Jackson Needs You!

January 17, 2017

January 3rd, 2017

Things have been intentionally quite for the last few weeks. We ave been discovering our "new (again) normal". Life without a trach is pretty exciting. We can see a huge difference in his personality and really believe that it centers around a renewed confidence he has gained. He isn't afraid to bounce around or do somersaults and flips. He's also talking more and more.

Life is pretty good right now.

I will play catch up with some pictures starting now.

Jackson hopes everyone had a Merry Christmas and a happy holiday season.

January 17, 2017

December 21st, 2016

Jackson slept beautifully last night. All of his numbers stayed right where they should and probably had the best night of sleep he's has in months (or years). We are so proud of him!!!!

We aren't out of the woods though. We will still be monitoring him closely for the next few weeks.

January 17, 2017

December 20th, 2016

The burning question: What the hell happened?

The answer: Jack is finishing up a cold. He has a lot to cough up in the morning. He sleeps with a small plastic barrel with paper over the ends over his trach at night. This helps him breath humidified air without using a ventilator. Sometimes, when he coughs, snot gets stuck in that plastic barrel and it has to be replaced because it gets so full he can't breath out of it anymore.

This morning, he coughed up a lot of snot into the HME (plastic barrel). He tried to take it off himself and pulled his entire trach out. Mommy was right next to him. He panicked a little. Daddy sat with him and we gathered all the supplies to put in a new trach. No one panicked. Jack calmed down and then we all realized he was doing just fine so we called our pulminolgist and asked if we can keep it out. They called us back a few hours later and we came up with a plan to keep him safe and keep the trach out.

The plan: He is continuously monitored by the pulse oximeter. This will happen today and probably tomorrow. We are watching his O2 and heart rate. If his heart rate gets high or he gives us any signs of distress, we go in to the ICU immediately. He will have a nurse tonight. We have asked both of our nursing agencies to help us get a nurse every single night for the next two weeks. He has a gauze and tape over the hole and it is expected to mostly close up within the next week or two. If he needs a trach put in, it will be a surgery. The doctors are requesting an immediate sleep study. This will most likely happen the first week in January. Once he's cleared, we are all done. Jackson may still need the help of a ventilator in the form of a c-pap in the future. There is always a chance he could need a trach again, at some point in his life.

So far, Jack is rocking it. He is breathing just fine and is more worried that we haven't called Santa to tell him his trach is out.

MERRY CHRISTMAS!

January 17, 2017

December 19th, 2016

Jacksons O2 levels dipped again last night (92) but they didn't stay there and his heart rate stayed within a good range. Before mom and dad finally crashed out, his o2 had come up and stayed above 97 all night. His fever has returned today but he's in really good spirits.

All he is doing is proving to us that he can catch an upper respitory infection and not require the help of his ventilator. He is being a typical sick kid. This is just proving that he can probably have that trach tube removed with no problem.

Keeps the happy thoughts and prayers coming.

January 17, 2017

December 17th, 2016

And the fever is back. In fact, it has spread to baby sister and mommy (poor daddy). We are doing a breathing treatment in the hopes it will open him up and keep his o2 up. He isn't a fan of the blow by air.

January 17, 2017

December 17th, 2016

Jack is doing much better today! Things got a little scary when his O2 kept hovering around 92 and his heart rate was in the 130's. His fever broke around 4am and all his numbers came up. We will take it easy today and hope it doesn't come back tonight.

January 17, 2017

December 16th, 2016

Jackson has a fever. 102 so far. We are alternating Tylenol and Ibuprofen. But even with the meds on board, it's still up. We have a nurse tonight but we still need happy thoughts and prayers.

January 17, 2017

Jack did great! His trachea looks awesome and he has no granulation. He has a smaller trach tube now with no balloon (or cuff). He has been moved to recovery and we are just waiting for him to wake up a little and then he's ours again.

He's going to be starving and angry. I'll take it.

January 17, 2017

December 9th, 2016

Jackson just went back to the OR. Unfortunately, I didn't get any video of him on his meds but he was very happy and relaxed.

Now we wait.

January 17, 2017

December 8th, 2017

We will be checking in tomorrow at 6 am for Jack's procedure. Think happy thoughts and day prayers we have no complications and it's uneventful.

In other news, we had to move the pop-up fundraiser to Saturday because of the weather. It snowed and then turned to ice and everything shut down. The kids had a blast.

January 17, 2017

December 4th, 2016

Jackson and his sister had an amazing time at the Childrens Hospital Christmas party. We met Queen Elsa, Bell, Ariel, Rapunzel, Captain America, and of course, Santa!

The kids where given presents from Santa and his elves. Captain America pulled mom and dad aside to let us know that he would make sure and tell Spider Man that Jack will be back on Friday for his procedure.

January 17, 2017

November 30th, 2016

Next week Jackson will have a procedure done in the OR at the Childrens hospital. His doctors will be checking the inside of his trachea for any damage or anything that may cause concern. This is a fairly standard procedure in trached patients but also standard when the patient is getting closer to having their trached removed permanently.

I have spoken with his doctors and we are still on track to remove his trach in late spring.

(Jackson took this selfie yesterday)

January 17, 2017

November 25th, 2016

We are very excited to partner with Mike and Cathy Novak of LuLaRoe for a fundraiser for Jackson. Proceeds will be used to get him back to Minnesota to see the world's leading experts in Myasthenia Gravis at the Mayo clinic.

To all our friends that want to see the live feed where I introduce Jackson to the LuLaRoe community, the link is posted below.

The fundraiser starts December 1st!!!

https://www.facebook.com/groups/CathyandMikeNovakLularoe/

January 17, 2017

November 17th, 2016

Today is World Prematurity Day. If you don't already know, Jackson was born at 29 weeks (instead of the usual 40 weeks). He spent 52 days in the NICU and came home with an apnea monitor. He quickly overcome all of his challenges.

*There is no known connection with prematurity and Myasthenia Gravis.

January 17, 2017

November 8th, 2016

After our unfortunate experience with a seller on Etsy, we had some amazing people offer to make Jack covers for his g-tube. They arrived today and he loves them. It's so important that the time we spend taking care or Jackson's trach and gtube are as "normal" as we can make it. This includes letting him pick the covers we use.

Thank you Mistie.

January 17, 2017

October 29th, 2016

Something kind of amazing happened today. I received a box on the mail to ship the feeding pump back! Jack has been eating all his food on his own for close to two months now. Even if he gets sick and can't eat we can still use syringes to get him his nutrition.

Cheers to one less machine and to BACON!

January 17, 2017

October 28th, 2016

Tonight was Open House at Jackson's school. We met his teacher and saw our favorite therapists. The most exciting event was visiting "the big room" aka the indoor gym. According to his teacher; Jack is a joy in class. He participates and encourages other children to do so. We are still working on our clean up routine.

January 17, 2017

October 27th, 2016

We had to make a trip up to the hospital today to see the surgeon. Jacks g-tube has been hurting him ever since we had it replaced at the hospital. The doctor we saw was concerned that the internal balloon was pinching him and cause pain whenever it's touched. We tried replacing it today. Hopefully this works and we don't have to do something in the OR.

January 17, 2017

October 24th, 2016

We attended the annual Halloween party at our local Elks lodge. As always, it was amazing and the kids had a great time. The entire family dressed as Angry Birds.

January 17, 2017

October 24th, 2016

Jack had a blast making his haunted ginger bread house. Mostly he ate the candy and told mommy where to put it.

January 17, 2017

October 23rd, 2016

Do you know what a teal pumpkin on a porch on Halloween means?

My son has a tracheostomy tube. His first Halloween home from the hospital, he couldn't eat candy. While the project discusses mostly food allergies, it is for all children that may not be able to eat candy but still enjoy trick or treating.

In honor of Jackson, we are a teal pumpkin house.

https://www.foodallergy.org/teal-pumpkin-project#.WA1J6BllDqA

January 17, 2017

October 20th, 2016

Jackson had a flu shot the other day. Boy has it been rough! All of his doctors are aware of the shot and there was a lot of discussion about risk vs. benefit. He did fine with the shot itself but within 24 hours there was a dramatic increase in the ptosis in his eyes (eyelids not opening). He looked almost asleep when he came home from school. Then he spit chocolate milk out and said it was too hard to swallow. This is a huge deal and significant cause for concern. If he can't control the muscles he uses to swallow, he can't manage his secretions and becomes a risk for aspiration (breathing fluid into his lungs). Fortunately, I have the means to reach his PCP at all hours.

Even more fortunate, Jack did a 180 was totally fine before he fell asleep.

Back to the unfortunate, a side effect of the flu shot in kids is a raging headache. He was unable to sleep most of the night and not able to communicate he was in pain. Eventually we figured it out and some over the counter ibuprofen helped the poor kid fall asleep.

He woke up late today but in a much better mood and the ptosis in his eyes is much better!

Let's hope it stays that way.

January 17, 2017

October 12th, 2016

One year ago today we came home from 111 days in the hospital. When we first came home Jackson was dependent on his ventilator, dependent on his gtube, and required 24 hour care. He could hardly walk or talk. We had therapists in our home five days a week and doctors appointments several times a month. We couldn't leave our home to visit family or friends for fear of exposing him to germs that couldn weaken him. We still didn't even have a diagnosis for his condition.

None of this is true anymore.

We are taking steps to get Jackson's trach taken out soon. He eats several meals, by mouth, every day. Not only is he walking and talking but he is taking gymnastics classes and talking up a storm. We have been discharged from all of our home therapies and only see our doctors to check in, every few months. He is in pre-school with his peers and sees friends a lot more often. We even have an official name for his rare condition. Myasthenia Gravis.

Jack is the strongest person I know. He continues to be an example of strength and determination to everyone that knows him.

We are very excited to see what the following year will bring to him.

We ❤ you Jackson.

January 17, 2017

October 5th, 2016

I received some very exciting news yesterday. Our pulminolgist called to tell us that she is heading the opening of a brand new pediatric neuromuscular clinic at Randall. This is going to give pediatrics MG patients more choices in who they see. Right now there is only one pediatric MG "expert" in Portland and she is at OHSU. As of now the clinic will include:

Pulminolgist

Neurology

Physiatry/rehab

Cardiology

Nutritionist

Respitory Therapist

Physical Therapist

Occupational Therapist

Speech Language Pathologist

The clinic is scheduled to open early 2017.

I have personally worked with ALL of the docs that are joining as they are all part of Team Jackson.

Jackson (and family) have been invited to be the first patient at the new clinic!!!!

January 17, 2017

October 5th, 2016

Jacksons sleep study cake back 100% normal!!!!

This means we continue with what we are doing. As long as he maintains his stability we are on track to take the trach out in the spring.

January 17, 2017

September 28th, 2016

He really could not have had a better day. Mommy had to go because he doesn't have a nurse to go yet. But mommy stayed in the library and only came in to give medicine. He made new friends. He loved his teachers. He colored some ducks.

He was not happy that class was over and even more unhappy that he could not ride the school bus. But we promised him he could come back and ride the bus next week.

SUCCESS!!!

January 17, 2017

September 28th, 2016

Guess what?!

Somebody gets to start Pre-school today!!!

Jack was unable to attend last year because of his health. This year, he is stronger than ever. He is going to be in a class designed for children to work on socializing with other children. This is because it's not uncommon for children, that spend more time in a hospital or don't get to interact as much, to become more comfortable around adults.

Also, because he's brilliant and doesn't need to learn his ABC'S, numbers, shapes, and colors. He knows them already. That doesn't mean there won't be an academic side. It's just structured differently.

He will be going to school via the Early Intervention program. This will pave the way for us to make sure he is successful when he starts mainstream school. Even if it's private or home based.

We are all very excited for him. Jackson is most excited to ride a school bus.

Happy first day of school!

(Way more pictures will be posted later).

January 17, 2017

September 20th, 2016

I might be jumping the gun here. But look at this kid eating a totally normal breakfast!!! I haven't put any food in the gtube for a week now. He's eating all meals by mouth now and every day he's more open to at least trying something different. This is huge!!!!!!

We still use the tube for medications and have no intentions on taking it out anytime soon. But to not need it for food is amazing. He cleans his plate.

Parenting win!!!!!!!!

January 17, 2017

September 17th, 2016

This article is about one of the two, drugs Jackson's takes to STAY ALIVE. If this happens, it will be worse than than the Epi Pen disaster. They are claiming it will costs $150,000 per year or $12,500 per month.

Jack will take this drug for the rest of his life. This battle will NEVER go away. These people are going to kill my son if they win.

http://www.npr.org/sections/health-shots/2015/12/23/460719043/fda-approval-could-turn-a-free-drug-for-a-rare-disease-pricey

January 17, 2017

Well, we tried to get it back in. No luck. This hospital can't find the right supplies either so we went to Randall. They got it back in.

January 17, 2017

September 13th, 2016

Jackson caught his gtube on the table and it was pulled out. We had to come into the ER. The nurse was able to get a catheter in to keep it open but it's 3 sizes smaller. This means we will need to stretch the hole out to get the right tube back in. We have some drugs on bored to help him relax.

Waiting on the doc now.

January 17, 2017

September 11th, 2016

FIRST DAY AT GYMNASTICS!!! He did everything his coach asked of him and had a blast. She is so good with him.

He's doing 30 minute private sessions now. The goal is to increase the time and eventually move him to the group classes.

September 7, 2016

Septemeber 6th, 2016

We are going to have to go back to the Mayo clinic in Rochester, MN soon. I'm hoping the visit will yield happy news regarding Jackson's thymectomy from December, 2015. At the very least I'm hoping they will say his symptoms are being managed well.

I had originally hoped to go at the one year mark from his first appointment but traveling commercially right now is

1) not affordable

2) a very bad idea given that cold and flu season is starting.

My new plan is to wait until the spring. We are hoping that we can have his trach removed by then and have saved enough to cover the costs. We learned so much last time about how to cut costs (Ronald McDonald house, food delivery, free shuttles, etc) but even still it's are minimum of a 3k trip.

My point? We will be doing some fundraising again. I'll update when things are finalized.

If anyone is interested in helping or has ideas, send a PM.

September 7, 2016

August 29th, 2016

Jack saw a cardiologist on Friday. This appointment was just to confirm that he doesn't have any issues.

Jackson's heart rate and O2 levels are monitored at night and he has had instances where his heart rate has dropped very dropped low (under 50). Since then, we have begun to wean some of the medicines used to help him sleep and the occurrences have all but stopped.

Once we explained this to the cardiologist, the Doctor agreed it was related to medicine and we will not be returning.

WOOHOO!!!

(These two think they are hilarious.)

September 7, 2016

August 23rd, 2016

Woohoo! We survived and we got a new Hot Wheels!

September 7, 2016

August 22nd, 2016

He's such a ham. He's been very good about letting his sleep technician put his leads on. We are just letting him get nice and sleep before we attach the leads that go on his face. Mom is with him. Dad is holding down the fort with little sister.

All is well. Let's hope he has a quiet, restful sleep.

(He isn't actually sleeping with this on his head. It was used to measure points for the probes. But he laughed about his funny hat.)

September 7, 2016

August 22nd, 2016

Sleep study tonight! I'm telling Jack all day that mommy and Jack are going on adventure and this will help us so we can stop doing trach care forever.

September 7, 2016

August 14th, 2016

Someone got new trach ties! These will make his neck easier to clean that the cloth ones.

September 7, 2016

August 12th, 2016

We are giving serious consideration to enrolling Jack in more outside activities. Today we took him to an evaluation at a local Gymnastics Academy and he absolutely LOVED it. His coach was so good with him.

September 7, 2016

August 21st, 2016

Jackson had a his thymus removed December, 2015. Lots of people have asked why we chose that route if he didn't have a thymoma (tumor). Now there is a competed study from a reputable group of doctors that supports this decision.

In his case, his thymus was running wild and had to be removed before it had a chance to grow a tumor. Even though we haven't seen results yet, we are still hopeful. Some patients don't see a change for years.

September 7, 2016

July 31st, 2016

Jackson has really bad RLS (Restless Leg Syndrome). It's caused by a severe iron deficiency. He wakes up every night between 1230-1am. He moans, tosses, kicks, flails, flops around and cries out of frustration. He is obviously so tired. He will snuggle with mommy and then get upset because he can't hold still. He wants to sleep. This will probably go away once we get his iron levels back up but it's a slow process (even slower when you can't sleep). He's been on it for a month and we only have two more months to go before we do another blood test.

It's exhausting. He's up every. Single. Night.

I'm trying everything I can think of. Tonight it's essential oils and a leg massage.

I'm open to suggestions. Even if you don't know if it will work for children or MG patients, I can do the research.

Check out this cute picture a friend took at the park the other day.

September 7, 2016

July 28th, 2016

Wooohoooooo! Exciting change in the works. Jack has been using a product called Boost Kids Essentials to augment the food he eats. This is a lot like Pedia sure, Ensure, or Slim Fast. It's a meal replacement. The problem I have with it, is that it's all processed and full of sugar. That and the food he chooses to eat don't make for the best diet. Today I found a new product that is made only with fruit, veggies, brown rice, and beans. Nothing processed. I can use that as a base for smoothies and add iron rich foods to make a super smoothie. I'm working with our medically fragile program to get a blender specifically for this and of course, I have to get it approved by the insurance company. However, the dieticians are on board and willing to help make a case.

Yeah for healthy foods!!!!!!

September 7, 2016

July 19th, 2016

No news is good news. A minor stomach bug went through the house but otherwise, all is quiet here.

September 7, 2016

June 29th, 2016

Jackson has been having some weird episodes at night. His rate is dipping low enough to be considered bradycardia. We have an EKG and an echo scheduled in the next few weeks and then we will meet with a cardiologist.

I think the episodes are related to the amount of sedatives he is on for sleep. Since we have started to wean from some of them, these episodes are less and less frequent.

Also, he experienced some hallucinations at the beach a few weeks ago. It was an isolated incident and his parents and doctors all believe it was a result of overstimulation, exhaustion, and fighting the heavy sedative he was given.

Jack likes to keep us on our toes. Here are some pictures of him at the Oregon Coast.

September 7, 2016

June 17th, 2016

We saw a new pulminologist last week. She is new to the team and our current pulminologist wanted her to meet Jack so that when they collaborate she has a face. She has recommended a lot of changes. All positive and all because he is doing so well.

1) New trach. The size he has now is no longer appropriate. He needs a longer and more narrow model (he has an unusually long trachea for a child his age).

2) Meds need to change. He takes a lot of medication to help him sleep. When he was weaning from other medications, this was appropriate. Now we need to focus on getting to fall asleep more naturally.

3) He may be one of the coolest kids she has ever seen.

The process to wean meds is slow with Jack. Always has been.

His body doesn't handle change well so slow is best.

This is how the coolest kids ever, sleeps.

September 7, 2016

June 17th, 2016

We are a GO to start the process for decannulation. It isn't going to be fast. The first thing we have to do is a sleep study. This will make prove that he is capable of breathing on his own (which he is). Then we will put a cap over the trach so that Jack is really and truly not using the trach at all. This is probably going to be the most challenging. Jack doesn't like this step. In fact, he hates it and it causes him to panick. Once we have him capped for 12 hours a day, we will do another sleep study with the cap on at night. All of these steps prove that he he doesn't need the trach anymore.

We will also be teaching Jackson to use a C-pap mask. This is because we know that he will most likely need oxygen again (every time he gets a cold). We expect that this will also be a challenge (what four year old likes to put on an oxygen mask).

We have to go very slowly with this entire process. we don't want to put the trach back in because we went to fast.

Fingers crossed. It's going to be a long journey.

Video of Jack making pizza with daddy.

September 7, 2016

June 10th, 2016

Four years ago today, Jackson came roaring into this world. He was 3 months early with a full head of red hair. These four years have been more amazing than we ever thought possible.

Happy birthday sweet boy! You are so loved.

September 7, 2016

June 9th, 2016

We have a very important appointment today. We are meeting with the pulminologist to discuss decannulation. This means we are going to work towards taking the trach out! It is a process. The time line depends on Jack and how he tolerates that changes. I have included some detailed information from the John's Hopkins site.

Decannulation

Definition:

The process whereby a tracheostomy tube is removed once patient no longer needs it.

Indication:

When the initial indication for a tracheostomy no longer exists.

Requirements:

A patient is considered a candidate for decannulation once the following conditions are met.

Patient is alert and oriented and responsive to commands.

Patient is no longer dependent on a ventilator for assisted breathing.

The frequency requirement for tracheal suctioning is less than once a day. (This is not always the case. Check with your physician)

Patient has met the criteria for decannulation outlined below.

Criteria for decannulation

Patient should not be dependent on a ventilator.

Patient’s mental status should be to the level of alert and responsive and should be able to manage their oral secretions without a risk of aspiration.

Should not require frequent suctioning for tracheal secretions.

Patient should be able to cough and clean his/ her tracheal secretions.

The patient should have their tracheostomy tube downsized to a size 4 Shiley or similar tracheostomy tube and they should not have breathing difficulty in the presence of this tube.

The size 4 Shiley or similar tube should be occluded (with a trach plug/ cork) for twelve hours during the day with close monitoring by the nursing staff with no evidence of respiratory difficulty or requiring of suctioning of the trach tube.

Once the patient is seen to tolerate the steps in item # 6 above, their trach is plugged for twenty four hours and they are monitored for respiratory difficulty or suction requirement.

Decannulation:

Once all of the above criteria are met, the patient is informed that their trach tube is going to be removed. They are instructed that they may experience a sensation of shortness of breath for a few minutes once they are decannulated.

Arrangements should be made for back-up personnel (RT or RN) to be available in case of emergency. Decannulation is usually not done at home.

The patient is placed supine (flat) on their bed, the tube is removed and the opening into the neck is covered with sterile gauze and a tape is placed over the gauze.

The patient is instructed to occlude the gauze with their finger tip every time they cough or speak so that air does not leak. They should change the gauze and the tape at least once a day (more often as needed) until the hole in the neck heals itself closed over the next few days to weeks. In a minority of patients (<10 %), the opening into the neck skin has to be surgically closed.

September 7, 2016

June 3rd, 2016

This is his life. He's almost four years old.

His eyes sometimes refuse to open. He experiences blurry and double vision. He gets weak and his legs give out. His head becomes too heavy to lift. He can't talk. He can't eat. He can't drink.

Sometimes he can't even breath.

Sometimes we can predict it. Sometimes it's completely random. Treatment can be extreme. Medications have side effects.

We do the best we can. We research every medication and snake oil cure.

September 7, 2016

June 2nd, 2016

Jackson went berry picking today. The weather was cool enough to be outside without his cooling vest. He had a blast picking/eating Hood strawberries and raspberries.

September 7, 2016

June 2nd, 2016

Myasthenia Gravis patients refer to themselves as snowflakes. The reason is because no one has the same symptoms. There is no "textbook" list of symptoms. Some are more common than others but some are totally off the wall and unique to the individual. This is why Jackson was so hard to diagnose (until we took him to the world's leading expert). The awareness color is teal.

June is Myasthenia Gravis awareness month.

September 7, 2016

May 27th, 2016

He rode Splash Mountain four times!!! No pictures because he was too short to be seen in the shots.

September 7, 2016

May 24th, 2016

Jack met Minnie and Stitch. Him and Stitch bonded. They had a good 15 minutes together. It was amazing.

September 7, 2016

May 22nd, 2016

We are all so tired. The kids are passed out. Tomorrow we meet Lightning McQueen!

September 7, 2016

May 22nd, 2016

Amazing plane ride! We sped through TSA with a personal escort. We borded first and the kids got their first time flyer wings. Jack went into the cockpit and flew the plane (Tori wasnt interested). They made a special announcement for him and everyone cheered. The airline comped all our food and we got pictures with the crew!

September 7, 2016

May 21st, 2016

Jacksons medical equipment has been quadruple checked by myself and three nurses. Even though he is behaving like an average three year old, we have to pack for worst case scenario. IT'S A LOT OF STUFF.

September 7, 2016

May 16th, 2016

Today we meet with the Make a Wish Foundation to finalize the details of our trip to Disneyland!!! Woohoo!!! Jackson has no idea.

This past weekend he went to a friend's Frozen themed birthday party and had a great time.

September 7, 2016

May 6th, 2016

Jackson has been using his passy-muir valve (speaking valve that goes over the trach and allows him to move air over his vocal chords more like you and I). We have not heard his real voice in almost a year.

It's music and it's overwhelming.

He is still trying to find his voice and sounds very lyrical when he talks. But just like his mommy and daddy, he is a talker and has starting saying things we have never heard before. He is actually really funny and has been cracking jokes, singing, and laughing so much.

His voice is only going to get stronger.

We have been using the valve for 2 days now and he really enjoys being heard. We can see his confidence returning.

September 7, 2016

May 4th, 2016

We are working on helping Jackson learn to speak without using the trach. This is another step before we can remove it. He has to re-learn how to move the air up and out of his mouth and nose. It changes the pressure he feels and can be unsettling. It doesn't hurt but he hates it.

September 7, 2016

May 2nd, 2016

Guess who's had breakfast, lunch, and dinner every day since Friday? We have only used the g-tube for medicine.

September 7, 2016

April 30th, 2014

Jackson attended a very special birthday party this weekend. His baby sister turned two. He had an opportunity to meet Queen Elsa and Princess Anna. Being the ladies man he is, he made sure he was up front and center during story time and even grabbed Elsa by the hand to escort her to the back deck.

September 7, 2016

April 29th, 2016

Jackson has a friend named Daniel. Daniel lives in South Dakota and has CMS. He was a big cheerleader for Jack when he was sick and even sent him a huge Mack truck to play with.

Daniel is in the PICU with the enterovirus. The same virus Jack had. Please take a minute out of your day to send Daniel your happy thoughts and prayers.

September 7, 2016

April 26th, 2016

Jackson isn't feeling so hot today. He's got granulated tissue around his g-tube site and its painful. Hopefully we can get it more under control today.

Granulation Tissue Formation

Granulation tissue is an overgrowth of capillaries and looks red, raw and “beefy.” It may cause pain as the skin breaks down around the site. This is a very common problem with G-tubes. Some treatments are painful, especially with the use of silver nitrate. Treating granulation tissue formation should only occur if the skin is bleeding or causing distortion of the tract leading to heavy leakage of formula and fluid from the stomach.

September 7, 2016

April 24th, 2016

Yesterday Jackson attended an outdoor birthday party. He ran all over the playground. Mom and dad could barley keep up. He climbed a ladder by himself! Because he got really sick before he developed this ability, we have never seen him do this before. It was very exciting to see him keep up with his friends. He even ate cake to get a sugar recharge.

It was a great party and he had a blast. It was such a normal afternoon.

His good mood carried over into th3 evening and you can see how silly he was being. At one point he was able to hold three syringes in his mouth.

September 7, 2016

April 22nd 2016

7 days without any M&Ms! He still asks for them but we are holding steady. His appetite is (very) slowly getting better.

Jack saw his Oregon neurologist this week. We are going to get him in to see her partner. She focuses on sleep issues. There is concern that Jack is having trouble sleeping without the help of so many medications. We are hoping the new neurologist will have so ideas. That appointment is several weeks out so we will continue with our current protocol until then.

September 7, 2016

April 17th, 2016

Our speech pathologist came out this week and confirmed that his ability to swallow and chew are just fine (not like they once where). This means that Jack can no longer have a diet of M&Ms and chips and that it's time to start eating real food again. We used into the m&ms. But so far, we are at two days without any! He still asks for them but we are holding strong.

September 7, 2016

April 11th, 2016

Jack went to the zoo today!

They wouldn't take him. They said he was too feral.

September 7, 2016

April 7th, 2016

We got fired from home health physical therapy. THIS IS GREAT NEWS! Jacks therapist believes he is doing so well that we don't need to see her anymore. We will continue to see occupational therapy and speech therapy.

Running laps at the Hospital. He must have chased his sister around that fountain 20 times.

September 7, 2016

April 5th, 2016

Myasthenia Gravis is often made worse by extreme temperatures. I am thrilled that the medically fragile program is helping me get Jackson a portable AC for his bedroom.

September 7, 2016

April 5th, 2016

Jackson saw his pulminologist today and he said the "D" word.

Decannulation!

Decannulation. Definition: The process whereby a tracheostomy tube is removed once patient no longer needs it. Indication: When the initial indication for a tracheostomy no longer exists.

Now we just have to decide when. I'm trying not to get my hope up because we have talked about it before but.. this could happen very soon.

September 7, 2016

March 30th, 2016

Jackson is doing really well. He say his pediatrician yesterday and he was impressed with how good he looked, all things considered. We will continue to monitor him closely and keep him on his vent at night for the the next few days. He's still having trouble keeping his O2 up while sleeping.

September 7, 2016

March 28th, 2016

Woop! Woop! Guess who's home?

September 7, 2016

March 28th, 2016

The maintenance drip for his IV was turned off and now it's closed and not usable. This isn't very convenient when he needs anti nausea medicine. Fortunately, we can give it to him via his tube. It just takes a little longer.

Also, he woke up around 1 am and has decided he would rather talk about M&Ms, Cherrios, and everything else except sleep.

Go to sleep Jack. It's 3:30 am.

September 7, 2016

March 27th, 2016

Jacksons IV infiltrated (the catheter came out of the vein and any medicine or fluids went right into the surrounding skin. It's painful and can only be fixed by placing a new IV).

He worked with his favorite IV therapy nurses. Everything went great. Jack did very well and hr earned himself a fee new cars.

September 7, 2016

March 26th, 2016

Jack is spending another night in the hospital. Overall, he did much better today and tonight but he's sats are still all over. He could swing either way and if it's going to get worse, we want to be in the best place possible. Fingers crossed he comes home tomorrow.

Looks like we will do Easter next weekend.

September 7, 2016

March 26th, 2016

Random update

Speech therapy came out last week. Jacksons language skills continue to be advanced. He surpassed all of the 3 year speech goals and went as high as ages 5 and 6.

Our boy is a genius.

September 7, 2016

March 26th, 2016

Pneumonia.

September 7, 2016

March 25th, 2016

He's behaving so he doesn't have to go back to the PICU right now. He's still asleep but the Tylenol and Ibuprofen are helping and he's coughing up stuff now. O2 is 96 and HR 128. Huge improvement.

Hopefully, we will sleep tonight.

September 7, 2016

March 25the, 2016

He's got about 30 minutes for the Tylenol to kick in to hopefully drop his heart rate and respirations. If they don't come down then we will probably go to the PICU for closer observation. He is finally asleep and seems much more comfortable.

September 7, 2016

March 25th, 2016

Jackson was doing better. But now he isn't maintaining his O2 levels without the ventilator. The doctors are pretty sure he as a stomach bug. We are being admitted and starting antibiotics.

September 7, 2016

March 25th, 2016

On our way to Randall via ambulance.

September 7, 2016

March 25th, 2016

His HR is way too high. But when you have a high fever that happens. The plan is to alternate the Tylenol and Ibuprofen. Pulminology is closed for 10 more minutes and then I'm calling them for ideas.

September 7, 2016

March 25th, 2016

Fever 103.2. :(

September 7, 2016

March 25th, 2016

Jack is having a tough morning. He threw up a few times and his O2 was low. He spent the night on his vent. He's still having problems keeping his O2 up. His heart rate is too fast. That means his little body is working hard to breath. Per his pulminologist, we are going to wait and see if he gets a little better, as he trends, before going anywhere.

September 7, 2016

MaRichard 11th, 2016

Jackson is feeling much better. His pulminologist confirmed it is most likely a virus. He has spent the last few nights on his ventilator but is his normal, fiesty self during the day. Tonight we will try him off the vent see how he goes.

Unfortunately, it looks like we won't be taking the trach out soon. Jackson has to prove that he can handle being sick without the use of a ventilator. If we did not have the vent, we would have been back in the hospital and possibly even intubated again. The ventilator is is a blessing and a curse. But we would much rather be home on our vent that intubated, unconscious, and in ICU.

September 7, 2016

March 7th, 2016

Not the best day for Jack. Despite our best efforts (and a lot of sleep medications), Jack was unable to sleep until 3 am. His heart rate was well over 150 for a few hours and we had to put him back on his ventilator to help. After 5 hours of sleep, his O2 would not stay above 94. We are pretty sure he has a virus. His pulminologist said he needs to stay on his vent until he can be seen tomorrow.

This afternoon, he stabilized. He fell asleep by 6:30pm and his heart rate is finally below 100. But now he has a fever.

Jack has become a very active little boy and was not very happy to be confined to his bed.

This one hit him hard and fast.

I hope this makes sense. I've slept 3 hours in the last 48.

September 7, 2016

February 21st, 2016

Jackson got to "test drive" some pretty amazing cars this afternoon. Including, a Lamborghini, Ferrari, Mercedes, 65 Cobra, BMW, and a Porche or two. He was also very excited to see the red semi truck.

September 7, 2016

February 20th, 2016

I am so, so, so happy to announce, that after fundraising efforts family, friends, and an anonymous donation, Mr. Jack WILL get his rehabilitation tricycle. I will send the request for the funds to be sent to Ambucs on Monday. His bike will come with a all accessories he needs to help strengthen his muscles and keep him safe. It will even have an orange safety flag (in case he drives like mommy).

He doesn't know yet. We are making it a surprise and have used Pampers points to order a pink bike for his sister. Then they can teach other.

Look out folks!

This is the exact model he will get. Dad and Mom can't thank everyone enough for supporting Jack through his journey. He is the definition of hero.

he·ro

ˈhirō/

noun

1.

a person, typically a man, who is admired or idealized for courage, outstanding achievements, or noble qualities.

"a war hero"

synonyms:brave person, brave man/woman,man/woman of courage,man/woman of the hour, lionheart,warrior, knight.

September 7, 2016

February 20th, 2016

Jackson has a bit of a cold. We all do. He's had a little trouble at night keeping his oxygen where it should be and he's had a lot more secretions (snot). The good news is that he's feeling better today and this has given us a good idea of how he will respond to a cold in the future. We have NOT had to go to the doctor for this. WIN!

Our (many) in home therapies have given us a lot of tips and exercises we can do that will strengthen his muscles while seeming like active play to him. We have even gone to the playground.

Unfortunately, he still isn't sleeping well. We are trying to find the cause but it's not easy and we are all tired. One reason may be that we have finally weaned from one of his meds that helped him sleep. He has been on it for 8 months and the wean was slow and sometimes painful. Eliminating this medicine is a HUGE step but could also be causing his insomnia.

Or maybe he's just three and doesn't always want to sleep.

Overall, he is happy and mostly healthy. His best friend is his baby sister.

September 7, 2016

February 15th, 2016

Jack is doing ok today. He had another rough night with sleep but the bleeding seems to have stopped.

September 7, 2016

February 14th, 2016

In other news, Jack is coughing blood into his trach. We have spoken with our pulminologist who has told us that some blood is normal and coached us on things to watch for. We have a nurse tonight and will be watching him closely.

September 7, 2016

February 14th, 2016

Rough night last night for Jack. He was up until 4 am. No amount of medication would calm him. The poor kid couldn't get comfortable. We think he (we all) passed out in mom and dad's bed around 4am. He was up around 9 am so today was a not great either. Hopefully he sleeps better tonight. So far, so good. O2 is 98 and heart rate is in the 70's (normal).

February 14, 2016

February 11th, 2016

The organization that is providing Jackson's rehabilitation tricycle is called Ambucs. The bike is almost $1500.00!! Get ready for more fundraisers folks.

I'm going to get this kid his bike.

Right now I'm working on getting him sponsored. This will cover the additional costs. Hopefully it won't be too hard once we explain we have already raised more than half the amount.

February 14, 2016

February 10th, 2016

This week, we have met with Physical Therapy, Occupational Therapy, and Speech Therapy.

PT has helped us come up some really good goals for Jack to encourage him to build his strength. Everything has to be play. There is no way to convince a three year old that strength training is fun. But balancing on a yoga ball, putting your toy cars on a high shelf and pretending to be a puppy are great exercises.

OT is going to work with us to create a more independent Jack. Building his confidence will help him navigate the playground with other kids, get him to walk up and down the stairs, and get him to make decisions about his body (like which clothes to wear and how to put them on).

Speech will be helping us improve our desire to take more food by mouth. They will also evaluate his actual speech and help him to speak more clearly.

It's been explained to me that because of his condition and then lengthy hospital stay, we may have fallen behind on same basic skills that otherwise would have developed normally. The good news is that we aren't as far behind as we had thought and that we are taking the right steps to correct things before he starts school.

More visits from Early Intervention later this week...... it's been crazy. But good crazy.

February 14, 2016

February 10th, 2016

This past Friday, we held a Fundraiser to raise funds for a rehabilitation tricycle to help Jack regain and keep his strength.

Our good friend Lucy held a Pure Romance party. With her help and some amazing friends we sold almost 3k and of that Jackson was given $885.00!! Now we just have to wait on some paper work and we can get him his bike!

February 14, 2016

February 2nd, 2016

We are trying to get Jackson a special rehabilitation tricycle to help regain his strength. Insurance will not cover it. We are holding a few fundraisers to help. 30% of all sales will directly towards the cost of the trike. The group is open and you are welcome to invite anyone you know.

https://www.facebook.com/groups/jams4jack/

February 14, 2016

January 24th, 2016

Jackson has been off the vent for 5 days. He is doing GREAT! He is sleeping better then he has in months and maintaining his oxygen levels.

Unfortunately, his incision has suddenly become infected. We got antibiotics and will see our doctor tomorrow. As usual, it doesn't bother him at all.

February 14, 2016

January 22nd, 2016

I'm at a loss for words. I'll do my best....

Jack had 4 appointments this week. Our physiatrist (rehab doctor) said that he is still showing signs of weakness in his legs. He is not able to run but can walk very fast. At PT services should correct this.

Our neurologist discussed problems with his sleep that could be related to medication. We have a plan but she will bring the Mayo clinic into the talk as well.

Our surgeon said he is doing great and broke up with us. One less doctor to see.

The best for last....

Our pulminologist (lung doctor) said that he is doing so well, we can keep him off his ventilator at night.

THIS IS HUGE!!!

We have slept off the vent for two nights and it's gone great. He even seems to be sleeping better. Our next steps will be to put a cap over the trach a day train Jack to breath around it. Then we can remove it. Each step takes weeks but this is a big one.

We are so happy.