Preemies

O2 at home question

What was your home o2 road like? Ever have to increase?

DS2 came home at 4mo actual 1 month adjusted on .25 liters of continuous O2 in Dec. He was diagnosed with Pulmonary Vein Stenosis and pulmonary hypertension shortly after coming home. Our pulmo let the cardiologist take the lead because of the underlying heart condition. We increased his O2 to .75 liters at the end of March.

2 weeks later he had a heart catheter and angioplasty done to treat the stenosis and hypertension. We went to NOLA to have it done by a specialist in PVS. He commented multiple times after the cath about how bad his lungs looked, presumably from BPD.

Last week we went in to have an outpatient endoscope done because of GI issues. While in recovery he was requiring 2 liters of O2 and we ended up being admitted for three days. He was happy as could be and we were finally discharged on 1.5 liters of o2 and a home pulse ox. He is still sating mid 90's and the pulmo is very concerned.

He is now 9mo actual 6 mo adjusted and 15 lbs. the cardiologist is happy from his standpoint that the hypertension is much lower. The pulmno said he has never had a patient with PVS and he plans to come an expert before our appt next week. He is talking about doing a lung biopsy to test for ILD.

Sorry this got so long. It's been so overwhelming and the cardiologist and pulmonologist both looked at me last week and said "I don't know what to do or what to expect with him."
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Re: O2 at home question

  • tlk432tlk432
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    image Usm123:
    What was your home o2 road like? Ever have to increase?

    DS2 came home at 4mo actual 1 month adjusted on .25 liters of continuous O2 in Dec. He was diagnosed with Pulmonary Vein Stenosis and pulmonary hypertension shortly after coming home. Our pulmo let the cardiologist take the lead because of the underlying heart condition. We increased his O2 to .75 liters at the end of March.

    2 weeks later he had a heart catheter and angioplasty done to treat the stenosis and hypertension. We went to NOLA to have it done by a specialist in PVS. He commented multiple times after the cath about how bad his lungs looked, presumably from BPD.

    Last week we went in to have an outpatient endoscope done because of GI issues. While in recovery he was requiring 2 liters of O2 and we ended up being admitted for three days. He was happy as could be and we were finally discharged on 1.5 liters of o2 and a home pulse ox. He is still sating mid 90's and the pulmo is very concerned.

    He is now 9mo actual 6 mo adjusted and 15 lbs. the cardiologist is happy from his standpoint that the hypertension is much lower. The pulmno said he has never had a patient with PVS and he plans to come an expert before our appt next week. He is talking about doing a lung biopsy to test for ILD.

    Sorry this got so long. It's been so overwhelming and the cardiologist and pulmonologist both looked at me last week and said "I don't know what to do or what to expect with him."


    I'm sorry to hear about your oxygen road so far. I don't know that I can help, but wanted to let you know I read your post, I know how frustrating it can be. Our oxygen journey was more due to our elevation than anything else. Our little guy was born at 34 weeks was on oxygen at night until he was 9mos. We had biweekly pulse ox night tests, then monthly because he kept "failing." At 9mos, he kept pulling the hose out of his nose there was nothing we could do to keep it on his face we put socks on his hands, ran the tube down the back if his pj's.... His heart was checked about a month after he "quit" the oxygen to make sure it wasn't enlarged which meant that his heart was working too hard to pump the oxygen, but it was fine he's been off since. I was so glad when he was officially off, but it was scary too...it was a nice security for me to know he was getting air. Good luck with your journey, remember that it may continue to have bumps, but he'll be off of oxygen as soon as he's ready.
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  • DrRxDrRx
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    I'm sorry that you guys are having such a rough road.  Adalyn was on oxygen until she was about 6 months old (2.5 months adjusted), but she stopped needing continuous oxygen about a month after we came home (4 months actual).  She slowly weaned off, first only needing it during feedings and sleep, then just sleep, then just her overnight sleep. 

    (((hugs)))

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  • I don't have any personal experience to offer but know some families with kids with complex pulmonary issues. Have you thought about getting a consult with one of the bigger pulmonary clinics? They can come up with a plan that your local docs can execute. Not sure where you are located but thinking along the lines of Boston children's, CHoP, etc
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  • Usm123Usm123
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    image thishappyhouse:
    I don't have any personal experience to offer but know some families with kids with complex pulmonary issues. Have you thought about getting a consult with one of the bigger pulmonary clinics? They can come up with a plan that your local docs can execute. Not sure where you are located but thinking along the lines of Boston children's, CHoP, etc


    Thank you! We are in Louisiana but we were talking last night about possibly going somewhere else but weren't sure where. I know Boston is currently doing a study on PVS. We go back Monday and I am going to talk to the pulmonologist about it. Our cardio has is working with one in Nola who is big into PVS but our pulmno is at a loss.

    Do you know if Houston has anything? I know they have a big children's hospital.
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  • Im mostly familar with the programs here in the northeast.  But I imagine that Texas Childrens has some really fantastic pulmonary docs.  I definitely think it is worth getting a great team's opinion to rally figure out what is going on.  
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  • MrsRKJMrsRKJ
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    My LO is 9 weeks tomorrow (2 weeks adjusted) and on 1/8th of a L of oxygen and sleep apnea monitor.  His is due to A.  being premature, and B.  His heart condition.  He has an enlarged heart (due to have surgery to correct it next year) and because of this he needs the O2 full-time to keep up with his lungs having to work harder.

    He has it through a nasal cannula which continuously comes out of his nose, and he is no worse for the wear!  I actually put him on his travel o2 to go to the Pedi this morning, and forgot to turn it on!  And he was fine.  So I'm hoping at the next appt at the lung center (6/24) that they will say it's OK to just have him on it at night.  Or night & feedings (I notice that's when he has to work harder).

    Anyway, I think that you should be the squeaky wheel and get as many opinions as you need to until you feel comfortable with the diagnosis (under the circumstances of course!).  You're the only one (well, and your SO) your LO has to fight for him, so you need to do it!  It was hard for me to do, but I'm slowly learning to speak up when I feel something isn't right.

     Good luck to you :) 

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