Baby Kaimani's Medical Recovery Fund
Our newborn son Kaimani has been diagnosed with SCID (Severe Combined Immunodeficiency) which basically means he has no functional immune system. He is currently being protected by antibodies inherited from mom at birth but those are wearing off a little each day. If not treated the condition is fatal, usually within the first year. With treatment he is expected to make a full recovery.
Kai wll need chemotherapy followed by a bone marrow transplant. For the best results they would prefer to start the process by or before 3 months of age. He is facing months of aggressive treatments at Doernbecher Children's Hospital in Portland. Insurance will pay for his procedure but we will be leaving our home for a minimum of 3 months to support him on his journey back to health and will not be able to work during this time.
Please help our family by sharing this link while keeping us in your thoughts and sending positive energy and love our way for Kai to thrive off of!
Second if you can afford to help by easing some of the financial burden we are going to endure through this challenging time it would be very helpful.
Any amount will be greatly appreciated!
We are in the process of locating a suitable bone marrow doner that is a proper match with Kai. If you would like to volunteer to be a doner you can register at www.BeTheMatch.org to be added to their donor registry.
Thank you all for everything you have done so far and for all of the positive energy and love you are sending! We love you all more than you know!
We can’t thank you all enough for making it possible to stay close to Kai throughout this tough journey. It’s been quite a while since our last update and many positive changes have taken place over the last couple weeks. Just after our last update we were moved out of the ICU back upstairs to 10 South. The following week Kai’s counts were good enough that they took us off isolation. We still have to stay within the 10 south unit but now we can wander the halls and talk with other families here, not to mention the nurses and docs no longer have to gown up in their minion suits when they come in our room Kai loves getting to walk the halls and explore the playroom and see other kids!
The best, and long awaited news is the doctors said as long as things keep moving forward the way they have been we could be discharged sometime next week!!! We will still be away from home for about two months but we will be free to take our baby outside! Our family will be playing in the woods together before we know it!!! Pleasure overload!!! Lol! Sooo thankful for the powerful strength my baby has to help heal himself, he will never know how much love this world has for him!! So many new and old friends to play with!!!! Thank you all for your love and support, we couldn't have done it without you!!!! FOREVER THANKFUL!!! GO TEAM KAI!!!!! XOXOX
We also had a little scare on the 8th the day before he was extubated. They had done an ultrasound on him and said that his gallbladder was inflamed and he had Cholecystitis and even though they had never seen it in an infant they might need to remove his gallbladder, talk about scary!!! No more surgeries please!!! Thankfully Jason went online and did research. He found that people who are on TPN (IV nutrition) for weeks often will have an inflamed gallbladder and that it gets better as soon as you introduce food back to the stomach. Dad brought this up to the nurse and she said she would mention it. Thankfully when the surgery team came to see us they told us the same thing that Jason had just looked up and that they did not want to rush into surgery but would keep an eye on it. THANK GOD!! So far so good!! :D
He was extubated the next evening at around 10pm and everyone was really impressed with how well he did being taken off the ventilator! Other than the withdrawals he's doing amazing!! He is very impressive and the staff agrees! As of yesterday he was still vomiting very regularly but his shakes have started to go away. It’s still obvious that he’s in pain because he has little crying fits and normally he’s a very content baby and rarely ever cries! He is so amazing, even through all of this he still cries less than the average baby!!! This kid is a fierce fighter and I am sooo proud to be his momma!! We are hoping today will be better especially because he went all night without throwing up!! Yay Kai!!! Yesterday he smiled and laughed throughout the day when he wasn’t vomiting and it was simply amazing!! The staff loved it too, it’s not often they get to see the kids while they are getting better!
Please keep up the good vibes and continue to share our page as we move forward on our journey! We are expecting to have another few weeks or so at the hospital followed by 6 weeks at Ronald McDonald house here in Portland before we can go back home. Thank you all for your ongoing support and positive energy! We couldn't do it without you and we love you all!!! GO TEAM KAI!!!!
Well, it’s been a rough week for Kai. He’s had to get a ton of fluids from all the meds, blood and platelet infusions, nutrition via IV and the fluids they give to help wash everything through so it doesn’t remain in the kidneys and liver. His little organs just couldn’t keep up so they moved us down to the ICU last Thursday for dialysis to get the excess fluids out. That meant another surgery to implant a large catheter into a main vein in his neck to withdraw blood into the dialysis machine that removes fluid and infuses the blood back into him. Kai is so little that they had to do a slow continuous dialysis over several days to avoid shocking his system too much. Unfortunately that meant keeping him heavily sedated, on a breathing machine, and in bed for the last week.
Although we really miss getting to hold him and play with him, we’re glad to see the fluids coming off slowly but surely. Before we came down to the ICU his belly and liver had gotten really swollen to the point that it was uncomfortable for him to be held.
On the good side of things he’s just about done with the continuous dialysis and his immune system is starting to come back now. After 3 days in a row of an ANC (Absolute Neutrophil Count) of 500 or more he’s officially considered to be grafted. That means that his new bone marrow has taken root and his new immune cells are growing. Yesterday was his 3rd day in a row of ANC counts over 500 and he’s up to 1720 so it’s official. After getting fluids off his kidneys and liver are starting to recover from the fluid overload so everything seems to be coming together at once.
The docs just finished up CVVH (Continuous Dialysis) early this morning and plan on removing the breathing tube later today. They say he may still need a couple sessions of hemodialysis (periodic sessions that last 4 hours at a time) over the next few days but as long as everything goes well we should be able to move back up to our normal room and do it there. Unfortunately that means he’ll still need the catheter in his neck until he’s totally finished so he’ll have to wear some sleeve like contraptions that keep him from bending at his elbows so he can’t reach it and yank it out. At this point his need for extra fluids, meds, and blood products is slowly being reduced as the grafting process continues. We’re hoping that his organs can keep up with the new reduced fluid requirements. Everyday he’s getting closer and closer to being done with this whole process and we’re very excited about that. It will be great to be back upstairs where things are much quieter and we can hold and play with Kai. He really misses being held and we miss holding him. It feels strange to have not picked him up for an entire week.
Another part of this whole adventure I haven’t talked about in a while is managing the CMV level through transplant. If you've followed Kai’s story you’ll remember that we were able to get his level down to “undetectable” before transplant but one of the drugs we were using makes it harder for the marrow to graft so we attempted to discontinue its use during transplant. Unfortunately that allowed the CMV level to start creeping back up steadily over the last several weeks. In response they decided to start using that drug again. At first it didn't appear to be helping, the CMV level kept increasing reaching a level of 3900 late last week. There was talk of trying another med if we couldn't get it headed back down soon but we just got the news this morning that the level came back down to 3000. So as long as it keeps going down we won’t need anything new. And as far as we can tell thus far the pre-existing drug hasn't seemed to interfere with the grafting process because his counts are looking great.
Please keep up the good vibes and continue to share our page as we move forward on our journey! We are expecting to have another 4 weeks or so at the hospital followed by 6 weeks at Ronald McDonald house here in Portland before we can go back home. Thank you all for your ongoing support and positive energy! We couldn't do it without you!!!
We are Doernbecher too . We hope you can get the help you need. Such hard times but I am sure there is a great deal of love coming your way.
I love that hospital! My son had open heart surgery there at five days old. I may not have much $ but I have an 8 month old boy so if you need baby items ( clothes, hats , bibs etc) I would live to help. I can also donate a prayer!...Miracles happen at Doernbecher!