I'm Still Here

Well, if no news is good news, you're safe in assuming we've been living a lot of good news around here lately. Our days are still busy, and I still feel like I'm losing my mind most of the time, but we're settling in more each day. Most of our time is spent playing follow the leader, and I'll let you guess which pint-sized dictator is the leader in our house.

We've had quite a few appointments with various doctors and therapists in the past couple of weeks. His physical and speech therapists come twice a week, and his occupational therapist comes once a week. With all of our appointments in Dallas, we've had to cancel and reschedule a few of those appointments, but I think it's safe to say we're making progress. We may be moving at a turtle's pace, but it's progress nonetheless.

We're still having issues with his ear infections, even though he's on round-the-clock antihistamines for his allergies. I don't know what we're going to be able to do about that, but we have an appointment with an allergist at the end of June. Apparently, those are popular doctors, as that was the earliest appointment we were able to get.

He's also stopped sleeping, pretty much completely. I don't know if that's due to his ears, or teething, or some other issue we haven't figured out yet. If he was waking up happy and wanting to play, that would be one thing, but instead he's waking up scared and crying. He continues to cry and toss restlessly for the rest of the night, until we finally get him up before the sun comes up. He's not even fully awake when he's up in the middle of the night, so I don't know what's going on. We're going to try and talk to his ped sometime next week, who will hopefully have some suggestions. He's already on Benadryl and Valium, both of which should be helping him sleep. And if it's nightmares waking and keeping him up, I would think the Valium would help? Just one more mystery for the little man...

We met with his primary cardiologist on Friday, Dr. Pearse, and she didn't have much to add. Holden was pretty unhappy about being at yet another doctor's office, so we tried to get out of there as quickly as possible. We were supposed to go to Children's on Monday for an appointment with the transplant team, but the sewer system here collapsed and Trent had to spend the day fixing that instead. Thankfully, we were able to reschedule to Thursday, and the sewer system got its repairs.

We had an appointment at the Legacy branch of Children's bright and early Tuesday morning to see Dr. Russo, his GI doctor. We were only an hour late to that one, after getting lost and stuck in traffic. They still let us come in, and we had an eventful day there. Our appointment started out with depressing news, which we expected but didn't necessarily want to hear. Evidently, we've run all of the tests and tried all of the medications we can try to reduce his vomiting. The tests didn't show any physical abnormality, so it's not anything that can be "fixed". The dr. thinks the vomiting is caused by one of two things, or possibly both: cardiac output and sensory issues. When the heart isn't working as efficiently as it should, other parts of the body get prioritized. The lungs, kidneys and liver get attention first, and the gut is last on the list. That means that while his heart is working well enough to keep him alive, it's not working well enough to keep his whole body functioning as well as it should. If it's a cardiac output problem causing his symptoms, that won't be fixed until he gets a new heart. Even then, it may not be completely fixed because he may also have sensory or nervous system issues as well. The only fix for that is time. This was depressing news because as much as we knew that this was coming, I was still holding out hope that we'd be able to do something - anything- to help Holden. At this point, the only thing we can do is push the tube down into his intestines so that we can keep his feeds down to promote weight gain. This isn't what we wanted, but we may not have a choice.

After we finished talking to Dr. Russo, our surgeon's NP came in to replace Holden's gtube with a button. That went better than expected, and we were on our way home shortly after. We knew the button was going to take some getting used to, and we also knew that it could be pulled out more easily than the tube. That point was driven home later that evening, when the lines got wrapped around a door handle while Trent was bringing him inside, and the whole thing popped out. As blood and stomach contents squirted out of my little man, Trent and I made a few panicked phone calls (ending up on hold forever) before deciding to try putting the button back in ourselves. (It's important to get something back in as soon as possible, because the hole can close up in as little as two hours. Yikes!) We got it back in, then spent a paranoid half hour making sure that we had placed it correctly. Thankfully, we did, and I spent the rest of the night trying to remember to breathe again.

On Thursday, we went back to Children's for our rescheduled transplant team visit. They don't do anything major at these visits, but Holden does have to get labs drawn, and in the future he'll have echoes and other tests scheduled at the same time. His labs were pretty good overall, although his BUN and creatinine were a little elevated and his potassium was a little low. None of the numbers were off enough to cause major concern, so we were cleared to head back home. One thing I did find interesting was another lab number they follow called BNP. They'll use that number to track his heart failure, and Holden's was in the high 5000's. To put that in perspective, a normal number would be below 400. That number is yet another tangible reminder that no matter how perfect he looks on the outside, he is still far from normal.

Trent's family is coming to his grandmother's house (where we are) for Easter later this afternoon. While I'm looking forward to Holden's getting to share in a family holiday, I'm still a paranoid wreck about germs. We've done so well keeping him in his bubble, and I am so afraid he's going to come down with something. I bought some soap and hand sanitizer to keep by the door, and hopefully everyone will use it without me having to run around squirting people like a crazy lady. Fear and paranoia can do strange things to an otherwise fun-loving mama. I've already promised myself that I'm going to try my best to relax and be thankful for the first holiday Holden's getting to celebrate at home instead of in the hospital. Easter is a celebration in any case, and we have more than enough to be thankful for this weekend.

In between all of Holden's command appearances and therapy appointments, we try to keep things quiet, calm and happy at the house. He's lost so much time, and I want so badly to make it up for him, to give it back. I may not be able to do that, but I can do my best to keep him as happy as possible now. He may not have found his voice just yet, but I know what he loves, and that's more important, right? We spend the days outside, soaking up the sunshine. Holden would live out there if he could, and we tend to let him.

Every day is still a roller coaster, and in between the ups and downs we're trying to find the sweet spot. It's not all giggles and sunshine, but everyday miracles surround us. Holden serves as a potent reminder of that fact.