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.


  1. Oh Angie, you are truly amazing. I'm so sorry you have to go through all of this and I feel so badly for those babies. Veronica is just coming out of her coughing and wheezing after almost 3 weeks.....I can't imagine going through that with 2 more babies. I will say some prayers that they all get well and ask God to continue to give you strength. Hang in there. Someday, you will look back and ask yourself how you managed to get through these days. You are doing great! Your children are blessed to have you as a mother!

  2. You seriously deserve some kind of award!!! My little one was born at 24 weeks, and has chronic lung disease as well...I couldn't imagine 3 little ones all coughing and sick at once! I really hope things get better soon, and they all feel better! I will say a prayer for you and your little ones! Hang in there, it sounds like you are one tough Momma! :)

  3. Poor babies!!! And poor mommy getting no sleep. I cannot imagine what this is like for you. I will say my prayers for your babies and think good thoughts!
    On a side note, I noticed you must live somewhere in the Bay Area? We live in Santa Cruz...

  4. Your strength and faith are so admirable. We are praying!

  5. I am SO sorry! You are one amazing mama who must be totally and utterly exhausted. My one encouragement is that RSV and cold and flu season is almost... almost over. The summer will be so much better for you all. Praying for you and your sweet babies.

  6. I had one less baby than you with my twins and that was hard enough. You must be one very, very tired mama! Isn't it amazing how you just keep going even with sleep deprivation because you have no other choice. Hopefully, you'll be able to look back on this soon and say, "How did I do that?" Summer is right around the corner. Hope your kiddos are all feeling better soon and you can get some sleep.