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how long is too long

maaucha
0 Recommendations

i had my little girl at 26 weeks, she has been on the ventilator for 4 months now. ok, im concerned if she has been there for too long. anyone with a similar condition out there!

Explore topics in this discussion:

Asthma Dexamethasone Allergies CPAP Decadron Singulair Lasix Aldactone

8 replies

violetsmom

I am so sorry your little one has been on the vent for so long! I know for me, every day was torture with Violet on the vent. What are the doctors telling you? It does seem like an awfully long time.

chandralynn

Amanda was on her vent for just over 3 months, averaging about 30-40% help from the vent. It didn't look like she was ever going to be strong enough to come off. The docs tried her off the first time at 3 months and she lasted about 10 minutes off, then had to go back on. About two weeks later, Amanda grew out of her vent tube and was ready for a bigger one, so her doctor decided to give her another shot at going vent free. This time, she tolerated the CPAP that replaced the vent, and for the first time since she was born Amanda was vent free. Sometimes it just takes a brave doctor taking a leap of faith to give your baby a chance to come off the vent. Do you know what percentage your baby is running at?

AnnieB312

Hi. We're in a similar place. My daughter has been on the vent almost 4 months (15 weeks and 2 days, to be exact). Her lungs are a mess, lots of scar tissue, BPD and chronic lung disease. They might try extubating her next week even though all signs suggest it won't work. Her settings have gone up in the last few days and she's now on 70% o2. The next step is to give her a tracheostomy. I'm so tired of seeing her intubated, on sedation and fighting, etc., that I'm actually thinking a trach would be an improvement. I'm tired and very demoralized right now. Sorry that your little girl is in this situation... but I confess it's nice to know that someone else is going through something similar. Good luck!!

Amelias_Mommy

Amelia was on the vent for 3 months. Her first try also lasted about 10 minutes and the second time she lasted on CPAP for three months (we are now on high flow nasal cannula for about a month and still in the NICU). She was finally given a low dose, gradually tapered, 10 day course of dexamethasone (steroid) to get her off the vent. Dexamethasone worked like magic.

There are lots of studies that show the side effects at high doses are bad if it is given for a prolonged period of time, with babies that don't have severe BPD.

We are at a teaching hospital where our doctor has been part of a study that is trying to prove that kids with severe BPD who are vent dependent and are given low doses, do well without long term side effects. We were told that the effects of having the baby long-term on the vent were worse than the risk of using the dexamethasone. So we signed off on it.

If the steroid treatment had not worked, we would have gone ahead and trached Amelia. Developmentally it is much better for the baby. They can be moved around, exercised, played with and you can see their face!

Hokari

My son was on the vent for 13 weeks. They tried to extubate him and it failed 4 times. Only the fifth time (with his second course of dexa) was sucessful. Now he is almost 7 months and still on CPAP. His lungs are very bad... BUT we plan to bring him home on CPAP soon.

I guess the babies with the very bad lungs stay quite long in the NICU... that's my experience.

@ Maaucha and Annie B: I know what you are going through and I will pray for your little girls. It's such a difficult time and it's hard not to loose hope. I hope so much your girls can get off the vent soon!!!

JessicaK

My son barely compares because he was on the vent for only 5 weeks (he is a 27 weeker). He was however on rather high settings, on the oscillator and 80% oxygen. After a 10 day rather agressive course of decadron (they used the pediatric dosing) he was extubated to vapotherm at 6 liters. We watched him struggle for months after that, he probably should have been reintubated, but our docs avoided it at all cost. His respiratory rate was 130's and his CO2's were in the 60-70's and I just waited for him to finally give up, but he kept going. His diuretics were maxed out as well... diuril, aldactone, lasix. And that helped, it also helped when they pulled his feed tube and stopped pushing all the volume to get the extra calories. He is still on inhaled steriods (Qvar, then Flovent). I think the major things that helped were the decadron, diuretics, and Qvar. Have you done decadron? It may be the push your baby needs.

JoshuasMom

My son was born at 24 week 6 Day and he was on oxygen for about 3-4 months as well. He had all of the usuall preemie ailments like BPD etc. While his Doctors were very concerned about it, they continue to check his eyes and everything else to make sure there were no complications because of the extended oxygen use. All of his other stats were fine and by the time he was finished with the oxygen his percentages were no greater than 96-97% and that was exceptable for the doctors. Mind you he did not have to go home with oxygen but I still watched his breathing. He of course was diagnosed with Asthma very young. I attribute this to his extremely premature birth. He has been on steroids on and off but over the pass 4 - 5 years he has progressed and has been slowly weened from them. He currently is on Flovent and Singulair which are used more as preventive measures. Like many of you all, the experience of colds when the weather drastically changes is more prevalent but not alarming. Joshua-Jesse has probably developed allergies as well but may be more predisposed to those because of family history. I know that each of these precious ones are different in how their little bodies adjust and deal with illness. May I encourage you all that these challenges won't last for long and even if they should seem to be hanging on too long for our taste, I little fighters will survive and prove to be stronger than some full term babies. If these micro preemies can survive the medication, poking and proding, and surgies, then surely they can prove all possible negative perceptions that may come. Fight for your little ones and don't give up. My little guy is living proof as I am sure all of your little ones are to you. Sorry for the long drawn out words but we so need the encouragement! God Bless you all!

sksmaw

I can relate we are still in the NICU my daughter was born at 25weeks 4 days and was on the vent for 6 weeks. They tried weaning her off 3 x with decodron before she could eventually get off.

Her lungs are badly damaged we are currently on the regular nasal canuala at 1 liter. She had PPHN come back 3 weeks ago so she went from 0.4 liters to 1 liter.

She is on the diuretic and recently had a dose of lasix.

Its very frustrating and heartbreaking to see these kids go through this process/

and all we have been through it will get better. We were the sickest baby in the NICU AND THATS A HORRIBLE FEELING SHE HAD EVERTHING THAT COULD GO WRONG GO WRONG. NOW WERE GETTING TO THE POINT WHERE WE MAY GO HOME IN A WEEK.

MAY GOD BLESS AND DONT LOOSE FAITH/

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