Progress!

Gosh it’s been a while since I’ve posted. I suppose no news is good news! Since Isla’s cath in April, she has come off her pump, O2 and her inhaler. That leaves us with 2 oral meds. One is 3x/day and the other is 2x/day. Luckily she likes them!!! We went back for a clinic appointment in June. Those appointments always include an EKG, Echo and consultation with Dr. Ivy. At that appointment she completely lost her cool for the echo. She’s just too young to understand that it won’t hurt… And at this point she’s expecting pokes and prods, so it didn’t go well. Plus, I think it’s hard to get any 2-year old to lay still for 40 minutes. They said they needed to get a good read at the next visit and if she couldn’t stay calm they would have to sedate her. We definitely wanted to avoid that!

We scheduled the next appointment for November 6th and did everything we could to prepare her. We bought a kids boom box with a microphone on it and pretended that it was an echo machine. We practiced on her and her stuffed animals and kept emphasizing “no ouchie”.


We showed her pictures of other kids having echoes and pictures of her doctors and nurses. Then when it came time to head to clinic yesterday we asked Isla’s cousin to come for moral support. It all worked out and she did great for her echo! They were able to get a good read and no sedation was needed.


Unfortunately she got upset for her vitals and EKG so they couldn’t get that done but the more important part was the echo. We are hoping one day she can have a clinic appointment from start to finish without panicking. It’s so hard for me and Matt to see her get so upset.

The results of her echo were great. Her heart is looking very strong. Her doctor wants her to stay on both meds through the winter and come back in March for another echo. If everything looks good in March she can come off the one medication that has liver damage risks and requires monthly blood draws. That will be amazing!!! If that’s the case then she will only need 4 more blood draws!

We are definitely on the right track! It’s exactly 2 years since Isla was in a medically induced coma. It’s been a roller coaster, but we are so thankful that she is doing well and will hopefully be able to put this all behind her. Regardless we will always be a part of the PH community. It’s a complicated, dangerous disease and it needs more visibility and research. We’d love to see everyone at one of the PH races. Here’s a picture of Isla with Dr. Ivy from the race in October.


And I’ll leave you with one last picture of Isla being a kid… as she should be… enjoying some ice cream.

Advertisements

On Track…

We had our follow-up appointment on Friday. Echo and EKG are still looking good! So the plan is to start diluting her pump medication and once she is down to 8ng/kg/min then she can come off (she is at 16 now). She will be admitted to Children’s when we take her off so they can monitor her. We will spend the night (ugh!) and the next morning she will have to have a heart cath (ugh!). We asked if there was any way around doing the cath, but her Doctor feels it’s extremely important to see what her pulmonary pressures are. We definitely want to make sure everything looks good so we can all be certain that coming off the pump is the right decision, but we are scared! We just have to stay focused on the end result which will be a pump-free Isla. We might just have to stop at a pool when we check out of the hospital! We will find out soon when all of this will happen, but likely end of April/beginning of May. Here are some pix from this last visit!

IMG_2531IMG_2538

 

IMG_2543IMG_2542

Therapy for Mama Fordyce!

One year ago our lives were forever changed. We went from enjoying the joyful exhaustion of being new parents to the fearful exhaustion of being captive in a hospital. At Children’s we witnessed the powerful sight of suffering children combined with adults doing everything in their power to save these young souls. It’s really an indescribable experience to see so much love and so much pain all at once.

Here is Isla just a few days before our new lives started:

IMG_0686

I have never written in detail about our hospital experience, but I would like to share some of what I personally felt as our new prescribed adventure came before us. This will be therapeutic for me, so thanks for listening… and pardon the language 🙂

The first night we were in the hospital we were under the impression that Isla had a virus and they were going to keep us there for monitoring. It seemed like everything was going to be fine, so Matt went home to let the dogs out and planned to return in the early morning. Had we known what was about to happen, he would never have stepped foot outside. Doctors and nurses kept coming in and asking questions and doing tests. Finally at 3am I was rocking Isla to sleep and all of a sudden she started crying. But it wasn’t a normal cry… you could tell something was terribly wrong. She was hooked up to monitors for heart rate, oxygen and blood pressure and every number went the wrong way. Everything was beeping and the nurses in the room took her from my arms. Suddenly they pushed the ‘code’ button on the wall and at least 20 people came in the room. They bagged her and got the crash cart out but luckily didn’t have to use it. I thought she was going to die. I was in shock, so much that I couldn’t physically call Matt. I handed my phone to a nurse who called him for me. He didn’t answer because he was exhausted from not getting any sleep the previous few nights because Isla hadn’t been sleeping. (In hindsight, we now realize that she had been having Pulmonary Hypertension issues.) After a few minutes I called our friends and hysterically said “Isla is not okay and please go and wake Matt up.” They did… oh how lucky we are to have such good friends. Once Isla was stabilized they sent her to the Cardiac ICU where she would stay for the next month.

The next day we learned of her diagnosis of Pulmonary Hypertension and that the previous night she had experienced what is called a Pulmonary Hypertensive Crisis. The next step was to have a heart cath to get the formal diagnosis and to see what her pulmonary pressures were. We had to wait a couple of weeks because she was getting over a cold and they didn’t want to put her under when she was sick… so we waited and waited (in the ICU). We spent her first Halloween there as you can see from her hat. Here arms in this picture were wrapped up because she had IVs in both arms.IMG_0694 They put her on one oral med (Viagra) to help with the pressures in the meantime. The day before her heart cath our nurse told us that in order for insurance to cover and approve her being on any PH med, Isla would have to have the cath med free… meaning she needed to be off the meds for at least 24 hours before hand. If you ask me- this is so messed up. They could tell loud and clear that she needed this medication from her echo (ultrasound of the heart) but we had to do this because without insurance coverage, the medications cost over $100,000/year. Anyway, she came off the meds and had her cath which did not go well. Her pressures were supra systemic- very high/very bad, and she did not respond well to the anesthesia. I know being off of her meds didn’t help either, but don’t get me started! She had to be intubated, paralyzed and sedated and brought to ICU. Seeing your child in this state is unimaginable, unbearable and quite frankly fucked up. Within a couple of days she was extubated and was doing well. Matt went home at this point to take care of the dogs and this was the day we realized we needed help with the dogs because… he left and I was holding her again and suddenly I heard the same cry. Not good… the nurses grabbed her from me and it was déjà vu. Twenty people in the room, the doctor telling me to sit down, the social worker asking who she could call… and the room was spinning. I got up and went into the hallway and started screaming. If you know me, you probably know that I can keep my composure in most situations and it can take a lot to rock me. But not then, not there. I hysterically started yelling at the world, at whoever would listen (which was everyone since I was yelling!) “What the fuck? Why the fuck is this happening to her? She is a fucking baby… this isn’t supposed to happen.” One of our PH nurses heard me and ran over and started talking me through it. Another nurse called Matt and he turned around and came back. A mothers number one job is to protect her child, and I wasn’t able to do anything for her. I felt helpless and lost and empty. Look at her…

At that point, Matt and I set up camp in the hospital. Our parents came to help support us and help us with the dogs. It was a heavy, dark time not knowing what was going to happen. I remember the nurses took all of us into a room to talk about next steps. They were talking about ‘when Isla gets out’ but all I could think about was that my little girl was intubated, paralyzed and sedated and was going to be like that for ‘a while’… (it was about a week, although it felt like an eternity). We were sitting in this room together and the nurses mentioned that she was going to need 24/7 medication delivered through an IV. My previous blog posts talk about how that all works, so I won’t go into detail. I lost it. What do you mean she has to be on an IV? I was still in the ‘what the fuck’ mode. That was the beginning of the end of my denial stage that this was happening to us, and slowly I switched over to acceptance.

The amount of emotion I experienced during that time was unimaginable. The other thing I so thankfully experienced was the sense of support and community. So many people reached out to us in so many different ways (which I have talked about in other posts) but I have to say- that has made a huge impact on me. I think it’s easy to wake up every day and run through your routine which typically is all about you and your loved ones. Which makes sense, right? But our experience shed light for me that we are not just here for ourselves, we are really here for each other. Volunteering your time, your money or your experience in ways such as participating in events, assisting non profits, giving advice, doing research, helping a friend or stranger, whatever it may be. It doesn’t just have to be the formal/literal volunteering. The question I now ask myself is- did I help someone today? Did I make someone’s day better? Because I know that I survived my worst nightmare because of the help and support of my husband, my family, my friends and perfect strangers who did exactly that. Because of them, because of you- I survived.

Thanks for listening.

p.s. November is Pulmonary Hypertension Awareness month. If you don’t remember what it is exactly, visit phassociation.org and tell at least one person. xo

This is when Matt and I got to hold Isla for the first time after she was extubated… and in closing, this is a recent picture of Isla the PHighter:

IMG_2104