Joshua's Journeys #14 G-tube

September 21st was the anniversary of Joshua's gastrostomy tube surgery, g-tube. HE also had a nissen fundoplication (Bethany loves that word!). In a sense it is a procedure to tighten the top part of the stomach so that Josh won't be able to regurgitate or aspirate any food. (So no throwing up!) Every surgery is a big deal, but to me this one wasn't as scary as the trach partly because I was already very used to seeing and working with people with g-tubes as a dietitian. An n-g (naso-gastic) tube is a short term solution, but for people that will need tube feedings longer term like Josh they require a more permanent placement like a g-tube. It is not only more comfortable, but also a whole lot more convenient. When Josh wasn't having a feeding he could be free of lines, and while getting a feeding it would go directly to his tummy and the only tubing in the way was the milk that was going directly to his tummy instead of annoying him by putting tubes up his nose and taping his face.

The surgery went well, and was rather quick (a few hours). We went through our same morning pre-op procedures of prayer and holding Josh as long as we could until it was time for the OR and time for us to camp out with Joey in our corner of the world in Peds. Josh came back from surgery with that same bloated, stoned looking face that we learned quite well and called "Post-op Josh". He was hooked up to the ventilator again just to allow him to breath without working, and he was weaned off of it within hours. We saw his g-tube site right away, and it wasn't long before he was warmed up and moving around. Surgery days were always very taxing, long, nervous waits, calling friends and family with updates, and being with Josh as much as we could. We learned quickly how to start, stop, connect, disconnect, clean, flush, and vent all of Josh's feedings. Between our assertiveness and want to care for Joshua in every aspect we could we were getting good at suctioning, changing trachs, and now in charge of his tube feedings. The nurses often commented on how they didn't have much of a job anymore!

Bowling for CHARGE

Bowling for CHARGE
On Saturday we had a very fun time Bowling for CHARGE! Crystal put together a fundraiser for the CHARGE Syndrome Foundation in honor of her daughter Eva, and in memory of Joshua and another CHARGE angel Ava. She put together a beautiful slide show of the three of them along with some info on CHARGE. There was a bake sale, plenty of pizza and pop, a raffle (which we actually won some pretty cool stuff), and of course bowling! It was a lot of fun. Crystal definitely put a lot of work into the whole day and everyone seemed to have fun and have a smile on their face.

We were able to see a couple other CHARGE families from the area that we hadn't seen since the Charge for CHARGE 5K so it was nice to catch up. Eva was there in her pretty pink dress, and of course cast to match (another week and a half to go!). It was great playing with her- Joey enjoyed giving her some of his toys and at the end of the day was trying to push her in her wagon to head out.

Nonna, Grandpa, Grandma, Auntie Pam, Auntie Trisha, Auntie Tiffany, and Brian were all there to participate in the festivities. Thank you Crystal for including Josh in the day, the whole day was a huge success. You did a great job! Of course it never fails, our camera battery died pretty quickly once we got there, so you'll have to visit Eva's blog to see more pictures (Crystal's pictures are always better anyways). And no, Joey is not actually holding a blue bowling ball in some of these pictures, he has a balloon! But he did have fun with daddy pushing a bowling ball down the lane.

Last Week's Update

Tot Rock
The past two Tuesdays Joey has been having fun at Tot Rock. It is a class we are taking at the park district where Joey gets to sing, dance, and play with mommy and other kids near his age. He is really enjoying himself. I keep bringing the camera, but forget to snap a picture. One of these weeks I will!

Best Wagons rides are at CDH!
The ER to be more specific! Joey had an intimate meeting with the banister Thursday evening just before bedtime. His point of contact made a huge egg sized bump and a little cut on his forehead. Being about a half an hour before bed we didn't want to let him go to sleep without knowing he was ok, so we decided to take a fun filled trip to the ER to check it all out. Joey was too excited to even think about bed time, and enjoyed being pulled around the halls in the wagon. Of course he was fine, we just needed to wake him every hour for the first 6 hours of sleep which he pretty much did on his own since he likes to sleep on his tummy and thus his forehead too! Since I'm posting a few days later, he is still doing fine, the lump is practically gone, he just has a small little scrape and the bruise is more greenish yellow now.

Please pray...

Please join us in prayer for the sweet life of Moriah Nelson and her amazing, strong, resilient parents Victoria and Justin. While we have never met in person, we have been brought together through the CHARGE community. I have seen so many similarities in our lives. Victoria and Justin's relationship reminds me so much of Phil and I- the way the two look, how they seem to deal with the stress of having a chronic child, and their determination to keep life as normal as they can. However, everyone has a limit. They have been stretched to that limit for way too long. We follow their blog daily, and our hearts ache for them as we recall similar events we had with Josh, and our hearts celebrate every moment they share as baby, daughter, mother, father, and family.

Please take a moment to look at their blog: momentswithmoriah.blogspot.com and see what an amazing family they are and the journey that have been on. Their most recent post hit me in a spot that I can't shake off and continue with my day. They are desperate right now. Moriah has been in the hospital for the past 10 months, always anticipating to go home but then sidelined with some infection that no one can seem to figure out. It is a most frustrating place to be. Josh had a similar situation towards the end of his time on earth where no one knew why his labs were out of whack, and outside of that he was absolutely fine. We felt like he was being held hostage in the hospital. On top of it, bills continued to pile up from his NICU stay, surgeries, and hospitalizations. Josh was well over a million dollar baby, and Moriah I'm sure has more than tripled that now. Hearing advice of people say "Don't worry about finances. Don't worry about work. Don't worry about next month, next week or next year. Enjoy every moment you have and be thankful. You guys are so strong, I could never do that. That's just the way he is." The comments from those who have never been on that other side are endless and exhausting.

All we are asking is deep, concentrated prayer for Moriah, Victoria, and Justin. Please join us...take a look at their blog and pray whatever is in your heart for these most wonderful people.

I heard this song one time driving down to Children's to be with Joshua and feel it is just as perfect for Victoria. My heart aches for this wonderful mother.

Mark Schultz - He's My Son

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Can You hear me?
Can You see him?
Please don't leave him
He's my son

A Chance Meeting (Joshua's Journeys #13)

This morning Joey and I went to Cosley Zoo, a small zoo in Wheaton. The weather was perfect so we thought a morning out would be great. While we were there we saw many mom's, grandparents, dad'd, and their children among the animals. We were one of the first ones there so we could walk around before nap time. We saw a woman with a double stroller, and didn't think much about it. Many people have double strollers when they have two kids, not just twins. We passed each other with a little hello and that was it. Later on, I noticed her son walking around and babbling, the little girl inside the stroller. After running into each other a few more times I noticed that the little girl had oxygen on. The mom eventually pulled out the little girl and put her on the ground to let her walk a little. She looked a little more delayed than her brother, and definitely shorter and thinner. However, I knew those skinny, skinny legs. I knew immediately that those two must be twins, even if he was almost a whole head taller than her.
After walking around a bit more we ran into them again and this time the mom was holding the girl while her son was running off. She was trying not to trip on the tubing and trying to keep her son in eyesight. I looked over and told her he was fine. I didn't want to intrude and pick him up or ask her for help. She seemed a little embarrassed and overwhelmed, but I knew nothing she wasn't used to. I remembered many times with Josh I felt like people were always thinking I was a basket case or a complete mess trying to take care of two kids, one having so many special needs and equipment. I didn't want to say anything to this woman because I didn't want her to think she was sticking out, and truly her son was nowhere near as unruly as some of the other kids running around. I was however thinking about Josh and admiring this woman for having her daughter out, not being scared or tied down by equipment. I was so glad that with Josh we allowed him to live a normal life. We took him so many different places. I never wanted him to be left at home or have us all staying in because of a disability. Yes, we had our trying times, our looks from strangers, and wondered sometimes ourselves what we were doing, but we weren't going to let circumstances get in the way of life.

We saw the woman walking with her daughter and son once again and he son started to head off as she was stumbling over tubing again whisking her daughter back into her arms. She smiled at me and said "My two tornadoes!" I decided to say something. I told her that I thought her daughter was doing and awesome job with walking, and told the mom that I was so glad to see her out with both of her children and not letting equipment hold her back. And then I asked her if her kids were twins. With a practically jaw dropping stare she said yes and asked how I knew when most thought that they were a good year or so apart. I told her that Joey is a twin and his brother had those same skinny legs, and although born a little bit taller (one inch) and a little bit heavier (3 ounces) he struggled to keep up with Joey. With a relieved look she said "It takes one mom like us to know one!" She talked about how when they were born people new they were twins, but then the boy got bigger and the girl didn't grow as quickly. Soon people thought that they were a year apart, and now she said most think a couple years difference. Her daughter has heart and respiratory problems. She was in the NICU at Edward for 3 weeks, and has had 3 heart surgeries. They are looking to another one soon. I told her a little bit about Joshua as well. She mentioned to me that when her kids get a little bit older she would like to go into nursing because of all of this. We then parted ways, her son was ready to move on and Joey was looking for another animal to point at.

Just before leaving we saw her again and she asked me how old Joey was. I told her, and then also mentioned that baby number 3 would be 17 months apart (give or take) and I would probably be in the same place I was with Josh and Joey, only Joey will be the small guy this time. If baby number 3 is a normal size I'm sure she will quickly catch up to Joey at least in their early years. I imagine at some point people will wonder if they are twins, and possibly later if she is older. Of course this could be totally false, but I just think it will be easy for this baby to surpass a preemie who is still only in the 3rd percentile for weight and 10th for height! Anyways, in talking this second time she asked about Josh's ears again and mentioned that her daughter was born with an ear that was quite pointy and she had an encounter with some kids one day asking what was wrong with her ears. She said that she was so upset, and later her husband told her she should've told them she was an elf. I recalled our very first appointment outside of the NICU and the pediatrician. It was at the endocrinolist, and there were two kids one looking about junior high age, and the other a few years younger. Seeing a baby in a stroller the older girl had come by to take a look at Josh. Once she saw him she gasped and she looked up at me. Seeing me stare back at her she quickly walked away. Her younger brother came up to see Josh shortly afterwards, and with the innocence of a little kid looked at Josh and asked "What's wrong with him?" The sister came over to try and grab her brother before she heard me explaining how the trach helps him breath, and his ears are the way they are because he was born that way. It is amazing the things that kids say, but even more amazing is the glares and comments from adults. I won't go into the outrageous things that people have said to me and Josh, but it was definitely a life lesson in sociology.

The woman and I wrapped up our conversation once again as we were both getting ready to head home. I told her I would be thinking of her and her daughter with the upcoming surgery. She later said that they were seeking a second opinion on something because of discrepancies with the cardiologist and pulmonologist. We both kinda smiled and laughed and commented on how involved you have to be in advocating for your child. She told me she was very glad that I did say something to her and that we were able to meet.

Once you have loved Josh, or a child like him, there is no turning back. You feel some gravitational pull towards children with special needs. When I saw that little girl with her skinny legs, taped up face holding the oxygen in her nose, I wanted to scoop her up. I couldn't tell you one thing about any of the other kids there, but I could draw a picture (if I were an artist of any sort) of every detail on her beautiful face. I hope her 4th surgery goes well, if it is required, and I pray for her and her family.

Touch a Truck and Block Party

Towards the end of the week last week we had Aspen over for a couple of days. Joey really enjoyed playing with her. Java has learned to get up and walk away when she's had enough, but poor Aspen just layed there while Joey gave her hugs and kisses. Joey wanted to help feed Java and Aspen while mommy was making lunch, so after a boom this is what we found...


Saturday we went out by Grandma's house to the park down the block from her. They were having a Touch-A-Truck event going on where Andrew and Joey were able to see, touch, honk, and climb around on school buses, tractors, police cars, fire trucks, and there was even a helicopter there too! Joey seemed to like the fire truck the most. The wagon ride with Andrew was a lot of fun too, they both had their construction hats on. (And I had to take a picture of Andrew eating my favorite- PB&J!)


That evening Joey saw another firetruck at our block party. Our neighbors next door made sure Joey got a turn in the truck and helped him with the hats, and showing him around the truck. They are so nice, and always including Joey when they can. The firemen broke out there hoses for a while too, which Joey enjoyed watching and Gigi got soaked!


Sunday was our friend Jarod's 10th birthday party. Sorry no pictures of that yet, but Joey had a lot of fun playing with Jarod's old trucks, sidewalk chalk, balls, and clinging to John!

Joshua's Journeys #12- Vent free and more

On Sept. 15, 2008 Josh became vent free! After his trach surgery he still had the ventilator hooked up to his trach to help him acclimate to his new airway. Josh did well and was weaned quickly. We sang "I've Got No Strings to Hold Me Down" a la Pinocchio. It was so nice to be able to pick him up whenever we wanted without worrying about the vent or other wires in our way. Josh was even ready to start working with a pacifier now to learn how to suck! Josh did have a humidifier (the blue thing in pictures) that would help moisten his airway while he was resting, but for the most part he just used the humi-vents/noses so he was very mobile. He seemed to like holding onto it, and we put a little puppy wrist rattle on there for him too. Eventually at home we learned that Josh did much better without the trach collar (humidifier) on him, as long as we had 3 or 4 humidifiers going at night in his room. It felt like a jungle in there!



That night however, became a very scary one for us. Josh had coded in the middle of the night- around 4am. He needed CPR and was resuscitated successfully. The reason for his event we still don't know. It was thought that he possibly had a reaction to one of the anesthesia medications, but an anesthesiologist that we got to know a little better had later told us he did not think that was the case at all. Another thought was that he had a seizure, something we were wondering if he would develop as time went on. He had been seen by a neurologist (not to be confused with neurosurgeon whom he will see soon as well) and all we were told was that it was possible that he could have a seizure and we would never know his likelihood until he had one. After this scary event in the wee hours of the morning, Josh had a brain study done for 24 hours to try and detect any sort of seizure activity since in babies it is really hard to tell if they are having a seizure. Sometimes babies will convulse, but most often it will be one limb- a hand for instance that will tremble and can easily go unnoticed. In addition, babies can have staring seizures where they focus on one point for a long time. So in order to determine if Josh had a seizure we did the brain study. The poor little guy had a mummy wrap on his head...which he would soon get used to having stuff like that once his shunt surgery (next month!). The results of the study: no seizure activity! So the scary night became a mystery as to why it happened, but it also helped strengthen a lot of communication between people in the NICU, their understanding of how involved we are and wanted to continue to be, and how much we all were fighting for Joshua.


The following day, Sept. 17, we learned from one of the NICU docs that Joshua's testicle had dropped! One less surgery for us to worry about! It is another common thing for CHARGE babies to have undescended testicles (one part of the "G" in CHARGE)that later require a procedure to drop them, but thankfully one less thing to check off our list!

The next big thing schedule for Josh would be Sept. 21 when he had his g-tube placed (yes, surgery!). Right now Josh has been getting his breastmilk through a naso-gastric tube, it is a little tube that goes into the nose and feeds down into his stomach. It is the short term solution, which is why many others that are in the hospital may have had a n-g tube, but it is easy to pull out (thus the tape on some pictures) and much more comfortable and convenient to have a g-tube for those that will need it longer term. As I mentioned before, Joey also had an n-g tube the first few days of life while he was trying to figure out how to suck and swallow. Josh will take a bit longer to learn this skill, so the g-tube surgery was scheduled (again!)for Sept. 21. Since Josh didn't have the ventilator anymore, or anything obstructing his mouth, he was ready to start working with a pacifier to learn how to suck. At a later time I will post about speech therapy (probably many posts!). I don't know if part of it is the dietitian in me, but I LOVED working with Josh on his eating, sucking, all the speech therapy goals we had.