Big week ahead

Jerry and I are walking around the house holding our breath hoping nothing goes wrong as we wait for Zachary to be decannulated, medical-speak for getting the trach out. We think it may be very soon. We hope it is soon. It is like waiting for Christmas, but better, only with a fear that someone may decide to cancel Christmas at any moment.

I am trying not to get excited about the possibility of decannulation. I fear that if I get excited I will be faced with a huge disappointment if it does not happen. I am trying to breathe, trying to focus on the day in front of me, trying to not sit around and wait for Christmas, whenever that my be. It is hard not to think about it though.

From the moment Zachary received his trach we've been working toward getting rid of it, weaning the vent, first during the day, then at night.  Then weaning the oxygen, wearing speaking valves and now capping. The trach was supposed to help Zachary breathe and give him a chance to grow and develop. I believe the trach achieved those goals. Zachary is growing and he is learning. Zachary has come a long way and I am so proud of him.

I imagine a trach-free future for Zachary, full of swimming lessons, trips to the beach, splashing in the pool, and all the other things kids with trachs can't do.  I look forward getting out of the house without lugging emergency bags, suction machines, pulse oximeters, and oxygen tanks. I imagine a life that is a tad bit simpler and with a lot more closet space once the trach supplies are gone.

Getting the trach out will be a major accomplishment. We will keep you posted on Zachary's progress. I hope to have big news to report soon, very soon.  It's going to be a big week, maybe.

Too many appointments!

It is me again, Erin, Jerry's wife. Today I am feeling a bit sad about how lonely our lives are. It is hard to explain what it is like to have a child so fragile he can only be cared for by one of us or a nurse AND is difficult to get out of the house. Because of that we hardly ever go anywhere together. 

Our favorite nurse had volunteered to work Saturday night this past week and we were looking forward to a night out. It was disappointing that something came up and she had to leave early. I think this would be a disappointment to anyone with children, but the thing is - we can't reschedule. We cant just get a baby sitter for next weekend. Under normal circumstances we may have grabbed our kid and gone out for a family dinner. But it is flu season. We do not want to risk the flu. So we stayed home and consoled ourselves by letting the dishes sit in the sink while we watched TV - which we hardly ever have time do. It is 3:00pm the next day and the dishes are still there.

Zachary had five appointments last week. He had physical therapy, speech therapy, a meeting with respiratory therapy, nutrition appointment, and we had an appointment with one more gastroenterologist.

Zachary works hard in PT. Lucky for my the PT does not let me participate in the sessions any more. I am too much of a distraction for Zachary. I spend five minutes with her at the beginning of the appointment and five minutes at the end getting my homework assignments. The PT and nurse handle the session. Don't worry, I do not mind having an extra 50 minutes to myself! 

I have to be involved in ST. This week Zachary bit an apple. Like I said last time, progress is slow. We gave Zachary lots of praise for using his teeth. I feel ridiculous sometimes, but progress is progress no matter how slow.  The nutritionist was amazed with Zachary's weight gain. He is catching up! Despite a great weight gain, I did get more homework. Puree meat. Sigh.

The GI appointment was the most interesting. I've been to a lot of GI's. Zachary's other specialists wanted us to see a GI. So I've been searching for one that was willing to work with us to help Zachary become an eater, better manage the reflux, and get rid of the g-tube. I ran through Zachary's medical history up to present day and she was wondering why I was there (since he is eating and not vomiting). I did not let her know that I was there because I felt forced to be but simply that he's had GI issues and that I thought we needed someone to monitor him.  

I was very honest though and let her know that I've met with MANY GIs and could not find one who wanted to help Zachary learn to eat and was interested in controlling the vomiting. It must be a very small field because she knew everyone we met with. It was strange for me to discuss my disappointment of her colleagues with her. I liked her a lot though. 

She examined Zachary and told me he looked great! What did I need a GI for? She said I must be doing a great job. She apologized on behalf of her colleagues simply stating that GI is such an art form and sometimes doctors get stuck with their way of doing things. She also noted that she will appear to be the hero because all that is left to do is take out the G-tube. I wasn't ready to do that just yet, but when the time is right and our nutritionist and pediatrician are supportive we will go back to her and she will take it out. I do find comfort in knowing we have a GI who I can call with any questions, in a particular one who thinks we are doing something right. I was pleased to get some positive feedback.

Lots to catch up on

Jerry's been busy with work so I am going to take a moment to provide an update. A lot of great things are happening in the White House and I want to share all the good news. It is impossible to make a note of everything that has happened in the last few months but I'll provide the most notable highlights.

Jerry last reported that we were waiting for the results of Zachary's sleep study. We hoped the results would be good enough to allow us to start weaning Zachary from his ventilator. The results were great! We did not wean Zachary from his ventilator though, we stopped using it cold turkey. I was scared and nervous about taking such a big step. After all, Zachary had been using a ventilator the vast majority of his life (except for a few weeks on CPAP and a few days on just oxygen). On the other hand, I was so happy doctors had faith in Zachary's improvement that it was hard to keep back the tears and stop myself from doing the happy dance. No more vent as of November 28, 2012. Big stuff.

It is not all good though. Zachary has needed oxygen on occasion since we stopped using the vent. We don't think he has been sick so we are stumped by the need for O2. Zachary had an appointment with his pulmonologist last week and he suggested it could be an airway issue. I do not want to think about this because it could mean another surgery. Obviously we will be seeing Zachary's ENT (ear, nose, and throat doctor) to discuss.

At this time, cardiology and pulmonology have cleared Zachary for Trach removal. One more doctor to go, ENT. (Of course, a new specialist could be sprung on us any day). There will be lots of checks and double checks, plus at least one hospital stay, before the Trach is removed, so we have a few months to go, at least. Fingers crossed.

In other news, we stopped giving Zachary his high calorie formula. I have spent more time on weight/feeding/reflux issues than anything else, including respiratory. I took Zachary to many doctors regarding his weight/reflux/feeding issues and received all kinds of opinions from he's fine to he needs to be in the hospital. It has been tough trying to figure out what to do.

The fact was that Zachary was vomiting daily, sometimes up to six times daily on the formula. Medication was not helping. He was getting the formula mostly by drinking it from a bottle, but sometimes I did have to supplement his caloric intake and use the g-tube. Despite getting him the required amount of calories his weight gain was marginal. I decided I did not have much to lose. We had experience from our first attempt giving him real food, so we used that as a base and began. I stopped the formula and after a few days (a few very difficult days) Zachary got hungry enough and started to eat. I took Zachary to his nutritionist and pediatrician about week after I stopped the formula. Zachary was making progress, he was starting to eat. To my surprise, they were supportive. Despite a significant weight loss, but not a dangerous one, I was told to keep at it, and good job. Whew. I feel so much better about giving my son real food. And Zachary is gaining weight better than ever and the vomiting has stopped.

Zachary has been in feeding therapy since he was in the NICU. We were warned that many many preemies have oral aversions. Zachary is a part of this club. I thought eating issues would be an easy fix once we got through the first G-tube wean. I know now that there is no easy fix. Zachary will probably be in feeding therapy for a very long time - years possibly. Right now everyone's biggest concern is that Zachary does not bite or chew. He eats soft foods, like yogurt, purees, hummus, mashed potatoes. The speech therapist gives me lots of exercises and games to play with Zachary to get him to use is mouth in new ways. The nutritionist requests that I mash and puree this, that, and the other things, for better nutrition (and she requests that I add butter and cream to everything too - yummy). Zachary of course does not the like the games or foods at first, but I must do them multiple times each day. Exhausting! I know all this work will eventually pay off (we have seen progress), but it is tough. The progress is very very slow. I am tired of making mashed sweet potatoes (or whatever) every day for weeks only to have Zachary reject them every time, until that one magic day he eats a bite or two and FINALLY a whole bowl.

And don't get me started on what happens to all the food Zachary does not eat. My new jean size proves those yummy sweet potatoes loaded with butter and cream did get eaten.

Zachary also had a follow up appointment to check his fistula repair. It was a very long and frustrating appointment that deserves a post all its own, but the news is that things are healing OK. The healing isn't the best case scenario, but good enough that he won't have any problems long term. The doctor seemed satisfied with the results. Zachary will have to be followed for a few more years (yikes) just on this one issue alone.

Zachary is cuter than ever. He is walking, running, and climbing all over the place. He's not talking yet, but using more and more sign language everyday. Just yesterday he signed Mama - twice. I would have rewarded him with ice cream if he'd eat it.

Thank you for reading!

what the hell is going on?

I am not angry.  Just thought some of you may have been wondering what the heck we've been doing since we warned about the approaching storm in the last post. 

We made it through Hurricane Sandy unscathed.  We lost power for about 24 hours but were able to keep Zachary's emergency backup batteries charged by plugging them into the charger in the van, though that required quite a bit of driving around.  It got cold in the house (59 degrees) but the power came back on shortly before we were ready to abandon ship.

A lot has happened since then. 

Probably the biggest news is that Zachary had what we think was a successful sleep study.  We don't have the official results back yet but he went all night without oxygen or needing to be put on the vent, so those are really good signs.  His carbon dioxide got a little high but not so much so that he needed to be vented.  This means we may soon be able to start weaning him from the vent when he's sleeping, which is another prerequisite to getting rid of the trach.

We've also started weaning him from his bottles of formula, which means starving him until he's so hungry he'll eat stuff like yogurt and baby food and rice cereal.  We've made some progress, though not as much or as fast as we'd like.  And he's lost some weight, dropping below 20 pounds again.  But we're seeing a dietitian at Georgetown University Hospital who seems supportive of our desire to get him eating real food.   It's real tough on the days he's cranky, crying, and signing for his bottle, but we've held firm so far.

He's had a bunch of other doctor's appointments too in last month.  He's seen the pediatrician multiple times, the pulmonologist, the cardiologist, and the dietitian, not to mention his physical therapist and speech and occupational therapists.  All have gone reasonably well.  Still getting better, just more slowly than we'd like.  But he's headed in the right direction.

And we've entered the dreaded RSV season, the time of year when kids get this respiratory infection that really puts those with chronic lung disease like Zachary into a tailspin.  The doctors have told us to put him on lockdown and avoid other children or enclosed places where it could be transmitted. 

We're haggling with the insurance company, Medicaid, and the pediatrician's office to get him a synthetic vaccine called Synagis that's supposed to help, but the health care and insurance bureaucracies are beating our butts right now.  He's technically outside the guidelines for getting this very costly series of shots (one per month from October to March) but all the doctors seem to think he needs it.  We're going to prevail eventually, though hopefully before he gets RSV.

Mom and dad are TIRED.  The nursing hasn't gotten any better.  But I think we've gotten better at dealing with the disappointment of unmet expectations.  We could use a break though. We each stay up two nights a week to cover unfilled shifts.  I am surprised at how efficient one can become on an hour or two of sleep per night, though it is no way to live, and as one of my friends says, is unsustainable.  That's for sure.  But it's better than the alternative, sadly. 

Hope to start posting more regularly again.  Thanks for checking in on us!

calm before the storm

So I'm sure you've heard, there's a storm a coming. 

All the smarty weather people say it is going to be bad.  Word is that the worst will be from about 8:00 a.m. Monday to 8:00 p.m. Tuesday, when we're supposed to get really heavy wind (up to 80 miles an hour) and rain (5 to 10 inches), which if accurate, will almost certainly mean we'll lose power.

Washington has officially shut down.  No government.  No transportation.  No schools.  Those of us who live here are used to the over-hyped prognostications about winter storms that never seem to be as serious as they are made out to be.  Hope that's the case this time.

The power company called a couple days ago to tell us to expect to lose power for multiple days.  Guess that's what passes for customer service these days.

The medical supply called to see if we needed anything, and when we said we needed some oxygen, said they'd put in an order, which means we'll get it who knows when. 

And the hospital called to see if we had any alternate plans other than shelter-in-place, which, not to their surprise, will be to go to the hospital if we lose power for too long so we can keep the ventilator operational.  We're hoping though that we can sufficiently charge the equipment in the van and avoid any hospital visits. 

We've prepared about as much as we can.  All the back-up power for Zachary's medical equipment is charged.  We've got lots of canned food and water to ride out the storm and its aftermath.  Fresh batteries for flashlights abound.  All the cars are filled with gas. 

So we're just sitting and waiting.  Just a cold light rain right now.  Soon to change though. 

wedding weekend

We went to Richmond this past weekend to watch one of Erin's cousins get married.  Zachary went with us too, though he skipped the wedding itself, which was lots of fun. 

He had a weekend full of firsts, such as his first time staying in a hotel, which he thought was wonderful since it had so many doors he could open and close, and open and close, and open and close.  He also was quite fascinated by the elevators, in which he could see his reflection. 

He also got to meet some extended family for the first time, which gave him an opportunity to show everyone how well he waves hello and goodbye.  He also visited Virginia's capitol and had his first  full-blown public meltdown in the hotel lobby.  He also got to see grandma, Uncle Matt and Aunt Jill and cousins Jake and Grace, who visited him in his room while we were at the wedding and reception.  (We brought a nurse with us too).

It wasn't all fun and games, though.  He got sick on his second night there despite our best efforts, probably because of the germy floors and air.  Not sure just yet whether it's just a little cold or something more serious, like a respiratory infection.  Time will tell.  Right now he has a runny nose, dry cough, diminished appetite, low energy and is needing way more oxygen that he usually requires.

So sad to see him feel so crummy.  His coughing fits have gotten so bad and he cries so much that tears run down his little cheeks.  We're giving him more frequent and varied nebulized breathing medicines so hopefully that will start helping soon.

But the good news is that at least his feeding tube gives us the ability to give him food and fluids even though he's not hungry, so he can stay hydrated and nourished.  He needs to get better quick so we don't have to cancel the sleep study he has on Halloween. 

The sleep study, which requires a night in the hospital, will help determine whether he's retaining carbon dioxide when he sleeps, which is why he's still on the vent at night.  If he's not, then we can start weaning the vent at night over the course of a couple months, which is a necessary step before we can start the process of decannulation, or getting the trach out. 

If the sleep test goes badly, he'll need to stay on the vent at night through the end of the year and into next year while his lungs continue to heal from the battering they took when he was first born and they were paper thin and were brutalized by the force required to properly ventilate him.  Wouldn't be the end of the world, but would be a disappointment for sure since the trach would have to be in longer than we would have hoped.

We have had some positive news on other medical fronts recently.  He reached 20 pounds today so he's finally on the growth chart and trending up.  And his pulmonary hypertension hasn't gotten any worse, so we've decided to go back to seeing his first cardiologist who we really liked before it was recommended that we see a PH specialist. 

So all-in-all it was a good weekend.  Could have done without the sickness, but he had some new experiences and got to meet some people who care about him very much, which made it worth it, as did seeing Erin's cousin Marc and his family so happy at their wonderful wedding weekend.  

turning two

My baby boy turns two tomorrow!

We celebrated yesterday with a small party at our house joined by some family and a few close friends.  Aunt Judy made this amazing cake, which tasted as good as it looked.

I can't believe it has been two years since Zachary's remarkable birth.  They have been years filled with ups and downs and hopes and fears.  But most of all the days between then and now have been filled with love for this unbearably adorable little boy and amazement at how much he seems like any other toddler entering his terrible twos.  

I think one of the things that struck me most about his birthday celebration was how little I thought about the special circumstances that surrounded his birth and the challenges of the resulting rehabilitation, but instead was focused more on matters such as making sure there was enough food and drink and the score of the Redskins game. 

I wasn't thinking about lung disease, mucous plugs, feeding therapies, or any of the other unresolved medical and developmental issues, of which there certainly are many.  But yesterday I felt like I was able to put those very important issues into perspective, at least more so than I have in the past.  One of my greatest worries is that I have become so invested in being the parent of a preemie that I'm missing out on just being a parent. 

So my pledge to my son for his third year is to be a little less protective so he can do what little boys do while I work on being a little more father and a little less caregiver. 

Happy birthday, buddy.