Showing posts with label chronic lung disease. Show all posts
Showing posts with label chronic lung disease. Show all posts

Friday, July 6, 2012

Flashback Friday~PDA surgeries

June 24, 2011 was Day 38 in the NICU.
This was the day of the PDA surgery for Carlos and Sofia.
Marcos had to wait another week because he was getting over pneumonia.
About 10 days prior, Carlos was switched to the high frequency ventilator.  He was really sick.  A blood culture was taken to check for infections. Also, his x-rays began to show that his right lung was slightly elevated than his left.  Doctors were never really able to explain why or how this happened. The only explanation we got was that his right diaphragm did not function correctly.  Diaphragm paralysis.  It was something that we had to wait out and see if it resolved itself.  Luckily it did and a major surgery was avoided. Carlitos had the most difficulty getting off the ventilator. He failed extubation several times and was on the vent for about 8 weeks.  
Around the time of the surgery, Carlos was weighing around 910 grams while Sofia, my smallest, was 785 grams.  
The surgeons didn't want to operate when they were smaller.  
They were both receiving hydrocortisone to help treat their premature lungs.

Pictures from the morning of the surgery.  Scary times.  

Carlos getting prepped for surgery.



Praying with Sofia



Carlos




Post-op....Carlos



Sofia




Sunday, April 15, 2012

Dealing with Chronic Lung Disease

It's been a crazy week at the Sanchez household.  Feeling again like I am drowning in sickness.  The kiddos have been coughing (nothing new) but a week ago, it started interrupting Marco's sleep again.  So there we were again, pulling out the nebulizer and doing late night/early morning treatments.  We finally made it to the doctor on Tuesday morning, and sure enough wheezing, and now his 2nd (or 3rd) round of prednisolone.  He was a little bit happier in the middle of the week but still having lots of wakings at night. He has been sleeping in the swing for part of the night and then ends up on daddy's chest or our bed.  He has also discovered how good it feels to sleep on his tummy, making me very nervous to let him do this in his own room.  He has been very congested as well and just plain mad at times, and lots of crying in his sleep.

On Thursday, we drove an hour to Oakland for Sofia's ENT appointment.  Our pediatrician and pulmonologist both agreed that it was the next step since she does not always respond to steroids and albuterol and continues to wheeze all the time.  She had a laryngoscopy done to check for upper airway blockages.  Not fun to watch at all.  She was swaddled on this board and then had a thin tube (camera) down her nose.  The whole procedure took a little over a minute but I was a nervous wreck and she hated it.  She gave everyone dirty looks afterwards.  The good thing is that everything was normal, and her chronic wheeze continues to be attributed to chronic lung disease from being born at 25 weeks and being on the ventilator for 6 weeks.  That evening I could tell her wheeze and cough were getting a little worse and sure enough on Friday morning her respiratory rate was pretty high.  She threw up the first bottle of the day.  I did albuterol every three hours, she responded in the morning and was able to keep her mid morning bottle down.  She threw up again around 1:30pm and then took a long nap.  Around four o'clock, I had to wake her.  She ate and threw up again.  At that point, I began to panic a little bit.  Her respiratory rate was in the 80's and she was not herself.  All she wanted to do was sleep.  She had a fever of 102 which ibuprofen quickly brought down but after talking to the advise nurse and the on-call pediatrician, we were advised to take her to the ER.  This is ER visit # 2 with Sofia after her admittance in January for RSV.

I stayed home with the boys and Isabella while Daddy and Sofie headed to the hospital.  She was observed for a few hours and her chest x-ray showed early stages of pneumonia.  We are so glad we took her in and caught it early.  She got a shot of steroids (again) and an antibiotic.  She was released and seen again on Saturday.  She improved a bit but still requiring albuterol, and just as her rash was beginning to heal from antibiotics a couple of weeks ago, a new rash is well underway.  The probiotics aren't helping that much and it breaks my heart to have her go through so much.

Marcos and Carlos continue to cough and I won't be surprised if we find ourselves back at the doctors office sometime before their Thursday appointment for their Synagis shot.

Not really sure how we are getting thru each day on such very little sleep, but we are.  It feels like Isabella has been eating pop tarts, pizza and fast food all week.  Somehow she has made it to school every day.  Each night, we hope for a good night, but when you have three with a chronic cough, chances are one or two, or three will be up coughing and wheezing.  We continue to pray for good health, new lung tissue and mostly strength.   I will admit that sometimes I close my eyes and ask God for at least 4 hours of consecutive sleep.  Hopefully tonight is the night, and if not...I know God will continue to watch over me when taking care of the kiddos tomorrow.



Tuesday, March 27, 2012

Rough days and nights

We have been having some rough days and nights around here.  The babies have been sick on and off since late December, early January and its been really hard on me emotionally and physically.  Sofia never fully recovered from RSV or has gotten hit hard with virus after virus after virus.  On Saturday, I took her to the ER.  She was having projectile vomiting and it seemed as she was having a little bit of difficulty breathing.  Luckily she was not admitted.  She was observed for a few hours, had another chest x-ray, was given some nausea medication, and started her 4th round of prednisolone this year.  At first, we thought it was more tummy related.  Maybe a reaction to the bananas she had in the morning.   But basically her coughing is so bad that she has a hard time keeping her milk down.  We took her to her pediatrician today for her follow up and she found another ear infection, her 3rd or 4th one this year, antibiotics again which usually give her diarrhea.  She was swabbed for a few viruses, including whooping cough.  Her constant cough and wheeze are chronic lung disease to its fullest.  She takes so much medication on a regular basis (pulmacort, albuterol, zantac).  Today the doctor gave her a shot of steroids since she is having difficulty keeping the oral medication down.  The boys also have a cough, not as bad, but enough to be on albuterol every 4 hours during the day and enough to disturb their sleep at night.  The kiddos had started sleeping through the night.  We were blessed with about 2 weeks of it.  But we are now waking up to them coughing so much that they all need a breathing treatment.  Then of course they realize they are hungry and are a bit excited from the albuterol making those late night/early morning wakings way too long.  We visited a pulmonologist a couple of weeks ago who increased the dosage of the pulmacort hoping it would help.  It hasn't and I'm being told there is not much else that can be done.  They need to grow new lung tissue and that will happen with time.  It might take a couple of years. In the mean time this might just be the way our life is and I'm having a hard time dealing with it. It pretty much sucks and it is a constant reminder they were born 3 1/2 months too early.  The doctor tried to put things in perspective today.  She said its pretty amazing that all three can keep up their oxygen saturation because most babies with chronic lung disease struggle.  So yes we are lucky and we are blessed but sometimes I just need to let myself have a pity party and complain about how hard this is.  
Raising triplets = hard
Raising triplets who were extremely premature and a five year old = super hard
I have been having many moments of helplessness and pure exhaustion.  Moments I am not proud of, often feeling like I am failing in the mommy hood department, especially with Isabella.  Lately I have been wishing my life had a bit more normalcy that didn't include breathing treatments, doctor appointments, soo many poopie diapers and throw up. 
Until then, I'll keep reminding myself that this too shall pass.