Grayson was admitted to American Fork Hospital for pneumonia and para flu3 and o2 stats in the 70's. After a night of desatting they sent us to Utah valley medical center in fear he may have to be intubated.
December 18th 2012
At night Grayson started breather 120 bpm so the doctors said the best thing to do would be to intubte him and let him rest and heal.
December 19th 2012
I had not eaten since being admitted and my mom and family finally convinced me I needed to, I went to say goodbye to Grayson and give him a kiss. But when I said I will be right back, his eyes popped open and he started flipping his head, coughing, and grabbed for his tube. Ending in self extubation. :( and was started on high flow right after.
After an up and down week the doctors were at a lose of what was causing him to do get better and get worse over and over (dismissing my assumption that it was a immunity problem LOL) They decided to send us to Primary Children.
December 26th 2012
Hello Primary Childrens Picu, we arrived the evening of the 26th and the doctors thought it was going to be a wait it out type thing, and let us sleep the night in the picu and the next day sent us to Infants unit.
Decembr 27th 2012
Hello Infants Unit LOL after a night of destating in the 50s and being suctioned every 2 hours. The doctors of the infants unit did a xray the morning of the 28th and it showed a white out in his little lungs. :( so they sent us back down to the picu to be put on to CPAP to Pop his lungs open, they were thinking he had more pneumonia and part of his lungs were collapsed ( this ended up not being the case and I will update on that later. :) )
December 28th 2012
Grayson was intubated again at 8 am after a night of not tolerating the cpap, and ripping the mask off several times. :(
Over the next few days grayson got progressively worse, he could not sustain his o2 stats being intubated so they put him on the osalator ventilator. And was holding pretty steady at 75% o2. They want him below 60% due to the problems it can cause having that much pure o2 in your lungs. Healthy people breath about 21% o2 in every breath. Grayson was getting so bad there were many times we didnt know if was going to make it, I would ask the nurses and doctors to be straight with me and how they thought his was doing and they all would say, they didnt know. Simply because we didnt know what was making him so sick, the ID doctors did test after test of different pneumonia to see if it was some crazy kind and nothing was showing up. So the ID doc suggested an immunity test to see if he was low on anything,
December 30,2012
Doctors are talking about Dialysis to get some fluid off grayson, he was on so many different meds to keep sedated out of pain, antibiotics ect... and his body was not peeing it off it was causing more fluid in his lungs.
December 31,2012
10:30pm IGG levels come back very low, <105. I was ecstatic for anyone in the medical feild that understands finding out a cause for why somethings happening x10 and you can understand why I was so excited for this news. Only moments before I couldnt look at Grayson with out crying not knowing what to do, if I should prepare my girls for him not making it, I was lost. At 7 pm in the picu they kick you out for nurses shift change. So Mason and I decided to go get some wrapping paper for the girls charisma presents because we had been waiting tell grayson got home to celebrate as a family. But with Graysons condition not knowing, we wanted to let the girls have santa come and play with their toys and have some normal. After 3 weeks of being toasted around from family members ( thank you all you will never truly know how much help it was to know our girls were taken care of and not have to worry about them! we love you all!) So we went to walmart to get wrapping paper, I couldnt stand to leave the hospital my heart was at the hospital with Grayson so the whole time I felt so empty like a zombie and cried at the sight of anything boyish, all I could think about is how if he doesnt make it he will never be able to play with hot wheels ect.. I just wanted him to be a kid a baby and be learning to crawl right now. I was frustrated and broken hearted and so lost. I didnt want to think about what I couldnt get out of my head and that was loosing my baby. It was terrifying So again I say to know his IGG was low was amazing!!! then came his IGM and IGA all so low they could only say it was less then 5. So we knew we were dealing with an immunity thing! FINALLY!!
January 1,2013
The doctors said we had two possibility of what it maybe one had to do with not functioning B cells that make igg igm and iga. And it is very manageable with IGG replacements. The other was SCID Sever Combined Immune Deficiency this they did not want, its the worse off primary immunity problems and there is no treatment but it does have a possible Cure with a bone marrow transplant. WoW! Alot to take in. And they results were not back yet ugh. So for now they gave him IVIG, and started considering pneumnocystis pneumonia - which is a pneumonia that only low immunity people get, we all carry it but people with no immune system die from it. AWESOME right.. Not. The good thing about this was there is a antibiotic for it called Septra its a 21 day course every 6 hours through IV. Only problem is it is a hazardous drug so you have to have a positive result for pneumnocystis our be out of options. And at this point we were out of options. This type of pneumonia often is something that hits aids patients and is fatal. Luckily one of Graysons doctors has alot of experience with aids patients who have had this and knows the signs and treatment plan. She said one of the biggest signs is one of their levels are extremely high im not sure which one im pretty sure they liver enzymes. And Grayson were in the 2000. normal is 40 ish. So it was a good indicator. And the test for this pneumonia takes 48 hours to get back. Much to long to wait. So we started the septra and steroids to help with inflammation. With in 3 hours of the first dose Graysons o2 need went from 75% to 40% AMAZING!!!!
Needless to say we were doing everything but back flips!!!
January 2, 2013
We decided that since Grayson was doing better and having 3 kids we needed to make the girls a priority while things were going good and steady, so we went home to have a Minny Christmas and spend the night with the girls!
January 3rd, 2013
First thing in the morning the doctors called us and said Bone Marrow team evaluated Grayson and said that they were going to go forward with a Bone Marrow transplant and asked to have the girls up ASAP for blood typing. Ellie was so excited to help her brother and Brynlee wanted nothing to do with it lol Actually on the way up she sang a song about not getting her blood out. LOL oh how we love that girl. Ellie did not handle getting poked very well at all. Brynlee surprisingly did! And walked out smiling saying I hope I'm the match MOM!! Ellie was over the idea and was ready for Brynlee to take the lead on saving her brother haha
After the girls did such a brave thing we decided it was time for them to see there brother! A child life specialist helped explain to them what they would see so it would not scare them with Grayon having so many tubes and one coming out of his mouth. And they handled it great! Grayson was so excited that they did this for him he opened his eyes for them and looked at them ! This was the first time since he had been intubated.
The next few days we continued to go down on settings and switching to the lowest vent, and eventually on
Sunday Jaruary 6th,2013
he was extubated ( by doctors this time lol)
YEAAAA!!!!
He went straight on to a regular canula on 1 letter of o2!!! Little fighter!
January 7th, 2013
We were sent up to the ICS unit (immunity compromised unit)
We were very nervous at first with the change and no nurses in the room with you and doctors not just right out the door but we quickly adapted and it was great!!
January 9th,2013
We learned Miss Brynlee Faith was our match for the little man! The chances of having a sibling match are 1 in 4 with each sibling, our chances are actually higher to find an unrelated donor then a related. And a parent is only a half match so they are the last option, and out of me or mason it would be the mom. So a sibling is by far the best option!! We were ecstatic!
Brynlee came up Thursday to give more blood to do her work up! And transplant was scheduled for Friday January 25th 2013 yes 2 days after Brynlees 5th birthday.
Bad news someone did not fill up one of Brynlees tubes to finish her blood work :( so that means more blood work. UGH So Brynlee and Mason rushed up right after school that day and gave a little more. So this was suppose to push back surgery for brynlee tell tuesday or wednesday.
January 23, 2013
BRYNLEES BIRTHDAY 5!!!
Grandma Prudence came to hang out with Grayson so mason and I could be with her and go to the circus!
January 24th, 2013
GOOD news blood work came back already Surgery is scheduled and set for Friday the 25th!! Its the fastest they have ever scene!
January 25th, 2013
BMT DAY!!!!
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Brynlee was very generous, They both did awesome and everything went very smooth!! Brynlee had virtually no pain. And was playing in the snow that week end. Other then being a little tired from loosing the blood. Taking the bandage off was by far the worst part for her! She was so tough! Such a little hero!!! Ellie played nurse and took great care of Brynlee. Im just so proud of all my kids im so blessed !!
January 26th 2013
We took a little trip to the Picu due to fast breathing they started him on steroids ect.. to be safe it was not GVH. I got sick monday so I went home and Mason came up to stay with Grayson. They think he was very dehydrated and that affected his lungs. On wednesday he was back up to ICS in room 20
February 1st 2013
Grayson started developing a rash and by saturday it was all over his body, they were worried this could also be GVH but by the next morning it was gone wtihout any intervention, so they said it was most likely En-graftment rash, his body reacting to the new cells. After that he continued doing awesome taking a bottle and eating great!!
February 23 rd 2013
They drew his blood to check how many cells were Bryns and how many were his, it showed 100% T cells Were Brynlees and only 2% B cells were hers. We knew that he may not get Brynlees B cells, because he was so sick before everything the did not do chemo which they normally do, which would have knocked out all his counts across the board. But since he had B cells of his own they would but up a little fight. They is a chance to get cooperation between brynlees t cells and graysons b cells its about 25-50% chance So we are keeping our fingers crossed. since he was en-grafted however they let us go home on monday.
February 25 2013
Bye bye hospital HELLO home!!
We had a great few days at home and saturday he started throwing up and we ended up back in the hospital.
March 3rd, 2013
UGH hospital
Docs thought it was a virus at first but everything was negative.
March 6th, 2013
Scope was done to test for Gut GVH
Surgen said it did not look good :(
March 7th, 2013
Results are in grade 4 GVH :(
Poor sick little man he was so very sick it was hard to look at him, he laid in bed for days and was put on NPO and looked like he was wasting away. I pointed out to the nurse that he look dehydrated and they started doing stool replacements. which helped alot and he perked up.
March 8th, 2013
Surgery for his broviac line to be placed to start cyclosporine and steroids. And then the healing process began our goal was to be home by Easter!
It was a slow recovery his poor tummy was pretty sick but he responded well to treatment and we are tapering the steroids now and then on to the cyclosporine . ( the hairy drug)
March 29th 2013
He was released and sent home to heal more!!
Wow what a ride it has been, to look back on where he has been and all he has over come in such a short life is amazing. I always knew it was my responsibility to teach my children, never did I think about how much they would actually teach me. Grayson is such a fighter and lover. He has the perfect balance of it all, he hurts yet he smiles, just a true inspiration to how we as adults lost that and myself how we should really live our lives we fight hard when we need to but never forget to smile and enjoy this gift of life. Ellie for he loving, nurturing heart she such an angel and takes such good care of her siblings what an amazing women/mother she will be someday. And miss Byrnlee has the best attitude about life and always trying to make people smile and laugh. she is such a hero, so selfless. Man I am lucky!
We have been home ever since knock on wood and continue to go to clinic once a week and taper down on steroids which is a balancing act. He had a little Skin Gvh last week but its looking good with just a cream. I will keep you all up dated thank you so much!! love you all!
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