I Need Some Wind in My Floppy Sails

The last couple of weeks have been tough for me. I am really trying to stay positive with this whole PH thing, but am struggling! Isla is responding to the meds and is doing well overall, but my mind frequently goes to the worst case scenario. I have connected with some other parents who have children with PH which has been really helpful… but it also is hard because I hear their stories, and they are NOT good! Many of these children are on the transplant list (double heart and lung- only cure!), or are about to be, or already had a transplant. Some parents talk about how their kids have become ‘angels’ because of PH and I hear that and FREAK out! My mind is running round and round in circles and I am hoping that maybe a little vent session here will let me get it out and I can focus on Isla getting better and being healthy… be positive, be positive, be positive… that’s the secret, right? 

Last week in particular I had a lot of anger towards this stupid disease. We had to switch Isla’s SubQ site… it had been 6 weeks and it was starting to go bad. It had been in her left arm, so we put the new site in her right arm knowing that within 24 hours she would be in pain and stop using her arm for at least a day. Well, within 12 hours she started to show signs of pain and within 24 hours, she was in excruciating pain and her whole right arm was extremely swollen. She had a bad reaction to the site, so we had to place another site back in her poor left arm and switch it over. Within 24 hours she stopped using her left arm and was clearly in pain but she started to use her right arm again. Luckily, the site pain in her left arm lasted for just about 24 hours and she was back to her old self by the weekend. Needless to say, it was a ROUGH week! When we lay a new site, we have to give Isla additional medication- histamine blockers and also motrin and tylenol for pain. Here is a picture of JUST her morning meds:


It sucks to have to give her all of that. It sucks to see her in pain. It sucks living with the reality that she is sick. It sucks that she has to wear that stupid oxygen around her face. It all just plain sucks…

Okay- but here is what I HAVE to focus on… Isla is amazing. She is a PHighter and she is going to beat this damn disease. She is getting better and, minus the site changes/pain, she is a happy little girl. Matt is the most amazing and supportive husband and father… he takes such amazing care of our daughter, it’s just unbelievable. He is my rock, my support, my love. Our families and friends and co-workers are by our side, ready to help and listen and be there for us any time we need it. We are surrounded by love on all sides and we WILL get through this!

“We can’t direct the wind, but we can adjust the sails. For maximum happiness, peace, and contentment, may we choose a positive attitude.” 


15 thoughts on “I Need Some Wind in My Floppy Sails

  1. We think of you guys every day. You’re right…it absolutely sucks; it’s good for you to vent as often as necessary. Love this photo of Isla…nice seeing her with hair! You, Matt and Isla are an extraordinary family. We love you.

  2. Pat, Isla is an amazing little girl and every time you post a picture of her my heart smiles. She is a fighter you can just see it in her face. You have an amazing family! You all have come together to raise awareness about PH a disease I didn’t know existed until Isla. You are also an amazing grandma to help Isla and her fight. I can not even begin to understand what you all go through. I am however, happy to see how loved Isla is and how happy she is.

  3. Ellie, I feel so badly that Isla, you & Matt are going through all this—it really does suck. I admire you for sharing your thoughts & feelings, and for giving the updates on Isla’s condition. Although she isn’t physically well at this time, she is a happy baby & blessed to have such incredible & loving parents. Stay focused on the good moments and they’ll continue to multiply. And please, let me know if there is ever anything I can do for you. All my love…Robin

  4. Ellie….You, Matt and Isla are on my mind daily. You are so strong and Isla is a fighter and will get through this!!! I love you guys very much!!

  5. Ellie , and Matt , IT’S heartbreaking what y ou are having to go through everyday but you know she is so worth it. I PRAY for all of you every day. Keep up the good work and try to keep up your spirits.

  6. I just came across your blog while searching out side-effects for Remodulin cause my newly diagnosed 10 year old is very uncomfortable with itching (I wondered if it was normal – honestly, I don’t know what is normal anymore… our lives have been flipped!. We have had Mia on this med only since September, and I’m sick of it already! I too try my best to remain positive, and have a fabulous support in my husband, our families and a few good friends… but I must say – I feel ya sista – being a mom of a PHighter is HARD and draining and mostly heartbreaking; I don’t want to hear the scary stories either. Sounds like Isla is a delightful child, as is Mia – the whole thing sucks, and it’s just not fair! Im sorry you’re in this boat, too… *sigh*

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