Well Lots has been going on Grayson got another line infection last week but it was only a short stay in the hospital, we went in Oct 1 to Oct 4. he will be on an IV antibiotic for 2 weeks which will end next Wednesday, Clinic went well this week, we mostly talked about his need for O2 but can be alot of things, because when he was originally diagnosed he has PCP pneumonia which is horrible and most kids don't make it when they get it. So we know some damage happened and he is on so much immune suppressant, he can not heal well, he may have developed some asthma from it also so as we go down on his steroid its harder on him, also could just be his infection, or a virus. But it could just be because his growth is stunted due to the immune suppressant, and so because hes gaining weight but not height it may be his lungs can not being in as much air. Ugh But other then that everything else looked great! we are tapering his steroid tomorrow :/ Hes been doing good eating and has been trying a few new things each day, turkey, apples, bananas ect... Other then the dang infection he got last week things are going pretty good :) He has an extra 4 IV infusions a day so that's a little tiring but worth it of course. So proud of his progress! Love you little man.
On the girls front its fall break and they are enjoying the relaxing no school schedule, Brynlee has a little cold and has been on lock down from Grayson and is going crazy. LOL They even just surprised me and folded 2 loads of laundry for me!! Love you girls and you are always such sweet hearts and so helping!
Mason is pretty busy at work which he loves! And its doing awesome! Love you hun!
Man I am so blessed to have such an amazing family!
Friday, October 11, 2013
Tuesday, September 17, 2013
Love my girls and all there ideas LOL
Costumes and Concerts are part of our everyday life with these crazy girls :) LOVE THEM
Click Here to see the Video I snuck :)
Click Here to see the Video I snuck :)
Our Announcement that I was pregnant with Grayson. :)
I stumbled upon the video I made to announce Grayson coming into our family, to my family
Click Here to watch if you are interested! Word for warning LOL there is a Creepy pic, I had to put it in there cause someone decided to photo bomb my camera so this was my pay back haha.
FYI we didn't tell anyone not even family I was pregnant until we found out everything was OK and found out his sex. Because of our past :) and this is how we told my side of the family. :)
Enjoy :)
Thursday, September 12, 2013
Some things Grayson has been up too!
Got to go to a parade!
He has learned how to feed himself!
He is a great mess maker!
Loves his sisters!
Hes taking a bottle and has his tube out now!
Hes standing and Playing and trying to take steps!
Thinks hes to big for the high chair so he has to sit up to the table LOL
Loves cleaning everything!
Sorry its been so LONG!!
So the day after the last post Grayson was admitted again on JULY 5th and was in until the 19th I believe was the day we were discharged, This time he has grade 1 GVH again of gut and skin. So we switched everything to IV , steroids and his cyclsporine and he is doing soooo well we are able to do it at home so that makes it 100 x better :)
We have been tapering down his steroids he was doing so well we were going 1 mg every 4 days, until we got the night dose completely off, we started at 8 MG morning and night. Once that does was gone we started the morning dose but are going much slower. Since we have failed tapering this does so many times
:( so right now we are doing 1 Mg ever two weeks. Which he seems to be handling pretty well, his poop got a little loose (not watery which is a sign of GVH) and his skin was red (but not splochy which happens with GVH) Which at last clinic apt on 9/5 his cyclsporine level was pretty high which would make some of the side affects happen, his level was 520 and should be 250-350 so they went down on his dose and Tuesday it had only gone down to 499. So they went down again and he doesnt look as red and his poop is going back to normal LOL I'm sure you just love me talking about poop but that is party of our lives we are obsessed with poop and gaining weight LOL.
He is progressing so well in physical ways, social ways ect.. you can just tell he is doing so much better and feels so much better too! He does not have the stranger anxiety as bad as before, hes becoming much more trusting of others, hes talking signing, blowing kissed, waving, scooting on his bum (they don't think he will crawl due to his line in his chest if he lays on it, it hurt him) he is also starting to take steps holding on to our fingers and even some along the couch. The big thing we are working on is transitioning on to his tummy, and siting up from laying on his back and standing up from the floor. Its crazy because he went from 6 months old when he got sick and was stuck at the mile stones he was doing up until about 2 months ago and since he has felt so much better he is making up for all the lost time!!
He also LOVES shoes he has gotten a few more pairs lately and wants them on all the time :)
Hes doing so well its amazing, this is the longest we have been home since he was first admitted December 17th 2012. On September 19th will make it 2 months we have been home!!
Please keep the prayers coming they sure have been helping!!
Love you all!!!!!!!!!!!!!
Oh we go back to clinic on the 19th
We have been tapering down his steroids he was doing so well we were going 1 mg every 4 days, until we got the night dose completely off, we started at 8 MG morning and night. Once that does was gone we started the morning dose but are going much slower. Since we have failed tapering this does so many times
:( so right now we are doing 1 Mg ever two weeks. Which he seems to be handling pretty well, his poop got a little loose (not watery which is a sign of GVH) and his skin was red (but not splochy which happens with GVH) Which at last clinic apt on 9/5 his cyclsporine level was pretty high which would make some of the side affects happen, his level was 520 and should be 250-350 so they went down on his dose and Tuesday it had only gone down to 499. So they went down again and he doesnt look as red and his poop is going back to normal LOL I'm sure you just love me talking about poop but that is party of our lives we are obsessed with poop and gaining weight LOL.
He is progressing so well in physical ways, social ways ect.. you can just tell he is doing so much better and feels so much better too! He does not have the stranger anxiety as bad as before, hes becoming much more trusting of others, hes talking signing, blowing kissed, waving, scooting on his bum (they don't think he will crawl due to his line in his chest if he lays on it, it hurt him) he is also starting to take steps holding on to our fingers and even some along the couch. The big thing we are working on is transitioning on to his tummy, and siting up from laying on his back and standing up from the floor. Its crazy because he went from 6 months old when he got sick and was stuck at the mile stones he was doing up until about 2 months ago and since he has felt so much better he is making up for all the lost time!!
He also LOVES shoes he has gotten a few more pairs lately and wants them on all the time :)
Hes doing so well its amazing, this is the longest we have been home since he was first admitted December 17th 2012. On September 19th will make it 2 months we have been home!!
Please keep the prayers coming they sure have been helping!!
Love you all!!!!!!!!!!!!!
Oh we go back to clinic on the 19th
Thursday, July 4, 2013
June :( was a crazy month ugh
Well june started out a good minth celebrating my adorable little man turning one! But unfortunately we had a few trips to the hospital.
In total from may and june we had 5 hospital stays.
O2 levels
Norovirus
Norovirus
Bacterial infection
And lastly gvh flair which we just got out for Wednesday the 26 th of june. Friday june 28 his clinic went good numbers looked good. Then july 3rd numbers looked good! Except his prograft level keeps coming down even with increasing the dose so my gut is telling me we might be ending up back in the hospital :( I don't think we have gotten the gvh under control. So hopefully they just can start him on tpn again and give his tummy a little break. :( to heal.
In the good new department he is without feeding tube!!! And taking all his bottle by mouth!!! So exciting!
Over all our little man is an amazing fighter and such an inspiration to us. On top of all this he is also going througj normal baby things like getting his top teeth :( and is lots of pain because of it.
Gosh I love tha kid !
The girls are loving summer and I see them about as much as I do when Grayson os admitted because the love grandmas and cousins houses. So we have been misssing them like crazy.
We go to clinic again tomorrow so we will see where we are at gvh wise.
Love u all!!
Wednesday, June 5, 2013
Graysons One!!!!
First off I want to thank everyone who made it to Graysons first birthday! It means the world to us to be able to spend it with you!
In the scid world 1st birthdays are a huge deal ( well every bday) mostly with this diagnosis if it is not caught early and treated with a successful bone marrow transplant. Children with scid do not live to see there 1st or 2 nd bday. Due to an illness or starvation. We have had some scary moments in those regards and u have all been with us through it all and we thank you. so .. needless to say this was very special to us!
Unfortunately with Grayson s condition he was not able to have a huge party which we like to do, but it turned out perfect!
I can't believe baby is one!! Can't wait to celebrate the next little man! He is truly our super Manny!!
First hike of the year!
June 2nd 2013
We decided to take a like trip to hike and have a picnic! We decided on cascade springs! The docs have said the best place to be with Grayson is out side because the germs are not enclosed in so we plan on taking full advantage of that this summer since we love outside! This girls and grayson had so much fun they didn't want to leave!
Graysons birthday eve!
Every year with our kids since ellie was one we tie ballons around there bed and so they wake up to a celebration first thing! They love it and they look forward to it every year! Since the girls are a little older the (birthday fairy) does a balloon for every year they are with a dollar inside!
Pics from last hospital stay
He also had to get poked for blood draws twice :( because his line was being a turd :(
Mannys last couple hospital stays blahhh
Well Sorry this has taken forever and a day to get done, I know many have been waiting to know whats going on with our little nugget. LOL
Well a few weeks ago after we found out Grayson had Norovirus they let us out of the hospital pretty quick after finding out. We tried advancing his feeds pretty fast to get him to full feeds, but his tummy didn't like that :( so we were released on May 27th but he started pooping like crazy again and Wednesday at Clinic they decided he needed to be started on TPN again so he is getting nutrition and his tummy can rest some more. His white count was still pretty high also 25000. Yea not good :( and his Co2 ( it is a chemistry in your blood) Normal level is 20-24 and Graysons was 11. So they decided to admit him :( to get things straightened out. He did not like not eating again but it sure did make his belly happier, after just a day we were able to up his pedia and he was able to go home Friday the day before his birthday!!!! yea... he handled everything really well over the week end and on Tuesday at clinic they were happy to see his white count was a nice 10000 and co2 was 24!! So we decided to try half strength formula and pedia and his tummy is doing ok so far. Poop has picked up some but not terrible! We are also starting his steroid tapper again. If everything goes good he can be off in 2 weeks and have a rest week or two and start tapering the cycolsporine. YEAAAA! Cross your fingers for us!!!!
Well a few weeks ago after we found out Grayson had Norovirus they let us out of the hospital pretty quick after finding out. We tried advancing his feeds pretty fast to get him to full feeds, but his tummy didn't like that :( so we were released on May 27th but he started pooping like crazy again and Wednesday at Clinic they decided he needed to be started on TPN again so he is getting nutrition and his tummy can rest some more. His white count was still pretty high also 25000. Yea not good :( and his Co2 ( it is a chemistry in your blood) Normal level is 20-24 and Graysons was 11. So they decided to admit him :( to get things straightened out. He did not like not eating again but it sure did make his belly happier, after just a day we were able to up his pedia and he was able to go home Friday the day before his birthday!!!! yea... he handled everything really well over the week end and on Tuesday at clinic they were happy to see his white count was a nice 10000 and co2 was 24!! So we decided to try half strength formula and pedia and his tummy is doing ok so far. Poop has picked up some but not terrible! We are also starting his steroid tapper again. If everything goes good he can be off in 2 weeks and have a rest week or two and start tapering the cycolsporine. YEAAAA! Cross your fingers for us!!!!
Saturday, May 25, 2013
Answers!
Well Grayson just got his labs back and unfortunately tested positive for noravirus aka crew ship flu. They said it is very common in immuno suppressed pt. Because they pick up on everything! They are happy that it is not gvh making him so sick! ( we are too!) They said it can be a few weeks of being sick and some kids it hangs around a few months:( but they said it's good we caught it early and were getting on top of his fluid need ! We are praying he gets better soon!
He also seems a lot more comfortable today and sleep grate last night and is still napping now :)
He also seems a lot more comfortable today and sleep grate last night and is still napping now :)
Friday, May 24, 2013
Wow what a week !
Well our week started out ok lol Grayson was getting a little sick I could tell so I called the doctors monday and they didn't seem terribly concerned we were just going to watch him and see how he trended. If you don't know about gvh of the gut it can be very painful lots of puking and diarrhea. As of monday he didn't have pain but did puke once and was having looser poop lol sorry I'm aure u wanted to know that. Lol and we was going about 4-5 times a day.
Tuesday
his pooped seemed a little looser but was about the same amount of times. I also noticed he was not peeing very much so I called the docs again just to see what they though again :) they didn't seem totally concerned but want to watch it and would check everything out wed at clinic.
Wednesday
there wasnt much change first thing in the morning miss ellie lost her fiest tooth! Ill post pic later! And it was brynlee s last day of preschool before graduation and Graysons 100 DAY Consult with the doctors! Busy day ! Luckily we have an amaz neighbor kristy who has two kids ellie and brynlees same ages and they go to the same school ( Presley and crew:)) and they are the girls best friends. So she took brynlee for the day for us! (Thank you!!)
At clinic Graysons labs looked pretty good except him white count was 21000! Ya just a little high. They were thinking maybe an indicator that he had an infection and did a bunch of work up to see! Everything came back ok. ; ( so they uped his cyclosporine and steroids so see if it was some gvh flairing up and needed some more time on a higher dose steroid.
Thursday
Brynlee graduated from preschool! Cant believe my baby is so old and starts kindergarden next year :( love you brynlee! At her graduation however grayson puked so mason and i took grayson to get cleaned up and re dose his meds. Also over night Grayson was pooping quite a bit. And I had not heard about his cyclosporine level so I called again. Brenda said his level was 78 quite low so we were going to do a pretty big increase. A therapeutic level is between 250-350. So I felt that ment it was not being absorbed like it should since he hadn't puked any up :( well my gut was right. Grayson sleep most of the day and o went to change his bum about 1 his poop was very watery a very good sign that gvh was not making it happy. Still no signs of pain or puking this entire time! (That's a good thing lol) so I called Brenda and let her know how different it looked and she tjought it would be best to come in ao they could watch him and be able to keep a better eye on things.
Friday
This morning after rounds they decided with his output and weight loss that we really needed to get ontop od things and turn all meds iv and put him npo let me tell you How bad he hates that :( (npo nothing by mouth) his tummy really needed the rest. And with the tummy rest and us knowing he's getting his meds we should start seeing some change!! He also has some skin gvh so his skin is very dry and itchy so he is pretty mad between no food and itching and just not feeling good! :( but cross ur fingers, wish on a star, say a little prayer or just send US good vibes this is a fast recovery and he can be home for his birthday next Saturday!! Can not believe he's 1! Well almost lol
We love u all and I will try to update tomorrow! Ill post a few pics of this last week :)
Sunday, May 19, 2013
He's home!
Little late I apologize. But we have had a lot going on :) we got to come home Wednesday after seeing the pulmonary doctor, he was kind of stumped but does not seem to think its asthma related which is good. It could mean its from the cold he has or since he has never been of o2 since being since in December with out being on steroids. May mean he needs to get used to not having the steroids there to help out. On the plus side they do not seem to believe its gvh in his lungs which is a great thing!! So any who all is well as of right now just has a cold with a yucky nose. Which will take him a little longer then u or I to get over but he should be able to now. Just a waiting process. They did say is 3 /4 weeka if he is still on o2 they will repeat his cat scan to make sure they are Ok since his last one he moved a little. So this next time they will sedate him :(. Tuesday and Wednesday the docs really were pushing to ween him down on o2 but he would not budge of .40 litters lol and as soon as we got home Wednesday he went to .25 and sometimes can hang out between 3/16 &1/8 so that's also good! We go back to clinic wed amd I will keep you all posted how it goes love ya all!
Monday, May 13, 2013
At it again :/
Oh the love of the bone marrow transplant world. On day everything is good them you have a rough night and back at primary children's the next :( poor little man :(
It all started with a little stuffy and when he would cry his nose would start running. And it stayed that way for a while. 2 clinic apointments ago his o2 was 90 last Thursday it was 87, so we started spot checking it two times a day everything has been good. Until last night. His heart rate was up alittle and was running a low grade fever. It would go away on its on so we didn't stress it. This morning I called bone marrow just to let them know what was going on. And they asked to have us come in. We got there about noon. We did blood cultures. Vrp. Ct scan gosh everything. All so far are ok. His vrp did show rino and para flu 3 which he has tested positive for a while now since those are his original viruses that led us to get his dx. So they admitted us to get to the bottom of it and see what we may need to do. Please keep the prayers coming this little man needs them! We are hpping this is a short stay :) love u all I will update as I know more!
Thursday, May 9, 2013
Quick Once over of Graysons Journey !
December 17
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)
we quickly started preparing for transplant!!
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.
January 22,2013
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!
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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