Saturday, April 23, 2011

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.

Saturday, April 9, 2011

Livin' the Dream?

Again, I've been having a little bit of trouble finding my way to the keyboard to update the blog. Our lives are still a little crazy, but we're settling in and forging new routines. Our lives are crazy, but full, and we are blessed.

Holden has finally found his laugh again, and I think it's my favorite sound in the world. We don't get to hear it often enough, but the few times he's shared that cute little belly laugh have melted me into a puddle. He hasn't laughed or giggled since we took him to the hospital on Nov. 1st of last year, and I was so afraid he'd lost it. He's also mastered the art of peek-a-boo, and it is absurdly cute. Of course, everything he does these days is ridiculously cute.

We went to Dallas on Tuesday for his first appointment at Children's since we left. It was a long day (with only one of the three appointments we had scheduled actually happening), but I think things went pretty well overall. Not much has changed from a cardiac standpoint, although he has moved up on the transplant list to a 1B. He's lost a little bit of weight, and falling off the growth chart again earned him a bump.

We haven't been able to get his weight back up since his last surgery, even with continuous feeds going 24 hours a day. We're trying to increase the calories in his formula, but his system doesn't seem to know what to do with those extra calories, and it's coming back up even more forcefully than before. The night before last, I was treated to a conditioning rinse of regurgitated Elecare, covering my entire head. Oh, the things we'll tolerate for these little miracles.

He has an appointment with his GI doctor on the 19th, and hopefully we'll come up with a better plan of action to curb his throwing up then. So far, most of the doctors are out of ideas, and their solution is to move his gtube to his intestines and bypass the stomach entirely. I don't think that's much of a solution, since we'd be fixing a symptom and not the original problem. We would be going backwards against any progress he's already made. He'll also still throw up, it will just be stomach acid instead of food. I'm sure he would agree with me when I say I think that would feel even worse. Of course, we may never know what's going on with his digestive system, and I have to learn how to be okay with that as well.

Our next appointments are with his regular cardiologist, the transplant team and the previously mentioned GI doctor, all in the next week and a half. That's on top of his regularly scheduled therapy visits to the house, and visits to his ped for ear infections. He is one popular little boy!

We've gotten the evaluations out of the way for speech, occupational and physical therapies. The results weren't unexpected, but heartbreaking regardless. His PT evaluated him in three main areas- Stationary, mobility and object manipulation. He ranked in the 4th percentile overall. Ouch. We obviously have a long way to go, and many months to make up. He was in the 12 month range in object manipulation, which was his highest. That didn't surprise me, as he's been playing with small toys even in his hospital bed. He is in the 9 month range for the stationary portion, and only in the 4 month range for mobility. He doesn't crawl, walk, or even pull up anymore. It's like he's forgotten his legs, and forgotten what they're used for. He screams when we try to put any weight on them, but I'm not sure if he's terrified or hurting. Like I said, a long way to go.

We also have a lot of work to do in speech therapy. I know I can be premature and dramatic at times, but I am approaching panicked that he has no words. He's just now started babbling again, but he should at least be saying mama and daddy by now. Maybe he's just saving it up? He can be a tease... However, he seems slightly less than not at all interested in learning to speak right now. I wonder if his lack of language has been a tender mercy up to this point.

I still have moments (and days) when I am completely frustrated, overwhelmed and angry at nothing in particular. But then there he is. All 8 kilos of soft, adorable superhero. He melts me, utterly and completely. So I pick myself up and start the daily process all over again. I give him his meds, feed him what I can, play peek-a-boo, read to him and rock in the chair. It's good couples therapy, for sure.

I'm learning this journey is all about going with the flow. I'm not there yet, but I'm learning. I'll continue to worry, pray and think silly thoughts about random scenarios that will probably never happen, because that's what I do. Because there's nothing else I can do. Your mind tries to save your heart in strange ways when things aren't perfect in the world. But sometimes hearts can't be shielded. Some of the things we put our baby through break mine into a million pieces. On those rough days, it's a good thing Holden has enough heart to carry us all. :)

Sunday, April 3, 2011

Wishing and Hoping

Life continues to be good to us at home. Our own special brand of good, but good. We may be operating a few degrees east of normal, but we are together in our own home, and it's a healing time for all of us.

We're still just getting through the days, one day at a time, but those days are getting better and better. Watching our boy return back to us, bit by bit, is a gift. I'm not ringing any victory bells just yet, but there's no ignoring the amazing grace that has covered our family these last months.

As much as I try to bury my head in the sand and pretend we are a normal family, reminders creep back in the oddest moments. Every time my phone shows an unavailable number on the caller ID, I have a small panic attack before I even answer it, thinking it's the transplant team calling to change our lives forever. Every time someone asks for more clarification on his transplant process, it serves as another reminder that we are not finished with the race just yet. (To clarify, I don't mind the questions at all, so don't feel bad if you are one of those who have been asking questions. I need a little reality in my fantasy bubble now and then.)

We start our rounds of appointments this week, and I'm dreading them. It's so much easier to pretend that he's going to be okay when he's here in the bubble. Taking him back to the hospital means taking him back to the reality that he's not, and will never be, a normal kid.

His own heart will take him as far as it can, and then - God willing- he'll have the gift of a new one. While it is a gift- the most precious gift- it will still not be enough to make him normal. The risks are real. The risks are huge. The risks are something we can't ignore. No... While he will be special and blessed beyond belief, he will never be normal.

It feels wrong and ungrateful to be so anxious in a place we've prayed to return to for so long. But the reality is there's nothing to anchor us to here. We're just waiting, drifting towards the next chapter in our lives, and it's so hard for me to just enjoy the now instead of trying to peek into the future. That's not my personality, and it's hard.

There is no avoiding the journey, or the work. But the good news is there's no avoiding the hope either. Hope is what offers direction and focus and energy. Hope helps us to see past the uncertainty, to better. Hope may not take away all of my fears, but it gives me a way to fight back against those fears.

Thank you Lord, for giving us hope.