BGVTers in the house!!!! Hi Hi Hi - It is me your fave sliver of liver giver signing on to say Hola!
It has been too long and for that I am sorry. I am telling you this liver giving thing + being a Mama + just trying to motor around and do my thing is exhausting. Literally I am having a hard time keeping my eyes open after the kids go to bed! Tonight is good I got like a 3.5 hour nap in today (which was highly needed) so let me bring you up to speed!
We have been officially out of the hospital for 4 days! Yes you read that right 4 days! It feels like it has been so much longer. Let me bring you up to speed.
Before we left the hospital we discovered that Brodie is starting to… teethe. Seriously. Like the boy is not going through enough but now he is turning into a drooly, wet, gummy, mouthy mess – HA! Poor guy – liver transplant in the driver seat – this thing called being a baby and growing in the passenger seat. Sooooo besides that…..
Brodie is doing FAB.U.LOUS. yes yes yes… This boy is amazing.
I am not going to lie – on Saturday we basically had a panic attack. Brodie was irritable, crying, not eating (which was most concerning), uncomfortable and just 100% not himself. We reached out to his Nurse Tichy (who has been his and our life line through this) and decided we would give it another couple of hours before we pushed the panic button. And just like that all at once Brodie decided to eat on point. He turned the corner and allowed us to enjoy trick or treat with Harper as Grammy snoodled him indoors.
Sunday he was like a new little man – eating on schedule, happy and only normal semi-irritability - just like a little baby should be. So we snuggled him extra and made sure he was extra comfy.
So all through this what I have not told you yet is the rigorous medicine schedule we are on. We need to treat two things – Rejection and Infection. We are on a total of eight medications. This would not be so bad if there wasn’t a bit of trickiness to this all – there are some meds that are every day, three days a week and when needed. Some of those meds are given once, twice or four times a day. And one of our meds is time sensitive it has to be given at the same time every day – Always. No exceptions. Period.
Transplant rejection occurs when transplanted tissue is rejected by the recipient's immune system, which destroys the transplanted tissue. In order to prevent this from happening, we use medication that is very strictly facilitated at strict hours – it has to be given 12 hours apart each day. This is to regulate the immune system so it does not start “attacking” the new liver. Talk about time management pressure!!!
You can ask my family – especially my brother Pat (because this has always driven him nuts about me). Especially on Sunday morning when the car was loaded up with my two brothers, sister, Mother and Father all ready to go to church and I kept them waiting and waiting while I finalized “my church look”. I have never ever been good with punctuality in my personal life. It is not that I don’t have the intention to be on time – I do! But the minute my personal clock is going, my time management skills fly out the door and I am left wondering what happened to the “hour” that I had... So you can imagine the stress I am feeling knowing that I am now under a strict clock… I think sometimes God has a hilarious sense of humor.
On Monday we had a big day at the hospital we had a special date with our favorite phlebotomist (John) and then had our first round of “Clinics” – this is actually something awesome the Cleveland Clinic does – they bring everyone to us in one big appointment instead of us scheduling 8 – 10 different appointments with the rest of our team - all that are helping Brodie.
We have to meet with John first thing in the morning before we give Brodie his medication to see where his levels are – specifically with Prograf. If they are low, it will tell us to increase the dosage or vice versa. We are still trying to figure out what his “baseline dosage” is. There has been so much change with him over the past week that the exact dose has not been pinpointed (i.e. his intake in feedings has increased, all of the medications have fluctuated – all contributors to differences and making it more difficult to figure out his right levels and what the exact “concoction” is).
Later on Monday, we met with the team in our first Clinic (consisting of GI – Dr. Radahkrishnan and team/ Pharmacist / Dietician / Psychology / Surgeon – Dr. Hashimoto / Transplant Nurse Pre (Tichy) & Post (Filisky)/ and others) they all were pleased with how Brodie was doing – he was a little fussy at first but turned on his charm of smiles and coos – I think it is his way of saying “You all are amazing – thanks for saving my life.”
We need to continue to watch his weight and make sure he adjusting to medications and that levels stay where they need to be to keep him “healthy” and out of rejection mode – the goal is over the next 90 days to wean him off of 5 – 6 medications so ultimately he will only be on 1 – 2 after that.
Are you exhausted keeping up with all of this yet? This little man only has appx 500 professionals making sure his health is up to snuff. When I was working I used to rely on the saying “It take a village to raise a child” now I am convinced we are out of village mode and into a small country mode with everyone making sure our little guy comes out of this a champ.
Tonight, we were putting Harper to bed and Russ got Brodie up from a nap and we were all in Harper’s room and a Goofy hat was plopped on Brodie’s head and we were all giggling and being silly - a typical family of four and I couldn’t help think to myself how happy I am to be where I am right now.
Life is confusing. It is sooooo not clearly defined – I am not sure what next week will bring or even tomorrow – but somehow that is okay. We will figure it out. Down the road this will be a blip on the radar. We need to keep laughing. We need keep loving. We need to take advice from one of our favorite fish in Finding Nemo – Dory and “JUST KEEP SWIMMING” there is no other option. Just keep swimming. All of us need to do this – whether we just have a bad day, are going through a life test – whatever it may be – the sun always rises and we need to do what Dory says – “Just. Keep. Swimming.”
We got this and so do you. Keep your scuba gear on and flippers too – and do it - just keep swimming.
Hugs and Love to you ALL!
XO - TT