Going Home Today!

We are so glad to be going home! This is the first night we will all have been together under one roof at night for 12 days. When Brett got home he just stared around at the house, almost as if it was all coming back to him now. Glad that whole sick-on-vacation fiasco is over. As for Brett, we will go back to the doctor 10 days from now on March 22. The great news about Brett is that he is back up to 20 pounds as of leaving the hospital today!! Weight gain is crucial in managing CF effectively, and he is only 2 pounds lighter than Gantt now (for months and months it was always a 5 pound difference). Although they are almost the same weight, it is amazing the difference in how that weight is distributed. Brett definitely feels heavier when you pick him up, because his body is smaller. He's more "dense," let's say. Gantt is tall and thin and feels lighter in a way. Interesting.

The not-so-good news is that Brett continued to require oxygen, so we must start home oxygen therapy for now. He's on .3 liters per minute, and during the day I can wean him off as long as his sats stay above 92%. We will also keep the pulse oximeter recording his sats 24 hours a day if we can so that the doctors will have a good 10 days of information to analyze. Now instead of one "cord" he's connected to all the time (g-tube connected to feeding bag), we are going to have up to 4 cords at once. G-tube, oxygen, pulse ox, and finally the broviac line if a medicine is being administered at that time. I wonder how that's going to work with a busy crawler who is attracted to cords like a magnet? Not well, I assume!

But for now, happy to be home sweet home.

CT Scan Day

Rob was well enough to come today for Brett's chest CT scan. He
couldn't resist giving him another Mohawk! All went well with the
anesthesia and waking up. Brett's been off oxygen since about 3am
today, so if he continues that trend, we'll take him home tomorrow.

A Slow Day

Today was fairly slow at the hospital. Slow is a good thing, though. I've had several visitors the past 24 hours which have made it a little nicer for me - the respite and the company is great to have once in awhile. Tomorrow Brett is scheduled for his CT scan on his chest. He will be undergoing general anesthesia for this procedure, so please pray that he tolerates it fine. He has never had a problem in the past, so we expect everything to go well.

Tonight I leave you with this video - baby laughs are always fun to watch. This is Gantt at the dinner table.

Yesterday we had a guitarist play some songs for Brett. He loves music
and even got to strum a chord or two. I was surprised he didn't bang
on it, but he seemed to understand it was for making music once she
showed him.

I'm attempting my first blog entry via my iPhone!
The IgG infusion went off without a hitch last night! Brett slept through most of it and rested well. I slept OK. Was really looking forward to being back in my own bed tonight - today was going to be our "switch-off" day. However, now Rob is sick with the stomach bug!! So he is quarantined at home and I have to stay away from home in order not to get sick! We're taking precautions and praying that Gantt and Brittny (my sitter) don't get it, too!!

A Good Day for Brett

Brett loves his picture of Gantt! They miss each other a lot!

Everyone at home is doing fine. Mark felt well enough to go to school today, and Gantt did just fine as well. It was a good day with Brett today. Today he was taken off 2 of the antibiotics that are used to treat the lung infection, because we suspect he doesn't have a lung infection. He was put on those to be cautious, because it's better to treat then discontinue treatment as needed than to withhold treatment and risk the lungs getting worse (and developing scar tissue). Now he is only on one IV antibiotic to treat the sepsis. His blood cultures are still looking good - still negative for now, which means the antibiotic is effective. The broviac central line will not come out during this admission. We will finish the IV course at home and then they'll decide whether the line can be kept. We hope he will be able to get his CT scan on his chest (lungs) on Thursday or Friday. This will give us more information about what is going on in his lungs.

I haven't written much about the immune deficiency research on Brett, but checking his cells and levels of all the different antibodies in his blood. On three separate occasions in the last 3 weeks, his IgG levels have been very low, so the pulmonologists were wondering if there is some sort of immune deficiency. They got an immunology consult involved, and they have decided that they do not think Brett has a primary immune deficiency (body doesn't make any antibodies - never has). They think this because he is making all the antibodies - it's just the IgG levels are on the low end. They think he has "used up" his IgG because he's been so sick this past year. There is a lot more information on this, but too much to write about here. For now he is going to be getting one dose of IgG tonight. Although it's a blood product, it's not quite as big of a deal as getting a transfusion (of which he has had several in the past, and done well with them). It's a slow infusion - between 4 and 6 hours long - in which they come assess his condition and check his vitals every 15-30 minutes. It's probably gonna be a long night for me, but I expect he will sleep through it just fine.

Brett with his *fave* PT tech - we love her!!

The funny "clown guy" that came to entertain Brett. I wanted to ask him if he was Patch Adams!

There are so many great volunteers here! They serve family dinners (even Thanksgiving & Christmas), play with kids in playgroup and teenagers in the rec room, work in the gift shop, serenade with a guitar, provide comedy (like the guy in the pic), and even cuddle babies. I'm sure there are so many more things volunteers do here I don't even know about. Hats off to these wonderful folks!

This is the play atrium where we do our daily playgroups. We work on all the fundamentals that we do in physical therapy every week at home. Our PT is going to be so happy to know we aren't slacking off!

And I couldn't resist posting this one - TEETH!!

Get Well Soon

Brett with his photos from home and his "get well" card from Uncle David & Aunt Kim

I've hesitated to put up a new post, because I love the picture of me and G, and it looks so good at the top of the page! Alas, it's time to begin anew. First, I want to say that we have changed the settings for comments. It was set on "only members" and we changed it so that anyone can comment! That should help it not be so difficult; however, your comment will not appear right away because we moderate them.

Super Dad gives both boys a bath at the same time

Today mom and dad left, and I had to leave Mark at home sick with the stomach bug. It's hard to leave your sick child when you're a mommy, but I'm glad he's old enough to understand. Plus, he's got a really great daddy to stay with him. They probably had more fun, anyway. I was really wanting to go to church today, but nothing really worked out the way we thought it would. Hardly ever does, to tell you the truth. But it's always an "adventure!" I'm so thankful mom and dad came up to stay to help with Mark and give Rob and I a short break from hospital world. Our doctor is saying it's probably going to be another week that Brett will have to stay here. There are several issues facing us with Brett, and I haven't really described everything in details because I don't completely understand it all - and there are just too many rabbits we are chasing to send out all the info. There are a lot of questions the doctors have as far as Brett's immune system and respiratory system, and most of all this need for oxygen. Does he need oxygen at home? Short term? Long term? What do his lungs really look like? They sound good by stethoscope and look good on an x-ray, but what about on a bronchoscopy? Are his lungs infected right now or only his blood (therefore, do we need to continue all 3 antibiotics or just one?) Is this need for oxygen CF related or prematurity related and therefore his airways will grow as he grows and won't need it anymore? Is there a problem with his immune system? Will he be able to keep his central line or does it need to come out? None of these questions will be answered today, and some of them maybe not for awhile. We must take it day by day and just see what happens.

We now have 5 blood cultures, 2 positive and 3 negative, which means the antibiotic is working to kill the bacteria in the blood. It also means right now is the time we start counting the 21 day treatment, even though he has been on the antibiotic since last Monday. Not a great thing to be on antibiotics that long, but we're happy they're working. The doctors want to keep Brett in the hospital until we can see what is going to happen with this bacteria and the central line. Also, they want to get a chest CT scan while he is here. We've never done that before because of the radiation he will be exposed to - it equates to about 100 regular x-rays. That means we'll probably be here at UNC at least through next weekend.

The great thing is that Brett continues to grow! He weighed 20 pounds, 6 ounces on the last check. Only 1 pound behind Gantt, which is quite impressive, seeing as for months he was 5 pounds behind Gantt. The doctors are very encouraged by Brett's growth, because malabsorption is such a problem in those who have CF. Malabsorption was the reason he couldn't come home for so long the first time. Once we got the feeds at just the right formula, calories, and speed, he has done very well. Specifically, you can pray for continued growth for Brett, continued negative blood cultures, and for him to be able to sustain a 95 or higher oxygen saturation ON HIS OWN without oxygen assistance.