One month post transplant

One month post transplant and Jaxson is still actively (and severely) rejecting. They are trying what I believe is the last drug there is to try, which is called Campath. This drug in simple terms, is going to put his T cells (which help your immune system attack things) “to sleep,” because those are playing a big role in the rejection. I’m really hoping this helps because he’s been through so much, and has been on so many different drugs- he deserves a break. He will have another scope/biopsy Monday & Thursday- Monday may be too soon to see if there’s any improvement with this drug, so hopefully by Thursday we will have some answers and get back on the right track.

He is still intubated and kind of sedated going on 5 days now. To prepare for extubation this afternoon, they’ve gone down on his fentanyl and ativan so he’s not super sleepy. He was awake and pretty agitated (which would’ve been a good time to remove it), but he got pre-medicated (Tylenol & benadryl) before his Campath so he’s been pretty sleepy again the past few hours. The transplant team came by and looked at him, and they didn’t seem to want to extubate immediately, but the PICU team does. So if he wakes up again tonight they will remove the breathing tube, if he remains sleepy/comfortable they will wait until tomorrow.

They removed his Vascath (the catheter in his IJ/neck) because it was only being used for pheresis and they don’t plan to do anymore of that, so there was no more need for that catheter. They started him on lovenox injections today because of the blood clot in his right arm where his PICC is. They’ll let those work for a few days, do an ultrasound to make sure the injections are treating the clot and then pull that line as well. His blood pressures have been looking good, so they went down on his blood pressure meds today. One of the ICU doctors mentioned pulling his arterial line, which is a catheter placed in an artery and is able to give them blood pressures constantly. But his nurse, bless her for advocating for him, told them to reconsider because yes removing lines is a good thing, but is it really a good idea to start removing it before we’re absolutely ready then risk the chance of having to place another one in a couple days? If theres nothing wrong with it, it just makes sense to leave it, especially while it is still being utilized. So we will see what the final decision is on that in the morning.

That’s all the updates I have for now. Please keep praying & sending all your positive thoughts our way!

Since Jaxsons room number seems to be changing more frequently than we anticipated, it might be easier to start sending cards & packages to the Ronald McDonald House:

Ronald McDonald House

C/O Katherine Dahl #1205

451 44th st

Pittsburgh, PA 15201

You can also send ecards on the hospitals website & they will be printed and delivered to his room:

The hospital is Children’s hospital of Pittsburgh and his room number is 514.

And if you’d like to donate or share our fundraiser page:

Jaxsons Transplant Fund

Thank you everyone for your continued support. 💚


It has been awhile since I have updated the blog, and I wish I had some good things to write about but unfortunately things started to go downhill again. Jaxson’s body is still rejecting the organs. He has been on a second anti-rejection med (Thymoglobulin) as well as steroid boluses. Together, both of those meds have a lot of side effects; high blood pressure & high blood sugar being the two that Jaxson had problems with the most. Around 3am on March 6th, his nurse came in to give him his scheduled pain medicine (the previous day he had started complaining of more pain) and she noticed he wasn’t acting quite right. He would respond when someone talked to him, but he wouldn’t look at anyone. I got up to see if I could stimulate him with no luck. The ICU doctors were called in. A few seconds later his oxygen dropped and he started seizing. The whole thing lasted about 5 minutes but it was still a scary experience. He was transferred to the ICU, they did a CT scan, and an EEG. The CT scan showed something called PRES (Posterior reversible encephalopathy syndrome) which was brought on by the high blood pressure from the meds to fight the rejection.


Since he had been on the rejection treatment meds for about a week now with no significant change, they decided to start something called plasmapheresis. This removed his blood, then separated and replaced the plasma. It lasted about 3 hours and was done once a day for three days. The reason for the plasmapheresis was because he had high antibodies. Typically, thats a good thing. Your immune system naturally forms antibodies to fight against infections and viruses. But, they also want to attack transplanted organs because they see it as something foreign. So, they removed his plasma which is where these antibodies were forming, and replaced it with new plasma.

He stayed in the PICU for about a week with no more seizures and his blood pressures seemed to be stabilizing, though he was still in a lot of pain. He was moved back up to the transplant floor on Saturday. Monday morning (today), the doctor came in to look at him before his scope/biopsy and noticed his ileostomy had prolapsed from him crying and being agitated. He had been on narcotic pain meds, which made his breathing slow down more while he slept, so they decided  to move him back down to the ICU after his scope. He was sedated for the scope/biopsy and will remain that way until at least tomorrow so they can get his breathing, and blood pressures more stabilized. It will also make him more comfortable pain wise, and less agitated.

We are praying that todays scope/biopsy showed a lot more improvement since the plasmapheresis because we are seriously running out of options on how to treat this rejection. There is one more med they can try but they don’t like to use it unless they absolutely have to. It suppresses the immune system so much and for a long time that he will literally pick up every single virus. 

Praying for better tomorrows.

We’ll figure the rest out.

Thank you so much again to everyone who has sent cards, toys, and words of encouragement, we appreciate it so much!

Jaxsons Transplant Fund



We’ll figure the rest out.

The other day, I was reminded of a previous blog post I had written and I mentioned an article on parenting a premature/medically fragile child. There was a specific quote in that article that I loved, and in this moment it is exactly what I needed to see. I needed that reminder. (Thank you Shawn.) We’ve been in the hospital two weeks now and knowing that we still had months to go, I could feel myself getting more emotional with each day that passed. Which I think is par for the course, I don’t think anyone could go through what we’ve gone through and not break down at least once. So I needed to see this quote and remind myself of it everyday in order to get through this.

It doesn’t matter how frequently we visit the ER or how long he’s admitted, because as long as he lives we’ll figure the rest out.

In a way, this quote has also reminded me to focus more on the positive and less on the negative. I am so happy to be in a hospital that strives for excellence and is dedicated to patient care. Im glad we have a transplant team who are thoroughly educated, and know exactly what they’re doing during every step of this journey. I’m grateful to have an amazing support system back home who make me feel less alone during this journey. I’m incredibly thankful for our anonymous donor family who chose organ donation and gave Jaxson a chance to have a healthy, “normal” life. So even though we are almost 2000 miles away from home, both of us are going stir crazy in this hospital room, and some days are harder than others: As long as he lives, we will figure the rest out.

Jaxsons biopsy & scope on Thursday showed the rejection was severe. The doctors expected this since he had only been on the extra dose of the anti rejection medicine for two days. Since then, he has improved more and more each day. The rejection caused him to be in some pain, but for the last two days he hasn’t needed any pain medicine. Physically he is improving so we can only hope the the scope & biopsy on Monday will show that he’s improving internally as well. Unfortunately, since the rejection he has needed extra doses of steroids too and this caused his blood sugar to increase significantly. So yesterday he was seen by an endocrinologist and she ordered insulin for the time being. Yes, this means he is poked with a needle multiple times a day (hopefully the pokes will lessen each day). But child life here is great and gave his nurse a box of toys, so after each poke Jaxson gets a prize and he soon forgets anything even happened. He’s more willing to get up and play again, and likes to get out of bed and sit on the couch with me. That’s about all I have to update on as the rest is just a waiting game. Thank you everyone who continues to send cards & gifts and just be there for us. Jaxson really loves getting mail everyday. 🙂


Post transplant day 10

So last night (2/25), Jaxson spiked a fever and seemed to be in more tummy pain than he was earlier. The nurses drew cultures from every line & peripherally, did a urinalysis and swabbed his nose to check for viral infections. They did this to cover all of their bases & find the source of the fever since not many signs led straight to rejection. They started antibiotics immediately and stopped feeds as well. This morning he went down for his ileoscopy and biopsy. The scope looked normal & the stoma appeared swollen but they thought maybe that was just from the extra fluids given last night since the color still looked good. The biopsy results would take a few hours to come back but in the mean time, the urinalysis from last night came back positive for a uti and the nasal swab was positive for two different colds (rhinovirus and enterovirus). The doctor ordered a CT scan, and for that had to place a peripheral IV- which they finally got on the third try. And guess what? Since both the urinalysis and nasal swab came back positive, they figured they found the source(s) of the fever and cancelled it. Three IV pokes for nothing. :/ Around 4:30, the biopsy results came back and showed the intestine was definitely in rejection. This of course is likely the main cause of the fever and tummy pain. The plan is to give him steroids today and tomorrow, as well as a second anti-rejection med tomorrow morning and hopefully that will knock it out. They will do another biopsy Thursday to see where things stand and go from there. His doctors anticipated him rejecting at some point and typically isn’t as bad as it sounds. So I’m praying the intestines will respond well to the extra meds and he can get back on the right track again.

Post transplant Day 6

So, I want to put some peoples minds a little more at ease with some information I’ve been learning over the last couple of days. I also want to mention really quick that while this transplant was needed to improve Jaxsons quality of life- it comes with its own set of potential complications. He will be on anti-rejection meds his whole life. That alone comes with some risks. (Weakened immune system). Like I said, this was desperately needed, but sadly modern medicine isn’t to the point yet where we can put a different organ in our body and have it be 100% okay.

So with that being said- rejection is the number one thing we worry about, though it isn’t as scary as it sounds. If he were to go into rejection, they would increase the dose of his anti rejection meds and maybe add a couple new ones until his body accepts it again. One good thing about transplanting a liver with an intestine is somehow it decreases (but doesn’t eliminate) the chance of rejection. There is also more chance of the intestine rejecting than the liver, but again either can reject at anytime. Just because one organ is in rejection does not mean the others are too. They are able to tell if the liver is rejecting by blood tests, but are not able to see if intestines are rejecting until they do a scope & biopsy. Another thing we worry about post transplant is infections. The anti rejection meds are suppressing his immune system so his body doesn’t fight off (reject) the new organs. The more anti rejection meds he is taking, the lower his immune system is. He will be on these meds his whole life, but the dose will likely decrease the farther out from transplant he gets. We’ve been told he doesn’t have to live in a bubble, but to use common sense. 😊

Jaxson had his first scope and biopsy today and everything went great. I was able to be in the room with him and he didn’t cry once. They put the scope about three inches into his ileostomy, took a couple pictures & did the biopsy and it was over in about five minutes. The doctors got the results back a few hours later and everything looked normal; no signs of rejection. He will have these done two times a week for a few weeks. Tomorrow he will have his upper GI study where they’ll put contrast through his gtube and watch it move through the intestines on an X-ray. If everything looks good he will be able to start having clear liquids- which I know he will be happy about because he misses his water!

And today was another great day. He is getting back to his normal self more and more each day. His pain is pretty well managed, so he was able and willing to walk to the playroom not once, but twice today! He also sat up in his bed a lot more today and played with toys. I’m sorry I don’t have much to update on, but as they say- no news is good news!

I also want to mention that as I’m writing this, it’s 40° and rainy. We sure are missing our Arizona sun! Counting down the days until we can soak it up again.

And I of course want to thank everyone who has reached out, supported, and prayed for us! We couldn’t do this without so many amazing people standing behind us!


Post transplant update.

Jaxsons Transplant surgery lasted 11 hours and he did incredibly well. He didn’t swell too much from fluids given in the OR, so they were able to fully close his belly. He came back up to the room intubated and sedated and remained that way until Saturday afternoon. They weaned him from the muscle relaxer med so he started to move around and was more alert by about noon. He wanted to pull his breathing tube out, so they put him to room air with just a little help from the ventilator and he did well for about an hour. Around 3pm they pulled the breathing tube and he has done well ever since. His pain has been well controlled as he is getting a small amount of pain medicine continuously through his IV. We have the option to push the button and give him a little more as needed, but he has rarely needed the extra dose. Yesterday, they removed the peripheral IVs that were placed during surgery (which is nice because now his hands and feet are free) and he moved out of the PICU and back up to the transplant floor. He will have an endoscopy done on Thursday to look at the intestines and do a biopsy to make sure there are no signs of rejection. He will have these done once or twice a week for awhile. He has an ileostomy now (similar to a colostomy; but a colostomy brings part of the colon to the abdominal surface and an ileostomy brings the last portion of the small intestine to the abdominal surface).The ileostomy makes it much easier to scope and take biopsy’s as they can just go through that instead of the other way; it should be less invasive. After his scope on Thursday they will do an upper GI study with contrast to make sure everything is moving as it should and after that they will start feeds. If everything keeps going as it is, he can be discharged and to off the Ronald McDonald House with me in a week or two!

If anyone would like to send cards the address is:

Jaxson Dahl c/o 7B #726

4401 penn ave

Pittsburgh, PA 15224

I know he would appreciate having things to open and to show him how much he is loved. 💚

The call.

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.


New year.

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;

January: we brought in the new year with friends & Jaxson was cranky and tired when it finally reached midnight.
January- We brought in the New Year with friends & Jaxson was tired and cranky when it finally reached midnight.
February- The sweetest little Valentine ever.
March- Random photo while waiting for the school bus.
April- Jaxson turned four!
May- Last day of preschool & the start of summer.
June- We spent a day at the beach looking for Spongebob.
July- Jaxson got a pet fish and named him “Blue Fish.”
August- First day back at school! Last year as a preschooler.
September- We visited the 9/11 memorial at Pepperdine University.
October- Jaxson was Chase from Paw Patrol for Halloween!
November- Spending time with family for Thanksgiving.
December- Jaxson visited Santa.


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.

356 days.

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!

Happy Holiday’s!


Back to school!

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.