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Ventilator dependent - need some hope!

Hokari
0 Recommendations

My son (28 weeker, 770 gr) will be 12 weeks tomorrow. He is still on the ventilator. When he was 6 weeks he received a course of Dexamethasone with this he managed 5 days on the CPAP, but then he got too tired and had to get back to the ventilator. After this the new plan for him was to let him grow and then try again.

So now he is 2,3kg and last Monday they put him on CPAP. His oxygen level was around 32%, his pressure 9. Unfortunately he made is only 5 days again and today he was put on the ventilator again.

I am so depressed ! I am afraid that he will never be able to come off the vent...

Are they any other parents out there with similar experiences whose babies who stayed a long time on the vent and made it in the end and are doing fine now? How long did your babies stay on the ventilator?

Anyone can give me some hope?

Explore topics in this discussion:

Asthma Bronchopulmonary dysplasia Surgery Sildenafil Dexamethasone CPAP Viagra Hypertension Hernia Pain Pulmonary hypertension Esophageal atresia

37 replies

RhondaLynn77

Did you get the steriod shot before you delivered? Our son was 26 6/7 and 580 grams, he was on the ventilator for 1 week and then CPAP then back on the Vent for another 3.5 weeks. Due to the vent he has Bronchopulmonary Dysplasia. He is on O2 at home and stayed in the NICU untill almost 1 month after his due date. He is now just over 7 months actual and 4 months corrected. He had 2 surgeries where he was intubated again. He has had 4 hospital stays since he came home because anytime he gets ill, it drastically affects his lungs, one of these times they had to intubate him again for 2 days and was diagnosed with Cor Pulmonale with pulmonary hypertention. The good news is that as he grows he will gain new lung tissue and this will solve his BPD, we just have to wait until he grows. I imagine that your son will come off of the vent when he is able to. I know it is difficult we spent 118 days in the NICU and the only thing that got me through it was the Lord Jesus Christ. Lean on Him in this time, he will bring you through. Jeremiah 29:11 says: "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

Hokari

Thank you for your answer! Yes, I received the streroid shots before I delivered. My son has severe Chronic Lung Disease, he also has pulmonary hypertension.

Today the doc told us there is a possibility that he won't make it. I'm still in shock... I thought we just have to be patient and at some point he will be able to breathe on his own. I can not even imagine loosing my little one!

jchristene

my twins were born 23wk 6 days and the other twin 24 4 in dec 08 not due till april 09. I was able to get the steroid shot which helped. first twin 1.7 lbs and second one was 1.1. twin a had to intubated 4 times but finally able to go on cpap. twin b only once was on cpap. my twins came home with in two wks of each of each other in late april 09. they r fine. thank god. no head or heart problems and both did not come home on O2. my husband had such a strong faith that he believed and knew that god would take care of them. Now reflecting months later. I see that he was right. I also too have a strong faith abt GOD. My babies r true miracles. now that they have been home. they r doing very well. have faith. God had his plan for everything and everyone. !!

Tany123

My son was on the ventilator for 11 1/2 weeks. I know it may seem like they will never come off, but one day he will decide it is time to breathe on his own and he will do it. Unless their is some major damage to his lungs and the dr.s would at that time let you know and probably suggest putting a trach in. We will pray this is not the case and your little man starts breathing soon. I feel your pain and disappoinment, (been there, done that) and I promise you it was nothing short of a miracle from God that my son came off the vent when he did. We had a wonderful Man of God, who is operates in the gift of faith, come and pray for Morgan, and he told us that by the weekend, morgan would be off the vent. Well we believed that God would do what he said and by that friday at 2:55 they extubated morgan from the vent, after two other failed attempts, and we never looked back. I will be praying that God does this in your baby, if he did it for mine he can do it for yours, you just have to believe. Prayers coming your way,keep telling him that God is going to work a miracle and get him off that vent. Let us know when this happens so we can rejoice with you.
Tanya

mackenziestory

hello, hope ur spirits are high. my name is Beverly. currently i have a little girl mackenzie 27 weeker 4day, now three days old in the nicu doing very well. however i have had a 25 weeker now almost 6 little girl tiffany. she taught me so much. she too was on and off the vent. trouble with the cpap eating A and B's. cant remember just how long, which seemed like forever @ the time. i was so worried i had her baptised in the incubator on my birthday. anywho. i was reading ur son has pul. htn. and cor pul. i also had a son 34 weeker born sick r/t a virus called coxsackie virus type b which gave him CHF along with pul. htn and many other compl. i was wondering how did they treat ur son. my son was on nitric oxide i believe which cured his pul. htn along with dobutamine i believe to control the pressures inhis lungs . my story is extensive and really unorganized but there is light at the end of every tunnel. i too believe stronger than ever in the power of Jehovah our father. and far as the docs are concerned they have to tell u the worst poss outcome. b/c if they tell u everything will be fine. they might not be able to hold this to be true.. so it is ur job to trust in jesus and know in ur heart that he will not give u anything u cannot handle. i know it is extremely hard. u have to weigh it out. u dont want ur son to suffer or have a highly complicated stay on earth just to please ur need for ur child to remain with u. at the end we are all gods children and sometimes he calls them home. to be angels and do his work in a whole new way. i lost my son 34 weeker to sids 7 weeks after his arrival home. i enjoyed him and to this day he was the cuttest most handsome baby i ever seen. i miss him he will always hold a place in my heart. and i know he his watching over me and his lil sis and other siblings. i hope that u find this helpful. just know u are not alone. when it seems that way . God is watching and if not carrying u. over this stormy and dark time. my dad told me that something has to be broken for jesus to come in to help fix it. and right now u and ur family is broken. just let him in.
if u ever need to talk let me know i am here.
bmclaughlin00@aol.com

bbnme

My son is a former 26-weeker (now 2-1/2). He was on the ventilator for 14 weeks and then CPAP for 11-ish weeks. He was in the NICU for 225 days and came home on 2 liters of O2, still wearing it. He had 4 courses of dexamethasone. He would only come off the vent for 12 to 14 hours, though, with each steroid course until the last one in which he stayed off. It sounds like your son is doing pretty well. Being patient and waiting for lungs to grow is maddening, but remember, he can come home on a vent if he has to.

RhondaLynn77

one of the treatments for our sons pulmonary hypertension is sildenafil (viagra). I guess it is not very common for Dr.'s to use but his pulmonologist is treating Elijah with it. What is your son's name? I will be praying for you. Have you considered a second opinion?

LakaisMom

I too went through this with my son...he was off and on his vent four times. Three times he self extubated.

I just wanted to add something...in our case it wasn't his lungs so much as his upper airway. He had strider (caused from being vented so long...it was a catch 22 and sooo frustrating!)) and a paralyzed vocal cord (PDA surgery)..and reflux. This all combined caused him to fail each time until ENT scoped him to see what was going on in there.

I doubt your son didn't have his PDA surgery did he?

Either way...maybe talk to your doctor about upper airway issues, it could be swelling (like we dealt with) and not his lungs.

Hang in there!

IansMommy

Ian's NICU roommate was on the vent for almost 4 months. Before they noticed she had an underdeveloped esophagus. It was really small at the top wear it connected to the mouth. I have no clue what it's called.

After correction, she improved greatly. she eventually went home on room air.

IansMommy

I googled...

I think it may be called esophageal atresia
http://www.nlm.nih.gov/medlineplus/ency/images/ency/fullsize/13949.jpg

Maybe you can ask your Dr about it

Hokari

Thank you so much for all your input. I really appreciate it!!!

My son's PDA closed with meds, so he didn't have an operation. I will ask the docs about his upper airways. But in case it is swollen, what can be done against it?

I will also ask about this esophageal atresia, it might be a good idea to take a look inside.

The docs also told us about viagra. But they said it's still experimental and the benefits are not proven yet.

When he was on CPAP last week, he looked actually quite comfortable, he was breathing nicely. But his bloodgas went up to far, when it reached the 80ies, they had to put him back on the tube.

So far the new plan is to wait 7-10 days and then try it again to extubate him. They don't want to use dexa this time, but if he fails again, then they want to give him another course. I'm not so confident... what will be different in 10 days? He will have the same problems... Also he is gaining weight quite slowly, only 10 grms a day.

My son's name is Mattis. Thank you so much for praying for him!

Hokari

@LakaisMom:
I just googled what at strider is, since I haven't heard about this before. Acutally my son also makes noises when breathing, not all the time, but often enough. The nurses told me because there is a leak from the tube (now he has an oral tube).

Could strider be a reason that he is not able to breath on his own?

SEngel

Hokari,
My daughter had been on Viagra for 8 months now with no side effects, accept curing her P.H. She had to be trached, and still has O2. We are just letting her lungs grow, and get stronger. You may want to consider LLoprost, a inhaled steroid. I know many Mothers and nurses on this site swear by it. Do a search on it and you will get more info than you can imagine. Don't give up! We were only given a 5% chance, and we are making it. You may want to switch Docs.
Good Luck!!
Steve

LakaisMom

I cannot say for sure its the reason...but it could be! It was for our son because swelling was so much his throat was almost closed, it had swollen around the tube.

They gave him medication to reduce the swelling, it took a few tries but it finally worked. And he went from vent to CPAP (for 2-3 three weeks tops) and then low flow at (20%) for two weeks and then nothing. It felt like he flew off the vent once it was off, but maybe it felt that way since he was on it for 77 days.

I would ask the doctor about the strider..I believe (Im not a dr and can only speak from my exp) that they really cannot hear the strider unless the tube is out. And I was often told "its just a leak" until they finally said he has strider.

These babies can also develop cysts or other abnormal growths due to the tube. So it might just be worth asking.

I dont want to get your hopes up because I cannot possibly know if this is the cause, my son did not have a lot of lung issues. He does have BPD but his lungs were always very good considering.

Sometimes these guys just need more time, they need to grow more. As hard as it is to see our babies vented, sometimes we sadly have to give them time to get there.

And he will.

*hugs*

RhondaLynn77

Our sons Pulomnary hypertention on his last echo was not present after he was on the viagra for 1.5 weeks. All I can say is it is working. When they extubated Elijah he got a three day course of hydrocortosone to help the swelling go down. The MD told me the older they are the less chance of the steroids harming him. Also if they use a small dosage and for a short period of time the less chance of problems. After he was extubated for 1.5 months he had another course of steriods for 7 or 8 days because his BPD was so bad. You and your son are in my prayers!

rainysmom

Our daughter was born at 26 wks at 610 grams. She was allergic to surfectant, she coded, was successfully revived, and had 3 or 4 proceedures for her lungs. She had a cyst and a tear in her lungs when she had her pda ligation surgery. I don't even remember many people looking us in the eye those first 6 weeks or so. There was never mention of going home, or even of her having a future. I stopped them when they were getting ready to tell us to prepare for the worst. She did survive. She came home on oxygen, got off after a few months, has some asthma now, but no symptoms for over 6 mos. She's 2 1/2 now. Time has made a big difference for her. I was never shy about grilling the docs, and asking for consults. I had friends and family research her "issues" for me and find new docs. This seemed to keep the staff on their feet. Hang in there......I'll keep praying for you. Keep reaching out for support.

Hokari

Thank you all for your support! It really helps to read that other babies went through similar problems and made it.

My son had a heart echo today and it didn't show pulmonary hypertension today. The doc said it come back any day, but for today it's good news.

They want to give my son now a second course of dexa. I am not so happy about it, but what choice do we have? He needs to come off the vent and that seems to be the only thing that can help him.

Thank you so much for praying for my little one!

sksmaw

Do you remember the steriod dose your son had we are trying a dosage with my daughter before we go to the decodrone

Hokari

My son received the dexa for one week. They said the last 3 days of this period was weaning down. I don't know the dosis, the docs just said it was the low dosis.

My son will receive another course of dexa next week as it looks.

Good luck with your daughter!!!

itu

yes, you are not alone my aby girl was a 25 weeker, she was on vent for a about a month if not longer, then they thougt she was getting better, so she was put on c-pap, and sipap, for about 3 wks, but the she sarted needing for oxygen cos she develpoed pulmonary hypertension due to P.D.A that she had, ther was even a time that she was on ossccilator on 100% o2. then her lungs started to heal slowly, and on mothers day, may 09 my angel extubated herself. she was back to c-pap, bt this time only for five days and she was on high flow since then. she started off wt 6 liters 02, in may she is down to 3/2 today july 13, however while on vent she was on nitric-oxide and it really work for her. she even got nitric-oxide on this high flow. finaly nitric would be cut off completly tomorrow 7/13/09 and they hope to continue to wean her off the oxygen, since she is only requiring minimal o2, just about 28 to 30% now. so my dear hang in there and put your faith in the lord. when you ask God for assistance, he will never let you down, i am telling you, my baby is a testimony, though still in nicu, my God has really answer my prayer because of my faith in him. sometimes we have to take time to pray real well, ask God for forgiveness, lend an helping hand to needy, surely God will answer our prayer. i will remember your beloved in my prayers. take care and remain blessed. my baby was 1Ibs 6 ounces, today she is almost 10Ibs, so don't loose hope.

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