On Thursday February 15th we received the call we had been waiting 3 years for. Jaxsons transplant team in Pittsburgh found a perfect match for him. A million thoughts and emotions immediately flooded my mind. This is it, this is what we have been waiting for. Nothing could prepare me for that phone call. Nothing. We flew out of Arizona on a MedFlight around 8pm and arrived in Pittsburgh three hours later. That night/early morning consisted of a lot of labs and a chest X-ray followed by 4 hours of sleep. We were woken up by one of the transplant surgeons around 7:45 who told us surgery was definitely happening and it would be around 3pm. There was a chance that the team could go procure the organs and find that they’re not viable or suitable for transplant, so to keep myself from getting my hopes up i kept saying “it’s not transplant time until he’s getting wheeled back to the OR.” And when his nurse came running down the hallway saying “Get ready, we’re going” all those emotions came flooding back and i had a hard time keeping it together. This is it. It’s really happening. Jaxson was taken to the OR waiting area around 4 and wheeled back around 4:30. The surgery can last anywhere from 8-16 hours. He’s got a long road ahead of him, but just look where he’s already been. He’s a warrior.
I am incredibly amazed at the strength of our donor family and forever grateful for their decision to donate life.
2017 was full of a lot of growth, memories and no hospital admissions. It was truly one of the best years yet. Here’s a quick look back at the last 12 months;
Unfortunately 2018 is not off to a great start. Jaxson had surgery to place a g-tube on December 22nd which required an overnight admission for observation. He came home the following afternoon and was able to spend Christmas with us. His g-tube site remained sore, as expected, but on Friday December 29th he seemed more tired, had some drainage from the g-tube site accompanied by a slightly elevated temperature so just to be on the safe side I took him to the ER. They drew labs to check for a line infection (protocol anytime you have a fever with a central line) and took a culture from the g-tube site. This required an admission to start antibiotics while waiting to see if anything grew on either of the cultures. His surgeon saw him the next morning and didn’t think the g-tube looked infected but he stayed another day to see what grew on the broviac culture. So on Sunday afternoon (New Years eve) since nothing had grown and the g-tube looked normal, Jaxson was discharged. He came home and acted normal, he watched us light off fireworks and then around 9pm we laid down in bed. At 10pm I got a call from the hospital pediatrician saying he had just been informed by the lab that one of the cultures drawn on the second day came back positive for yeast in Jaxsons blood. He thought maybe it was a contaminated specimen since the culture drawn the day before was still negative but he still wanted us to come back to be admitted so they can redraw the labs. At 12am I received a call from the hospital that there was a room for Jaxson, so we headed down there shortly after that. By the time I got there at 1am, the pediatrician told me he received another call saying that the first culture came back positive too. So at this point it’s probably not a contaminated specimen as he had originally thought. All signs were starting to point towards a line infection. With these kinds of infections, the recommendation is to start antibiotics and pull the line as soon as possible. Then they will wait a couple days until the infection is cleared and they will place a new central line. They have to wait until it’s fully cleared because if you place a new line while bacteria is still present the new line will likely become infected also. So this morning Jaxson had his central line removed and they placed a peripheral IV to administer his TPN and antibiotics. They’re hoping to have a new line placed by Friday or Saturday. So from now until then it’s pretty much just hanging out at the hospital. Here’s to hoping that the rest of the year is as uneventful as the last.
The last time I posted was Jaxson’s first day of school- he has gotten back into his routine and loves it so much. School obviously plays a huge part in his progression and he is learning so much lately. We have a little alphabet toy here at home, and the other day I pulled it out and just started saying the ABC’s. After a couple letters, I stopped and Jaxson kept going. Then I pointed to each letter and asked him what it was, and he was right every time. I then went to the numbers and started counting and he went to 12 all by himself. (He tried to go into the teens, but those numbers weren’t as clear.) This was a pretty big surprise to me because while I knew he could sing the ABC’s, I didn’t know he knew every single one visually yet. He knows his shapes and colors as well and is also starting to use 3+ words to form a sentence. He’s starting to be able to express his wants and needs a lot better. I knew all of this was in that little brain of his, he just needed a little extra time figuring out how to get it out.
Jaxson is still doing well medically and it has been 12 months since Jaxson’s last ER trip and hospital admission. A WHOLE YEAR. I’m pretty positive this is the longest he has gone being hospital free since he has been born! It’s been amazing to say the least. But, thats not to say we haven’t been busy the last year…
I’ll start off with the neurology/orthopedic follow ups for his leg issue. Since the MRI and EEG that the neurologist ordered both came back normal, we went back and saw the orthopedic surgeon. He examined the way Jaxson walks and looked at his bones/feet. He didn’t notice anything abnormal, and he said that he walks the way he does because of lack of muscle in his legs. Once he grows and gains enough strength, he should correct himself. Physical therapy at school will also help him with that. So he doesn’t need any kind of leg braces or extra support which is good news.
He has also had three blood transfusions since September (One a month), because his monthly labs started showing severely low Red Blood Cell Counts. Shortly after the first transfusion, his labs were drawn again and his RBCs were lower than they should’ve been given the fact that he was just transfused and he’s had no signs of bleeding and it has kept happening each month after that. His hematologist doesn’t think it’s an iron deficiency as his body actually had too much iron at the time it was tested. Thankfully, these transfusions are able to be done as an outpatient and they’re not invasive at all- but I wish we could figure out why this keeps happening.
In October Jaxson and I flew to Pittsburgh for his yearly follow-up visit with the transplant team. Like always it was a quick trip, we flew in one day and out the next. They are keeping him on the transplant list as a status one. And when I had talked to his transplant case manager, she said he was next on the list for his size and blood type- so I guess that means we’re hopefully a lot closer to getting “the call.” I brought up his frequent anemia to see if maybe they had any suggestions. They looked at the meds he was on and any possible side effects relating to anemia and noticed one medicine he was on (the octreotide that has seemed to stop his GI bleeds) had reports of it causing hemolysis (Destruction of red blood cells.) . After finding that out, they figured it was best to wean Jaxson from the med and see if it helped his anemia. Our home health pharmacy got those orders this week and will go down slowly week by week and he should be off it within the next month or so. I’m crossing my fingers that this corrects his anemia and that Jaxson doesn’t have any GI bleeds once off this med. Another thing that was brought up at this appointment was a G-tube. Jaxson had one placed before he left the NICU back in 2013, and it stayed in for about a year after that. It was taken out because it wasn’t being used at the time (he would take his feeds orally then.) and because it was causing problems. Lately, his GI doctor has wanted me to try small feeds, and so I tried to place an NG tube but since it was out for so long and Jaxson is older (and still stubborn) there was no way that he was keeping it in. I’ve talked to his GI doctor in the past about the possibility of placing another G-tube, but she said she wanted to hold off because the transplant team would do that at the time of transplant. So since we had the appointment with them, I figured I would ask them if it made a difference if he had one placed before transplant and they said no and that it would actually be beneficial to have one placed now so we can start small feeds to keep the small amount of intestine that he does still have healthy and functioning. They also ordered an ultrasound to check his vessels for venous access (to make sure that he’s not running out of places to put a central line) and an ultrasound of the liver to check for portal venous thrombosis- which is blockage or narrowing of the portal vein (the blood vessel that brings blood to the liver from the intestines) by a blood clot. We will get those results back in a few days. We have a date set for the g-tube surgery, but depending on the results from the ultrasound, that could change and they may not want to go through with it just yet.
That’s about all there is to update on, as always thanks for reading!
Mr. Jaxson started school again on Wednesday. It’s his last year of preschool, and it was kind of hard to transition him back in after the summer. Last year he took the bus which surprisingly he had no issues doing that. I think it gave him more of a steady routine (routine is so important for special needs kids), he looked forward to getting on the bus every morning- he knew where he was going and what was happening from the get go. But, this year I’m driving him and dropping him off and he’s not sure what to think. Yesterday he cried, so I walked in the classroom with him & he told me to sit. I talked to him a little bit and told him he was at school and to play with his friends and mama would be back to pick him up. He still wasn’t having it so after a few minutes I left him with a teacher and walked out knowing a couple minutes after I was gone he would be completely fine- and he was. Yesterday (his second day) as soon as he saw the teachers he cried but I didn’t walk all the way back with him- again I have no doubt that he was fine once they got in the classroom. It’s just going to take some time to adjust to his new routine, but I know he’s so excited to be back and make new friends. I’m also really happy that despite him not going to extended school year, he did not regress one bit- instead he progressed a lot! I’m confident that by the end of this year he will be ready for kindergarten!
When I was on my way to pick him up from school yesterday, I got a call from his transplant coordinator (let me just say, I have a mini heart attack whenever I see the area code 412 pop up on my phone- I never know if it’ll be The Call). So I stared at it for a couple seconds, took a deep breath and answered. It was his transplant coordinator just reminding me that he is due for a follow up appointment in October and to schedule it. So Jaxson and I will be off on our yearly weekend getaway on October 24th. Anyway, we got to talking about where he is on the list and she told me that he is no longer a status one, (from my understanding that means critical). He was only a status one during the time he has his GI bleeds. Since he is no longer listed as a status one, he will receive priority through his PELD (pediatric end stage liver disease) score. PELD scores go from 6 (less ill) to 40 (severely ill). His PELD score is 22. He is also at the top of the list for the A blood types listed at Children’s Hospital of Pittsburgh and while that is good news, there’s still no exact answer as to when his transplant will happen. They are in competition with other centers in their region and we just never know when they will get an offer that exactly matches him. So for now we will keep waiting….. 💚
As always, thank you for taking the time to read this and continuing to stay up to date on my little warriors journey.
Today is Gastroschisis Awareness Day! If you have a JaxsonsGotGuts shirt today is a great day to wear it. If not, green is the awareness color. If you take a picture wearing Jaxson’s shirt or any green one, please use the following hashtags on social media to help bring awareness: #JaxsonsGotGuts #GastroschisisAwareness #AverysAngels.
Gastroschisis is a birth defect that causes the intestines, and sometimes other organs, to protrude through a hole in the abdomen. 1 out of every 2229 babies is born with gastroschisis, and that number continues to increase. It can be detected through an ultrasound during pregnancy, but you often won’t know the severity of it until the child is born. If you or someone you know has a child born with Gastroschisis, Avery’s Angels in a great place to get info and support. You can click here for their website, and here to follow them on Facebook.
So, it’s been awhile since my last blog post & this one won’t be a long one because Jaxson is seriously doing so well right now. Despite a couple minor hiccups with his central line nothing major has happened. Yesterday was one of the hardest days in awhile- his home health nurse came to draw labs and couldn’t get blood return, so I suggested trying to poke him. These labs were requested last Friday and we were out of town so I had to reschedule; they’re kind of important to keep his place on the transplant list & we were already going on day 5 after they were requested. Anyway, I immediately realized that I made a bad decision because I remembered how hard if a stick he was (to get IVs in, multiple nurses & an ultrasound is involved). So after holding him down for ten minutes trying to find a good vein, myself and the home health nurse decided it was best to wait another day until they could administer a clot buster in his broviac in order to get blood return & draw labs through the line without pain. No matter how many times I do it, holding my child down while he’s wiggling and screaming does not get easier.
This morning we finally had the follow up appointment with neurology. They called me with results after the EEG and MRI came back and all was normal. At at this appointment she went more in depth and explained two more options to explore before going back to the orthopedic doctor to assess his leg/foot problem. One option was genetic testing and the other was an MRI of the spine. The MRI will require anesthesia and the genetic testing will just be added into next months labs.
He starts school next week and I know he is so excited and ready to get back into his routine. I haven’t noticed any regression this summer which is so good. He has learned so much, including more words, he will try to sing along to the ABC’s and count to 5. It’s amazing to finally see constant progression.
Lastly, I’d like to mention that Sunday (July 30th) is Gastroschisis Awareness Day- which would be a great day to wear your JaxsonsGotGuts shirt and post to social media using the hashtag #GastroschisisAwarenessDay and #JaxsonsGotGuts. I’ll be writing another blog post on that day with facts and Jaxsons story.
I’ve been wanting to post an update, but it’s been kind of busy around here with school ending, moving, and some appointments. Nothing too crazy, though. (Which is how we like it.) So, back in February Jaxson saw an orthopedic surgeon to assess the way his legs turn out when he walks. That doctor immediately referred us to a neurologist because he wanted to make sure it wasn’t a neurological problem related to Jaxson’s prematurity & developmental delays. The neurologist ordered an MRI & an EEG. The MRI was done under general anesthesia, it took about an hour and the results showed volume loss- which is commonly seen in premature babies and doesn’t normally affect anything but it explains his developmental delays, it showed no bleeds, no structural abnormalities and everything looked good. It did show his sinuses were inflamed due to a recent sinus infection & his primary care physician ordered oral antibiotics. (Wish me luck y’all- this kid fights oral meds like crazy). I went to pick up the antibiotics tonight & apparently coverage stopped May 31st- but he has been receiving IV infusion meds weekly with no problem? I was a little irritated. Anyway, his EEG was done about a week after the MRI and he was suppose to be sleep deprived, which he was, but whenever he is in a hospital setting he isn’t going back to sleep unless he’s super tired- so they had to use a sedative for that. Even with a sedative, he fought going to sleep- it took about 45 minutes for him to be fully asleep and the EEG itself only took about 20 minutes to complete. That also came back normal. We follow up with the neurologist in July, so I won’t know until then what happens next. Since his leg still bows out a little when he walks, I assume we will also follow up with the orthopedic surgeon to see how to correct it. I’m hoping it doesn’t require anything too excessive to fix, because this kid has already been through enough. It may even resolve on it’s own- we will see.
Aside from that, there really isn’t anything else to update on. As I keep saying, Jaxson has been doing exceptionally well & though he still has some obvious battles ahead, he continues to thrive daily. We’ve been working on his speech and language quite frequently and he really has come a long way in such a short amount of time. Thank you everyone for the continued support.💚
Jaxson’s story is finally on the website “Liveonaz.org”. You can read his story and register to be a donor in his honor. All you need to do is click the yellow heart (💛) and fill out the form. click here to read the story & register. If you think you’re a donor but aren’t sure, there’s no harm in registering again!
Someone is added to the transplant waiting list every 10 minutes.
8,000 deaths occur every year because organs are not donated in time.
118,000 men, women, and children are awaiting a lifesaving organ transplant.
95% of Americans are in favor of being a donor, but only 54% are registered.
People of all ages & medical histories should consider themselves potential donors.
All major religions support organ, eye & tissue donation as a final act of compassion & generosity.
An open casket funeral is still possible; the body is treated with care and respect.
Registering as a donor does not affect your patient care. The doctors trying to save your life are separate from the doctors who remove your organs. Organ donation isn’t even talked about until death is declared.
If you’re still not sure if you want to become an organ donor, I encourage you to research it more, talk to people, and read the stories; it’s one of the most amazing, and selfless things you can do. It’s heartbreaking to me knowing that in order for my child to live a more normal life, a child has to lose theirs. But i’m always incredibly thankful when I stories of parents choosing to donate their child’s organs. Knowing that we have the opportunity to give someone the gift of life is phenomenal.
Normally I would do an update, but nothing has changed since I last posted. He’s currently getting over a little bug, but thankfully it didn’t require a hospital visit. He’s still learning more words and is continuing to talk more and more every day. We’re getting ready to spend our weekend up north, we’re looking forward to getting out of the city and enjoying cooler weather. 🙂
Thank you everyone for your continued prayers & support. ❤️
I have delayed posting this because I was told recently that if I publish Jaxson’s story to one of the Donate Life websites, people could register to be organ donors in his honor & I wanted to put the link in this post. I submitted his story 2 weeks ago & it’s still not on the site, so I will write a separate blog post when it is published.
I’m so amazed to see how much love and support Jaxson & our family have from our community. On Saturday, Shawn, one of Jaxson’s teachers organized a garage sale; people donated items to be sold, & volunteers showed up to help set up. We couldn’t have asked for better weather that day, and the sale was successful. With the help of our community, we were able to raise over $2000 to help reduce some financial stress during & after Jaxson’s transplant. I am incredibly thankful for the time and effort put forth by Shawn & all the volunteers who made this happen. Seriously, thank you all so much- it means so much to me that you took the time to do this. Shawn’s daughter, Kyley, also made a video of Jaxson’s journey (and did an amazing job). You can view it HERE.
On Sunday April 30th, a woman named Ashley Foster, who is an organ recipient, represented the transplant community at a local Diamondbacks baseball game. She threw the first pitch & honored both organ donors and recipients by wearing a shirt filled with their names. Jaxson’s name was one that was listed. (It’s on the back, to the right and towards the bottom.) I’m sure that was an amazing experience for her, and so special that she wanted to include other people who have been affected by transplant.
Mr. Jaxson has been doing wonderful lately. He hasn’t been admitted to the hospital since December. That’s 5 months. Fiiiiive whole months, guys! This is our longest stretch without a hospital admission since- I don’t even know (its been soo long). But we’re loving it. His progress definitely shows it. Usually, when he has repeated hospital stays, he will regress- sometimes a little, sometimes a lot. It’s always one step forward, two steps back. So during those times, his progress wasn’t as noticeable- because he would learn one thing, but stop doing another. Or he’d become so stressed out that he wouldn’t learn anything for weeks. Lately he’s been learning/trying something new every day. He repeats words. It started when he wanted sips of water, I told him to say “water” in sign language. Instead of signing it, he said “wawa.” The day before his birthday, I kept telling him to say four. I’d say “how old are you?” and eventually, he would say “Four.” Then, his nurse worked with him to spell his name- not even long at all. Maybe five minutes in and he was trying to repeat all of the letters in his name. His pronunciation isn’t perfect, obviously. But he’s trying, and a lot of them he repeats spot on. He recognizes his name when written, and will try to say it. He will repeat his ABC’s, some numbers, and now says car, truck, sissy, mom, dad, bye, and dog without me telling him to. He’s finally to the point where whatever it is, if I tell him “Jaxson say____,” he will say it. It’s seriously amazing. For the longest time, anytime I would ask him to repeat something, he would instantly get frustrated. Even when he learned signs, he never did them unless he was asked. I really think his speech device is helping him be able to verbalize a lot more, because he’s able to push a button and hear it over and over. He’s going to be talking up a storm soon. He takes sips of water out of a sippy cup- which is another big deal. He’s still not interested in anything other than water, or eating food, but I know he will get there. He’s interested in toys now, more than he’s ever been. Some of his favorites are Mr. Potato head, monster trucks & play-doh. Our next goal is to get him to do more imaginative play & make sounds. An example- when he’s playing with the monster trucks, he’ll say vroom vroom or bang when it hits something, or when he’s playing with his potato heads, he’ll act like they’re talking to each other etc. Again, at the rate he’s going, I know it won’t be long until he completes that goal either. Before he started walking, I remember thinking he never would, or it would be forever until he did. Then one day he just got it and soon after he was running, so I know soon this will all be in the past & he will be all caught up; he just needs a little extra time to develop. It’s amazing to look back and see how far he’s come in such a short amount of time. I know to some, these accomplishments may seem small, but to us they’re huge & worth celebrating. Watching him grow and learn new things has been wonderful.
Thank you everyone for your continued prayers & support, we appreciate it!
Since it’s Jaxson’s birthday, I wanted to share his birth story.
After I found out Jaxson had gastroschisis, I stopped seeing my regular OBGYN and started seeing a high risk one. They were able to monitor & follow my pregnancy more closely. At one of my appointments a few weeks before he was born, he had a high heart rate so they hooked me up to monitors in the office & waited until it came down. On April 22nd, 2013 I went in to the ER because I was experiencing contractions- different than the normal Braxton hicks I would often feel. They drew labs, checked for infection, and did an ultrasound. Everything came back normal, they told me I was dehydrated and gave me fluids then sent me home. Contractions stopped for the most part, but I would still have one or two every so often. The night of April 24th and into the morning of April 25th, I got absolutely no sleep and was having more painful contractions. I called my doctor and they advised me to be seen right away. So, off the the ER I went, again. *Side note- I didn’t go to the hospital Jaxson was going to be born at, because this one was closer to my house and I figured they’d send me home anyway.
I remember walking in and feeling like he was just going to fall out- (tmi? sorry) Once I was in the ER, they checked to see how far dilated I was, and to everyones amazement, I was at 6 centimeters & 100% effaced. They started IV fluids, gave me one shot of steroids to help his lungs, and terbutaline to try and stop contractions. The terbutaline was the worst, it made me so nauseous. The doctor told me I needed to be admitted, and I was so out of it I just said “Okay.” My mom thankfully chimed in and said if I were being admitted, I needed to be transferred to a different hospital with a level 4 NICU, because of Jaxson’s birth defect. They didn’t feel comfortable transporting me via ambulance, so a helicopter was called in to fly me to the right hospital. It was a quick probably five minute flight, but still pretty scary. My mom went home to grab some things and met me there. Once I was settled in to a labor and delivery room, my doctor came in and told me the plan was to keep him in at least another 48 hours so he could get the second dose of steroids. It was about 12pm now and my contractions have subsided, and I haven’t dilated any further than a 6. I kept asking if I could get some food, but the doctor kept saying no. I was able to eat ice chips and a popsicle. Finally, after no signs of progression, at about 5pm they told me it would be okay to order a light meal. So I ordered soup & a salad. As soon as it arrived, I was about to take my first bite and had a big contraction. The nurse noticed it on the monitor and came in to see how I was. I felt fine. The doctor came in shortly after and checked me and I was dilated to 9 centimeters. She called out for an emergency c-section, and I was being wheeled into the operating room around 6:30pm. The doctor and anesthesiologist argued for a couple minutes about how to administer my spinal; typically they want you sitting up, but my doctor wanted me laying on my side because if I sat up, I would be giving birth on that table. He finally agreed with her, and the rest is a blur to me. At 7:07pm, at just 30 weeks gestation; a warrior was born. He weighed 4 pounds 3 ounces and was 16 inches long. I vaguely remember hearing him cry, and they brought him over to see me for a split second. While I was getting stitched up & heading to recovery, he was on his way to his very first surgery at minutes old. My mom showed me a picture of him & I was able to physically see him for the first time the next morning.
Every time I look at pictures of him in the NICU, it’s like i’m there again. I remember every detail, every feeling and emotion. I can hear the beeps, and smell the smells. That time in our life is one that I will never forget.
Today he is a vivacious, loving, and courageous four year old. I know it’s said by parents everywhere, but It’s so amazing how fast time really goes by. He has taught me so much about love and life, and he doesn’t even know it. His bravery is admirable. His growth is remarkable. He is inspiring. I can’t wait to see what he continues to blossom into. ❤️
Below are some pictures of people wearing their shirts to honor Jaxson.