Friday Night Update

The great news today is that Brett gained weight today even though he's sick. Today he weighed in at 16 pounds and 10 ounces. He has been in a great mood when he has been awake and still wanting to roll around and sit up and has interest in toys and watching movies on the computer. Tonight we got to do a video conference with Rob and Mark who were at home. Brett enjoyed that and started smiling and cooing when Mark did all his crazy stuff on the screen that he usually does at home. The only other news I have is that Brett's breathing has become even more labored today, despite still being on a half liter of oxygen. It's for this reason that the doctors are reluctant to put him under anesthesia to put in a more permanent central line. So he's started his course of antibiotics through the little IV in his hand, and will continue to use that over the weekend until his lung function can improve enough to handle the anesthesia. Unfortunately, that means it will be Monday or Tuesday at the earliest that a more permanent line can be put in, and several days after that is when we'll be able to come home. It will be a long weekend, but praying that it will be uneventful. Goodnight!

Friday Morning Update

Brett slept like a rock through the night since he was so completely wiped out from yesterday's events, and now he's back to his smiley self! It was actually around 8:30 this morning before anybody bothered us at all, which is kind of a miracle if you know anything about hospitals! We survived the inevitable morning battery of doctors and residents and nurses, and for Brett we also have respiratory therapists and physical therapists coming in about 7 times a day total. This morning he is in a good mood, although still fairly tired.

His peripheral IV in his hand was put in place last night, to start a milder antibiotic. However, in order to administer the more powerful antibiotics he needs to fight this lung exacerbation for the long period of time we will need it, we must have more stable, permanent access. The plan for today is for the PICC (peripherally inserted central catheter) line team to look at him and see if they think they might be able to get one in him. He did have a PICC back when he was in the NICU, but I was told that those are a lot smaller, and you also can't go home on one of those, so it isn't really an option. Hopefully we will be successful in getting access today and will get going on these drugs, because the sooner we get the regimen started, the sooner we can go home! It's hard to get things done on a weekend, and with this being Friday, I really want to get set up. If things get pushed back, we could be here well into next week. Another good thing is that he will probably come off the oxygen at some point today - at least while he's awake. This is progress needed in order to go home, too.

Why didn't we know he was sick? Clinically, the subtle increase in his work of breathing was the only indicator at home we could've noticed, and we wouldn't really have been clued in to that until it was a little worse. It was just kind of lucky that we were here for a check up yesterday. The good news is that coming in for this check up probably saved us from ending up in the emergency room over the weekend, and possibly another PICU stay if his respiratory distress had heightened. What happens with CF, particularly in babies, is that the teeny tiny distal airways become affected with inflammation first, and the changes are so subtle the patient nor the parent often even knows the disease is worsening. For awhile, the patient will feel fine until the exacerbation (or infection) gets worse. This is another important reason to come in for regular check ups and pulmonary function tests. Once the child grows, the airways also grow, so when the child is older they are able to clear those airways better with medication and manual airway clearance and postural drainage.

Part of the other reason we didn't know he was sick is because his weight gain over the past month has been phenomenal, and so when you're doing well weight-wise, the symptoms of illness take a little longer to show up. He's gained an average of 18 grams a day! He now weighs about 16 pounds and 5 ounces! I am increasing his feeds every 3-4 days as he can tolerate it and that combined with the enzymes and supplement is really working to put weight on him. He's also doing so well in physical therapy that his muscle mass is also increasing. Coming in this early probably prevented him from getting dehydrated, too. So for now he is sleeping peacefully and we are just enjoying the quiet time together. I'll post later to share what happens today.

Back in the Hospital Again

What a long day we've had at UNC. We got here about 13 hours ago for a routine CF Clinic appointment. Brett has been looking so great and gaining weight steadily and overall seemed to be doing very well. Today when we got here, the first thing they did was check vitals, including checking his oxygen saturation (sats). The pulse oximeter read 87! The goal is for it to be 100%, and at least 97 or above. This was the first sign that all was not right. He was laboring to breathe slightly, but it was very subtle at the time. We did an albuterol treatment then a chest PT and the sats went up to about 92 but that was the highest it read. Next we went downstairs for a chest x-ray, not really expecting to see much, because his lungs sounded absolutely clear by listening with a stethoscope. That is what is so sneaky about CF! The disease starts in the teeny tiny distal airways, and the changes are so subtle it's hard to notice. After the x-ray we went back to clinic and checked the sats one more time, and it wasn't any better. It was then decided that he couldn't go home without better oxygen saturation, so we would stay the night, get a regular IV to start a general lung coverage antibiotic until we could see what was going on - wishfully thinking it was just a mucus plug or something causing this. He was started on a half liter of oxygen at that point. However, once the x-ray came back it showed a very bad exacerbation in his lungs - due to some sort of irritant (bacteria, virus, etc.) that has caused his airways to become inflamed and constricted. It was decided then that he will indeed be on another 2-3 week course of IV antibiotics again. Trouble is, now we don't have a broviac anymore. So tomorrow I think they are going to try to get a PICC line in him and see how that goes. If they can't do it, he may have to have another broviac put in to administer the medications for the long period of time that it's necessary.

Our appointment was for 11AM, and we finally got back to be seen at 11:45 AM. By 2:00 or so it was decided we'd be staying at least overnight, but I had to wait on a bed, and they knew it'd be quite a while. So my phone battery was dead and I had to use their phones to start calling and trying to arrange for childcare and someone to bring me my overnight stuff, since Rob has just had shoulder surgery and can't take care of a baby! Or drive out here on the narcotics he's taking for pain!

The staff here were incredibly accomodating, as usual. They sat with Brett while I ran up to buy a sandwich for dinner. At 6:00 the clinic closed so we had to go wait in the ER (because he still needed oxygen) until the room was ready. The room got ready about 8:30ish and we began to try to get settled. They tried once unsuccessfully to get an IV in his foot. A little bit later on they tried his hand, and got it to work, so that's all done and we did all his medications and treatments for the night. He is one tired puppy! He didn't get his naps today like usual and being here all day having stuff done to him has wiped him out. I'm pretty tired, too, with a huge headache! So now he's asleep and I'm going to bed to try to get a little sleep, as I expect tomorrow will be a pretty eventful day. Thanks for your prayers and support!