Since We Have Been Home...

Well like Trey we were all super excited to be back home after a long trip away. There is nothing like sleeping in your own bed. Trey felt like it was Christmas because he was rediscovering all his toys he had missed.

Behavior was quite an issue when Trey initially got home from the hospital. Rightly so and to be expected. Being in the comfort of his own home helped get things  back to normal for Mr. Trey.

Right when we got discharged from the hospital Trey was super motivated about food and drinking. He talked about food nonstop. He would tell us all the things he wanted to try. We had to explain to Trey that the surgery affects his ability to swallow the first few weeks after. There are certain foods he has to avoid that could hurt him and slow healing (ex. hard, crunchy, sharp foods for sure). Trey has done incredibly well with understanding that there are some limitations right now. He usually asks "The doctors say I can't have that because of my surgery?"

Initially I was a little overwhelmed myself because I thought oh my goodness everything Trey really loves he can't have. But it has encouraged him to try some new textures he in the past totally would refuse. So now that we are almost 6 weeks post-op he can have things with slightly harder textures. Example, soft breads, soft cooked noodles, finely ground meat, cereal that is slightly soggy, and his french fries but only the soft parts.

As we reached his caloric and volume goal for his tube feedings his appetite and drive to eat has tapered off quite a bit. But we have to beef him up right now. He has lost quite a bit of weight and is so tiny. Once we reach a safer weight gain we can back off a little bit with his tube feedings to get that appetite drive going again.

But we are super excited to report that even though Trey isn't taking in large volumes of food he definitely is wanting to experiment with a lot of foods at the present time.
Here are a few things that he is enjoying...

soft waffles with blueberry syrup
Gerber puffs
cold cereal with rice milk
strawberry smoothie
soft english muffins
sliced thing turkey lunch meat
all kinds of soft breads
any kind of potatoes
some pureed fruits
almond milk ice cream

This probably seems like a limited list to most but huge to us considering before surgery he would barely eat or drink anything.

Trey has enjoyed helping prepare some of his meals and snacks. He loves to ask tons of questions as we go. We practice smelling different ingredients or touching different textures.

The other day while we were cooking together I had Noah on my back in a carrier. Yes Noah insists he be involved in the activities too. Trey decided to carry one of his stuffed animals in his backpack that holds his tube feeding. Too cute.

Of course before surgery Curtis and I were totally apprehensive about making this choice for Trey. But we have no regrets with our decision. Trey's refluxing episodes have decreased GREATLY. It is amazing. If he does have any it is usually during a tube feeding. We can tell there is a huge difference in his comfort level. We are so excited to see with time as Trey begins to experience less discomfort how much his eating will pick up even more. The sky is the limit for this little boy. He deserves to feel safe eating and we hope he grows to enjoy it someday.

 

Mr. Noah

Well since I completely missed posting updates when Noah was 5 & 6 months I decided to make a little video of how much the little guy has grown these last couple of months.

CLICK ON LINK BELOW TO SEE VIDEO...

NOah 5, 6, 7, months pics

But here is an update on what the little rascal is up to these days.

Sleep

I am sad to report that Noah is still the worst sleeper ever. The most he will sleep at a time is 3 hours. Yes that is right 3 hours. We have finally transitioned him to his own room. We purchased one of those video baby monitors. We absolutely love it. Totally worth every penny.

Between Noah's frequent night time awakenings and doing Trey's tube feedings through the night I am one exhausted mama these days. I feel so bad because some days my patience is at an all time low. But I still have faith that in time sleep will get better for Noah. According to my mom I am receiving lovely payback. I guess I wasn't a great sleeper either. Oops.

Eat

The little guy still loves to eat. He loves to drink out of a cup. We have started finger foods. Noah does 3 meals a day and still breastfeeding or taking breast milk from a bottle. He always wants to help feed himself so we usually give him some kind of utensil or chewing toy to occupy those busy little hands of his. Can you guess Lily's new favorite spot in the house? Yes, that would be under Noah's highchair. He is a very messy eater. I should just strip him down to a diaper when I feed him.

Verbal

Noah is Mr. Chatter box these days. It's very rare if you don't hear his little voice. He is saying ma-ma-ma, da-da-da, and ba-ba-ba quite often. When he gets excited he loves to scream or squeal in delight. This is usually for big brother Trey. Motor boat noises are still a favorite too. He can't stand being alone and is very vocal about that also. Between Noah discovering his voice and Trey's endless questions there is rarely a silent moment in the Allen household.

Development/Play

ACTIVE-ACTIVE-ACTIVE is the best word to describe Noah. He hates to sit still. During a bottle or diaper change this guy is always moving. I have to say he is exhausting.

He is starting to really try and scoot. And if he can't get to what he wants he will roll everywhere. I don't even want to imagine what Noah will be like when he really is moving around. Oh gosh I get tired just thinking about it.

This is one very determined little boy. If he sees something he wants that is it. He especially loves to go after whatever Trey has. I can't believe the fighting has already begun. Poor big brother Trey has no idea that this is only the beginning. I already hear "NO baby Noah that is mine" in a very stern and serious voice.

Noah has 2 teeth that are beginning to come in. They are right there ready to make their pearly appearance any day now. I hope he won't be a biter.

Dislikes

sleep
being alone
diaper changes
sitting still
not a big fan of fruit

Loves                                                                            

sticking out his tongue                                             
peek-a-boo                                                                       
books                                                                             
music                                                                               
anything Trey                                                                  
being outside
vegetables
hearing his own voice
wrestling

I sure missed him when I was in the hospital with Trey. It was difficult trying to be a mama in 2 places at once. He stayed at my parents house and did pretty well while I was gone. I tried to go home and see him as much as I could. It was wonderful to be reunited with him.

There is never a dull moment with Mr. Noah. He is so much fun and growing more and more each day. I just can't believe how fast time is going with this little guy. Don't you just want to squeeze him??

 

 

Surgery Update

Well my plans to update the blog after Trey's surgery totally went out the window. So here goes a long overdue progress report about our brave little boy...

My dad came and picked up the boys and I on Sept. 19th so we could head up to Tacoma. I swear the car looked like we were going to be moving in. But we kind of were (3 weeks in Tacoma).

As we were leading up to the surgery date Curtis and I were going round and round about the best way to prepare and talk about the surgery with Trey. I didn't know when to really bring up the subject because at times Trey can really fixate on certain things especially if he is worried. Poor guy gets this lovely trait from me. I gave the amazing Child Life a call at Mary Bridge for some ideas. We decided that the day before surgery we would do a pre-surgery tour. Trey was able to see where he would go before surgery, what his room might look like afterwards and some medical play with equipment. This went really well and I think was a good choice for Trey.

Trey desperately needed a haircut so we did that before the pre-surgery tour. No pictures from that adventure because Trey was having a total meltdown. But afterwards I thought he would enjoy going to Build a Bear and picking out a special friend to bring with him the next day.

 

Again no pictures with the end result here either because another meltdown went into effect. I think the anticipation for the next day events was setting in. But we did chose a bear with hospital scrubs so he could be ready for surgery and of course a WSU outfit for later.

Trey was the first surgery case for our surgeon that day which meant an early 6am check in time. Curtis had a huge recruit in town that weekend but flew in that morning to be with Trey before and when he went off to surgery. He was only able to stay a few hours but was able to return 2 days later and stayed with Trey and I for several days.

As you can imagine all of our nerves where on overdrive before they took Trey back to the OR. I think one of the HARDEST things Curtis and I both have ever had to do was kiss our little boy goodbye before we had to separate from him. We weren't able to go back to the OR and be with him while he was being put under anesthesia. Trey was given some medicine ahead of time to help him relax but unfortunately that didn't make the parting ways any less excruciating. I sure wish they dosed parents with medication beforehand too. My girlfriend and I were teasing about how the hospital should have a bar for parents to go wait in.

The surgery ended up taking around 3 hours to complete. Dr. Acierno said that the Nissen fundoplication went very well. She did have to revise a new g-tube for Mr. Trey. The one he currently had wasn't in the best position and that was probably the cause of all the excess granulation tissue. So Dr Acierno closed his old g-tube site after placing the new one. During surgery they also discovered that Trey had an epigastic hernia. So they repaired that while they were in there too.

Trey came out of surgery with 6 incisions on his little belly. He had to have a salem sump tube in his nose for several days which made life absolutely miserable for him. The tube was pretty large and very thick. Trey was so uncomfortable he refused to talk or really move his head while the tube stayed in.

The purpose of the dual flow tube was to prevent accumulation of gastric secretions and air in his stomach. Trey ended up developing a postoperative or paralytic ileus. This is a disruption of the normal movement in the GI tract. Basically there is an intestinal paralysis which prevents movement of food through the intestinal tract. So if they had tried to start Trey's tube feeding formula during this time it would have led to an intestinal blockage. An ileus is quite a common side effect after stomach surgery. But definitely a bummer because this meant the NG tube had stay in his nose quite a bit longer to help remove his stomach contents since his body wasn't doing it on its own.

We have known from the beginning that Trey has always been on his own timeline and that the ileus would resolve eventually which it did. This hiccup definitely was the main reason our stay ended up being 9 days long. Yes, that is right 9 DAYS!! Once the ileus started to clear his surgeon took the conservative route with restarting Trey on his tube feeding formula. Which in the long run is better for Trey. Trey had to tolerate a certain volume and calorie count in his formula in order for him to safely go home hydration wise. We had to stop advancing some of his tube feedings several times because he wasn't tolerating them.

So you can imagine after several days of being in the hospital, cabin fever set in. We did have a pretty decent view from our very small room.

We took several car rides around the unit.

There were many trips to the gift shop.

Trey had several surprises that were delivered to his room that brightened his day.

As expected Trey had several really difficult days. He was so done with the whole hospital life towards the end of our stay.

Every blood pressure check or listening to his stomach became quite the struggle. We tried to make things interesting. Like Trey opening his own store.

We found a cute little cash register in the playroom. His nurses or respiratory therapists would come by and purchase things with play money.

We had some fun visitors too.

Auntie Cat

Even though our stay was longer than expected I can't stress how much we appreciated the care we received. We had wonderful nurses that took such good care of us. The Child Life staff was so supportive during all of Trey's times where he was struggling with procedures or boredom. I wish I would have taken more pictures of the amazing staff who helped us through our stay.

Trey with nurse Julie

Trey with Miss Jade. Small world, she went to middle & high school with Curtis.

Our very special nurse Julie who admitted us to the floor after surgery &discharged us home.

I wish I had a better picture of Trey with his amazing surgeon, Dr. Acierno and Nurse practitioner, Maria.

As a parent your job is to protect your child from harm. It hurts your soul to see them ever feel any pain. I look at Trey and thank God for how resilient his spirit is. He is one brave and strong little boy. I can't express how much we love him. We are so excited for what the future holds for Mr. Trey.

P.S. If I can get my act together I plan to post how Trey is doing since we have been home, how much Noah has grown and what we have been up to before surgery.

Obon Festival

At the beginning of our trip to Tacoma, I took the boys for their first time to an Obon festival. This is a century old Japanese custom that takes place every year throughout Washington and many other regions. It is considered a happy time when members of the Japanese community dance to honor family members who have died. This type of dancing is called Bon-Odori in Japanese.

This is an annual event I looked forward to every year as a child. Anyone can join in the dancing which consists of everyone going around in a large circle on blocked off streets. Some of the dances involve using fans or wooden clappers. Majority of the regulars usually dress in traditional kimonos. Here was one of my favorites I saw that evening...

 

I was trying to find some old pictures when I was younger but I think my parents have most of them. I did find a few...

My little brother and I.

Another one of me with the cutest girls ever when I was visiting from college one summer.
 

One of my dearest friends Tracy, who I use to work with was their with her family. During my high school and college years I use to babysit her boys. I couldn't believe how old they have gotten. Tracy is a nurse practitioner and she wrote my letter of recommendation for nursing school. She also has been a great support with all of Trey's health struggles. She has played a special role in my life and it was wonderful to see her.

Tracy tried to get Mr. Shy Trey out there to participate in the dancing. Trey wouldn't move from his spot so they just danced in place....

Another special treat during the festival is Taiko drumming. (Taiko means "drum" in Japanese) A group usually puts on several performances throughout the evening.

Tracy and her family are part of the Tacoma Taiko drumming group. During one of their performances she was sweet enough to come grab Trey and he got to participate. He was so excited.

Here is a some video...

 

 When we got home that night my dad found Trey some Taiko sticks and he started pretending to drum on a box. It was so cute. He was a drumming machine. It was amazing how Trey really picked up a lot of the moves.

Here are a few more pictures from the evening...

Mr. Noah tuckered out from the heat that day.

My dearest friend Cat joined us with her niece's and cousin.

Trey taking in all the action.

Miss Jacqueline posing for the camera.

It was so fun to share with my boys a tradition I loved throughout my childhood.

 

jays 21st

While we were in Tacoma my little brother turned the big 21. I can't believe it. It seems like yesterday he was such a little squirt. Now he has turned into this amazing young man. A young man who my kids absolutely adore. A young man who is ALWAYS there for his sister and brother in-law. A young man who is making his parents proud at college. A young man who has become one of my closest friends.

My parent's had a huge birthday party for him while we were in town. It was so much fun. Everyone got to meet little Noah and all the great grandchildren were together for the first time. So of course that meant endless amounts of pictures. Here is a video from such a wonderful day with family and friends.

CLICK ON THE LINK BELOW...

jays 21st

Update Long Over Due

Wow over a month has gone by where I haven't done a blog post. We have had a quite a busy August. I swear I am never going to get caught up with all the pictures I would like to share. Curtis left at the beginning of August with the Cougs for a 16 day basketball tour in Australia. They traveled to various cities playing against a number of professional basketball teams. He had a wonderful experience down under. The boys and I would have loved to join him but after our short family trip to Spokane we knew that was totally out of the question.

The boys and I headed to Tacoma while he was gone. Trey had all of his speciality doctor appointments. All these appointments kept us quite busy but we did have some fun while we were up there (blog posts to follow).

I will try and make this post as short as I can... Trey was scheduled to have a repeat MRI at Children's to make sure his Chiari 1 Malformation has continued to stay stabilized. Which it has, thank goodness. He was sedated for the procedure. This of course is never fun. We met with our amazing neurosurgeon afterwards. We were glad to know that Trey doesn't have to have another MRI for 2 years unless symptoms of the Chiari start surfacing.

Trey also had an appointment with his neurologist. An uneventful visit. Trey will continue on his seizure medication and follow up in 6 months. We are happy to report no seizure activity.

Before our scheduled clinic appointment with Trey's GI specialist he was scheduled to have a procedure with him. Around Trey's G-tube there has been this excessive growth of granulation tissue. This is a normal response for the body in an attempt to heal a wound and in this case Trey's body response to protect where a foreign object (g-tube) now is. Some kids experience more granulation tissue than others. I can usually treat the excess tissue growth myself but unfortunately the tissue has become so fibrous it is almost become a keloid type scar. Keloid is an overgrowth of granulation tissue at the site of a healed skin injury. They can be firm, rubbery lesions or shiny fibrous nodules.

So the plan was to inject that fibrous tissues with a medication called Kenalog to hopefully reduce the scar tissue. Trey was sedated for the procedure because the injections are pretty painful.

Such a brave little boy. Getting his vitals before the procedure.

When the doctor went in he found that the scar tissue goes all the way through the tract where the tube is. He said the injections weren't very successful because the tissue wouldn't absorb the medication very well.

He also performed an endoscopy (test that examines the inside of gastrointestinal tract). While doing this he noticed that Trey had some tissue changes (inflammation) in his esophagus area. Trey is already being treated with the strongest form of medication to treat the acidity of his reflux. But in the last couple of months his reflux symptoms has progressively gotten worse. Trey constantly is turning his head to the side or grabbing his throat during the day or even when he is not getting fed through his tube. This is how we can usually tell when he is having a reflux episode. It has also gotten to the point where Trey will barely eat or drink anything these days.

So Dr. Pickens decided to have Trey undergo a 24hr pH probe study. This test uses a probe/tube that is placed in the esophagus (this connects the mouth to the stomach). The study measures the amount and seriousness of acid juices that may be backing up into his esophagus.

Unfortunately the NG had to go down Trey's nose and stay there for a 24hr period. The probe is connected to a small monitor that records the acid levels and how far Trey's reflux comes up. Dr. Pickens said this is the best way to give him detailed information that he can't get from physically examining Trey.

Trey had a similar size tube that stayed in his nose for about 4 months when he was 1. He did an amazing job with it during that time. But I was super anxious this time around. He is such a little person now. So aware of his surroundings and curious about everything. But as always our brave little boy did pretty well with the tube once he got used to it. We had a rough start at the beginning due to vomiting episodes related to the sedation medication they used to help place the tube. But he didn't try to pull the tube out once he was oriented.

Grammy helping with some great distractions

Trey's tube was connected to this monitor.

One of us had to press button if...

1. He went from lying to standing position.
2. Being tube fed or attempting to eat.
3. Giving reflux medication.
4. If we saw the head tucking or grabbing his throat during his reflux episodes.

So this meant Trey had a shadow for 24hrs. I was aware his reflux was progressively getting worse. But when your sole purpose for the day is to only watch for those symptoms it was amazing what we saw. I had no idea he was doing the head tucking ALL the time. Of course I felt terrible.

Dr. Pickens called us the next day with the alarming results. Trey's acidity levels when he refluxed were within normal limits-which we expected. But the amount of times he refluxed and how far the gastric juice would come up was severe. We pressed the button for head tucking (Trey's physical sign he displays when refluxing) 200 times in a 24hr period. Out of those 200 times 150 of those times correlated 100% with reflux. So that day Trey experienced reflux 150 times and during those episodes the gastric juices came all the way up.

So Dr. Pickens referred us to an amazing pediatric surgeon at Mary Bridge. She reviewed Trey's history in detail and went over Trey's pH probe study in depth. Curtis and I were able to sit down and meet with her. She said without a doubt Trey needs surgery. So after her very thorough explanations and question and answer time with us (which we greatly appreciated) we agreed that this is the best thing for Trey's quality of life.

So towards the end of this month Trey will undergo a Nissen Fundoplication. This is a surgical procedure that will hopefully correct his reflux by creating a better valve mechanism at the bottom of his esophagus. The goal is to prevent stomach contents from returning to the esophagus. During the surgery the upper portion of the stomach is wrapped around the lower portion of the esophagus.

This tightens the outlet of the esophagus as it empties into the stomach. After surgery, food and fluids can pass into the stomach but are prevented from returning to the esophagus and causing reflux symptoms. This will also allow the esophagus to heal.

Trey will have the surgery done laproscopically which will hopefully create less pain after because there won't be a large incision that has to heal. The surgeon said that the surgery will take about 2-3 hours. Since Trey's current g-tube is having so many problems the surgeon thinks she will also have to revise a whole new site. So this may cause the surgery to go a little longer. But she won't know until she is in the operating room. Trey will probably have to stay in the hospital around 5 days.

Obviously our first question was will the surgery help Trey with his eating struggles. She said there is not 100% guarantee that the surgery will fix Trey's eating issues. But she does believe the reflux is the majority of the problem. She talked about how Trey is developmentally appropriate in all other areas except feeding. So kids with similar struggles usually start picking up their enjoyment of eating once they head to school. When Trey's g-tube was initially placed they told us the average age children get their tubes removed is around the age of 5.

We do know after the pH study that we have to do something to improve Trey's quality of life. We know his eating can't get any worse at this point. But of course we totally dread thinking about our little Trey-Trey having to go through one more procedure.

I will do my best to post how things are going during our stay in the hospital. We are again trusting that God has everything perfectly planned out for our little man.

Pictures from our Tacoma visit still to come....