31 May 2011

Feeding Clinic Update

I began observing Bennett in his feeding sessions today.  I will write more about this in another post.  But I will continue to observe him outside of the room during breakfast in the morning before I begin observing him while inside the feeding room.  This picture was taken through a one-way mirror where I could watch Bennett without his seeing me.  I was able to observe the Feeding therapist utilize the behavior modification plan.  Bennett enjoyed watching Elmo and playing with a toy while the therapist requested that he eat blended macaroni and cheese and drink chocolate milk.

It has been SUCH a vacation not to worry about Bennett's feeding issues for two weeks.  But now that I'm rested, I'm ready to roll up my sleeves and begin learning how to do really move him along towards eating.

Today was a good day for learning information about Bennett's progress.  After having come from a long weekend where the important people here at the Feeding Clinic were on vacation for Memorial weekend, it was nice to be able to get updates on several aspects of what's going on with Bennett's care.

I had a chance to talk to Bennett's Occupational Therapist, Teresa, in depth today.  It's too bad that she's having to be gone for a week and a half to get married (as she's be absolutely wonderful) but she was able to introduce us to our new therapist for potentially the endurance of our time here named Aubrey.  Before Teresa left today, she was able to teach me about "joint compression" and how to use the Wilbarger technique to help Bennett's brain and sensory system organize itself better, especially before he eats.

After speaking with Teresa this morning, I was able to sit down with Ebby, Bennett's speech therapist who is equally great.  Ebby explained to me more about our plan with Bennett and how she hopes to help him.  She seems to be aggressive with him and really wants to push him as much as she can here.  I think this is a good thing.  She is requiring that he drink more and is trying to increase his bite size so that he eats more per meal.  We have increased his meal times to 3 meals, 1 snack and 1 drink.  That's 5 separate sessions per day.  That's 2.5 hours worth of eating per day.   While I realize that 2.5 hours per day at the hospital will eventually translate to 2.5 hours of eating per day at home, I'm glad to see Ebby is really trying to work intensely with him to get those calories in him.  We hope to wean him from another tube feeding before we leave.  Bennett needs 1000 calories per day so he really needs to pick up his calories so we can do that.  Ebby changed Bennett from a chocolate Carnation Instant Breakfast with white milk to a vanilla Carnation Instant Breakfast with chocolate milk and he's instantly begun drinking more.  We have also changed him from the juice bear to using a straw in a medicine cup, which has also improved his fluid intake.

Lastly, I spoke with Laura, one of the team leaders and the child psychologist on staff at the Feeding Clinic.  She has been really helpful with bigger questions Brian and I have about what to expect for the future.  She and I spoke about Bennett's progress and how he relates to other patients who have come and gone at the Feeding Clinic.  She mentioned that only 5% of patients who come for the inpatient feeding program here go home without any need of follow up.  She mentioned that usually those are patients who have mainly behavioral issues regarding food.  However, she explained that most kids who come to the Feeding Clinic at Baylor have more intense eating issues and therefore need lengthy therapy afterwards.

I asked Laura about how Bennett's Cystic Fibrosis affects his outcome.  She explained that most of the CF kids who have come to the clinic have come with mainly behavioral problems, putting most of them in the 5% of kids who do go home without needing much follow up care.  But Laura went on to say Bennett's issues are less CF and more oral/motor issues that come from his lengthy hospital stays and medical interventions when he was a baby (both were complications of CF).  Laura explained Bennett's trajectory and progress is much more consistent with a child with sensory oral/motor eating issues than a child with CF.  So, we are hopeful that while it may take much longer for these issues to resolve, they are fairly normal for kids in his situation.  Laura believes that with the right follow up, we may be able to get Bennett where he needs to be within a year.  This is SO exciting to hear!!

In other news, Nana and Papa have returned home to Missouri (although I still have many pictures to post from their visit).  We had a wonderful visit from my Uncle Darryl, Aunt Laurie and cousins Kendal and Ethan.  And Brian has gone home for a few days to study and check on things on the home front.  Fortunately, my mother has come to stay while he is gone and to take care of Oliver.  I cannot express how much having family visit has helped us all enjoy our time here.  It really has helped us make this transition much better.  It takes sacrifice by family to be here but I cannot thank them enough for loving us enough to be here.  More pictures to follow!

30 May 2011

Oliver's Adventure: First Major League Game

One of the fun things we did with Nana and Papa this week was go to a Texas Rangers game near the hospital.  This was Oliver's first Major League Baseball game and he really enjoyed it.  We all did!

The game was a day game between the Texas Rangers and the Chicago White Sox.  

We went to the game while Bennett was in therapy and taking his afternoon nap.

Check out this guy's head.  We sat behind him and loved looking at the art on his skull.

Oliver enjoyed a hot dog.

My boys.

Nana and Papa, we really enjoyed being with them.

Momma and her firstborn.

Father and son.  We had to bring out the umbrellas because it was HOT!!!

I'm not quite sure why we chose to wear bright yellow/gold to an all red and blue Rangers game?  We stuck out like a sore thumb.

My favorite part of the game was the ice cream!!

Oliver and I shared and he loved it!  It was made from Bluebell ice cream and was scrumptious!!

After we were done, Oliver gave our baseball bowl/plastic cap to Mr. Fox.

Mr. Fox felt much more in the Texas Ranger spirit with his new cap.  Even he had a good time at the ballpark!

Oliver loved his baseball adventure to see his first game!  We just wish Bennett had been able to join us too! 

Bennett's Menu

In the next few days, I will begin the training process to learn how to do what they do here at home.  I thought that I would share what kinds of foods Bennett is eating here.  These will be similar foods we will feed him at home.  Our goal is to start with these foods and move through similar textures until he is ready to move up in his feeding skills.  Once he is proficient with his eating these foods (aka he is eating more of them), we will begin introducing chewing foods.

For now, here is what Bennett is eating: (blended foods are so he doesn't get fatigued chewing)
For Breakfast: vanilla yogurt and Carnation Instant Breakfast with whole milk
For Lunch: blended macaroni and cheese  chewing) and a Carnation Instant Breakfast with whole milk
For Snack: Vanilla pudding, blended pears and Carnation Instant Breakfast with whole milk
For Dinner: Vanilla yogurt, blended pancake and Carnation Instant Breakfast with whole milk

He had Spaghetti-Os and blended chicken and rice at one point but he didn't really like either one.

Bennett tends to eat about one ounce of each food, which is a pretty small amount.  In general, he eats only 300 calories per day.  He needs to eat about 1000-1200 calories per day (those with CF need to eat more than an average kid to account for malabsorption issues and higher caloric needs, likely from the greater amount of energy that the body must put towards breathing).

28 May 2011

Feeding Clinic Update

Our week with Nana and Papa flew by. We are so sad they had to leave early this morning. We thoroughly enjoyed having them here. They were so helpful to us with the boys and particularly helped us pass the time away. We loved sharing meals with them, spending time in the room with them and exploring Dallas with them. Overall, we just enjoyed their presence.  They are generous to us in so many ways and we appreciate every bit of love and help they provide to us.

We are finally in a routine downstairs in our new room.  We do like it here.  We sacrificed a few important things to be down here but we gained easy access to the playroom, a much more laid back staff and more freedom to move about.  It seems like the floor upstairs is for more critical children, so being down here feels more like living in the dorms than being at a hospital, which is good.  I am having to work pretty hard to take a shower with my cast in a separate area down the hall.   But I'm getting in a routine so its less bothersome.

Bennett is still doing well with his eating.  He is still eating about the same amount as earlier this week but they are about to move him from thick liquids to thinner liquids.  This is because he is demonstrating he can tolerate and handle the thinner liquids without it spilling out of his mouth.  They start with the thicker liquids because it's often easier to handle at first.

Brian and I will start training next week so that we learn this behavior feeding method.  I hope that it will go smoothly.  I have really enjoyed being able to step back and not be so involved with his feedings.  It has been nice at the hospital to not worry about when he needs to take medications, getting his tube feeds set up or whether or not he's eating orally.  Cystic Fibrosis seems to be less of a focus here since he is not sick and maintaining his disease is relatively easy in a hospital.  It is the nurses' job to tell me to give him his meds (and make sure they are prepared to ready).  It is the nurses' job to check his poop and make sure his "output" is appropriate.  And it is the nurses' job to monitor his fever, which might indicate an oncoming illness.

My thankful moment for tonight #25.) is I am thankful for being able to be mom and not nurse to Bennett these past few weeks.  It's so wonderful to figuratively kick off my shoes and just be able to focus on enjoying the kids and where we are rather than worrying about the responsibility of keeping my son healthy.

We have hit the halfway mark for our time here.  I expect that within another week or so we will hear more about what day we will be discharged.  Another feeding patient leaves tomorrow.  And Tuesday, two more feeding patients arrive.  I often think about how much we looked forward to sending Bennett to such a wonderful program and I am reminded how thankful I am to be here.  As the time approached, I dreaded that our time here would be difficult, especially for me.  But God has been good and has given me both peace and comfort while I am here.  I am thankful.  (We'll call that one #26.)

Pictures: The Ronald McDonald House Cafeteria

These are pictures from our frequent visits to the Ronald McDonald House for lunch and dinner.

The ladies in the back are some of the volunteers who volunteer their time and food to cook for the residents of the Ronald McDonald House.

This beautiful kitchen is part of the new house which opened in January 2010.

The menu.

Breakfast is 7:00-8:00, Lunch is 11:30-12:30 and Dinner is from 5:30-6:30.  Sometimes we find it difficult to get back to the Ronald McDonald House during those times to eat.  But when we can, we do.

The dining room.

This is the children's corner of the dining room.   It's pretty cute.   Small tables and a TV with cartoons.

This well lit and cheery dining room makes eating at the Ronald McDonald House fun and enjoyable.

27 May 2011

A Therapy Dog Visit

 We had a visit from Belle, the therapy dog, a few days ago.  The boys both LOVED it!  The dog was beautiful and loved to be pet.  Unfortunately, I completely forgot to get my camera out until Bennett had been taken to therapy and Oliver had been asked if he wanted to "walk" the dog.

 A boy and his dog.  Too bad the boys won't be getting a family dog until they are go off to college!  We love pets, but only to touch, not to keep!  

26 May 2011


:::EDIT: I should probably qualify my feeling of loneliness.  I actually feel very loved and not lonely here in Dallas in most ways.  Nana and Papa are here.  Brian is here with us.  I know friends are just a phone call, email or Skype visit away.  But sometimes, at night, at the end of the day, when all is said and done, it can feel a bit lonely to live in a hospital.  It's just part of the whole package...and something that I seem to be able to relieve with time and processing.  Fortunately, writing my feelings down helps relieve the stress.:::

The novelty of a "vacation" at the hospital is starting to wear off.

I was doing really good, feeling balanced and secure until today.  Our hospital room, our safe haven, here at the hospital is no more.  We are now in a new room, on a new floor with new rules and different children.  There are things I will likely appreciate about this change later but for now, I'm really disappointed.

And, not only am I disappointed, I am feeling unsafe.  I really liked our room.  We had come to the hospital with a cheerful spirit ready to make the room cozy and fun.  I had to leave behind my wallpapered bulletin boards, the ability to hang my clothes, a private bathroom and our quiet "cul-de-sac" hallway.

Now, I sit in a room that has new shelving for which I have no organized boxes to place our stuff.  We traded our private bath for a shared bathroom (between 4 patients and their parents), which means I must hobble back and forth with my toiletries and ask a nurse to bring me a chair in order that I can prevent my cast from getting wet during my shower.  Now, Bennett is subjected to a much louder floor whose lights shine through his window starting at 6AM (if this doesn't work out tomorrow, I will exchange his bed for mine so that I am closer to the door and he is closer to the window, an effort to keep him asleep as long as possible).

The nurses have started to get to me more.  I've had one or two make snide comments that have made me feel insecure.  This is typical of women...we say one thing but communicate much more by our voice and bodily language.  I pick it up and begin to internalize their bad days or frustrations.  It has made me feel like maybe I'm being demanding or irresponsible or entitled, all things that I dislike people to think of me...and things that I probably am not being but am hypersensitive about coming across to others.  It's made me want to retreat, to be alone and recharge - something difficult to do in a hospital, particularly on a children's floor shared by 8 other people.

After having a nurse, this evening, speak to me in a condescending way, I uttered my only and, as I later realized, useless defense, "it's hard being in the hospital.  You're already away from your home and unable to control your life.  And it's even harder having just moved to a new room and new floor and having to learn new routines."

The nurse smiled and nodded in a way that told me she didn't care - or at least understand.  This is her workplace, not her home.  Her response is probably not meant to be patronizing but it came across that way.  These little things, like schedule changes, room changes or remarks from other nurses, add up and eventually take a toll.

Things will improve, I know.  My room will get back to order at some point.  I'll get in a new routine and begin to feel confidence again.  But living at the hospital, despite best efforts, can still feel lonely.

Nurses and patients can seem to have conflicting agendas.  Nurses have pressures that patients do not understand.  Patients have pressures nurses do not understand.  And sometimes, being a patient (the only perspective I have) can feel powerless.

I'm paying attention to my emotions, trying to sort out how I'm feeling and how best to respond in order to help me recharge.  But for now, my feeling is simply one of insecurity and disappointment.

I didn't want to move.  I don't like feeling like everything is out of place and I don't know what to expect.  It makes me feel not in control and lonely.

My thankful moment #24 for today is: I am thankful for the opportunity to have had my in-laws help us move downstairs today.  It certainly made me feel better knowing I didn't have to move all by ourselves.

Moving Day

Yesterday, the charge nurse mentioned to me that we might be moving rooms.  Moving downstairs to the Feeding wing.  I told her I preferred to stay mainly because the rooms downstairs do not have an adjoining bathroom so I would likely struggle to carry my stuff to the bathroom since I'm on crutches and would need a chair to sit on in the shower.

However, I knew that it was likely inevitable.  Our room can be used for more critical patients (rehab and respiratory ventilator patients) and a room was open on the Feeding Clinic wing.

This morning when I woke up, I noticed a note to the nurse on our door that said, "Move to 161."  So, we are in the process of tearing apart our room and getting ready to set up shop in other room downstairs.  There are some pluses about moving but overall, it's hard to do.  Being in the hospital is hard enough with the changes that occur...but having to move again can just make that more difficult.

So, thankful moment #23.) I am thankful for Nana and Papa in town to help us move downstairs and get our new room set up.

25 May 2011

Feeding Clinic Care Conference

We had our Feeding Clinic Care Conference today.  Parents of Feeding Clinic patients typically have a Care Conference with the staff every two weeks while in the hospital.  So, we had one today and will do so again in two weeks.

I have to admit Brian and I left a bit disappointed.  We had really felt like since things were going well and we had heard that Bennett was "right on track," we were looking at leaving the clinic with Bennett off a majority of his tube feed.

Unfortunately, this may not be the case.  At this point, one and a half weeks in, Bennett is on 15% of oral feeds.  While the goal is 75%, the team cautioned us that we would be hopeful to get him on 50% of oral feeds.

But what was disappointing was how far back Bennett's mechanical eating skills are behind.  He is currently eating with the skills of a 9 month old.  At this point, the Feeding Clinic staff is working with him on "clearing a spoon" (aka eating from a spoon in an efficient way that all of the food goes in the right place in the mouth) and drinking a significant amount of fluid (he drinks only 1 ounce at this point).  This will likely be the team's goal until he leaves in 2.5 weeks.

However, in order for Bennett to eat appropriately for his age, he still has to be introduced to new food variety, introduced to new food textures and taught how to chew correctly.  That means he's still quite a good way away from learning how to eat effectively and being able to eat 100% by mouth.

We weren't all that surprised that Bennett will need to continue speech therapy but we are surprised how far away we are from Bennett eating well.  So, it's a bit disappointing.  Maybe daunting is the word.

Knowing Bennett has future challenges ahead regarding his health and Cystic Fibrosis, we had really hoped to have helped him nip this issue in the bud.  But, it looks like we're in this for the long haul, maybe the long long haul.

We have alot of reasons to be hopeful.  Laura, the child psychologist here, said Bennett is extremely compliant so he has shown no behavior issues that are making his eating difficult.  And we will have the hospital has a huge resource once we go home to work with our current therapists.

We are so fortunate to have recognized these issues and jump starting his oral feedings in any way.  Our hope is that Bennett will be able to eat 50% of his foods orally by the time we go home.  It would be really fabulous if he could eat orally during the day and through the tube at night.

So, while we are disappointed, we are trying to keep our perspective to the present moment.  If we look into the future, we can feel overwhelmed.  It's better to just appreciate where we are in the moment.

So, thankful moment #22.) I am thankful for learning more about Bennett's feeding issues and being able learn how to address them.  We are incredibly blessed to be at one of the best places in the US for feeding issues such as this.  No matter how far along we get during our time here, I am simply thankful for all of the success we experience during this short period.

Pictures of Our Day: The Ronald McDonald House Courtyard

These are just some of the pictures from the Ronald McDonald House in Dallas.  The other day, we were able to spend a few hours there while Bennett was in therapy.  It was a beautiful day so we hung out in the courtyard/backyard of the Ronald McDonald House.

My big boys rocking.

Oliver and Mr. Fox.

The BBQ area in the courtyard.

The Labrinynth.

Rockers at the Ronald McDonald House.

24 May 2011

Hospital Excitement: Potential Tornadoes

At about 8:30PM tonight, we had a bit of excitement tonight at the hospital. Oliver and Brian had returned home to the Ronald McDonald House for the evening. Bennett had been just put to sleep a few minutes before I stepped out to use the hospital computer in the hall. All of the sudden I heard the tornado sirens going off.

After determining this sound was not an ambulance going to the Baylor Medical Center down the road, I got up from the computer and went looking for a nurse to find out what we should do.  Not seeing any nurses at the nurse station, I ran into the on-call doctor who had just come up on the floor to talk to the charge nurse about it.

Concerned that we might be in the path of a tornado, the nurses began going room to room to wake up patients and asking parents to bring their children into the hall.  Bennett hadn't fallen asleep yet so I picked him up with a blanket and rolled his IV pole (holding his feeding pump) outside to the hall and shut our hospital door behind me.

Children and parents began emerging from their rooms.  The children (all age 3 and under), now exposed again to the bright overhead lights, began waking up from their nightly "naps".  The children here who do not have parents who stay with them at night are cared for by their nurses.  My heart broke to think a child would have to go through this sort of chaotic moment without their parent or caregiver with them.  One little baby sits daily without a parent to hold her or care for her.  Who would throw their body over her should a tornado come through, I thought.  I would, my heart replied.

I texted Brian to make sure he and Oliver were safe at the Ronald McDonald House.  Turns out, they had been taken to the Ronald McDonald conference room where there were no windows.  All Ronald McDonald families ended up being crammed into this room for two hours (until the tornado warning in Dallas county was cancelled later that evening).

But at the hospital, before the nurses had a chance to move the children on ventilators to the hallway, the charge nurse reversed this decision stating Baylor Security had not determined this was necessary.  So, in a matter of a half an hour, children began disappearing from the hallway and put back in their rooms.  The cries of children being forced back into bed after being woken up from sleep filled the floor.  Poor kids.

I kept Bennett up about 45 minutes before finally relenting that we weren't likely to have any more sirens go off (although, the evening was filled with storms passing through) and it was wise to lay him back down again.  Fortunately, no tornado ever ended up running through Dallas and the floor became boring again after 9:30pm.

Thankful Moment #21: I am thankful for a hospital that is still standing.  My heart goes out to those in Joplin, Missouri who were in the hospital, like us, and without warning were in the path of a tornado.  I can imagine how scary that must have been.  It's so easy to feel safe inside a big hospital building like this.  But the reality is tornadoes do not discriminate.  I am thankful for safety.

Our Schedule

You'd think you'd be bored at the hospital all day if you're living here for a month but ironically that is not the case.  This is likely because I have two children who are with me most of the day and because we have family in town.  But I am surprised how fast the days go by.

I thought I'd list out Bennett's schedule to offer a perspective of what we do all day...
MORNING TIME: Bennett usually wakes up anywhere between 6AM and 8AM.  At home, he usually sleeps until 8AM but here, it is harder.  Nurses come in and out of our hospital room all night and in the early hours of the morning making it much harder to sleep in.  I usually get up when Bennett won't let me sleep any longer.  (He can see me in the room so he knows I'm there.  I usually get my shower and get dressed before taking him down from his crib.  Once we're both dressed, I'll open the door as a signal to the nurses we are ready for them to come in.

VITALS and WEIGH IN: Our nurse, who usually comes on duty around 7AM will come into our room to take Bennett's blood pressure and his temperature.  On Monday, Wednesday and Fridays the hospital tech will weigh Bennett in on his diaper.  This weigh-in is important for the team to know how the Feeding Therapy is working.

FEEDING THERAPY #1 (breakfast), 8:30AM:  At this time, Ebby, our speech therapist and "Feeder" arrives at our hospital door to pick Bennett up.  The nurse usually provides me his enzymes right before Ebby arrives.  I make sure Bennett has his favorite stuffed animal and is wearing a bib before he goes.  Bennett usually cries when Ebby takes him but that doesn't last long.  Feeding therapy takes 25 minutes.  While Bennett is gone, I eat breakfast (usually a nutrigrain bar or donut) since I can't eat in front of Bennett.  There is no cafeteria at this hospital so I have to find food on my own.

SPEECH THERAPY, 9:00AM: Ebby is not only Bennett's "Feeder" but his Speech Therapist.  So, she usually takes him to another room downstairs and works with him on specific speech therapy goals.  Ebby returns him to our hospital room at 9:30AM.

OCCUPATIONAL THERAPY, 9:30AM: Bennett's OT comes to pick him up from our hospital room. They go downstairs into the therapy room to work.

PLAYTIME, 10:00AM: We typically play in the room at this time.

FEEDING THERAPY #2 (lunch), 11:30AM: Ebby or another "feeder" arrives at our door to pick up Bennett.  The "feeder" brings Bennett back 30 minutes later.

NAP, 12PM: Bennett goes down for a nap around this time.  This is also the time when Brian, Oliver and I often grab lunch out and do our "adventures".  The nurses watch after him.  Bennett also gets a tube feeding during this time.

OUR LUNCH, 12:00PM:  This is when Brian, Oliver and I try to get lunch.  We will sometimes get free lunch at the Ronald McDonald House when we have time to drive over.  Lunch at the Ronald McDonald House is from 11:30-12:30.

FEEDING THERAPY #3 (snack), 2:30PM: Ebby or another "Feeder" picks up Bennett to eat.

PLAYTIME, 3:00PM: The boys like to play outside on the playground or hospital courtyard during this time.

FEEDING THERAPY #4 (dinner), 4:30PM:  This is an early dinner time but since the feeders are going from 4:30-6:30pm feeding dinner to the kids, this is what time he eats.  Again, a "Feeder" picks him up from the room and returns him 30 minutes later.

PLAYROOM, 5:30PM: The Playroom is open from 5:30-6:30pm and usually offers an organized activity for the kids.

OUR DINNER, 6:30PM: This is the time with Brian, Oliver and I usually eat dinner.  We try to eat leftovers from meals from days earlier since places to eat are scarce downtown and often difficult to get to.

VEST TIME/RETURNING TO RMH, 7:00PM: This is the time when we usually do Bennett's physiochest therapy (aka The Vest).  This is also the time when Oliver and Brian return home to get Oliver in the bed.

MEDICINES AND PJ TIME, 7:30PM: Thirty minutes before bedtime becomes a busy time.  The night nurse comes on shift and brings us his medicine.  I change Bennett into his PJs and get him ready for bed.

BEDTIME FOR BENNETT, 8:00PM: Bennett goes to sleep in a dark room at 8PM, usually without a fight.  He is hooked up to his tube feeding for the evening.  I often leave the room to allow him to fall asleep.  I usually slip back in the room 15-30 minutes later when I sit on my bed and watch TV quietly or work on the computer.

BEDTIME FOR MOM, 11:30PM: This is usually when I turn off my lights...if I can force myself to end my quiet time in order to rest up for a busy day tomorrow.

23 May 2011

Pictures of Our Day: Evening Play at the Hospital

These are pictures of the boys playing at the hospital.  In the evening, before bed but after dinner, the kids like to play in the hallway.  They just get too bored in the room.  So, last night I pulled out my camera to catch the boys in action.

The boys..."on the phone"...but not with each other, I don't think.

The boys' playground on our hospital floor.

The boys running in the halls.  Thank goodness this is a Children's Hospital where most of the nurses don't really care what kids do.

Bennett chews on a pen and carries his best friend with him.  Oliver runs and plays behind him.

Pushing the hospital stroller around...

...and back with Bennett inside.

Bennett loves Oliver pushing him around the floor.  They both just cackle at each other because they think this is so silly.  (This is Bennett's "Say Cheese" face.)  This stroller is technically a "therapy" stroller but the staff will sometimes use it for Bennett if he wants to go for a ride downstairs to his therapies.