So post-Glenn Procedure, Nolan had a little bit of a hiccup with fluid on his lungs that landed him in the hospital for one week. But now Nolan was home and we had nothing left to do but move onward: keep up with physical therapy, speech therapy, doctor’s appointments, medications, etc. It’s still a colossal amount of stuff – especially for my wife – but at least there weren’t any surgeries in the near future and that’s a great, great thing. Eventually Nolan came off the diuretics he was sent home with, he was no longer taking aspirin either. In fact, he was on ZERO heart-related meds at all at this point. He was only on one med for bowel motility and one med for his reflux.
Nolan moved to physical therapy twice a week, and if my work schedule permitted I went to a couple therapy sessions with him. I felt so bad for him because he would scream and scream and cry and cry…it broke my heart. Eventually, though, he started to make some progress and before you know it, he was able to hold himself up for as long as he wanted:
On the day I took this photo, he sat up for 7 minutes straight. It was a definite cause for excitement! Our little happy boy was improving!
Unfortunately he was still way behind in the mouth-feeding department, but we still worked on it.
During this time, we managed to meet and befriend several heart families either in person or online, and it has become a great resource. I definitely encourage you, as a heart parent, to find other heart parents to connect with: ask them questions, meet their kids, just hang out. It makes a world of difference. There are tons of groups on facebook you can connect with, and if you want to find someone local, ask your local heart team to connect you with someone. That’s what happens with us: we get emails asking if we’d be willing to reach out to families who are about to have an HLHS baby. We don’t pretend to know EVERYTHING, but we can definitely share our experiences and lend a helpful ear. Through this we’ve met some really cool people and really nice family. If we work together and lean on one another, our heart warriors become one heck of an army!
During this time we also realized that having a heart baby is pretty costly. We got some of those “this is not a bill” statements from the hospital for Nolan’s FIRST hospital stay (the 2-month ordeal) and it was around $750,000. Yes, you read that right…three-quarters of a million stinkin’ dollars. It blew my mind and actually made me laugh: I mean, really? Luckily I am blessed with having insurance through my employer as well as getting medicaid for Nolan. Still, things aren’t the easiest: my wife couldn’t go back to work since no daycare is gonna take Nolan…nor would I feel comfortable with him in the hands of a daycare while he’s under tube feeds and all that. And even if she did work, either one of our salaries would go completely to paying daycare for 3 kids. What a world we live in, right? And, of course, life happens through all this: things break down, bills pour in…heck, at one point in the summer our oldest broke his collarbone while he was at Vacation Bible School! SHEESH. So we realized that we needed to try to do some fundraising to help us out. Here are my shout-outs to some incredible places:
Kisses from Katie: an absolutely wonderful group from my home state of Connecticut. They reached out to us via a family friend and were so supportive. They started this group in honor of their daughter, who was born with HLHS and is now a heart angel. They want to support families with critically ill children. They have helped us with bills and even bought us a new dryer when ours was on the fritz. They are AMAZING and I can never thank them enough. http://www.kissesfromkatie.org/website/publish/home/homeList.php
Give Forward: this is a great website that allows you to develop a fundraising web page. They handle it all and when your fundraiser is closed, they cut you the check. Easy as that. They were great to work with and always available to answer questions quickly via email. http://www.giveforward.com
Bonfire Funds: this is an awesome company that will design a shirt for you to use as a fundraiser. They have high-quality shirts and give your supporters the option of buying not just a t-shirt, but a child-size t-shirt, a long-sleeve t-shirt, and a hoodie. They have lots of options and they ask you lots of questions about your cause so they can design you a really cool shirt. I was amazed that they actually used a design I made and just added a few finishing touches. In the end, the shirt looked awesome and we sold about 60 of them online! http://www.bonfirefunds.com
Ever been in the right place at the right time? In a previous post I mentioned that my wife and I were pretty disappointed with our in-home speech therapy and physical therapy. It was nice that they were coming to us, but after months, we weren’t seeing any results. The biggest problem was the speech therapist: she was often rude and condescending to my wife (a HUGE no-no) and once Nolan spit up all over her during a therapy session, she pretty much gave up on him. I don’t play that. One day I was walking out to our mailbox, and I’m sure my mind was on 5 million other things that given moment. I mindlessly grabbed the mail and saw just a bunch of junk mail: you know the kind – cleaning services, sell me your house, vote for me, etc. etc…all useless…or so I thought. The last card/ad in the stack was one for a new place that opened very close to our house called Pediatric Boulevard:
I read the card, then re-read it. It said they provide physical therapy, occupational therapy, and…SWALLOW THERAPY. It said it right there in black and white. It was like a God-send. I remember standing there on my front porch and hoping this would be the next step we needed to make. Excitedly I walked into the house and showed it to my wife. We looked them up and saw they took our insurance…all we would need is a referral. That was easy: at the ceremony for the HEARTest Yard (wrote about it yesterday), my wife and I cornered one of Nolan’s Nurse Practitioners and laid out our case for trying this new place. They told us they’ve worked with heart babies before, so we felt like giving it a shot…what did we have to lose? The NP said to email her the info and she would make the referral…we did, and she did.
Nolan currently attends physical therapy twice a week and speech therapy twice a week at Pediatric Boulevard. Yes, we have to drive there, but it isn’t far at all. They’ve shown to be much more aggressive with his therapies in order to push him towards results. No more of this rubbing his face crap…they actually tried to FEED him. What a concept!
You know I can’t say it enough: as a heart parent, you are responsible for the quality of your child’s care…don’t just leave it up to the doctors: they’re very busy. You know your little warrior, so be their advocate and find the best care for them!
Upon being discharged from the hospital, we were told we’d be getting a wealth of help at home: nursing visits, physical therapy, and speech therapy. Combined with the myriad doctor’s appointments that Nolan had, there was a ton going on and I’m amazed my wife kept up with it all. She’s amazing.
So basically the nursing visits were incredibly simple: they wanted to be sure we knew how to draw and administer his meds, how to record his weight and sats, how to do his feeds, etc. They only visited a few times because they figured out quickly that we had those things pretty much under control. Once I commented that the nurse must see some pretty non-compliant families. She said, “Oh you can’t imagine…” It was nice to feel like we were doing something correctly, and after a few visits she stopped coming back because she wasn’t needed. That was a bummer because we were hoping we’d get regular visits from a nurse that would help with his care…no dice.
Physical therapy was there to help him with his arms and legs and prepping for sitting up, crawling, and eventually walking. Nolan spent over a month laying still in a bed so he needed a lot of work. Unfortunately I never got a chance to meet the physical therapist because I was always at work, but she tired to work on his wrist and tried to work with him on tummy time once it was OK’d by the cardiology team. One big note: you won’t be able to lift your heart baby under his arms post-surgery for several weeks due to the chest closure. This is serious stuff, just scoop him up until you get the ok!
Finally we had a speech therapist come to help Nolan learn to eat by mouth. Before we left the hospital we were told that in-home speech therapists were very few and far between so we would have to stay on them to get a therapist out to our house, particularly in the county we live in. Luckily we got someone to come out rather quickly. Unfortunately, though, this speech therapist SUCKED. She was about as friendly as a potted plant and always seemed annoyed she was working with a baby. I remember one day she said she had to take his vitals and I said, “The nurse just left and took his vitals, we wrote them down and you can use those,” and she replied, “Oh good…I don’t do well taking kids’ vitals.” THEN WHY ARE YOU DOING THIS JOB?!!!! Ugh. She was often rude and short with my wife, and I don’t play that. And she spent an insane amount of time just doing these face-touching exercises with Nolan: rubbing his cheek over and over and over and over….and over and over. Eventually after forever she tried to actually put something in Nolan’s mouth…and due to his really bad reflux, he spit up all over her. HA HA. From then, though, she seemed really annoyed and distant…and we were getting nowhere. It was really frustrating.
This was our routine, though…I wished Nolan would just come home from the hospital and in a couple weeks be a normal baby. But this was a new normal: it was going to be a long, hard marathon. And like I mentioned many times already: it was up to us to be sure he got the best care possible.