some worry that she had a MRSA infection in her lung. After over a week of being unable/unwilling to eat solid food, the minute she came out of recovery, she finally ate! Her intestines started doing their job again! Her vitals improved and she was finally able to get off the oxygen!

Unfortunately, last night, her pulse jumped back up to 160 to 190, her O2 dropped again, making oxygen necessary again and temp spiked again. This morning, her labs were unfortunately even worse and they decided she needs an albumin transfusion and a PICC line. PICC line was placed at noon today and she's in great spirits. She definitely seems to be feeling better and has regained a part of her appetite but she's definitely got a ways to go before we can go home. Her xray looks sooo much better today but her infection is severe. We are still waiting on the TB and Valley Fever test results to come back, but the fluid tested negative for MRSA. She's still not able to do much moving on her own but she's not screaming when she has to be moved. Please keep her in your thoughts and prayers.

2/27 The night they put her chest tube in, we had our light on for over 50 minutes while her little body was BURNING from a 104 degree temp before I stepped out into the hall and started yelling. It doesn't help that the hospital is at capacity and they don't have enough staff. We can't keep her fevers away for longer than 3 hours and then it takes at least 2 hours to get them down. She's on a scheduled med routine for her fevers but it doesn't seem to be helping. She is fairly miserable today. She's insanely uncomfortable and so tired. She seems to not really be able to hold her urine or her bowels which is disheartening to her as she's a "big girl" and doesn't want to be wearing a diaper, but unfortunately she has to. Today, the doctor discovered that at some point her drain has been disconnected and never reconnected. After reconnecting she's drained nearly 100ml in about 4 hours. Her TB test came back Undetermined so now we have to wait for the results of the re-test. She is eating a bit more, but is also throwing up a bit more. They did another ultrasound and xray last night and let me know that her pleural effusion has gone from Moderate to Mild but that her infection appears to be spreading.Tomorrow will be a full week of her being hospitalized and I have NO answers and I feel like I'm just sitting here watching my baby decline.

3/1 Yesterday morning, the doctors came in and told us they think she may have developed Necrotizing Pneumonia. The only way to confirm would be a CT, but all of her teams had to be in agreement. Physical Therapy then came in to start working on getting some of her strength back, as well as just get her moving. She hates it, but she's got to do it. Night team came on and because her fevers were unmanageable, they went ahead and took her to CT in the night. This morning, the doctor confirmed that she has Necrotizing Pneumonia. Pieces of her lung are dying or already dead. They said that because of her age, her lungs SHOULD be able to regenerate on their own, but if they don't, she will need surgical intervention. They said her recovery will take months. She's in a great mood this morning. She ate a decent breakfast and is up playing in her chair. Today's update: She has a pneumothorax and may need a second chest tube. Doctors have said to expect her to stay for a month or two.

Despite everything, Laoghaire remains resilient, showing glimpses of improvement. She has a long road ahead, and her family needs help covering mounting medical expenses. Any support, whether through donations or prayers, is deeply appreciated.

***UPDATE 3/10: Today is day 18 of Laoghaire being in the hospital. She had a few days where she felt decent and her labs were improving. Then out of nowhere, everything seemed to get worse again. She's either coughing up small bits of blood or throwing up bits of blood on top of everything else. She wasn't really coughing much unless her fever spiked, but now she's coughing pretty much all the time. She won't eat and when she does, she throws up. They have her on Zofran and a stomach acid reducer and she still can't keep food down. They did another CT, and the infection that was around her lung has definitely improved but the inside of her lung is filled with abscesses. She's now back on 2 IV antibiotics. She's in significant pain and has spent the last 3 days on morphine. Today, they added oxycodone to her list and we're hoping she can get some comfort and rest. It is so hard watching your baby suffer, but it's really hard watching her lose her feisty self. She's definitely not able to fight as hard as she was.

There are some surgery options but her surgical team doesn't feel like the reward outweighs the risks. Because of how many abscesses she has, if they do the surgery, they can almost guarantee that they will just be adding more holes to her already damaged lung. I again want to thank everyone who has continued to pray, sent us care packages, donated and shared our gofundme. We have a long ways to go before she'll be stable enough that they'll even consider letting her go home and the bills are just piling up.

Update 3/13: she tested positive for RSV 3 days ago. However, Laoghaire has had a pretty great 24 hours! She's had no fevers, no supplemental oxygen, and has gotten back a small bit of her appetite. She needed only 1 dose of pain medication yesterday morning and has since been on her scheduled tylenol and ibuprofen. Part of her collapsed lung has re-inflated on its own which is amazing news. They actually think the coughing from the RSV helped inflate the lower portion. The upper part of the lung is still being pretty stubborn, but that's a discussion for another day. Today is for good news! We are all cautiously optimistic that she's finally on the long road to recovery, but we're just happy to possibly be to that point. Please continue praying!