Couple more pics....

In order for the trucks to get in the garage, they have replace the huge 66 inch tires with much smaller ones.  Mark thinks they look kind of funny.

Home at Last

We made it home today around 6:30pm. Took us almost 2 hours with all the darkness, rain, and traffic. But what's most important is that we made it safely and we're all home together again!!

Answers and Plans

So Brett got to meet the UNC Tarheels Basketball Team this week! When they stopped by we got some pics as well as had them sign a poster. Here's Brett with his poster.

This is our awesome new room! It is so big and it is in the corner of the 5th floor. Hardly anyone walks down the hallway so it is much quieter than the previous room (and MUCH quieter than the PICU!)

As for Brett's condition - he is feeling much better, and pretty much back to his normal smily self. I know he can't wait to be back home with his brothers. The docs pretty much decided (based on the bacteria that finally grew from the culture) that the infection DID originate from his broviac central catheter. Therefore, the central line must be removed. However, we can continue to use it to finish out the round of IV antibiotics first. Despite the trouble breathing (brought on by the infection) that landed us in intensive care, his lungs are in good shape. Tomorrow (Monday the 30th) makes 7 days of antibiotics since a negative-for-bacteria blood culture, so we are going to go 14 more days after that (IVs that we will administer at home) just to make sure his lungs are in the best possible condition for when he gets the line out, because he'll be going under anesthesia for that. Chances are he'll be getting a bronchoscopy as well, but Rob and I still have yet to make our final decision on that. The procedure to remove the line will probably happen the week before Christmas. There are no plans to replace it. The good thing is that it will be one less thing we have to worry about and take care of at home. If he were to need another line in the future, he would just get another broviac or PICC at that time. As for being discharged, we are hoping it happens tomorrow.

Some pics with the team

Happy Thanksgiving!

Jen, Rob, Mark and Gantt at UNC Hospital's Thanksgiving Lunch

With Brett still in the hospital on Thanksgiving Day, we attended a lunch provided by UNC and served by hospital volunteers. It was so nice of them to give of their time to give families of patients a good experience and food for Thanksgiving. My mom (GG) spent the rest of the day and night with Brett and let Rob, me, Mark and Gantt go home and spend the day together. What a beautiful day it was in Wake Forest, NC! We went outside for a bike ride/stroll, and did some other fun outside activities. Later it was Waffle House for dinner! We enjoyed our time, knowing Brett was well-taken-care-of by his GG. She left to go home this morning and hopefully have a fun weekend at the lake with Dad and their friends. She deserves it!

Brett on Thanksgiving Day

As you can see from the photo, Brett is feeling much, much better. He is pretty much back to his old self behaviorally. We love to see all those gummy smiles! Speaking of gummy smiles, Gantt's is about to become a one-tooth smile - he is cutting his first tooth on the bottom!

Gantt on our stroll

Mark playing with his water guns

Our backyard on Thanksgiving Day - beautiful blue sky

Drawing blood.....

Well it is 1 AM on Thanksgiving morning and the nurses are having to draw blood.  It is not the best time for us, but it has to be done 30 minutes after his antibiotics run.  It is important for them to make sure the "levels" are right.  I feel for him so much, but I am glad that I am here to help comfort him and get him back to sleep.

-- Rob

Breathing on His Own

Brett has now been breathing on his own for almost 24 hours!! He has been moved to a room on the 5th floor. Got a negative blood culture from yesterday, but still need a few more negatives to be sure whether the broviac is not infected. We're so glad to be moved to a regular floor, and if we have to spend Thanksgiving here, at least we have a few "Creature comforts" and Brett should be able to rest better too. Plus, the nurses upstairs know him and us and they know CF better than the critical care nurses in the PICU. Happy Thanksgiving Everybody!

Good News and Bad News

The Good News: Brett's viral culture came back negative, which mean he doesn't have any type of influenza or any other viral illness. Because of that he has been taken off contact and droplet precautions, which means we don't have to wear the hot robes and masks anymore. The other good news is that he has been weaned down from the 5 liters of humidified oxygen to 3 liters at around 35% I think. The plan this afternoon is supposed to be to try to put him on a regular oxygen flow at 2 liters. If he tolerates that well without having to work too hard to breathe, we should be able to move to a regular room tomorrow after 4 nights in the PICU.

The Bad News: Brett's broviac line blood culture was positive again for bacteria. This points toward a little more evidence that the central line may be infected. If there are a few more positives in the next few days, he will probably have the line removed. If a few more negatives show up, then we'll probably keep it. The broviac was not necessarily the source of the infection (in fact, the assumption right now is that it somehow assimilated into his blood from his gut) but since it is in the blood now, we have to make sure the line is free of infection. If it is infected, there is no other choice but to remove it. If it continues to appear as though his gut is somehow leaking bacteria into the rest of his body, we may put him on some sort of prophylactic antibiotic to prevent that from happening again. At this point, though, it is all sort of speculation - if this, then that. We'll keep you posted on the progress at that point.

Brett and I did get a good bit more sleep last night once he was able to be fed and have a full tummy. Excited though to be possibly moving to the floor tomorrow.

Well, the GI study was finally done at around 3:00 this afternoon. It showed that the gtube was in place correctly, and that there is no intestinal blockage. Yay! We didn't think there was, but they did want to make sure. The last blood culture showed negative for the bateria. If there are a few more negatives, then that is good. If there are any other positives, it might mean the broviac central line is infected and needs to come out. The bacteria has not actually been identified like I thought before. What is known is the type of bacteria, and it's a gut bacteria. It will take a few days to know for sure exactly what it is. But I bet it's the same stuff as last time. So, no matter what happens with the cultures in the next few days, the IV antibiotics course will not change. The only thing that remains to be seen is whether the broviac is infected, and if so, we'll take it out and try to get a PICC line in or some other temporary access to finish the course of antibiotics. This should be a shorter course than last time's 27 days since it is not a lung infection. However, we will still be here in the hospital about 7 more days. Still hoping to move to the floor in the next few days.

For the most part, a sleepless night for Brett and me. He is doing ok but hasn't been on his feeds since we got to the emergency room Saturday afternoon about 4pm. He is normally on a continuous feed. That's a long time not to be fed, and he's very hungry. The doctors want an upper GI study done before we feed through the tube again. So last night I could give Brett baby food up until midnight. I gave him as much as he would eat because it would still be a long time before the study. He woke up about every 20 minutes and cried. Tylenol did help him settle for a couple of hours, then he started again. The recliner chair I am trying to sleep in is very creaky. Many times I would get up, hold the paci in until he was calmed down, only to try to get back in my chair and it creaked and woke him up to start crying again. Needless to say, we're both pretty beat. Found out that they can't get him in for the study until 1:30 this afternoon. I sure hope everything is OK so we can start feeds again. More on that later this afternoon!

I hate to post this update, but we are back in the hospital again! Things were going well, and Brett's health was declared the best it has ever been in his life!! After the last round of IV antibiotics (one week in the hospital and 3 more weeks at home), he continued to grow and gain weight like a champ. He has had a few minor issues, but none that have negatively impacted his growth or his lung health. We all have had our seasonal flu shots, and both twins have had the H1N1 shot and boosters since they are high-risk. Brett and Gantt have both been approved for and have received one Synagis shot (for RSV). They will get one shot every month throughout RSV season.

This past Tuesday was our last clinic visit at the UNC Pediatric CF Clinic. He looked and acted great that day! They said we needed to come back once in December, then if everything was still good, he wouldn't have to come back for 3 more months! However, Wednesday evening, Brett began to develop some respiratory distress. He mainly just started crying a lot and we thought it could be gas, so we vented his g-tube and gave him some mylicon. Throughout the night he began to breathe very rapidly and very shallow. We weathered the night, then went to our local pediatrician the next morning. He got an albuterol treatment there at the office that helped him breathe a little more normally, and there did not seem to be any obvious problem. They did some blood tests and the white blood cell count was great. Once we unplugged his feed, he got happy and smily again, so after our docs talking with his UNC pulmonoligists and us talking to the pulmonologist as well, we all decided just to wait and see - that maybe he was just having trouble with his feeds or his belly hurt for some reason. I did get an order for a chest x-ray if I wanted to have it done here in Wake Forest I could. Well, Saturday came around and he still was not feeling any better. He had not smiled in a few days, and those of you who know Brett know that despite all the rough times he's been through, he's normally still a very happy baby. This concerned Rob and me, as well as his increasingly troubled breathing. The pediatric pulmonologist on call Saturday advised us to bring him on in to the emergency room. That way if it were a simple g-tube problem, it could possibly get fixed, and if it were something worse, then at least the doctors would be able to see him and treat him.

Brett and I got to the ER about 4 in the afternoon. His breathing was rapid and shallow, about 80 respirations per minute. They could tell by his respiratory distress and his demeanor - lethargic, crying, and his low-grade fever, that he was sick, so they went ahead and told me he would be admitted. They took cultures, but went ahead and started antibiotics just in case because the cultures take a few days to see results. As usual, he went for his chest x-rays and abdomen x-rays. The good news was - as they had said his lungs sounded good - the lungs looked clear. The x-ray was even better than last time he was here in the hospital. They also said it could very well be viral. His flu test was negative, but it is possible that even the common cold could produce this kind of response in his already immunocompromised body. However, no one else in the house is sick.

As we were having these discussions, Brett's breathing continued to worsen. He began to breathe 95 times a minute, and his oxygen saturation went into the 80s. He was quickly put on a .5 liter oxygen flow and hooked up to monitors for his heart rate. His heart rate was climbing above 225! It was a little scary there for awhile. The oxygen itself was not helping his saturation all that much, so he had a treatment of albuterol, which helped instantly. As soon as he started breathing the medication, his saturation went back up to 97 or above. At that point, the doctors began talking to me about putting him in the Pediatric Intensive Care Unit (instead of the peds floor), for at least one night, for closer observation. His oxygen was needing to be turned up higher and higher for his breathing efforts to be effective. By the time all was said and done, he had gone from that .5 liter flow to a 2 liter flow! So between that and the high heart rate and modest fever, ICU was the best choice for him. At that point we were just waiting and the ER was noisy and he was crying and couldn't calm down. Once we got a room in the PICU and got him moved and in a bed with his boppy pillow and his zaky (fake bean-bag hand), he calmed down pretty nicely and was able to sleep some.

Rob spent the night while I went home to take care of the other boys. Rob's dad was in town to sit with the boys while they slept and Rob and I worked out getting all our stuff up here. My parents arrived around noon to keep Mark and Gantt while I drove out to relieve Rob. Now I am here with Brett "until further notice!" Despite spending so much time at this hospital, it was actually our first time to their ER and it's our first time in the PICU. It is a bit like the NICU in that only 2 people can visit at once and we are not supposed to eat in here, etc. One parent can stay the night, though, whereas in the NICU you can't stay. We do have our own private room, and there is a TV, but there is not a bathroom or a shower. You have to go all the way out of the unit to go to the bathroom. Which is strange to me, because even in the NICU there were restrooms inside the unit. If I want to take a shower in the morning, they said someone will take me up to the NICU and I can shower there. Additionally, Brett is on contact precautions which basically means we have to wear these yellow gowns which are pretty much like wearing an electric blanket they're so hot. It's kind of good that everyone else has to wear them too, though, so maybe less mixing of germs they might pick up from other patients. Also we aren't allowed to use our cell phones in the unit. However, feel free to text me or to e-mail me - I can do that as well as use the Internet here in the room.

For today, the major news is that there is bacteria in his blood again, and it's the same bacteria that he keeps having over and over, gut bacteria klebsiella and enterobacter. (I'm pretty sure this is the case but I will correct if I am wrong). Right now he is getting 2 antibiotics intravenously, the same 2 he had during the last round, cefepine and tobramycin. From what I understand, we need to figure out why/how he keeps having this. The doctors are trying to decide if he needs a new broviac (the name of his central line), and whether the broviac he has is infected or not. This discussion and decision will probably take place over the next few days, so we may not have any updates on that anytime soon. For now, the next goal is for him to slow his breathing and it still be effective so he is not having to have so much assistance breathing. The last thing we want is to move him upstairs then have to come back if he gets in too much distress again. The nurse told me just now she doesn't think they have any open beds anyway. The hope is that he might be able to accomplish this by sometime tomorrow, and if there is an open bed, he could move.

Now that it's flu season, siblings are not allowed to visit at all, even on the floor. While I agree with this rule because I don't want my child at risk for getting more sick, it's hard on the other hand for our family. Even for "shift changes" the parent that is staying here would have to go out to meet the parent coming in if the other kids are with us. They can't come upstairs at all. The other 2 times we've been admitted, it's been nice to at least be able to spend time together having a take-out meal or sitting around playing video games and such.

My mom will be here at least until Thursday, Thanksgiving morning. I don't see that we will be out of the hospital by then, but we will cross that bridge when we get to it. Rob and I will switch out when it comes to staying overnight with Brett, but not necessarily every other night, just whatever works out best with what the family has going on and what Rob's work responsibilities demand, which is different every week. If Brett goes to the floor, maybe my mom will stay so we can have a night at home together. Fortunately, Mark is out of school all week, so we don't have to worry about getting him there at 8am and doing homework, etc. He goes back next Monday.

Here are a few specifics you can pray about.

1. The doctors can figure out what is going on! Why he is having these problems with this same bacteria over and over, which aren't even CF-related lung bacteria. That they will be able to find out if the broviac is infected, and whether it is contributing to this problem or not.

2. The antibiotics work and blood cultures will soon come back negative and Brett starts to feel better

3. That Brett begins to breathe more effectively on his own with less effort. When he requires less oxygen and his saturations stay high, we can move out of ICU

4. The stress of our family being separated. Unless someone else stays, Rob and I are never home at the same time, and get zero time alone together. There are no family dinners and family fun nights. It is hard to be the one here at the hospital, but it is equally hard on the one at home. I am so grateful I get to be with my sick son. However, is also tough for me to not be with the other boys, especially Mark. Each day we are here, I feel it's another day that I am not able to spend with my other sons. And each day is priceless. Pray that Mark tolerates this hospital stay well while his world is not normal again.

A big thank you to our parents for helping us so much during these hard times, even though they live so far away. Especially my mom, who does SO much work taking care of the kids and house. It would be way way way harder without her help, and if it were someone besides GG doing it, it would be second-best.

And thank you all - near and far, old friends and new - for being concerned about us and interested in what is going on with our family and our sweet Brett. Thank you most of all for praying, and thank you for your texts - facebooks- emails & calls of encouragement. Thank you for the meals and childcare. And a BIG thank you to all our dependable Chick-fil-A team members who do their best to keep the store running so well while Rob is dealing with all this illness and family stress. We appreciate you ALL!

Mark started first grade in August 2009 at North Raleigh Christian Academy. He is having a good year so far - reading more proficiently, and getting better at math, grammar, and phonics. His favorite thing by far is still art! He does really well with coloring and drawing. Here is a pic of him on his first day.

We haven't been able to get out and enjoy the summer and fall as much this year the way we usually do (we didn't even get to the pool once!), but this past week we went on a field trip to Clemmons State Forest and had a demonstration on how paper is made. Mark's job was to "catch" the paper as it came out of the crank machine.

And below is picture of Mark dressed as Noah on Noah's Ark Day!

What's Been Happening...

Well, it's been so long since our last entry, many of you who aren't signed up as followers have probably quit checking for updates. However, I am going to try and get the word out that we have updated it. Our lives have gotten so busy since Brett came home - although it was busy before, it's different now. We're so glad to have him home!! Every time we feel as though we are too stressed and it's too hard, we just think about how much we love our sons and are so thankful first of all that he has survived the first six months, and second, that we are not in the hospital. First I'll go through an update on Brett's health, then (in another entry) I'll try to describe our daily regimen and answer a few specific questions some people have asked me that you all might be interested in reading. If you have a question, please post and I will try to answer it. So here is the timeline:

August 28, 2009 - Brett is discharged from the hospital after a 153 day stay. Whew! We were so excited and relieved to bring him home. Of course, he will always have CF, but his health was under control enough for us to take him home. He had finally started to gain weight on a consistent basis. Although he was coming home, he was/is still very medically fragile, so the central IV catheter (broviac) was left in just as a precaution. The doctors felt that there was a good chance he would be sick soon enough again that he would need to be put back into the hospital and/or need fluids for dehydration. If he was dehydrated it would be extremely difficult to get good IV placement on his little body that would be effective. This isn't the best option, of course, because anytime you have direct access to a vein/artery, there is the chance of infection. However, it turned out to be beneficial for his 2nd hospital stay.

September 10, 2009- First CF Clinic visit at UNC since discharge. Gained an average of 23 grams a day. The goal is 20-30 grams, or around an ounce a day. The weight gain was good, but his throat cultures had grown klebsiella and enterobacter, and so we started oral antibiotics.

September 17, 2009 - Doctor called because September 17 throat cultures grew klebsiella and enterobacter, and the antiobiotics we were using was not doing much for those particular bugs. Started a new oral antibiotic that night.

September 24, 2009 - Went for his 2nd clinic visit, and he had only gained 15 grams a day, so the weight gain was still happening, but certainly had tapered off. The doctors felt that after a week of the antibiotics his breathing and cough should've gotten better than it was. So they suggested re-admitting him to the hospital that weekend to start him on IV antibiotics. They really don't want Brett in the hospital any more than we do - mainly because of the viruses so prevalent in the hospital. However, the medicines must be started in the hospital. Also, they felt that we should admit him now at the beginning of the season and try to get his system "revved up" for the winter so he may not have to come back and stay during the worst part of the winter/flu season. We hope that will be the case.

September 26, 2009- A bed opened and we got Brett settled in his room around 9 PM. Started the antibiotics right away, and stayed 5 nights receiving IV antibiotics and checking the doses to make sure they were giving the correct amount for his body and to see that he was definitely improving. All this time Brett seems the same temperament-wise. If he felt worse than normal, he didn't really show it. So it was not very stressful or emotional as hospital stays go, just stressful/lonely in the fact that being in the hospital drains your energy and the family is separated.

More than anything, I was glad Brett had been moved out of the NICU during his last three weeks the first time he was in the hospital and up to 5th floor children's, which is where he will go whenever he is admitted under the pulmonary service. Because of that experience, I had sort of "learned the ropes" for 3 weeks, and I was confident and more effective as a parent/advocate this time, knowing how things worked on the floor, and also having had Brett home with me for almost a month, I knew him better as well. I knew all the office staff and many of the nurses, and I wasn't afraid to ask for things or tell them how I wanted things to go. In fact, they took my spreadsheet of times for medications I use every day and made a copy of it, so they would be able to follow it and bring him his meds the same time I do so that he would stay on the same schedule. I thought that was really cool.

One of the things we really wanted was to be discharged if possible before October 1 , because that was the date that they closed the hospital to ANY sibling visits under 13 years old. During the last stay and during this stay, Gantt was allowed to stay with me night and day. They are being proactive in infection control because the anticipation of a bad flu season, which I do agree with for the health of my patient; however, it sure will make it hard on our family whenever he's in the hospital. So we're praying he won't have to go back all winter long.

October 1, 2009 - Discharged again and met the home health care nurse that afternoon to get us started on the IV antibiotics at home. If Brett did not still have his central line, we would have to stay in the hospital 3-4 weeks, just to receive the treatment!! Needless to say, we are VERY thankful the doctors had the wisdom to do that for Brett.

October 2, 2009 - Twins turned 6 MONTHS OLD!!

October 6, 2009 - Gantt had his 6-month checkup, with regular immunizations and his first flu shot. Gantt weighed in right about 17 pounds, which is 45th percentile on the regular six month growth chart (not a preemie chart). His height is the 50th percentile, so he may be the tallest one when everyone is grown up!

October 9, 2009 - Brett had his 6-month checkup, with regular immunizations and his first flu shot. Brett weighed 11 pounds and 9 ounces, which is 9 ounces more than when he was discharged October 1. Remember, the goal is about an ounce a day, so we are very encouraged by that. Brett's weight is 23rd percentile on a preemie 6 month scale, so that is pretty good for a child with CF. His height is 50th percentile on a preemie 6 month scale. Our doctor estimated his physical development is about the same as a 2-month old right now. Mental development seems normal for a six month old. Now our whole family has had the flu shot, and the twins will go back next month for a booster. Still waiting on H1N1 vaccinations to come out.

What the next few weeks look like:

The nurse comes twice this week (October 12th) and twice the next week (October 19th) to weigh Brett and get his labs and stuff. On October 22, the early intervention people are coming to assess Brett and set up services, which he'll probably qualify for almost all of them. On October 24, we go to the special infant clinic at UNC, which is exactly what the name is. They monitor developmental progress for premature or ill infants who are behind. Just more closely monitoring than our regular pediatrician does. Also on October 24, we go back to CF clinic for a follow-up and determine whether Brett can stop the antibiotics.

So for the last week we've been trying to settle back into being home, and make sure we are getting all the administrations done. It is very tough to get any sleep. Really. Between caring for the basic needs of both twins, then all Brett's extra care, and of course, Mark - there isn't much time to get a whole lot of uninterrupted sleep. That is perhaps the hardest thing right now because without sleep/energy, it's hard to get everything done, and of course the kids have to be fed & clean, clothes have to be washed, homework has to be completed, backpack/lunch packed for the next day, etc. etc. Fortunately, Mark is old enough to take care of himself in a lot of ways, such as taking a shower on his own and many other things. Unfortunately, some other things we just have to put off until they just absolutely can't be put off any longer. Oh well, such is our life right now. We are so happy, happy to have all our boys home, and we are enjoying our family time.

BRETT IS HOME!!!!

Brett came home yesterday and we are trying to get settled in to a routine.  So many meds and so many things to do.  It is difficult enough by itself without having another baby in the house.

Pics will come later. 

One Week on 5th Floor

Well, we've made it a week now on the 5th Floor of the UNC Children's Hospital. After a few days of trial and error, and making various changes to Brett's nutritional calories, volume, and rate of administration, he finally gained 20 grams at his weight check yesterday! At his weight check this morning he had gained another 40 grams, which puts him at 4.12 kilos, equivalent to 9 pounds and 1 ounce! We are so encouraged to finally see a little bit of progress after a week. The events of the day haven't changed much - he still gets his various breathing treatments several times a day, various medications, his enzymes, and chest pats 4 times a day. We are able to feed him a bottle every 6 hours on top of his continuous feeds. He eats around 10 milliliters in each bottle. Gantt and I (Jennifer) pretty much hang out all day - it's almost like it would be at home, except we are in a hospital. They eat, they play, they nap. We just get a little cabin fever being stuck in this tiny room, just like you get cabin fever when you're stuck at home with one or two babies. But it isn't home, so we don't have the comforts of home, and we don't have the whole family together. Can't wait until that day!

Since Brett started coughing on Sunday, they did a throat swab to see if there is any bacteria growing in his lungs. The doctors wanted to hold off on giving antibiotics first because sometimes antibiotics can complicate what is going on in the bowel. Second, they want to see exactly which bacteria is growing so they can use the appropriate antibiotic - not start something without information, then get the information and have to change the medication. But each day Brett has been coughing a little more, so today they pretty much decided that they do want him to go on an antibiotic, but they still are going to wait to see what antibiotic they are going to give him.

Thank you all who have come to visit and made my days a little better. Thank you all who have volunteered to come sit with Brett and give us a break as well. We appreciate everyone's support! New updates soon!!

This one I call the "fist bump"

Notice the size difference between the twins! It is striking how much smaller Brett is!

Day 3 on the Pediatric Floor

When I posted last, it was in the afternoon on August 5, last Wednesday, and I explained how we were expecting to be transferred to the pediatric floor possibly by this weekend. Well, I got home at 5:00 that day and we all went out to eat, and at dinner, I got a call from the hospital telling me they were moving him right then! So we still had to go home, get Mark in bed, and pack a bag before I could make it back to the hospital. I arrived around 11:30 and stayed the night.

Although it is a very good thing Brett does not need intensive care anymore, it is a lot more difficult on us because someone needs to be here with Brett all the time. It is not required by the hospital of course, but with a private room and sharing a nurse with several other children, we are determined that he not be left alone for more than 30 minutes or so. Thankfully, they are making a special case for Gantt to be able to stay overnight. Siblings are not usually allowed. Also, Brett's room is right at the nurses' station, so if we leave to go to the cafeteria or whatever, we just tell them to please listen out for him since we will be gone.  We have many more "liberties" on the floor than in the NICU, as I also explained earlier. It is so nice for Gantt to have his pack and play to sleep in. 

Overall, we are getting settled in fairly well, although still "learning the ropes" as things are very different here. Brett is sleeping better in a quiet, darkened space, and he is able to do a lot more interacting. As hard as it is to sleep here every night, it is nice to not have to leave him, either. The CF doctors and nutritionists are working with his feeding protocol to help him gain weight. I talked with a friend today and was able to explain a lot about what it is that Brett's disease does to his body. If you would like to read a little more information about CF, go to this website for the most accurate and most recent information.

cff.org

 

Hi Everyone,

We are sorry we have been slack in updating the blog. Things were going really well with Brett, and he was actually scheduled to come home today, August 5. But then over the weekend after they took him off his IV fluids in preparation to come home, he did not continue to gain weight. Unfortunately, this is enough of an issue to delay his homecoming again indefinitely. One good thing is that he didn't come home only for this to happen and have to be readmitted to the hospital. This is the scenario the doctors are trying to avoid.

The other thing we are so happy about is that although he must still stay longer, it is not because he is sicker or critical in any way. He is about to be moved out of the newborn intensive care unit to the regular pediatric floor. The main reason for this is that he will be under the care of the pulmonologists and gastroenterologists that work with kids with CF all the time. There will be a lot more consistency in his care and hopefully a specific strategy to get him to absorb his nutrients and be able to leave the hospital. Whenever he gets sick in the future and has to stay in the hospital for a little while, these are the doctors who will take care of him then. It will be good for them to get to know him now while he is "well" respiratory-wise and before he leaves the hospital the first time, so that when he returns in the future, they will be familiar with him already. Also, we as a family will learn how things go on the pediatric floor so we will know better what to expect for our family when he goes to the hospital for inevitable respiratory issues/illness/infections.

On another note, I (Jennifer) had surgery last week to have my gallbladder removed. I had gallstones caused by my pregnancy and they were causing gallbladder attacks and a lot of pain. That surgery was successful and after 3 days of recuperation, I was pretty much back to normal. My mom came and helped while I was not able to take care of myself or the kids. She and Rob tag-teamed and got everything done during my convalescence.


Whenever a bed opens up on the 5th floor, Brett will be moved there. It may be as early as this weekend. This will be quite a change for our family. This is going to be better for us in many ways. Brett will have a private room with our own bathroom and place for Gantt to spread out (sleep in his pack and play, have other toys) and we can be a lot more comfortable. Mark will be able to come visit (he has not been able to see Brett since Mother's Day - close to 3 months ago now), and we can have visitors. we can eat in the room, watch TV or play games, lay down and take a nap, whatever. These may sound like small things, but these are things we have not been able to do all these months that Brett has been in intensive care!! We have to leave him just to go get something to eat.

We will be doing a lot more to care for Brett ourselves, so there will be more consistency in his daily schedule. We will get lots of practice caring for his special physical needs (feeding bottles, giving enzymes (right now every 3 hours), giving breathing treatments (3-4 times daily), giving chest physical therapy (3-4 times daily), administering medications through the g-tube and learning general maintenance of the g-tube working the pump), and practice caring for both babies before we actually have them home. We are going to be really comfortable caring for Brett before he comes home, so we will know better what our daily regimen will be like.

The only drawback to this change is that someone will now need to be with Brett pretty much all the time. That is going to be especially difficult for our family as a whole. In the nursery he is in a room with 10 other babies and under constant nursing care. On the pediatric floor he will be in a room all by himself, and the nurse will be responsible for 3 or 4 other children as well. We are not willing for him to be alone in this situation. This means I am basically going to be living at the hospital now - pretty much "moving in" with Brett. Although there are certainly great things about this situation, it will also certainly put a greater strain on our family. Additionally, although it looked as if he would be coming home this week, we are now looking at one more week at a minimum and a couple more months at the maximum maybe. There is just no way to know how long this process will take.

You may be asking yourself - what can I do to help? Well, if you or anyone else in your family is not sick, you can visit us sometime. In the NICU I am around the nurses and other people all the time. In a private room, I will be pretty isolated. Although I'll be hooked up technologically, it would still be nice to see a friendly face here and there.

Also, I am concerned that he will be in the hospital for a good while longer. If it was just a few days or a week, I am confident that Rob and I could handle it and take care of our family just fine by ourselves. But if it is several weeks to a few more months, we are going to need help. I am thinking that if this takes longer than a week or so, it would be really nice to have people who might help us sit with Brett - to give us a break, maybe even stay a whole evening so we can enjoy a "normal" evening here and there with Mark and Gantt at home. Or go out for dinner & ice cream with Mark and Gantt or whatever. Please let us know if you are willing to do this at some point. You would not be "responsible" for any of Brett's care. Obviously, the nurses and doctors are responsible for his care. It would just be staying in the room so a four month old baby is not ever alone. If he cries, you would be there to comfort him and hold him for awhile, play with him - as he is getting to be a lot more interactive and social now that he's older. Also, I will never be able to leave for awhile with peace of mind unless someone I know is with him. Even if you are a church member or a friend of a friend that I haven't even met, don't let that keep you from contacting me if you are willing to do this.

Thank you all for your prayers, encouragment, meals, etc. The support has been wonderful - from local friends bringing meals to far-away family and friends just sending encouraging words our way. We ask you to continue to keep our family in your thoughts and prayers, and keep checking for updates - we will try to get better at keeping you up to speed through this blog.

--Jennifer & Rob

103 Days Old!

Brett above and Gantt in his stroller

Brett is doing great.  Right now he only needs to do a few things to come home.  

1.  Get to full feeds.  He is on track to be on full feeds (based on body weight) by the end of July.

2.  Tolerate full feeds.  He has to absorb the feeds properly and have appropriate output.

3.  Once he is doing this, he must go 1 week without any episodes.  After that week he comes home!!!

Brett completely weaned of the continuous morphine drip.  They have to give some to him a few times a day to help with withdrawals, but it is a big step to not be on the drip.

Happy 3 month birthday

Well it has been 3 months.  Jennifer got a couple photos, but Brett was not very happy about it!  They should start feeding Brett tomorrow.  Hopefully he does not have any strictures and the feeding will progress normally.

We also got the tests back for Mark, and he is a carrier of CF.

Cute Pictures

Brett got a new chair to sit in.  He loves the vibrations and is enamored with the hanging toys.  It is great that the hospital wants us to bring stuff like this in so he can develop like a normal child at home.  They even have volunteers that come in and hold the babies when the parents can't make it in.  

Mark loves his brothers.  Here is a picture of what he likes to do everyday when it is playtime for Gantt.

6/29 Update

Brett did well during his surgery.  Came back extubated and wide awake.  They asked us to bring in his car seat so he can sit up and not have to just lay there all day.  We are also going to bring in some toys so his brain can get stimulated as well.  Currently we are waiting to finish the antibiotics.  Once he is done, he will get a lower GI to check for any strictures.  If he is clear, then they will begin feeding again.  If not, another surgery.  All of us are hoping and praying he is free and clear.

6/26 - update

They could not get the PICC line in Brett this morning.  He is currently in the operating room getting a broviac.  This is medically necessary so they can give him everything he needs through an IV.  He will go under general anesthesia, but the procedure should not take long.  Hopefully he will come back and not be intubated.

6/23 - update

So Brett had his second lumbar puncture today.  Yesterday they could not get any fluid after two tries.  Today it worked and the results were negative for meningitis.  He has had a problem with his broviac clogging and they removed it this evening.  They will wait 24 hours for any bacteria to get killed by the antibiotics and then put in a PICC line.  All of this will be done bedside, however, it will be completed by the surgical team.

His abdominal x-ray still does not look as good as it should.  There is not an issue with NEC anymore, but they are still a little concerned about the air in the wall of his intestines.  They are still taking x-rays every 24 hours and looking for improvement.  Once the x-rays are normal, they wait 10 days and then begin his feeds through the G-Tube.

We need to get him on feeding by mouth again because enzymes are so important for kids with CF.  Enzymes work best if taken orally.  The enzymes help him break down his food (even breast milk) so the nutrients will go in his body.  

He seems to be doing better, but the roller coaster ride of the newborn critical care center is very hilly.  Some days it is up and others it is down.  Please continue to pray for his health.

Happy father's day!

So it seems Brett is "out of the woods" regarding the NEC and blood infection.  The antibiotics have been working.  It seems that we will not be totally comfortable until Brett gets to come home.  It looks like it will take at least a month before he gets back to full feeds.  There is also a possibility (25%) that when his intestines heal, it will create some scar tissue which would require surgery.

Not so good Thursday morning.

Today we got a call from the hospital.  Brett took an unexpected turn for the worse last night.  Everything seemed to be going so well.  However, he developed necrotizing enterocolitis.  It is very serious and they are treating him.  We will know more by Saturday evening.  Hopefully the antibiotics and other treatments will work.  If not, it could be fatal.  Please continue to pray for him and his doctors.

Everything is going so well.

Gantt above and Brett below

Everything is really going well.   Brett came off all breathing aids much faster than anticipated.  He is still weaning off morphine (will take several more weeks) and he is not showing many signs of withdrawal.  

His G tube fell out on Saturday, so they installed a mic-key button.  The best way to describe it would be like the plastic plug on a beach ball that seals the air in.  You can remove the tube and then put that little plastic plug in place so the stomach is sealed off.  This is great because he would then be able to put a shirt on and nobody would know the difference.  We will need this long term because we anticipate having to feed him through this tube for many years to come.  (mainly supplement feedings during the night -- CF kids have a hard time getting enough calories)

The next step is for him to be able to suck on a bottle.  He is currently getting continuous feeds through the g tube.  Once he can swallow, they will begin giving him enzymes.  The enzymes will allow him to break down his food and keep as much nutrition as possible.  Many CF babies begin taking enzymes as early as 10 days old!  The occupational therapist is working with him so he can breath, suck, and swallow without his heart rate and oxygen saturation dropping.

It still may be 6 more weeks, but it is nice to see him sleep and actually begin to look comfortable.

Gantt is fat and happy!  He is so wonderful to have at home and Mark is taking to him very well.  The other morning I (Rob) was having a hard time comforting Gantt.  Mark asked if he could try so I let him.  Within seconds, Gantt was quiet and Mark had the biggest grin on his face.

Mark began a new hockey class.  It is 1.5 hours long beginning at 8AM on Saturday mornings.  I am so shocked he stays on the ice the whole time without a break.  He is really enjoying himself out there.  

Making Progress

Brett is making some progress.  It looks like they will take him off the ventilator either today or tomorrow.  We hope he does well and does not labor to much to breath.  He can go 15-30 minutes okay, but he labors a lot right now.  The though is that he could not keep it up 4 hours later because of how hard he has to work.  

Jennifer got to hold him yesterday and he is beginning to look a lot better.  He still has a couple more months to go, but getting off the ventilator is the first big step.

Mark began mini-mite hockey yesterday.  It begins at 8:00 AM and ends at 9:30 AM.  I was happy he stayed on the ice pretty much the whole time.  His previous hockey classes were only 30 minutes.  

Gantt is still doing very well.  He weighs almost 9lbs!!  There is no real update with him, except he is so easy going and that helps greatly with all that we have going on.

60 Days Old!!

Today the twins are 60 days old! Gantt continues to do well and he has his 2-month check up this week. Brett is doing a little better every day. Today his oxygen was at 36%, and the doctors are talking about beginning to "challenge" him a little more with his breathing. That means turning down the settings some on the ventilator and seeing how he will tolerate it. Tonight he did not do so well, so they turned it back up, but not quite as high as it was before, so he is still making some progress. The goal for this is to get him back on a conventional ventilator - two reasons, one is that they are more familiar with the conventional kind, and the other is that he does not have to be quite as sedated on the conventional kind. Of course as little sedation as possible is best, and that way he could also move around more, and that's good for his body as well. He continues to release the fluids the way that we want, and today he was back down to about 8 1/2 pounds. At one point he had gotten over 9 1/2 pounds because of retaining all the extra fluid. 

Also, now that it's 10 days post-op, his surgeon gave the OK to start feeds again! He is on continuous feeds of maternal breast milk at 1 mL per hour. They started this afternoon and he has tolerated it well so far the couple of hours he's been on it. Tomorrow we have the meeting with the doctors.

Today was Mark's last day of kindergarten.  I made it through the "celebration" with minimal crying! I must brag on him a little. On his standardized tests he scored very well.  What I am most proud of, though, is his score on Bible assessment. A score of 565 or above is considered advanced on Biblical knowledge, and Mark scored a 633! This means "exceptional mastery of biblical facts and principles with a strong understanding of how to apply them." We pray that Mark continues to grow in his knowledge of the Bible and in his relationship with the Lord. We are so proud of what he has accomplished this year at school. 

Nine days post-op now. Brett has done a little better each day on the high-frequency ventilator. We've seen the oxygen percentage decrease while his oxygen saturation increases, and that is what needs to happen for him to be able to be free of the machine. Just last Monday, Memorial Day, he was on 100% oxygen. As of yesterday he was down to 37%, and he is doing a lot of the breathing on his own. We and the doctors are very encouraged by his progress. He has responded well to the diuretic medication they have given him to help him release all the extra fluids his body was retaining from the surgery, so he is looking a little more like himself now. Yesterday I (Jennifer) saw him open his eyes and look around for the first time since May 21.It also was the first time since his surgery I have been able to see his chest rising and falling from breath.  He is still on a continuous morphine drip, but instead of giving him additional morphine doses, they have changed to a different pain medication that is keeping him comfortable but doesn't leave him completely sedated. He is now stirring around more. He still does experience a lot of pain, but that is to be expected with all he is going through, and they try to keep it under control. 

He still gets chest physical therapy and has his lungs suctioned out several times a day. Right now he is in a more stable place than last week. There are no more surgeries or procedures that must happen before he comes home. However, that still may take a long time. We are talking with the doctors on Tuesday to discuss what things Brett needs to accomplish before he can come home. Probably he will be at UNC a few more months, but we will see.

Gantt continues to do well. He is such an agreeable baby and he is such a joy to have. With all the additional stress of having Brett sick in the hospital, it is a blessing to have Gantt be a low-maintenance and good tempered baby. He is just happy. 

Rob and I have been able to get a lot more sleep for the past few days because G.G. (my mom) came to visit. She got up with Gantt for 4 nights! It is amazing how much better a little rest can make you feel. 

We had Mark's 6th birthday party yesterday with kids from his class at school. Tomorrow is Mark's last day of Kindergarten and he is out for the summer. We are keeping him busy with fun day camps through the summer while looking forward to first grade. No vacations this year...we're counting on everyone being well enough to go next year though!

Recovery....

Recovery for Brett has been difficult.  His chest is full of mucus because of the CF and he cannot breathe on his own.  Today they switched him to a high frequency ventilator.  They keep him on a morphine drip and have him sedated because just a little bit of stimulation aggravates him greatly.

After putting him on the new ventilator, they were able to lower his oxygen output to 90% which is a step in the right direction.

His body was pretty beat up during the surgery and he is retaining a lot of fluid.  They also added a G Tube that should help with his feeding when he is ready.  

He has had a lot going on and he has required a lot of attention.  Please continue to pray for his recovery.  The doctors anticipate a full recovery from the surgery, but they said it will be a slow process.

On the eve of surgery

Mother's Day Picture

Tomorrow morning Brett will undergo several procedures during one operation.  He will get his intestines reattached tomorrow which is the main reason for the surgery.  However, while he is in, they want to take advantage of him being under and perform a few other things.

He has had issue with reflux.  Last week he developed pneumonia again combined with vomiting.  Unfortunately he got very sick and was vomiting bile.  They took him off of his feedings and began to monitor him closely.  It has been decided that they will do a procedure that will help his reflux .

The third procedure will help treat his CF.  They will do a bronchoscopy and while they are looking at his lungs, they will inject some saline.  They will then withdraw the saline and process it in a lab.  This will determine specifically what type of bacteria is in Brett's lungs.  Once they know the exact "bug" they will be able to treat him more effectively.  A direct result of this procedure is that Brett will have a fever and will be sick.  Please continue to pray for his health.

2 boys

Brett is pictured above

I apologize that it has been a while since our last update.  Since Gantt has come home, we have seen little sleep.

Gantt is over 6 lbs and he is doing great!!  He is as sweet as he can be and Mark has been enjoying his company.

All last week, Brett was doing better.  They began to give him MCT oil and it really helped his output decrease and gain weight.  Over the weekend he developed another blockage.  The surgical team had recommended that they perform the second part of his operation at the end of next week.  With this new blockage they will look at him sooner and decide if they need to operate on it.  If they do, then they will work on the blockage and reattach his intestines at the same time.  

We really don't know what this new blockage is because it is hard to tell on x-ray.  They will put dye in his system and then run tests to see a better picture of what is going on.  After that, the surgical team will make recommendations.  Brett is currently off milk and getting his nutrients through the IV again.  

Even though we don't know what this new blockage is, we don't have a reason to think negatively.  Please keep him in your prayers.

A few pictures

Above is Gantt in the car seat ready for his ride home

Here are two great pictures of Mark and Gantt

Grandpa got to hold Brett for the first time last weekend

On Monday night Rob had his championship hockey game.  This was the second season in a row that the Chick-fil-A hockey club won the title!

Gantt is home!!

We got to bring Gantt home on Sunday night.  He is doing well and pictures will follow in the next few days.  

Mark had his first baseball game today and he went 2-2 and did not have to use the tee!

Brett is doing much better.  They have moved him back to his crib and began feeding him milk again.  (over the weekend they dropped it and went back to the IV)  He is still on oxygen, but his color has regained and the antibiotics helped.  He will continue them for a few weeks to make sure all the "bugs" are gone.

Thank you for your thoughts and prayers.  This week we are trying to figure out (and sleep when possible) a routine with Rob's work, Mark in school, Gantt at home, and Brett still 45 miles away at UNC.

Update

We got a call from the hospital yesterday and Brett had a turn for the worse.  It turns out he has pneumonia.  They did give him antibiotics and red blood cells.   They also had to put him back on oxygen.  He was wiped out and needed a little extra help.  When I checked on him this morning he was alert and feeling better, but he is still being closely watched.

I am sure he will make it through, but we never like getting those phone calls!