Blogs

+62

Jace Jones had an eventful morning. When his respiratory therapists (RT) went to retape and reposition his ET (breathing) tube, his O2 sats plummeted (to the teens, on a 100% scale). The RTs, nurses, and doctors had to emergency extubate him and provide bagged O2 for 20-30 minutes while preparing to place a new ET tube.

Intubation went well, there was a minimal amount of blood which is a better clinical picture than the previous intubation. For now, he is on a conventional ventillator, as opposed to the oscillator, so if he can tolerate the change and can maintain adequate oxygenation and pH balance, it will be a step in the right direction.

We will update Jace's profile with his white board picture later today. Please keep our little fighter in your thoughts and prayers ❤️❤️ sending hugs!

Day +27 through Day +49

Day +27 through +34

His kidneys started to function with the help of diuretics, and the main focus is to continue to eliminate the extra fluid that has built up in his body. We are also beginning the weaning period to help get Jace off the muscle relaxers and sedation.this is a very long process since he has been on them for so long, so each day they will cut back a little as long as his body can tolerate it without too much withdrawal.

We have also finally been able to get him out of the bed, and we have been holding him in a chair about once per day for a few hours (just to have a change of pressure points and scenery). It's so wonderful being able to snuggle with him again!

They have been ultrasounding his liver weekly to determine the healing progress of the VOD. There are still congested areas of blood flow, bot others are beginning to open up again. They will likely continue weekly ultrasounds to track the progress.

Day +35

Day +50... Back to the PICU

We had some unexpected challenges over the past 48 hours. Jace had been doing well and recovering from his 1st PICU stay, with weaning multiple Meds and PT/OT. Wednesday he started breathing rapidly in the afternoon, and by yesterday afternoon he was working hard to breathe and he was grunting with each exhale. Last night he fell into respiratory distress and required more oxygen than he had previously needed over the past two weeks. As his O2 needs increased, the stem cell team reached out to the PICU team for a rapid response to come visit Jace and check him out. In a matter of about two hours things escalated significantly. The plan was to gradually transfer him to the PICU to transition from a nasal cannula to a high flow cannula, so the PICU team came to the stem cell unit to do that bedside. By the time the high flow cannula was on at 10L, his O2 sats continued to drop and they had to switch to a CPAP mask.

Catch up from Day +19 through Day +26

Day +19
The fluid accumulation in his abdomen has been lessened by draining and pulling excess fluid off through his continuous dialysis, so there is no need for the drain to be in place anymore! So they pulled the abdominal drain, as well as his Foley catheter (since they become infection risks if they are not being used for any benefit). Steps in the right direction!! He also started making some RBC's as well which is another sign of the transplant moving forward!

Day 15+

Jace is still stable, they are still tweaking his sedation and pain meds to get him to a comfortable state, but he is stable and that's a positive :) And his night nurse made him a name banner! And his day nurse brought him some stuffed toys!

Procedures

Jace Jones has been in back to back surgeries/procedures from 9:30am-7pm getting multiple lines placed. He had two more central lines placed, an arterial and a PIV. He is currently intubated for the next 24-48 hours. His continuous dialysis started around 3pm and is effectively removing some of the excess fluid. This will take multiple days to relieve the organs from the excess pressure from the retained fluids. Then depending on his kidney function, they will determine his dialysis needs. He has a drain in his abdomen that they released about 400mL of fluid from during the first procedure. For those visual people, that's more than half a bottle of wine....and there is still so much more to drain. We will update as we can, life in the PICU has very little downtime.

Prayers please.

Here is the newest update on Jace. His kidneys started failing last night so they took him to surgery this morning to place a central line for continuous dialysis to help remove the excess fluid he has built up in his body. He is also getting two other Central lines placed additionally so he has multiple access points. At this point he has a jugular central line, a femoral central line, a PICC line, an arterial line and two PIV lines. Andrew and I cleaned out our stem cell unit room today and we will likely be staying in the PICU for a couple weeks pending his condition of his kidneys and his fluids status. He has been diagnosed with VOD that is pretty severe, and Only Time Will Heal his liver if they have caught it in time. Hopefully in the next couple days we will have a better idea of his long-term outcome. But on the more exciting note they believe he is starting to engraft!

Please please please keep our sweet baby in your prayers along this tough Journey

Post Transplant Updates

One of many milestones :) one whole week post transplant and our little guy is doing so well!

He did come down with his first (of many possible to come) infection and spiked a fever. They treated initially with two different antibiotics, while they wait for blood culture results to show signs of certain bacterias. His cultures were negative for some really bad bacterias, so he is down to only one antibiotic now :) knock on wood his fever hasn't come back. The downside to being sick on top of the transplant is the lack of energy....just like if you or I get sick, all we want to do is lay low in bed. But there are some big physical setbacks that happen so quickly, especially with the little babies. Jace was only inactive for 1-2 days, and his muscles significantly weakened. We are working with physical and occupational therapy to maintain his strength throughout the transplant period, both in patient and out patient.

News

So many things have happened over the past few days.  Here is a recap!

Transplant 9/7/2017 Day 0

We had a wonderful blessing of donor cells prior to the transplant.  The hospital Chaplin came by to meet Jace on our day of admisson, and he stopped by again on the day of the transplant to say a quick prayer.  The transfusion of cells happened very quickly like a normal blood product tranfusion, and Jace handled it very well with no immediate reactions.

He also received a very special gift from the child life department today.   It's a bouncer!  This is going to be so great for daily activities outside of the crib when he is feeling up for it.  He loves it and it's great stimulation physically and mentally. 

Day+1 and Day +2

Day 4

    Yesterday was the first time Jace has ever felt sick, and that was tough to swallow.  But as he started feeling the effects of the Chemo, I thought to myself that even if he was a thriving healthy baby, it would still be hard for me to see our baby sick and feeling uncomfortable for the first time…..  So in a way, I felt blessed that our first experience was in the hands of the best nurses on the west coast, and that they were prepared for any reaction he could have had. Jace started his second drug treatment called rATG, and it is combined with a chemo drug called Cytoxan. The rATG targets Jace’s T-Cells and destroys them, causing him to feel flu like symptoms: nausea, vomiting, diarrhea, body aches, chills, fever, etc. Jace will have 3 days of this combination of drugs, and before you know it, transplant is going to be here!






 
 
Syndicate content