chronic lung disease

kgeorge1019

i want to hear your experiences with chronic lung disease/RDS/BPD.. my LO is doing great in every other area except respiration, although she is doing MUCH better lately.  she was given another course of steroids (benzomethazone i think?) to help her lungs and that has worked wonders for her.  she was extubated again saturday night and has been going strong on the SiPAP ever since.  She is 38 days old today and had been intubated ever since saturday (except 18 hours on the SiPAP a couple weeks ago). 

i am wondering about the long term effects.. i know every baby is different and there's no way to predict the long term effects.. but has anyone had a similar situation?  how is your baby doing now?  I know she was intubated for a long time and still has a long way to go, i'm just trying to get my head around the possible outcomes and prepare for anything... thanks! 

 

witt0198

Evan was diagnosed with this. He was on the vent for most of 5 weeks before he kicked it, and had a lung bleed at 1 1/2 days old. Honestly, it hasn't affected him like I thought it would. He breathes at about twice the rate of his peers still, but we haven't had to use any nebs or steriods since he came home. I think he has a harder time gaining weight because of the extra energy put into his breathing though. He's also always required more calories to grow than his peers.

I hope your LO does well, and can stay off the vent now.

msalinardi@live.com

Angelina was also diagnosed with this, as well as moderate BPD. She was on the vent for 6 weeks, cpap for 1 week, and the nasal canula for another 6. We still occationally have to use a nebulizer if we feel she is weezing, but honetly we break it out maybe 2 times a month tops. The biggest side affect she had from all he respiratory problems was actually with her eyes. Because she was on such high levels of O2 for so long, she developed ROP (Rhinopathy of Prematurity) and while it progessed pretty far (to level 3), it did clear up on its own and she fortunatly did not need eye surgery.

I will keep your LO in my T and P!

sdtchica13

Corri was diagnosed with mild to moderate BPD about 6 weeks into her 9 week NICU stay, as well as high blood pressure (one of the results of the BPD) which required a course of Lasix. She was on CPAP for the first 2 weeks, then a nasal cannula for another 2 weeks, then nothing for the last 4 weeks of her NICU stay. It wasn't until they realized she had high blood pressure and BPD and did the course of Lasix that she started breathing better and taking a bottle without desating.

We were lucky in that she didn't have any long term effects from the BPD or high BP. She did go home on a diuretic, which we was on from May through late September, but she was fine otherwise and her breathing is great.

Bippy798

My son is a 30 weeker and was only on the vent for 7 days, cpap for 1 day, and then on a cannula until he was 5 months old. He is diagnosed BPD and CLD. They think he might be showing signs of asthma now. The only real prolonged effects is that every time he gets sick he ends up with wheezing and the last two times pneumonia. We have a nebulizer with Xopenex to combat the effects of his illness. They are talking that we may start a preventative treatment using Pulmicort if he gets sick again next month.

lemen99

Andrew was as well. He was on the oscillator (high frequency vent), ventillator, cpap, can cannula probably until 38 (?) weeks gestational age.

He did not come home on oxygen and to date has had no respiratory illness (just colds!) or respiratory problems.

Prayers!

LWilli35

Bobby was on respiratory support for a very long time and was on every type of vent they had.  We seriously discussed the potential of a trach and home ventilation with the NICU docs at one point.  We were on steroids for a long time and stayed on hydrocortisone for months.  We came home at about 5.5 months actual (2 months adjusted) on oxygen, but he'd just really decided about a month prior to our coming home that he'd turned a corner and he took off running.  After about 1.5 months at home, he was off of oxygen completely and hasn't looked back since.  We are VERY cautious with him and are pretty much quarantined for the winter, but he's doing fantastically and is up to 18lbs now!  I know our situation is unique as the doctors are still amazed at how well he's done and how he's thriving, but it's proof that it can happen.