Kawisaki Disease - Part 4

PART FOUR - THE FINAL TWO DAYS

Thursday morning, May 2, I woke up and immediately called Tyler wondering how it went. Jackson woke up around 10 and had a hard time falling back asleep. Basically it was like the benadryl caused him to have a nap at 6 pm, so we all know how fun that is with kids. Anyways, during the hard time at night Jackson pulled out the IV again, and this time it was serious since that was pumping him his medicine. So this time Tyler got to experience what it was like having to hold him down while they replaced it yet again. But they got it in again and he eventually did fall back asleep.

He woke up feeling a lot better! He ate a normal good sized breakfast for the first time in a week and we were so thrilled! This morning was going to be his last day of joy school (since remember we were moving to Connecticut on Monday) and I was so sad for him to be missing it. They had planned a fun goodbye pool party for him that day, but it turns out the weather was awful that day. I drove to the hospital in pouring rain and spoke with Amanda about her idea to bring the joy school girls to visit him at the hospital. I checked with Tyler to see if he thought it was a good idea and he said yes. So they planned to come over and I was so excited for the outlook of the day.

So that morning I went to the hospital alone and Tyler's parents stayed home with Abbie. As I was walking into the lobby and just turning the corner to ride the elevator Tyler and Jackson came around the corner. He had clearance to come downstairs and play in the lobby's castle for a bit. But no more than 20 seconds after I saw them, Jackson threw up. He was a mess, Tyler was a mess and I was so confused! What was going on, isn't he supposed to be better?

We got back upstairs and Jackson started acting sick again. Now he was complaining that his head hurt (for the first time) and was really cold and tired. The doctors came in and took a look and figured that he contracted aseptic meningitis, which is a less seen but normal side effect of IVIG. The symptoms are naseau, headache, dizziness, and hot and cold chills. It normally lasts only a day and they were confident that the medicine did work because his temperature was normal and other vital signs were good.

This was maybe the hardest day of the hospital stay. He should have been better yet with all these symptoms he was acting sicker than ever. The doctors and nurses kept reassuring that he was better and if the medicine hadn't worked there would be other symptoms appearing. I was just worrying, what if he never even had Kawisaki, what if he has something else all together. But luckily he was able to calm down after the nurses gave him some zofran (the same drug i took during his pregnancy funny enough) and hooked him back to an iv for his fluids.

Maelie, Sarah & Taylor, I took this from Amanda's facebook :)

A couple hours later the joy school girls arrived and I was so sad that they had to see him so sick but I was so grateful that they came. Amanda brought her daughter Sarah along with Taylor & Maelie. I met them in the lobby and they were excited and chatting until they got to his room where they got a little nervous and shy. The only thing I remember Jackson saying to them was "hey guys look at my hand" pointing out his sock / iv laiden hand. Other than that he laid in bed and gave some nods and head shakes. They brought cookies and fun pictures that he enjoyed later in the day.

 

Later on Jackson got a burst of energy and wanted to go play, he finally had clearance to access the play room but of course it was closed. But they let us go in and grab a toy. He chose the biggest thing there, this huge racetrack, but after a few minutes of playing his lack of energy caught up with him and he ended up laying in bed with it.

Poor little buddy, just wanted to play

He started falling alseep just laying there so we moved him over into the other bed with daddy and they both fell asleep

A little bit later Tyler's parents arrived with Abbie and they showed him some of the toys and cards Jackson's other good friend David had brought for him.

This sword, coloring book and Mickey are some of Jackson's favorite things months later.

I'm having a hard time remembering what happened that night, I think because it was fairly uneventful. Jackson remained slightly sick but wasn't complaining as much and just wanted to lie in bed for the most part. I headed back home with Abbie and Tyler's parents and Tyler stayed with him. Then Tyler stayed the night for the third night with him at the hospital.

The next morning things finally got better. Jackson woke up with energy, an appetite and had a desire to play! While he still was sensitive and not quite back to normal, this was such an improvement from previous days. Terry, Vicki, Abbie and I all headed over that morning and were thrilled to see Jackson playing again. The doctors came in and told us we could go home that day! We would need to go to a follow up in Hartford in 2 weeks, but were thrilled that this part was over. Our boy was better and we could finally go home. Friday was the day Tyler was supposed to graduate with his MBA class from UCF, but it really wasn't important to him anymore. It would have been great to be there, but we had luckily been to a dinner the previous weekend with all his classmates and faculty that was more intimate and memorable anyways. We just missed that time when they read his name and walking across a stage. But we had a mini graduation ceremony a couple days later.

Anyways, it was great to have a healthy boy again!

Borrowing more cars from the play room

Lining him up just like he always does

Playing outside in the big pirate ship playground with Grandpa!

It was so great to see him running in the halls

Playing music on the alligator

Walking out of the hospital, looking for Grandpa and our car

Finally able to get in the car and head home!

Excited to see his squirt gun was still in the car waiting for him

Walking in the house, FINALLY HOME!

Kawisaki Disease - Part 3

PART THREE - THE DIAGNOSIS AND TREATMENT

Tyler & Jackson woke up the next morning with no changes. But the new nurses came in soon and said he'd be having his ultrasound later that morning. After a small breakfast and more tv and ipad playing, Tyler and Jackson went downstairs for the ultrasound on his tummy. He was not super comliant in getting this done obviously but they were able to get the pictures they needed and this is where the answers finally started coming.

After the ultrasound they went back up to the room and Jackson was getting really irritable. He didn't know what was going on and just wanted to go home. Luckily just then Tyler's parents arrived at his room and Jackson was so excited to see his grandma and grandpa. They brought some new toys and puzzles and movies that helped him through the day. At this point I was home with Abbie so I could spend some time with her, we couldn't bring her to the hospital with the potential contagious disease he might have had.

Grandma and Grandpa arrive

While the group was all in the room a team of doctors came in to discuss Jackson's case. There were some of the normal rotating general pediatricians in addition to Dr. Jordan, an infectious disease doctor who came in later. They told us that the results of the ultrasound were alarming in that his gallbladder was swollen to twice its normal size. This was causing him lots of pain obviously and explains his behavior and lack of appetite. This along with all of the other symptoms was leading them to believe once again that he did in fact have Kawasaki Disease.

Once again, KD is an autoimmune disease in which the medium-sized blood vessels throughout the body become inflamed. It affects many organ systems, mainly those including the blood vessels, skin, mucous membranes, and lymph nodes; however its rare but most serious effect is on the heart where it can cause fatal coronary artery aneurysms in untreated children.

But the good news is we caught it before it could have a long term affect on our little buddy. I am so grateful for my persistent pediatrician who told he to go to the hospital! When we learned the news I was listening via speaker phone in the room so it was kind of hard to hear, but I was glad that at least we had an answer. Even though I was hoping it would be something with potentially less severe side effects.

The plan of action at that point was to give him an echo-cardiogram of his heart, make sure it looked ok, and just something to get a benchmark for future checkups. And the treatment was an IV pumped in his body for 12 hours to get rid of the disease completely. He was to be given what was called an IVIG which stands for Intravenous immunoglobulin. It is a blood product that contains the pooled, polyvalent, IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. It is given to people with immune deficiencies, autoimmune diseases and in this case, acute infections.

We learned that diagnosing Kawasaki can be tricky and the affects can be scary if not treated, but the treatment of IVIG is very stanrdard and routine and is actually the only FDA approved treatment for Kawisaki.

So at this point we had to wait again, wait for the echo-cardiogram and wait for the IVIG to be ordered, made and delivered. Vicki stayed at the hospital while Tyler and his dad came home and I returned to be with him. Once again, how blessed were we to have grandparents here for this, Jackson loves them so much and was great to have them there. When I got to the room they were actually just giving him the echo. He was getting a little restless at that point so I luckily was able to distract him with some of the toys I brought.

He finally ate some popcorn, during the long afternoon of waiting

Then it was a long long wait until they finally got the IVIG delivered that night. During that long wait they had to give him another IV since he wasn't drinking or eating enough. Ah that was great fun again, Vicki got to be there with me to see how much he screamed and fought that needle going in his hand. But luckily it got in and he got on IV and they could use that same drip for the IVIG later that night.

Tyler, Terry and Abbie all came to the hospital later that evening before the IVIG was put in, since it took 6-6 so long it was going to be in basically overnight from about -. They decided to give him some benadryl through the IV to help him relax and fall asleep before the meds were administered. It was crazy for me to see him fall asleep so quickly! As soon as he was out they started giving him the medicine and the nurse stayed in the room the first hour to constantly check his vitals. Things were going well and it looked like it was going to work!

Hooked up to the IV and the Benadrly worked!

Hooked up to the IVIG, and a blood pressure cuff on his ankle.

 I left the hospital with Abbie after it had been in for an hour. He was still asleep and Abbie needed to go to bed. Tylers parents stayed a bit longer before coming home later that night and Tyler once again stayed the night with Jackson.

I left my sweet boy all cozy with his blanket, hoping and praying that he'd be all better in the morning!

Kawisaki Disease - Part 2

PART TWO - THE FIRST DAY AT THE HOSPITAL

So Jackson and I pulled up to the hospital and I valet parked my car, the pediatrician had told me to do so. He had called the hospital to get a room for us so I was thinking I would be whisked away upstairs immediately. Not so much. After some back and forth we ended up in a waiting room with a lot of other kids who weren't so sick. Most were coming in for appointments with follow up treatment or x-rays. So no one was quite as panicked as I was. Luckily I had grabbed the iPad while home and it became Jackson's new best friend. He hadn't played with it in weeks so that made all that waiting ok. We waited for about 20 minutes before being called into a room where I gave my information, signed forms and then finally we were taken upstairs.

One of the first things Jackson said when we got settled in our room was, "Is this Connecticut?" It about broke my heart. The poor little boy had so much going on and knew we were moving soon so he was just trying to make sense of it all. We ordered some food, got some chocolate milk, met with the nurses and then waited for the doctors to see us. Jackson was doing ok during this all. He was a little irritable with all the new people poking into our room but had a decent amount of energy. The hospital had nick jr that I had on the tv and his iPad so he was happy about that.

Just getting situated in the room

Chocolate milk makes everyone happier

Jackson snuggled with me a lot that first day, I just wish I had showered...

 I can't remember exactly, but I think it was at least an hour later when a doctor came into our room. We saw a doctor and a resident who we saw often throughout the week Dr. Charles. They came in asking a lot of questions and Jackson sat playing his iPad. I went through the symptoms and concerns and they didn't say too much. When they tried to give him a check up Jackson wanted nothing to do with them. While he had been compliant to all of the pediatricians prodding he would not let them touch him. It made things quite difficult, but after all was said and done they were not so sure about Kawisaki Disease. His fever is quite low, and while he has some of the symptoms he was still in good spirits. Children with this disease are normally lethargic, and have no energy at all while Jackson played on the iPad just fine and had enough energy to hold his own during the physical. They weren't able to feel his stomach that well since he was fighting so much so it was hard for them to tell that his gallbladder was inflamed. 

They were pretty sure he had some sort of virus and now we just needed to figure out which one. They wanted to take blood samples to start testing for that. Dr. Coffman told me we should get an echocardiogram done on his heart and an ultrasound on his gallbladder area to see better if it was Kawisaki. They said they would order those for tomorrow if we were able to rule out the viruses. 

After they left I didn't know what to think. I had mentally accepted that he had Kawisaki and even though it is scary and can affect his heart, I had been so glad that they caught it early and was confident he'd be ok. Now I was confused, what virus can this be? And then will Abbie have it too? After the doctors came through they quarantined us to the room basically. Since he might have one of a dozen viruses he might be very contagious so he wasn't allowed to play in the playroom or wander the halls. The nurses had to put full on gowns masks and gloves before entering. It didn't seem right to me. 

When the nurses came into draw his blood I knew it would be bad, I just didn't know how bad. Yeah it was bad. I had to lay on top of him while 3 nurses tried to draw his blood. Between him moving and them not being able to find veins he still didn't have enough blood given after 3 pokes. They decided we'd go to a different room and get more experienced nurses. Our nurse I learned later had been there less than a year, and the techs assising her seemed young as well. Thirty minutes later or so we went in another room and tried again, this time they put an iv in his hand to get the blood. This was hard as well, but they got it. And then they left the iv drip in him so they could attach it later if they needed to get more blood. This was good and bad. Good that we could have his blood taken much simpler later, but bad in that he had this tube sticking out of his hand! They wrapped it in tape hoping that would keep him from playing with it. It worked for a while..

Jackson with his "awesome hand" he didn't think so sadly

After things calmed down I tried to get him to eat some dinner but he didn't have much of an appetite. He kept asking to go home. Nurses would come in and check him and his vitals always seemed ok, just a low fever. His rash would come and go and his eyes were still goopy and his face was really chapped. Dr. Coffman from the pediatrician office called the room to check in. I told him they were thinking it wasn't Kawisaki. He seemed upset, wondering why not. He wanted me to not give up in thinking that it was some unknown virus, have them do the ultrasound. I am so glad I listened to him.

Soon after the nurse came in and said they had ruled out a couple of the major viruses they were considering. This meant they had to draw more blood again and luckily they could do it from the iv already in place. They also scheduled an ultrasound on his liver area for the next morning.

During this time I was sending lots of texts to family and concerned friends, responding to instagram updates and comments and was on the phone with Tyler a bit. Luckily he got on his flight on time and arrived in Orlando before 10 pm. When he got to the hospital Jackson was still awake and happy to see Daddy but was not his normal self. We decided  it was best for Tyler to sleep at the hospital with him and I went home to be with Abbie who was still nursing once at night. Semra and family had put her to bed at home and were there waiting for me to relieve them of their duties. So I started gathering things to head home.

Right before I left I noticed a pool of blood next to Jackson, he had pulled out his iv. I had been watching so closely all day but the kid wanted it out. It ended up being ok because they had just drawn the blood and it probably helped him sleep better without it in. 

So I headed home and it was hard to leave my baby boy but I knew he would be better with Tyler. It felt weird leaving the hospital, weird that other people were having normal lives outside while my boy was sick with an unknown illness. It was also hard that it was a huge rainstorm and driving on the freeway was not fun with huge puddles everywhere. I learned from Tyler that Jackson had a huge meltdown a little bit later, he wanted to go home and was not calming down. Tyler slept with him in his hospital bed for most of the night and they slept alright.

Tyler's parents landed close to midnight and we had our good friend Todd White pick them up. Luckily the rain had stopped and they got to our house safely. What a tender mercy that they were coming. We chatted for a little bit and then I went to bed. Praying for my little boy all night.

Kawisaki Disease

PART ONE - THE INITIAL ILLNESS & DOCTOR VISIT

It's about time I blog about the event that rocked our world this year. As I said in the earlier post, Jackson started feeling sick on Saturday, April 27th. We had a really busy week ahead of us with Tyler's parents arriving Tuesday night, his graduation on Friday, a garage sale Saturday, and the house getting packed Sunday and moving Monday. So when we took his temperature Saturday afternoon and it said 102, I wasn't thrilled. At first the fever was his only symptom. He was a little lethargic but still had a good appetite. We had big plans for that night but ended up going to a quick dinner and stopped by Downtown Winter Garden.

The next day at church Tyler and I were both speaking in Sacrament Meeting and I was also giving a Young Womens' lesson. So yeah, there was no staying home option. Jackson got a very noticeable rash that day and by looking it up and talking to my mom I thought he had Fifths Disease, which is basically just a fever and a rash. Once the rash appears it's not contagious so I figured he was fine to go to nursery. He still wasn't acting totally normal though and his appetite decreased and I was hoping he'd feel better once the rash and fever went away. Tyler had to fly to Hartford later that night so I was on my home until he flew home Tuesday night and his parents arrived around midnight.

Monday was more of the same. Very low appetite and energy levels, he didn't sleep very well and still had a fever but the rash was gone. But then it would come back. I was pretty confused as to what it could be and I wasn't so sure it was fifth's disease anymore. That night he was so restless in his sleep that I had him come sleep with me in my bed.

Tuesday we woke up with some new random symptoms, he was peeling on his face, goopy red eyes and his lips were extremely chapped. Being a Florida boy I had never seen these symptoms on the buddy. It just confused me more and made me look up online what this could possibly be. When I couldn't find any answers I called the doctor and randomly all their phones were down. How does that happen? We went to the park for play group despite some bad weather. I thought Jackson would be happy seeing some friends and it was our last day to go! But the weather must have scared everyone else off and we were the only ones there. I had a beach towel in the car that I used to wipe down all the equipment for my kids to play, and then it started raining again so we left.

I called the doctor a couple hours later and they were still down so I called the main office in Orlando and luckily they could help too. I spoke with a nurse who thought it could be strep throat. It didn't seem right, but she thought I should come in regardless. I made an appointment for an hour later, right after Abbie would wake up from a nap.

Heading home from the park

 When we got to the doctor Jackson all of a sudden had a burst of energy and was so excited to be there. He was very compliant with all the pokes and prods from the nurse and waited patiently for the doctor to arrive.

Dr. Coffman came into the room and greeted us with a donald duck impersonation that intrigued Jackson and totally scared Abbie. Luckily Jackson was the patient and didn't mind the doctor at all. (Not the case in the least bit a few hours later) He asked a lot of questions and I answered the best that I could. Basically his symptoms just didn't add up and I was also wondering if it was something like an allergy because Abbie didn't have any symptoms and they share cups and food a lot so it might not be a contagious illness. He decided to do a throat swab to test for strep. I think actually this picture above was taken while we waited for that test result to come back. Both kids were being better than normal, which made it all the more shocking when Dr. Coffman came back in holding a large medical book.

He said it was not strep, not scarlet fever, not fifths disease and probably not an allergy. He was starting to believe it was Kawasaki Disease and that we needed to go to the hospital immediately. I was in shock and made him repeat himself several times. What is this thing called? Kawasaki? Like the motorcycles? Seriously the hospital right now? Why? What's wrong? What do I do with my other baby? My husband is out of town! We are moving on Monday! And there were some tears flowing for sure. But he told me the main reason he was so confident of Kawisaki was the tenderness of the specific area on his tummy near the liver and gallbladder when he applied pressure there. That is a sign. He didn't have all of the symptoms but the major ones are fever, rash, dry skin and conjunctivitis of the eyes. He had all those. But normally you have a very high fever for at least 5 days, his wasn't too high, the highest was 102 the first day and had just started 4 days prior. He didn't have swollen hands or feet  or swollen lymph nodes or a strawberry red tongue. But Dr. Coffman had diagnosed this a few times before and is most common in boys his age. It's not known how children contract the disease, but it can permanently damage the heart if not caught fast. Hopefully we caught it fast and he'll be fine. It could be another virus also, but its tricky because there is no sure way to test someone for the disease. It's pretty much diagnosed by ruling out others and matching up the symptoms. But he was betting Kawisaki and had already called the hospital to start arranging a room for him at Arnold Palmer Childerns' Hospital (across the street and connected to Winnie Palmer Hosptial where I delivered my babies)

We left the doctor and headed home to get ready for the hospital. I made some calls and arranged for Semra to come over and watch Abbie. She ended up staying over at the house until 10 that night, bless her heart. Anyways, I also called Tyler called my family and started packing overnight bags for Jackson and myself. I had no idea what was in store. Tyler started looking things up online and tried to reassure me that he will be ok since we caught it so fast. He tried to switch his flight to earlier but he was already on the earliest flight out that night. So he would get in at 10 pm, I think the dr appointment was at 130, and we were home getting ready for the hospital at 2:45. Semra came over with her two girls and I headed off with Jackson to the hospital. He was watching Brave in our new DVD player in the van and had no idea what was really happening...

To be continued

Family Pictures

Who would have known that this was our last normal day with healthy kids in Florida. We had Abbie's One Year Old Photo Shoot taken a couple weeks after her birthday, it was hard finding a day that worked with Tyler! But anyways we decided to do the shoot at Magic Kingdom celebrating the end of an era and having proof that the little girl spent her first year of life there whether she remembers or not. We ended up getting a few pictures of Jackson and the family but Abbie was the focus. And Abbie decided to not be super easy to work with. This momma's girl didn't like it when momma set her down and walked away for the pictures. But we did get some good photos that can go along with the ones we had taken of Jackson at age one.

These pics were taken Friday, April 26th and the next day Jackson got a fever and was sick for the rest of the weekend. Tuesday we took him to the doctor, and the rest is history. But I'm so glad we had this last day captured on film before our lives were turned upside down.

Abbie's First Birthday Party

When I found out we'd be moving to Connecticut in April or May I made Tyler promise we'd be able to still be in Florida for Abbie's birthday. I don't know why but I really wanted to celebrate her first year in the same place she was born before having everything change so dramatically. Luckily we were able to have her birthday and party at home :)

I decided to go with a fishy theme for her party, she loves animals and is our little fishy so we went with it. I was planning to have the party at the park near our house but that day the weather was chilly, windy and supposed to rain. An hour or so before the party began we decided to just move it to our house and it ended up being better there anyways.

We had fish food, Tuna Fish & Jellyfish Sandwiches, Goldfish, Etc Etc, and each kid got to take home their own mini goldfish bowl. There would have been more decor and fun at the park but it ended up being low key at the house.