As I sit here to start to blog I am reading another blog, It just put my life in to perspective because as I was going to sit here and complain about everything that is wrong someone has it much worse! Much sicker kids much bigger hurdles, yes we still have our fair share of hurdles but not compared to some! So let me start by saying I am not complaining I am venting letting it all lose! LOL! Just agree with me! SO let me tell you about out KU MED journey! So Since Mr Bo is almost well 11 months old today and still a whooping 12.9lbs! We decided to start testing his sugar so the first 3 days it was great but Monday the 13th I test it at 7am and it is 26! YES 26! I didn’t freak I called the Dr and of course we had to go in. We get there the do a few things and they need to get some urine from him so they send me home witht he stuff to get it that next morning! We had therapy later that day and again during therapy it dropped to 36 so Shannon our Wonderful OT gives him some yummy yogurt and I call again. First thing Tuesday morning we drop off his urine and it was crystal clear like water, i didn’t think much I don’t really know what its supposed to look like? I have done my pee detective work yet! SO with in about 1 hour we get a phone call its My Dr he says he doesn’t like the way hie urine looks he was going to call his long time friend and head Endocrinologist at KU he would call me back! With in 30 min Dr Migheigt Calls me personally at home and says I need to bring Him to KU NOW? I say ok, get packed up and head to KU My mom kept Brooklynn for me. We get to KU get checked in and a BOAT load of Dr came in and wanted to know his history, UGH so I started in our LONG history. About an hour later the Endro came in and told us what he was going to do. First just wait and see if his sugar drops in the next 24 hours, OK! So it go to 60 but he wanted it to get to 50 or lower. The next day wed they were checking his sugar every 4 hours, around 3pm I could see the change in Bo and even the Peds Dr said he looked like his sugar was dropping at 4 his sugar was 59 after eating normal and everything, so around 5:30 Bo got very irritable and was flush so I made them recheck it and it was 24! So they had to take a LOT of blood from him. I fed him and he was super pissed and irritable so we had a super long night! The Dr came in and said they were going to do a water deprivation test in him starting at 7am so he had to Fast from 5am on! OK well his blood pressure was super low and so was his sugar so they moved him to the PICU! YEP that was a place let me tell ya! So they were still going to try to do the test at 7am if at anytime his pressure dropped was not tolerating git they would stop. So On top of his IV in his head they had to do another on in his poor arm, where he has so many scares already from he NICU bless his heart, they couldn’t get any lines in SO after the 4th try and now its 9am and has had no food for 5 hours they call the “IV TEAM” They lady got it in really in a half a sec. So we can begin OH wait they have to put a catheter in him!! UGH! that was NOT fun, so we get started every hour on the hour they draw his blood and take his urine for 6 hours!!!6 my baby who only weight a large 12.9 lbs had to fast for almost 13 hours it was HEART BREAKING to say the least! They had to stop the test at 3 because his sugar was so low they were hoping thy had all they needed. I was about to eat my arm off so John let me go down and eat and just walk around, The PICU SUCKS just a stupid wooden rocking chair it was brutal! SO we proceed the Endro Dr came in and tells us that some of his blood work is in and Bo produces NO Growth Hormone NONE not even a Millimeter? OK so we have to so a Hormone test then an MRI of his Pituitary gland to see if there is a tumor or something blocking it!!! At this point I thought I was going to vomit I had really only slept about 4 hours in 48 hours now and now they are talking about making him fast again and doing another long test and an MRI! WHAT THE HELL! Even better the Hormone test was going to start at 4am. SO Bo has some food and a Bottle at 9 and can’t eat after that until after his MRI which is at 12:30 the next day! Let me just tell you about our night! It was the worst night of my life, He cried for 3 solid hours from 11-2 since we were in the PICU we couldn’t walk the halls or anything the poor Nurse kept coming in and asking me if I needed anything, finally at 2 we both cried and I walked in a circle until the came in at 3:30 to get him started for the test so neither one of us slept ALL NIGHT! they started the test and the Med they had to put in his IV totally knocked him out I was not sure it it was because he was so exhausted that he just slept? SO 6am comes around I am sitting in this terrible chair and his blood pressure was LOW I mean LOW 70/29 then 68/22 I call the nurse because the have to take his pressure every 5 min then it was 69/24 so the nurse calls the Dr and checked his sugar it was 316!!! WHAT 316, so 45 min later his sugar was so high on the monitor it only said HIGH no NUMBER I was freaking out! the Dr comes in you could tell we totally woke her up she was like stop the test open his Iv all the way to get some fluid in him, Mind you the whole time he is sound asleep hardly moves at all. Had to call John at 7 and tell him how terrible our night was. He took Leksi and Johnny to school and headed up. My brain was about to Blow up seriously if I didn’t get the hell out of that room. So when John got there I crawled into Bo’s Bed which was a sight my big body in it, don’t worry it had a weight limit of 350lbs I was good! So I slept for about an hour and then it was time for the MRI, that I was dreading having to put him to sleep! While we sat and waited for the MRI I walked I had, John sat and waited for the up dated from the Nurse then when I got back John went and got a coffee. Then they came out and were pretty much running they had oxygen on him and again I could feel my heart in my stomach as they are walking so fast to the elevator they tell us to get another one we cant ride on it with them! HOLY CRAP I could feel tears filling my eyes and JOhn was just rubbing my back and I swear the elevator took 30 min. AS we sprint to the NICU the are checking his pressure because it was low during the MRI, the Anaesthesiologist kept saying he did well OK then if he did well why is he on Oxygen. All i kept seeing was the day in the NICU he stopped breathing turned Blue and next thing I know their were 5 nurses working on him! UGH~ SO here we are the 28th of Sept we see the Endro tomorrow and will know for sure if he has diabetes for sum reason its hard to diagnose in babies! Of course it is! But his one blood test his insulin levels were OK not great but not terrible, so where does that leave us? Checking his sugar 3 times a day and waiting! We start Hormone Injections On Sunday we know that much! We will know more tomorrow!
BirdsMama - Carolyn you are a ROCK!! You are an amazing mother, daughter, friend and wife! Little Bo is a fighter don't you worry!! He's got big plans for this world I can just feel it and see it in his eyes!! You hang in there and know that if you ever need anything I'm always here….just like you have been for me!! Love ya!! Give that BO a big hug and Kiss from Aunt Candie!! 🙂
Amy - Carolyn, I had no idea you guys had been through so many ups & downs. I cannot imagine what it is like to see your child in that kind of agony, thinking the worst, praying for the best. You obviously have a wonderful & supportive husband & I know you can depend on your family, but if you ever need ANYTHING, no matter how big or small, you can call Jack or I any time. since we have no kids, we can pick up & leave any time. It is hard to believe that such a little guy has to go through so much, but babies can endure so much more than adults & recover so much faster. I hope they can find answers for you soon so you all can relax & enjoy life. I will be thinking about you all. Just remember it HAS to get better & it will. Hang in there, Amy
Pamela - You, my friend, are a rock star. One step at a time:)
Carrie - You're the strongest woman I know. I love ya girl!!