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.

I'm taking a day off from the computer today. Ok, well, yes, I'm on it right now, but as soon as I post this I'm signing off for the day. Yesterday Rob stayed with Brett while I took care of the other kids. Once I got Mark to school, it was just me and G. It was nice because it is rare for it to be just the two of us. Usually if I'm with just one child, it's Mark or Brett. We had fun cruising the Target and Walmart aisles!

My parents came in town to help us out this weekend, and I'm home with the other people in my family, and want to give my attention to them. Also, the house is a complete wreck. We have one set of clothes still sitting here from our trip to DC. We had one day at home when we returned from DC to get packed up with a different set of clothes to go skiing. Then all this happened with Brett, so I'm trying to go through everything and wash at least what we all need for the week, get Mark ready for a new week at school, and I have to pack to be at the hospital several nights in a row. All the while trying to take care of my high-maintenance crawler, while Rob is doing a new team member orientation at work this morning and just catching up from being away.

As for Brett, not much has changed. He might be breathing a bit better, but they have not started trying to wean him off the oxygen as far as I know. We have been to playgroup every day and I'm taking more toys when I go because since he feels good, he's getting pretty bored as you can imagine. He's going to be in the hospital a bit longer than usual this time. So if you are a Wake Forest/Triangle area friend and you'd like to help out here at home or at the hospital this coming week, please contact me. We are going to need help for sure. A couple people have already volunteered, so I'm going to work on a schedule tomorrow.

So I need the day off from blogging, Facebooking, and emailing. I'll start to catch up once I get back to the hospital tomorrow morning. Thank you for keeping up with us so faithfully and for all your encouraging calls, posts, and words. Remember how we know if someone needs encouragement -- they are breathing!!

Here's the cute video for today:

Events of the Day and a Good Video of Mark

I haven't written anything about G lately, so I thought I'd post this pic just to let you know he's still doing well! He's plugging along and growing really, really tall! We enjoy his observant mind and his spirit of adventure! He (and Brett, of course) turned 11 months old yesterday.

Mark LOVED skiing. As you can imagine, he can't wait to go back again. Everyone made it back safely, and Mark starts back to school tomorrow, as winter break is over now. And my sitter sorely needs a day off. She's worked 24/7 since 6am last Saturday morning, bless her heart! If any of you WF friends want to help out with Gantt next week, please let me know!

Here's a good video Rob made of Mark flying - I mean, skiing, down the mountain.

As for Brett, we're now on day 3 of his 5th hospitalization (I'm not counting that one night in February), and are beginning to get a few answers - maybe - about why Brett is sick. It appears to be another septic episode, although that isn't totally confirmed yet. Two blood cultures have been positive for a gram positive cocci, likely staph. It is likely another line infection, but we need to wait for the final results on the blood cultures.

Last night we discovered his first hypersensitivity reaction to a medication. He contracted Red man syndrome from the antibiotic Vancomycin, which has been added to cover that bacteria that is in his blood. (He is also on his "regular" antibiotics, Tobramycin and Cefepime.) For me, this meant that just as all seemed settled last night and I was about to go to bed (or should I say - go to air mattress!) he began screaming all of a sudden. I went over to him immediately, and because it was dark all I could see was white over his forehead and eyes. I turned on the light and he was bright red and splotchy with bumps coming up on his forehead. His entire torso was swollen and bright red and his diaper area was bright red. I called the nurse and all I could get out was, "Something's not right!" She went to get Benadryl immediately and called the doctor to come talk to me about it. He calmed down after about 15 minutes and was able to go back to sleep comfortably. This doesn't mean that he can't use the medication - it just means that he must have a dose of Benadryl beforehand, and the infusion must run longer - over an hour and a half instead of 30 minutes, for example.

Later I discovered that this isn't a rare occurrence - it is a fairly common reaction. I am quite disappointed that the doctors who decided he should get Vanc for the first time did not relay that information to me so that I could be more prepared if it were to happen. I would certainly not have been as frightened when it did happen.

Otherwise, we had a great day! Since Brett is not currently on contact or droplet precautions, he was able to attend baby playgroup today. He loved all the toys - and I found out that you can "check out" toys to bring to your room while you're here. I was glad because he's getting pretty bored. With the medical support he's receiving, he actually feels great! So you can imagine with all the activity at home, how bored he is when he's here and feeling good. There are only so many times you can watch Baby Einstein, right? We got a mobile and a little piano and a few other little handheld toys he can bang together.

Brett at playgroup

Home Sweet Home - well, almost...

We made it safely to UNC this afternoon. The transport team was excellent and took great care of Brett. Although we received excellent care in the other hospitals, there's no place like home when it comes to health care. Triangle area friends, did you realize that UNC Health Care is committed to caring for the citizens of North Carolina, no matter where you may be at the moment? If they have a bed available and there is not a higher priority case, they will come get your child by ground or air and bring you back to Chapel Hill for treatment. They have ambulances, helicopters, and even some jets are available that can be dispatched to retrieve patients from across the country if needed.

The transport team's words were, "We'll go anywhere to get our kids!" That is very comforting to me, as a parent of a child who is chronically ill. Also, if your child has some sort of accident or trauma or sudden illness while you are away, they will come get you if they can. They would have even come to Snowshoe to get us but there was not a bed available last night, so we went on to Roanoke until one opened up this morning. It worked out fine, though, because both transports were a pretty long drive.

Packing up to leave Carilion

Ready to Go!

Cute Brett with the RT on the transport team. They gave him a little Pediatric Transport Team teddy bear you can see on the gurney. It's very cute!

The North Carolina Children's Promise campaign raised the money needed to purchase this awesome transport truck. It was so cool! It is a worthy cause to give to - any of our NC children might need it one day. It is equipped to give full care to the patient. It has a generator that could provide power to a small house in case the truck is broken down and the patient still needs a ventilator or any other machine that requires electricity to function. Oh, and the all-important DVD player in the back so the kids can watch a movie in transport!

Good ol' Franklin Street

Unloading at UNC

It was such a great feeling to be walking in the doors of this emergency department! Almost like crossing the finish line. Never thought that is a sentence I would ever say...

My good friend Judy came over to UNC tonight and let me have a respite from 24/7 bedside sitting. It was nice to have a break and to get to drive her sporty 5-speed to Walgreens and back, even if it was in the rain. Thank you, Judy! The rest of the family enjoyed their last day of skiing. Mark is already skiing black diamonds. I guess I'll have to really work on my skills in order to keep up with him. I'm scared to go on blacks. It is wearing Rob out to try and keep up with Mark. I guess he'll need a vacation from the vacation when he gets home!

Thank you everyone for the comments both here and on Facebook and for letting me know you are keeping up here and there. Although I was quite surprised to see a comment from one of the docs who cared for Brett last night in Roanoke. I am now in suspense, wondering how you got connected to my blog, Dr. Hull! Please tell!

UNC-bound

The transport team from UNC has been on the road the last few hours on their way to come get us and take us to UNC-Chapel Hill for the remainder of Brett's hospital stay. Yay! Everyone has been great here, though. Us being here and them knowing we are hospital "regulars" it was almost like we were their guests for a night until we could go to our "home hospital." They didn't try to change anything big, they just continued to provide the care he needs until we can get back home. A couple of the docs know some of our pulmonologists at UNC. The nurses here are super nice and took care of us well. We've been in good hands here and have enjoyed the neat surroundings. Look forward to a safe trip back.

Before:

After:

What a difference oxygen, steroids, and antibiotics make!

Made it to Roanoke

Carilion Children's Clinic
Roanoke, Virginia

Brett and I made it safely to Carilion Children's Clinic in Roanoke, Virginia this evening by ambulance transport. Grandpa followed behind us and helped us check in and get settled. Our UNC doc talked with the doctor in the ER at Pocahontas and told him what treatment to start, so at least even though we aren't home, these folks are all following the wishes of the folks who care for Brett at home. I was surprised that even though Pocahontas was small and they weren't equipped to give Brett long-term care, they did what they needed to do to stabilize him and get him ready for transport. They did it efficiently, also. They were all very, very nice. They also thanked me for being patient with them - although I thought I did nothing special - they must get some rude people in there. I knew that although they didn't have all the tools and equipment needed, they used what they had and they were doing their best with my son, and I appreciated that. The transport team from Carilion was great, and I enjoyed their company on the ride down. Brett did great, also. He never cried the whole way - just stayed away looking around and interacting with the ladies in the back. I had to sit up front with the driver.


Children's Miracle Network donated this ambulance


Loading up for the 2 1/2 hour trip

Rob and Mark are still skiing at Snowshoe, and Gantt also stayed at Snowshoe also with our sitter, Brittny. Grandpa will drive back in the morning and they plan to finish out the vacation as planned. I am thankful I got to ski at least one day and we had a great time with Mark. Last night at dinner our dessert was s'mores tableside! They brought this container of sorts with fire and we actually roasted marshmallows at the table and made the s'mores. Mark LOVED it. Brett and I will await transport to UNC based on bed availability. Right now all beds on the peds floor are full. That could change at any time; however, Brett is not priority right now based on the fact that he is already in a hospital getting care. If some sick kids come into UNC, they will get bed priority. So we might be leaving in the morning, and we might be hanging out at Carilion for a few days, which would be fine, too. We just go with the flow, remembering to be faithful where we are, and we're at Carilion right now! You just never know who you might meet and what God might have in store with those relationships! If we stay here another day, I might even get to see a friend who lives 2 miles away from the hospital I haven't seen in many many years!



Arriving at Carilion


Grandpa and Brett at Carilion

As far as Brett's problems and treatment, based on the chest x-ray it looks like just another of his lung infections. Same treatment, same deal. IV antibiotics and oxygen. Check back tomorrow for more news.

And by the way, you CAN comment on this blog!! For a while I thought nobody was reading this because nobody ever commented on my posts (except Tara and Leslie). Then I run across people who ask me why I haven't posted in awhile, and others who I never knew were following tell me that they've read every post! Come on people! I might stop if I don't know you're reading!! And one friend told me she was my self-proclaimed blog stalker - you can come out of the closet now! LOL see y'all tomorrow!

Ski Trip/Hospital Stay

We arrived safety at Snowshoe Mountain here in West Virginia on Saturday, Feb 27. It is our first trip taking the whole family, including Brett. On the way up we stopped at Thomas Jefferson's Monticello, for a tour of the house and grounds. Grandpa has been wanting to visit there for 30 years and it just never worked out. Since we were driving right through Charlottseville on the way to Snowshoe (via Richmond), we made the stop. Mark has been studying the birth of our country all month in school, so even he was actually interested in the tour as well. He asked questions in almost every room of the house. Yesterday Mark had his first ever ski experience. He had a private lesson and did great! He did so well that his instructor couldn't believe it was really his first day ever skiing. She said his ice skating skills really transferred over to help him master the basic ski skills quickly. Oh, that and, he has no fear! He even said to us he didn't need lessons because he already knew how!
c
We've had a wonderful time so far and I have lots of great photos to share later but right now the ski trip fun has been cut short for me and Brett (and my father-in-law, Dick). Brett started having some respiratory distress soon after we got here, and I've been monitoring the situation, trying to decide if I should drive home to UNC or wait. This morning, though, each time I checked his sats (with my new fancy pulse oximeter!), the highest I could ever get was 80. In fact, when I was on the phone with the doctor, it was actually 75. He recommended we call and ambulance and get started on oxygen as soon as possible, then have them drive us to the nearest hospital. We did so, and after a few minutes on oxygen, Brett's color in his cheeks came back and he was achieving sats in the 92-95 range. The closest hospital is Pocahontas Memorial Hospital, where they took care of his acute needs, and all the routine stuff that we expect to be done for Brett when he comes in the hospital - oxygen, albuterol, chest x-ray, blood cultures, flu and RSV screens, etc. The people here are really nice, and although they do not have the facilities needed to continue proper care for Brett, they did fix him up and got him more stable. I was impressed with how quickly they were able to talk to our pulmonologist at UNC and how quickly they arranged for a transfer as soon as all their tests were done and Brett was feeling better. His chest x-ray showed a lot of inflammation - possibly infection - but since they didn't have a old x-ray to compare it to, they didn't know if it was baseline for him or not. But since last month's discharge and subsequent one-night stay at UNC, the chest x-ray then looked great. I am assuming this is a new inflammation/illness. He has already been started on the IV antibiotics decided on by our UNC doctor and the ER doctor here.

This afternoon we are being transferred to the Carilion Children's Clinic in Roanoke, Virginia. They preferred to bring their own neonatal specialized ambulance for the trip, so they are coming here to pick us up. It's about a 2 1/2 hour trip. I hope to be arriving there this evening. Rob and Mark (and Brittny and Gantt) will be staying at Snowshoe to finish out the vacation, while Dick will be traveling to Roanoke with me tonight. More updates to come!

Pocahontas Memorial Hospital
Marlinton, West Viriginia

A Little Oxygen always makes Brett happy!