Oh Bella! The littlest things are so hard for you. A simple sponge bath took 6 hours to recover from today. The O2 had to be turned up and she was so fussy. She vomited three or four times. It’s days like this that I look around and think that I need to make contingency plans for the kids for if and when we have to go back to the hospital. My mind doesn’t want to go there.
I watched Divine Design today – what else can you do when you are holding a baby that is attached by a 3 foot long tube to her huge Oxygen tank? The episode was filling the “Make A Wish” wish for a little girl who has been in and out of the hospital her whole life. That one got to me.
Most of the information that I read online about pulmonary hypertension is about primary PH, not secondary or associated pulmonary hypertension (the kind we have). So I’m having a difficult time learning more than basic information. I told my sister-in-law that I wondered if Bella would ever get off of oxygen and she reminded me that I had wondered if Bella would ever get out of the hospital. True.
Time. We just need some time.
I'm sorry that it is still difficult. I hope that she continues to get better and not go backwards. A plan B for the girls isn't a bad idea.
I wondered the same thing with Addysen, she will get off of O2!!
I have secondary PH caused by COPD. When you have secondary PH both problems should be treated. Often treating the cause will help the PH.
I am on oxygen for 15 hours a day.Not because I need it to breath but because its part of the treatment. It takes the pressure off the heart which the heart is under because of the PH and does help to keep the oxygen levels above 90 which is important.
The oxygen is a nuisance but as I look on it its a life saver so its a thing you tend to grow to tolerate.
Your daughter will stay on it for as long as she has PH perhaps for not as long as she is now but she will continue3 to need it a large proportion of the time.
There`s lots of research going on about PH now so there is a lot of hope that a cure will be found before long.
Hi Shelly, This is Joyce. I just sent you an email that will give you a completly different perspective than Jack here. I will summarize for others who might be reading this since his post is here: We said no to the oxygen when Sarah was about two. We did not want her tethered to a tank for the rest of her life. She is almost 20 now and has had a very active life style alongside her peers!! So there are many options and differing treatments. As Bella grows, things will change and you will determine what is best for her and your family. Hang in there. Our prayers continue to be with you.
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