Since Bo got scoped and he now has the E in IPEX, enteropothy we are “trying” to go gluten free!!! God help us!!l lol!! Bo does eat by mouth, not just tube fed!! a lot of crackers goldfish to be exact and guess what they don’t make gluten free goldfish!! So if anyone out there has any ideas what we can use or try please let us know!! It has been a little bit if a challenge since he eats most everything he likes has gluten he likes crackers very bland food!! We are all set for Friday we check in at 11 and they will access his port to keep his sugar u def control as of now depending on his sugar and oxygen levels we may have to say the night!! Pray that isn’t the case! Why we were at the pre op appt yesterday his ear was bleeding, a lot!!! So I hope and pray that this 3 week yucky ear will soon be fixed!! Funny how we got tubes to prevent infections now because Bo can’t do anything the right way. We are having them removed!!! Ugh!!! I guess we will see what this flu season brings with no tubes!!!!
So… Since we last spent time in the hospital! When we got scoped, Bo has been fighting a virus! I hate the word virus!!!! A virus for Bo is terrible, so his ear has been draining! I mean draining do bad I have to chance his shirt every few hours! YUCK!!!! 2 rounds of antibiotics and 2 rounds of prednisone(which prednisone makes his blood sugar super high) still draining! It was Negative for MRSA which I figured it was. If he was going to have MRSA he would have gotten it long ago! So…. They think his body is rejecting his tubes! Ugh!!! So Friday we will have them removed! The one on his left is not in a good spot so pray they can get it through the ear and not have to make a small Cut under his ear to get it !! Boooooooo!!!! Also Bo produces no antibodies for the flu or pneumonia so during flu season he gets the flu, pneumonia and synagis( rsv) vaccination every month until march! He has not had 1 yet?!?!?! Oh my hell!!! I guess lets just get through Friday, we shall see!!!! Have a great day!!
I have followed your story since late July and keep Bo in my thoughts and prayers.
I follow it because my grandson Cooper was born with this Damn IPEX too.
His story can be found here;
Best of luck to you, Bo, and your whole Family.
This post is simply going to be a bitch, complain and I am tired of stupid people session!! Stop now..if some of my language may offend you! So….. Here is my day on a good day, I wake Leksi up at 6:30, I get dressed oh wait Bo has been awake for 1-2 hours on a good day,lately he gets up at 5:30-6. I make pancakes, or waffles, or eggs or toast or bagels or cereal! Baylee and Nathan get to my house at 6:45ish everyone eats and Johnny gets up in the shower and eats at 7:15. I get Bo and Brookie dressed, help Leksi pick out her outfit for the 3rd time since the night before, I flat iron her hair she is ready! I have to check Bo blood sugar, give his 4 morning meds and start his first feed! That runs for over an hour, I bolus him and i take all 4 kids to school, but have to get 6 kids in the car! In between all of that I have to say 107 times to Johnny to brush his teeth or they will fall out, stop Bo and Nathan from fighting and pick a channel for cartoons that everyone agrees on! I take the kids to school come home, I start 1 of 9 loads of laundry because god forbid anyone use a towel twice and by the way I have to put away 6 loads of laundry first! I make my bed, trip over a car or two, Bo’s feed is beeping I have to flush his tube and take it off! I have to check his blood sugar hope its not to high from his feed! Then Bo and Brookie ( mostly Brookie) are ready for a snack, I give them a yogurt and veggies straws, forgot that I have to unload so I can load the dishwasher from all the breakfast dishes!!! So I take Bo and Brookie outside to swing for a bit, come back switch the laundry, fold the laundry and put away the laundry for 6 people! I check Bo blood sugar, and I may or may not have a highlight to do that day or I may of may not have to take Bo to his 20-40 dr spots a month or I may or may not have to take him to therapy and preschool! It is now lunch time I fix Bo feed hook him up check his sugar and start that! I make lunch, in between picking up 123 match box cars and 36 blocks and 17 Barbie clothes, 5 puzzles and 3 books! I put away another load if laundry I feed Bo and Briokie some lunch. I turn Bo feed off an hour later flush his tube take it Off and check his blood sugar!!I pray to god they want a nap!! NOPE no nap!!!! So we play outside, or go to the Dr or I do a haircut and Brookie sits on whoever lap while they are under the dryer! I check Bo blood sugar and get them a snack, like cheese stick and yogurt! Now the big kids will be home in 5 min, so I put more laundry away and I pick up more toys and wait until the 4 of them walk in! They all 4 get a snack and start homework! Bo and Brookie are fighting over a toy, I take It away and I help everyone do math( which I suck at) they all finish and they go outside until my sister gets here!! I check Bo blood sugar and play outside for a bit. Then it’s dinner time’ I turn Bo feed on i bolus him, and make dinner..feed is done take it off and flush his tube!! I clean up the kitchen put the dishes away or load the dishwasher clean off the table and clean up the kitchen, switch the laundry around!!!depending on the day , we have practice for either Leksi or Johnny! So we head to practice, come home get ready for bed! I have to give 2-2 year olds s bath, I have to
Take off Bo insulin pump and take off his contact so I can bathe him! Give them a bath,dress them both, put his insulin pump back on, give him his shot in his leg and check his blood sugar! Give them a yogurt, give Bo 5 night meds through his tube, check his sugar and put them to bed!! Then I get to put more laundry away and now I get to rewash the towels that I washed 8 hrs prior! I spend s little reading time with Leksi and Johnny and bed time for them!! So I finally get to have a small conversation with my husband and I shower and go to bed! Usually it’s around 2-3am and I am not kidding for some reason I suck at sleeping!!!!
So you wonder why I am saying this???here is why!!! What I didn’t write,i do so much more then that!! I love my children, take care of my family and my husband…. if,I mean really, IF I forget to call u back for the fucking love of god it’s because I am busy! Not because I don’t care I do, sometimes to much. I am so tired of selfish ass people they are all over the place!! I have no time or do I have the energy for these kind of people! I can’t figure it out either why people are so stupid!’ Believe me I deal with a shit load of stupid people starting with medical stuff!!! So I am more then willing to let anyone I mean anyone come spend a day with me, I promise you will never do it again and maybe just maybe some of these people will realize a hell of a lot! Then again I realize some people are not going to change and that is fine too!! Oh good grief that was a lot! I am typing on my phone and my finger is sore! I hope and I pray that everyone out their realizes one thing and under no circumstances am I throwing a pity party for me or my family, tonight when you tell your wife, husband, daughter, son, mom, dad, partner,friend whom ever good night! Be thankful for what you have it could always be worse!!! I am blessed to be Bo’s-mommy!!! That will be never change and I promise you I will be his biggest fan, his advocate,his support system as all of my kids, until the day that I die!! So when and if you think or wonder what a day is like here? Well there you have it!!! Welcome to my world!!!
You are my hero. Period.
Holy crap! I’m exhausted just reading that! Oh and I’m pissed u never called me back. 🙂 hehehe. You definitely do not need me to tell u now amazing u are, but I really wish you could send me some of ur energy at least a little. Love u girl. And keep up kicking ass, make sure to jot down those names tho.
You are an AMAZING woman!
you are amazing! I don’t read this always, but I pray always!!! keep on keeping on!
I frickin love you! This Sounds very familiar… And to be honest, when I think of You I am humbled. Your backbone is made of steel.
I love you so much Carolyn!! You are my Rock Star!!!! I love you all so much. LET ME KNOW IF YOU NEED ANYTHING!!!!!
Thank you for making the time to bring those awesome treats last Halloween. I think you are a wonderful mother.
Bo spend last week in the hospital, he had an upper and lower Gi. OF course it was Abnormal!!! SO his lower intestines were covered in white stuff?? DR A, had never seen this before!(story of our life) so he did many many biopsies and it came back to be ENTEROPOTHY. Yep The E in IPEX had taken affect in my poor little man! SO we will wait and hopefully hear today what our plan of action is. Their is a 99% chance we will go Gluten free, Glucose free plus he is diabetic did I mention He is diabetic!! UGH!!!! Fun fun, but what ever helps I am down with. In a few cases they have seen this early but most from what research they can find this E in IPEX starts later in life not at the age of 2. Of course we don’t really know because none of the Dr here have seen it before! So I don’t have much just that!
Please keep the Peters family in your prayers today, today is Transplant day for Clara and her amazing sister!!! What an amazing blessing!!
Also TEAM KRIS~ this is truly amazing to ME also, Kris Minor couldn’t find a BMT match so they did cord blood transplpant on Aug 11… I am SO very happy to say Kris is going home today, with amazing results she is a true fighter and her family is simply amazing! Thanks everyone for your prayers for these amazing families!!
Have a great day!
Good luck to Bo and your family. This has been such a long road and difficult battle. You are in my prayers. Michell Wagner
Thinking of you all!! I love you, I love you, I love you!!!
Way to keep it interesting Bo!!! Always thinking of you guys!!! Xoxoxo
Last night I had the amazing privilege to meet a women by the name of Jessica Peters. Her daughter Clara is starting the fight of her life today and her big sister was her match! You see Clara has Aplastic Anemia and she needs a bone marrow transplant! She is 5yrs old! Her big sister was a perfect match and today she was checked in and her journey begins! Please follow her journey on Facebook Clara’s crew. I am blogging from my phone and will repost the link to her caring bridge site! Please pray for her that she fights this fight and her amazing family stay strong for her! Please pray that she will return to her life, her friends and doing what 5 yr olds do!! It is so amazing that her big sister was her match what a true blessing, and for her other sister who gets to help her with this fight!
I never in a million years thought I would blog, let alone be blogging about this. As I am sure Jessica feels the same way, she should be getting her 3 children in bed for school tomorrow,instead she is camping out for 6-8 weeks because her daughter is sick! Unfortunately this is our reality, as I sit here watching my 2yr old asleep in the hospital,I can’t help but feel a little sorry for myself and for him!! But that only last a few seconds because I know it could be worse it is worse for many many people!!! That’s why it’s my responsibility as Bo’s mommy, to make sure everyone knows how very much this little boy amazes me every single day! He is so strong!!!! So here is where he stands!!! We are having upper and lower GI done Wednesday, hopefully!!! today he has had a slight fever so only time will tell! We are hoping that his lower intestines are working properly,he has been having a lot of trouble with his stools he goes from having 100 in 3 days to nothing and he gets compacted! We have to figure out what Is going on with his tummy!! We will hopefully have a better day tomorrow and we will have a game plan!! Thank the lord for his port!! Even though it was stressful with his port a few weeks ago, it’s working so good!! He had a few very high blood sugars this morning and low this evening! Which we are hoping doesn’t mean he is getting a virus!! Tomorrow will be better I hope!
Please keep the Peter’s family in your prayers!!!
Lots of Love!
Carolyn, it was such a wonderful surprise to get to meet you in person Sunday! Thank you and Bo so very much for making it out there. I wish I could have talked to you all night. I just read this, first overnight at the hospital, and so sweet for you to be thinking of me. I’m so inspired by you, and thankful to have met you, and Bo! Looking forward to staying in touch. – Jessica
I will begin my prayers for this family and a strong recovery!
I am so blessed myself to have met the Macon family as they are such amazing people! I am a strong believer that everything happens for a reason as life has continued to prove this true to me. My little Bo is one of the strongest kids I know that in any situation he pulls through; he seems to always be smiling! This kiddo reminds me of how important it is to be so thankful for life and everyone in it! Bo will continue to touch many more lives as he continues his journey. The Macans are wonderful people and God has a plan:)
How precious is our SUPER BO!! Praying for him, you and family. Also I will add the Peter’s to my prayers.
Today several amazing people took the time out of their day to help us! It is hard to put into words how much we appreciate all of the support we have received. I am not sure I can say thank you enough, we sold 400 bracelets today because people in the world still care and are willing to help! Help in every way possible it’s the most amazing feeling in the world to watch people participate and are willing to help!! Thank you! Mandy, you got this ball rolling you took the time and effort out of your busy life away from your family to help my family because you wanted too!!! Thank you thank you thank you!!!!!