I first want to thank each and everyone who has sent prayers and well wishes our way. We are so blessed to be surrounded by such wonderful and supportive friends and family. We couldn't get through the difficult times our family has faced and the challenges yet to come without you. We are sorry for and miss the friendships and relationships that have not got the attention they deserve as we take the time to focus on the health and well being of our family, thanks for sticking with us guys! God bless you all.
We now have Owen's 4th surgery in his short 10 months in this world under our belt and inches to go to get to the goal line. His surgery went well, however it wasn't without the hiccups we have come to expect. The surgery team was running behind on Monday and it was difficult to keep Owen happy for that hour. Just like adults, children also have to fast (no food) for hours prior surgery. We were able to keep him distracted and comfortable for most of the time, however it's impossible to explain to a baby why you are denying them food. The sweet 'toy lady' in the surgery waiting did her best to find toys to keep him smiling. :) When he was finally wheeled to surgery we were ushered to the surgery waiting. The familiarity of the situation doesn't make it any easier. Every surgery and every wait is just as intense as the last.
It was a tense couple of hours, but when it was done- each doctor came out of surgery to talk to us about the outcome. We learned that Owen's ear tubes had fallen out and lodged in the ear canal and allowed fluid to build up in his ear canal causing an ear infection. (We would have never guessed- he never showed sign of pain or infection!..even at his pre-op check-up) New tubes were put in place and we were prescribed some antibiotic ear drops to use twice a day. Finally Dr. Wood (plastic surgeon) came out to talk to us- he told us that Owen's palate closure went wonderfully. I will never cease to be amazed by the talent and artistry the plastic surgeons have... I don't know where they found the tissues and flesh to put his little mouth together, but just as they told us- 'everything he needs is there.' -just like the things you buy at the store: some assembly required... all the parts are in the box and look perfect, there just not in the right places yet. Sometimes it pays to have the professional assembly team put it together for you :)
When we were finally able to see Owen in recovery, he looked pretty rough. It looked like he got punched in the nose by a horse. We knew the nursing staff was keeping him comfortable with pain medication, but it's heartbreaking to see your baby like that- I don't wish it on anyone. Despite the extra preparations, extra prescription information provided and phone calls we made to ensure his medications were available and ready when he needed them, confusion ensued. This has been the BIGGEST hurdle for us during any surgical procedure. Owens medications are literally the reason why he is breathing... for some reason, every medical facility we have worked with fails to recognize this. Owen was prescribed triple doses for 24 hours following surgery of his cortisol and an extra 15mg intravenously during surgery. The medical staff didn't get it. They couldn't understand why if he had 15mg during surgery why he would need more after surgery. BECAUSE HIS BODY DOES NOT MAKE IT! His body is incapable of handling the stress of surgery, he has no fight or flight response. If we don't give him the medication to handle it... his body shuts down. After 4 hours of battling and the nurses calling his endocrine doctor to reaffirm the prescribed regiment they gave him his triple dose of cortisol 4 hours late. The proof was in the pudding... during that 4 hours of not giving him his medication they drew blood for lab work. The lab work came back and it showed his potassium levels were very high. His body was reacting badly to not having his medication and began to spiral downward.
A second draw was ordered after his medication.... the lab techs were unable to locate a vein. After trying 4 times, they struck out. They have a 4 stick rule- if they try 4 times and miss they have to wait 24 hours to try again. Because waiting 24 hours to ensure his levels were normalizing was not ideal they had to call in the Pick staff. We waited another 1 1/2 hours for the traveling pro staff to get to the hospital and with a little ultrasound machine and one try- they got the tiny bit of blood they needed to re-test.... and just as we expected while properly medicated his levels came back normal! The Pediatric Doctor on duty came in and talked to us and couldn't believe how much we knew about Owen's health and consequences of being unmedicated- he admitted we would likely get a normal result once his medication was given properly. It's infuriating to me that Owen's medications continue to be a problem during his hospital stays. Even things as small as not giving any medications within 2 hours of his Thyroid medication because it is notorious for drug interactions is not recognized, we have to constantly remind them. Thank God we are able to be there with him and advocate on his behalf. I am terrified of what could happen if we weren't able to be there.
I know that Owen's pituitary condition is rare, but the prior arrangements and extra efforts we made so they would 'get it' before his arrival was wasted time. I don't have time to waste and neither does Owen.
Thankfully we were discharged on Tuesday morning. We were home by 2pm and we're happy to report that Owen is doing well. He's very sore and not really himself yet, but in true Owen style- he's still giving me smiles. Grandpa and Grandma Fox were again able to stay at our house and watch Ashton and Kiera for us while we were away with Owen. I don't know how we would make it through these times without them. It's a real comfort to leave them knowing they will be cared for 120%. Al & Deb are an amazing blessing to us and our kids.
Today is kind of a 'burn out' day for us. The stress and anxiety leading up to surgery and through the hospital stay has left us emotionally and physically exhausted. We're kind of fried. Shelby went to work today because he has to. He was able to take off Monday and Tuesday for family medical leave, however it is unpaid and he is out of vacation and paid days off. Our journey has been a long one this year and isn't done yet. We haven't been without heartbreak, emotional highs & lows, financial stress, terrifying moments, and some of the most miraculous moments of our lives. We work to count our blessings everyday and thank God for the things we need and beautiful family he has provided us with. God is great, and He will get us through this -we believe it.
So, fourth down and inches to go... After all of the football hoopla this week, this is the only thing I could think of. Owen's fourth surgery is down and we have a few more inches to go to get to the goal line and close the book on 2010. We have a month full of follow-up appointments and check-ups in November. We are looking at his eyes again and praying he will not need the second corrective surgery... we see improvement every day in his focus and object tracking, please keep praying for his continued improvement. We've got follow up appointments for Ashton at Mayo on the 12th to follow his pituitary function and take another look at the genetics puzzle. Then we're on to the Holidays and Owen's first birthday. We have so much to celebrate! Thank you God for keeping your loving arms around our family and getting us through the biggest part of 2010, we pray for your continued guidance, mercy and love. Amen.
Love and Hugs Always, Sarah and Shelby Fox Family
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