Hospitalization #8 - Day Three

Brett back to his smily self

Going Home today! What a great surprise! The doctors have switched Brett to oral antibiotics so we get to escape from here in record time! We still have the GI issues to deal with, and the next step is to do a pH Probe. They tried to get this scheduled while we were still here, but were unable to make it happen. Therefore, we are going home, but scheduled to come back in Monday for the probe and stay overnight.

Thank you for all the well-wishes and prayers. I really think making the decision to come in right away helped us avoid a longer time to get better. And probably more lung damage as well.His blood tests showed he was a lot more dehydrated than he looked. Fluids and antibiotics did the trick for him to feel better, although it goes without saying that he is never completely better or cured. Going home now to see the rest of the family and enjoy a night together again.

Hospitalization #8 - Day Two

This is what my boys do when I'm not home! LOL!

(Gantt is pushing Mark around on Brett's IV pole)

Both boys were asleep when I got home, but I got to see them this morning. It was nice to snuggle and kiss my Baby G. I was able to take Mark this morning and pray with him before his day at Winshape C3 Camp started. I hate telling him "I'll see you tomorrow" just as the day begins. I went home and packed up all my stuff from the house and then came on out to the hospital.

So we still don't have a conclusive answer about what has caused this recent lung problem, but the doctors highly suspect that his Nissen fundoplication has been compromised in some way. He's been vomiting formula here and there for about 2 weeks. This is not supposed to happen when you have a Nissen, and hasn't since he got it done in May 2009. It's a surgical procedure we had done when he had to have a major surgery anyway. It's designed to increase the pressure in the lower esophagus to prevent reflux but still permit food to move down the esophagus into the stomach. Brett's stomach is wrapped completely around his esophagus. His doctor thinks he vomited some formula in his sleep then aspirated it. Aspiration happens when the stomach contents pass up through the esophagus and into the lungs. The stomach contents in the lungs can cause pneumonia.

Brett during upper GI study

He also thinks this because I told them he had a dry crusty stuff on his mouth when he woke up, which I had never seen before. Even in a healthy person there is a possibility that aspiration could cause a pneumonia, but usually not. A child who has CF is much more susceptible to that happening, and it would look like a spot on the lungs like Brett's does. It is possible he might have a virus or a general infection caused by bacteria, but we will know about that when the tests come back.

Brett had an upper GI study done today, which he absolutely hated. He's had them a few times before, but having to be totally strapped down is so tough for a baby. So he screamed for about 30 minutes at the top of his lungs. Maybe his lungs are all cleared out now -LOL! During the GI study, it appears as though the Nissen is intact. There was no glaring loosening through which the liquid barium went straight through. Obviously, though, somehow the formula IS coming up. Maybe when he puts enough force behind his coughing, etc. it is coming loose a little, but not during a simple test. Brett's pulmonologist will talk to his surgeons about that and what to do about it. Also, as I said before, Brett is presenting differently this time. His sats have stayed high and he is not wheezing, and he's not requiring oxygen! I think this is probably the first time in the hospital he hasn't needed oxygen. So for now, Brett's doc is treating it as though that's what happened, an chose a different antibiotic that is better for cases like this. The hope is that it will work and Brett will be doing a lot better in a few days, we can switch an oral antibiotic he can go home on so that we don't have to put a more permanent central line in! That would be the best case scenario. Here at least for 48-72 more hours.

Hosptialization #8 - Day One (July 6)

Sick Brett at home

When Brett woke up Tuesday morning, he was not his usual smiley self. Despite a pretty good night's sleep, he was kind of whiny and lethargic. Also he was breathing rapidly -- about 70-80 times per minute, compared to his usual about 40 times a minute. We thought he might be sick, but sometimes it's hard to tell. His physical therapist was due to arrive about a half hour after he awoke, so I decided to see what happened with that session. My thought was that if he felt ok, he would perk up during the session and begin playing and laughing like he usually did. If he didn't, I thought I would take him to the hospital. Unfortunately, that didn't happen, and he wasn't able to do any therapy. He just wanted to lay in my arms and suck his pacifier. Sometimes it's really hard to tell whether we should take him or not, but with him, we've learned that we must err on the side of caution. Because lung damage is irreversible. Preventing lung damage is the name of the game in extending the life of someone who has cystic fibrosis. If we can get antibiotics going a few days sooner, that might mean that we've prevented some lung damage. Obviously, the other positive thing is that we can get him feeling better faster, avoid trips to the PICU, and usually get out the hospital sooner.

Brett in x-ray

I showed up and surprised the folks at the clinic, but the ladies know me well and know that if I just show up with Brett, driving an hour to get here, then I must really think he's sick. His doctor (pulmonologist) took him in without an appointment and agreed with me that he was working too hard to breathe and that he looked as though he wasn't feeling well. However, he wasn't presenting the way he usually does - with heavier wheezing and sometimes grunting.

When a CF patient comes in, the assumption is that there is something going on in the lungs that is causing inflammation, but we don't know what or why. There is always the usual battery of tests and procedures, beginning with a chest x-ray. We immediately went down to radiology to get one, and it showed that Brett had a definitive spot on his lung. Usually, Brett's inflammation presents as sort of a haze or a cloud across both lungs, so this was clearly something acute. The other usual tests consist of nasal swabs to check for viruses, throat swab to check for certain bad bacteria, and blood tests of all sorts, including a culture for bacteria. The main suspicion, though, is basically that he vomited some formula during the night and aspirated it, causing a pneumonia.

Brett and me hanging out in the ER

By the time we returned from x-ray, his breathing work was even harder, and he was starting to flush with fever. The bad news, they said, was that there weren't any beds available. So there was a probability that we were looking at spending the night in the emergency room. That's certainly not fun, but when you are prepared for it, it does make it easier. We went down to the emergency room to get settled in. We had waited in the ER for a bed before, so it wasn't anything new. By then his fever had spiked to 100.2, and he was just even more cranky because he hadn't really napped and getting the x-ray is no fun. The wait was shorter than we expected because a bed became available on the 7th floor. Unfortunately, it's not the main "CF" floor. This makes no difference in our care - our same doctors see us, and the nurses are great, but it's just nice to be on the 5th floor "where everybody knows your name." I'm sure you understand. BUT, it's better than spending the night in the ER for sure!

When we got to the room, the difficult part began. Had to get the barrage of blood tests. Because we had the Broviac removed last month, he has no central access for which to pull blood out of OR put fluid/drugs into his veins. The nurses looked for good veins over and over and over and he ended up having to get stuck 3 times. Well, the IV went in on the first try, so that wasn't the bad part. The bad part was getting all the blood that was needed for the labs. Then Rob came and we switched off. I went home and he stayed the night.

Back in the hospital. I will post details tonight.

Wordless Wednesday

*Breathe*

"Breathe" is the title of my *new* weekly post for what is going on with Brett medically and his life with Cystic Fibrosis. I have decided to post something either about Brett's health or about something CF related every week.

It will usually be posted on Monday. If it's not on Monday, it will be on Tuesday that week. They'll be labeled so you'll be able to find them easily if you miss one or two. And as usual, if you have a question, please comment on the post and I will answer it!

Brett in the pool with Daddy

I was having a hard time knowing how much or how often to talk about Brett's health and CF, because it's important and you want to know, but I also didn't want it to be the focus of this blog, the same way it is not the focus of our family. Rob suggested I update you on Brett once a week, and if there isn't much to tell I'll do a feature on something CF related. That will give you a Monday update, a Wordless Wednesday pic, and another couple of family-related posts throughout the week. Hope you enjoy it - here goes.

Although I mentioned a few changes we made to Brett's regimen during his last doctor's appointment, I wanted to update you on his status in general. Since Brett is now free of his Broviac-Hickman catheter (or any other sort of central catheter), he can now have regular baths and go swimming in a pool. We are so relieved!! He does not like bathtime, but it sure is easier for us to clean his body. The pool, as you can see in the photo, he does like!

Brett getting his Pulmozyme treatment

Current Medications and Supplements

Here is a photo of all the medications and supplements that Brett requires right now. YES, it feels like our kitchen is a pharmacy. Especially with Mark's meds too. Mark actually uses the exact same medication with the exact same inhaler and same size mask- so it's important to be organized and keep everything separate so that Brett doesn't get any of Mark's lung bacteria. And YES, the folks at Wake Forest Drug love us as much as we love them! We feel as though Scott and Debbie are a crucial part of Brett's care team. And since last April, they've been getting a LOT more business from us LOL!

Below is the laminated schedule I keep on the front of the refrigerator to keep us all on track with what he needs throughout the day. Whoever administers the meds or the treatments just marks it off with a dry-erase pen. At the end of the day I wipe it clean and start all over the next day. Whenever his regimen changes, I just change the document and print out/laminate a new one. This is also helpful to take whenever he is admitted to the hospital. The nurses are very good about keeping to it so that he doesn't get off schedule during his stay.

Daily Medication Regimen

In addition to this daily routine, Brett has a physical therapist come to the house once a week, a feeding therapist once a week, and a developmental therapist either once a week or every other week. That's 2-3 hour long appointments each week. Whenever he has a central line, the nurse also comes out once a week. Thank goodness they come to the house and I don't have to get him ready and go out. He gets these therapies from companies who work with the Raleigh CDSA. He's been getting physical therapy since first got home from the hospital in August 2009. He has come a long way - he's actually crawling now! More on that next week.

Current Meds:

Creon (digestive enzyme)

Albuterol (bronchidialator)

Flovent (inhaled steroid)

Baclofen (muscle relaxer)

Pumozyme (mucus thinner)

Ursodiol (helps control bilirubin level & liver enzymes)

Prilosec (prevents reflux & helps enzymes work better)

Current Dietary Supplements:

CF Vitamin Complex (A, D, E & K)

Jarro-Dophilus powder (probiotic)

Instant Mashed Potatoes (Stool Thickener)

Zinc Sulfate (to increase enzyme performance, for growth & fighting off infections)

MCT Oil (Fat, fat, fat!!!)

Table Salt (to make up for excessive salt loss)

Total hours spent daily managing CF:

about 3 hours

This is probably the least amount of hours it will ever be, so it's good right now! Relative to how much more intense the regimen has been at other times and what it could be in the future, it's not too bad. I choose the schedule for the medications and the times aren't as strict as IV antibiotic times, so we don't have to break ourselves to stay on the schedule to the half hour and don't have to get up in the middle of the night several times to give meds. With that said, it is still of utmost importance that all this gets done and gets done throughout the day. We can't do it all in the morning and have it all done for the day, and we can't save it all until evening, either. And we *never* skip the treatments. CF never takes a day off, so we can't either!!

Fun-Filled 4th

Chillaxin'

Hope your holiday was restful and fun. We spent the day at a cookout they had at the pool. Mark seemed to enjoy it and he and Rob got to spend some good time playing basketball in the pool and sliding down the waterslide.

Brett decided not to take a nap before we went, so much of my time was spent doing this:

But I did get to do some of this:

And eventually Brett did this:

But my sitter and I did take the babies home early. Mark and Rob enjoyed late-night fireworks.