Wednesday, July 2, 2014

Still Here

365 days...one whole year.

That's how long it has been since I sat down to write here.

In that time we had new babies born in our extended family, we lost family members we love. We started a new school year. We had a grand total of 4 hospital admissions last summer between June and September.

And on that last admission on September 13th, we darn near lost our boy.

He went into cardiac arrest while we were admitted into ICU for hyperkalemia, so I guess if it had to happen that was the best place for it to happen. The hospital team was amazing and jumped in and did everything they had to do to help him.

He was in Joe's arms smiling and flirting with nurses one minute, and in v-tach the next with people rushing into his room. They were so focused on treating him that no one realized we were still in the room watching their every move, crying hysterically.

After what seemed like forever, the doctor who had been treating him that shift came and saw us and had us step out of the room and Matthew was put into a medically induced coma for three days.

We never got a reason for what happened, every medical test done during the two weeks were in ICU and special care came back negative or normal. The ICU staff began calling Matthew the "International Man of Mystery." The closest thing we were able to come up with was that it was a side effect of his being on the Ketogenic Diet. So we stopped doing the diet which had kept him seizure free for almost a year and a half at that point, and his myoclonic episodes came back almost immediately.

Seeing what happened to my baby, and running through all the "what ifs" really messed with me afterwards. I began having panic attacks more frequently, I didn't want to let Matthew out of my sight for school, and I began even more vigilant and was afraid to sleep at night for fear it would happen again. Helicopter Mamas had nothing on me.

It has taken this long to be able to put this behind us, somewhat. I wasn't able to write out the words and wasn't even sure if I should have continued the blog. I missed the friends I made here, I missed the sense of community of people who "get it" when it comes to our kind of extreme parenting.

I hope we haven't stayed away too long, that you will come back and join us for the ride.
We were lucky, so darn lucky. Our boy is still here.

 
 

Thursday, July 4, 2013

And We're Back...

Just when we thought we were in the clear to unpack our hospital bags and settle into our new routine with the g-tube and pump, Matthew decided to throw us a new curve ball...

He pulled out his own g-tube.

Yesterday morning I hooked him up for his morning feeding and he began screaming hysterically. I paused the feed, vented him, gave him gas drops and it seemed to do the trick. Until I restarted the feed, then the tears started all over again.

We had an appointment to see his new gastroenterologist to follow up on the Nissen, g-tube placement and to see how he was doing on erythromycin for gastroparesis. I called and rescheduled because of his behavior wouldn't let me travel with him safely due to possible seizures.

I continued getting him ready to leave for our now later appointment and started to clean his g-tube site and change his gauze when I saw this:




I may be a newbie to this whole feeding tube thing, but I do know enough to know that it shouldn't look like that.

I called the nurse back to see whether or not to bring him in or go to the ER.  She advised to stop feeds and come in so the doctor could assess and then send us to the ER.  As soon as I showed the doctor the picture and he saw that the tube itself was not able to be manipulated, he sent us over to the radiology department at the hospital and had the pediatric surgery department that did Matt's initial surgery meet us there.

Radiology results were inconclusive, but when dye was injected into the feeding tube Matt began to scream again and his abdomen began to swell again. The surgeon consulted with the gastro team again and decided the next step would be a sedated endoscopy with both teams present to fix anything they found.

The procedure took about an hour, most of it involving sedating Matt. Sure enough, the endoscopy showed that Matt had pulled his tube hard enough to disconnect it. The surgeon jumped in to take out the bad tube and lucky for us, he was able to place a new tube in the same site as the previous tube with no further surgery needed. Thank God we caught it early, it could have turned into peritonitis and been fatal.

So, that all happened Monday afternoon and night. We have spent the past three days getting his feed schedule back to normal, treating pain from the procedure, and fighting off a tube site infection with antibiotics. With any luck, we will get sprung tomorrow.

Life with our sweet boy is anything, but dull!









Thursday, June 27, 2013

Long Time, No Post

It has been over 2 months since my last post here. I've missed writing and hope that you've missed checking in on our little family.

I had all kinds of posts planned and in my drafts folder-- a Mother's Day post, a Father's Day post, a post about a rare and amazing date night for me and the hubby, posts about Matthew's amazing new school and his last day of school. All of those will come eventually, we've been busy lately.

About a month ago, Matthew began gagging and retching when it came to eating and drinking. Then the vomit would come. It would happen with solid food, with bottles of Keto eggnog, and even when we would touch empty spoons to his lips. After the retching and vomiting he would be all smiles and like nothing was bothering him.


 That was the start of our latest little adventure. One month that equalled 4 trips to the ER, 2 hospital admissions, firing our long-time Gastrointerologist and hiring a new one during a hospital admission, an NG tube, a pH probe, multiple x-rays, and my little guy being stuck at least 12 times for IVs. And another crappy part for me particularly was having to see the smug staff pediatrician who told me when Matthew was 6 months old that all of this was going to happen and that he would need assistance with feeding as he got older because "all kids with his kind of issues do."


The pH probe showed severe levels of acid reflux that his Prevacid wasn't even coming close to touching. Also when filling out his probe journal, Matthew's nurse suggested that I include all of the times he would have an episode of Infantile Spasms. Turns out those episodes were occurring exactly when his acid levels were the highest. The diet is controlling his seizures, now we may have an answer about the spasms.


And now here we are, 2 weeks status post a laproscopic Nissen Fundoplication and g-tube placement. I worked so hard with Matthew to keep us from getting to this point: working with a speech therapist and an occupational therapist on feeding, trying new textures, using a Nuk brush to get him to practice biting down. I so badly wanted to prove that smug doctor wrong.

 Even though he is feeling so much better now that his acid issues are resolved, part of me still feels like I failed him because I didn't work hard enough with him to keep him from needing the g-tube. Silly I know, because I know that a child needing a g-tube isn't a failure and that moms aren't failures because their kid needs one, it's just something in my head. Us moms have the bad habit of always blaming ourselves and saying we should have done more.


We just got home from the hospital on Monday. He actually was released from the hospital last Tuesday, but we were readmitted the very next afternoon due to gastroparesis and c diff. It has been a very long two weeks being in the hospital and an even longer month seeing your baby in pain. Now we are fighting insurance and dealing with home health companies to get supplies delivered and learning how to live life with a g-tube and a feeding pump.

For all of our readers who are still here, thanks for hanging in with us. If any of you are parents of Tubie kiddos, any helpful hints or product recommendations for a rookie mom?

Sunday, April 21, 2013

Legacy of a Super Hero

It has been a week since our special needs community lost a true super hero. He was strong, courageous, and he left this world helping others. Super Gavin was just 5 1/2 years old.
 
 
Image Courtesy: Chasing Rainbows
 
 
I first learned about Gavin Leong through his mom Kate's blog Chasing Rainbows when I started blogging back in July.  I was just learning the ropes and started finding other moms online who I could learn how all this blog stuff works. Right away, I was hooked on Kate's blog. Our families had a lot in common--we both had been through years of infertility, both had undiagnosed non-verbal boys, and we do whatever it takes to make their lives better and to help them move forward in the world. 
 
Gavin gave me hope for Matthew's future progress. Kate and her husband Ed were told to take baby Gavin home and make him happy, clearly not expecting him to make gains. Kate sought out alternative therapies and fought to get what Gavin needed. In December, he took his first independent steps and completed the therapy goal of walking 5k, or 3.1 miles, in school. A few days before his last illness, Gavin began using a Big Mac button in school to request water. He was only beginning to tap into his potential and I will always miss seeing what he would have become. Gavin was a shining example that miracles can happen.
 
In his final days, Gavin touched the hearts and influenced the actions of thousands and thousands of people who he never knew. Kate's Facebook page grew from a few hundred fans to over 16,000 fans at the time I am writing this. As a group we held vigil with Kate and Ed, praying for the miracle we were all so desperately wanting for Gavin. And we cried and prayed together for strength for Kate, Ed and Gavin's younger brother Brian when it was clear that the miracle wasn't coming and Gavin was slipping away. I have never seen such an outpouring of love, prayers and support on Facebook before. It is truly amazing how so many people can come together to love and support a family that they don't even know.
 
Because of Gavin, children around the world got hugged tighter and longer, their parents knowing that life is fragile and that at any time any one of us could be in his parents' position.
 
Because of Gavin, people are learning more about organ donation. Kate and Ed selflessly donated Gavin's organs in hopes that others could be healed and that part of Gavin would live on. Thanks to Gavin, a 40 year old man who was in need of a kidney transplant will be getting more time with his family, more holidays, more birthdays.
 
In lieu of flowers, Kate and Ed set up a wish list of charities close to their family's heart that they wanted people to donate to in Gavin's honor-- the Nemours Child Life Department, Gift of Life Family House, and Caring Bridge.
 
 
Fly high, Super Gavin. Thank you for touching so many hearts and lives and for bringing out the goodness in so many people.
 
 
 


Wednesday, April 17, 2013

Three Years and a Million Miles

April 17th is a special day in our little family of three. Joe proposed to me on April 17, 2000, and after I called him a liar for tricking me, I said yes to marrying him.


And 10 years later, after a brief cancer scare for me and years of infertility, it was the day of our precious baby boy's first smile on his 5 week birthday. Matthew and I were in New Jersey with my in-laws to see Joe's grandmother who was very ill and had major surgery the day before. She was afraid that she would pass away and never see Matthew so we went to surprise her.






That same day our lives were forever changed when Matthew had the first of many seizures in just a few hours. The day we were thrown head first into the unknown. 



Matthew went through numerous CT scans, MRIs, blood tests, genetic testing, video EEGs,and 3 spinal taps in a week. They sat us down at a conference table in a tiny room and told us that Matthew's brain was shutting down for seconds at a time and when his brain was functioning it wasn't synchronized and working together. They gave us a grim prognosis of Ohtahara syndrome and released us after a week of being there. 

We were told a lot of different things by a lot of specialists that never proved to be true. Matthew doesn't have Ohtahara, his brain isn't shutting down and it did finally start working together. We were told that he would need a feeding tube, so we worked to find him excellent occupational and speech therapists to help us with feeding issues. His favorite foods are now chicken nuggets and macaroni and cheese, just like any other kid his age. He does occupation and physical therapy at school and at an outside rehab center. He works with a vision teacher to improve his tracking skills and with a teacher of the deaf and hard of hearing. He rolls all over our house, he dances in his gait trainer and he flirts shamelessly with every woman he meets. He loves Cars (especially Mater), Mickey Mouse Clubhouse, cars and trucks, and music. He has exceeded all we were told his life would be and continues to work hard every day.
He is our miracle.

Wednesday, March 20, 2013

The Not-So Scary Pre-K IEP Meeting


The day I have been dreading for the past two and a half years came last week: the dreaded Pre-K IEP meeting. I have never heard of one positive IEP meeting. There are whole threads of warnings to bring an advocate and not to sign it if we were concerned about the terms of the IEP. There are tons of horror stories on Facebook. Before Matthew was born I ran a school clinic, so I was on the other side of the table in these meetings. Now I am a mom to a little guy who has a very specific set of needs. How would I know if I made the right decisions for Matthew? What if I accepted the terms and I should have asked for more services?

A week before the placement meeting, I took Matthew in for an evaluation with his Vision Impairment teacher, a Deaf/Hard of Hearing specialist, a physical therapist, an occupational therapist, a speech therapist and a placement specialist. We went over his entire birth and health history--super easy with the cheat sheets I have made up listing diagnoses, medications, doctors, and his allergies. While we were talking Matthew was in his wheelchair flirting and jabbering with all the ladies in the room and batting at the toys they put in front of him trying to gauge his actions and responses. My take on these evaluations is that you want your kid to show what they can and cannot do so that they qualify for school based services, but not do it so well that they get less services or no services at all. If I'm wrong, that's just my impression.

In the end he knocked their socks off. He was happy for the most part, but did get to see a tiny taste of one of his meltdowns. He smiled and palmed and batted at toys. He played with some of his OT apps on his iPad. He rolled around on an exercise mat on the floor for the physical therapist. He even mimicked sounds to his vision impairment teacher for the first time ever. They took their piles of notes and said that we could reconvene in a week to decide where he would be going to school.

I was so nervous the morning of the placement meeting, I told Joe the wrong time and we showed up an hour early. We sat there playing blocks with Matthew while other parents and kids came and went, all the while waiting to determine Matthew's fate. We had been told there were two possible schools that could accommodate his level of needs: one about 20 minutes from home, the other over an hour away. We have refused bus transportation so I will be driving him and picking him up from his half day sessions.There was no doubt we wanted the closer school. Even more than that, after our last school experience, I wanted a place that I could trust with Matthew. The closer school has a few more pluses going for it, Joe is on good terms with the assistant Principal because his kids used to go to Joe's after school program. Also, Matthew's deaf/hard of hearing instructor goes there to work with kids once a week, so I know she would watch out for him.

We went over everything we had talked about in the evaluation and they gave us their recommendations for services. He was approved for vision services once a week for 30 minutes, deaf/hard of hearing services once a week for 30 minutes, language services twice a week for 30 minutes a session, occupational and physical therapy services twice a week for 30 minutes a session. Best of all we got the school we were hoping to get and Matthew will be able to attend the morning session so that we can keep our outside therapies going.

Was this a good meeting? Could we have gotten more services? I don't know. I do know this was more than he was getting at his previous school and I have been trying my best to do at home since he left the other school in January.  I am feeling a little more at ease at sending him back to school after Spring Break. All I can do at this point is have faith and stay involved.

Sunday, March 3, 2013

At A Loss for Words...But Not Anymore

Saturday morning I couldn't wait to get out the house. I have been sick with the flu and then bronchitis for three weeks and on a ton of meds. I have not left the house except for Matthew's therapy appointments, preschool evaluation and side trips to Wal-Mart to restock on tissues, tea and Mucinex. To say I had a serious case of cabin fever would be an understatement.

A certain little boy will be turning three in the next couple of weeks and I am so behind on party planning and shopping. Armed with my always present list, we were off to our local mall to tackle the hardest item--buying Matthew's birthday gift. I was a girl on a mission.

The trip was pretty much a bust so we decided to leave and shop for the party supplies instead. Matthew was having a great day out--he was smiling, looking around and baby babbling away. All was right in our little world.

When walking through the food court to our exit, a kiosk worker stepped out and attempted to lure us over to check out the toy he was selling. I politely told him no thanks and kept pushing Matt toward the exit. He stepped out and blocked the path where I was pushing Matthew's wheelchair and dropped this bomb on me:

"Come on lady, your kid is autistic and you won't even let him look at my stuff?"

I froze stiff. Did I just hear him say what I thought he said?  Was he implying I was a bad mother? When in the world did it become acceptable to target a disabled person as a sales pitch?

I spun around and looked him, ready to lose it big time, all while Joe was pulling me by the arm to the car. The only thing I could get out of my mouth was to keep asking if he really said what I thought he said. I think he was equally in shock. He has heard me complain before about how people treat those with disabilities, adults always being far worse than kids. I am used to people staring at Matthew, usually I just stare back. I have never experienced such coldness and horrible treatment as this. Joe got Matthew and I into the car and went back into the mall and filed a complaint with guest services and requested a follow up call to find out what steps will be taken in disciplining this person. I will write a follow up post about what comes next.

I came home, still in shock, and posted the encounter on my private Facebook for family and friends. Not really surprising, the responses ranged from outrage, those who wanted to pay the guy a visit to show him what they thought he could do with his comments and generally a lot of love for Matthew. What was surprising to me were the amount of comments telling me to just ignore what happened and comments like that. Well, that isn't going to happen. I'm only getting started in finding my voice in advocating for Matthew.


**As of 3/5 we have received a phone call from the owner of the kiosk, who received our 
  complaint from the mall manager. She apologized profusely and stated that he will be
  removed from his position. We didn't ask for his dismissal, it was the owner's decision.