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
Wednesday, October 27, 2010
Wednesday, October 6, 2010
The Adventures of The Bionic Boys and Superwoman!
We are about 20 days from Owen's palate closure! It's a really exciting time but it's filled with lots of anxieties as well. It's a complex emotion to realize that all of the things that you have just learned and figured out about your baby are going to change, again.
We have gotten very good at using Owen's adaptive spoons and special technique to feed him purees and cereals. We've had so many small win celebrations- Owen using a bottle, then working up to using a bottle enough to be G-tube free, spoon feeding, then spoon feeding enough to get the all of the required calories he needs... and so on. These little celebrations have, and will continue to be a huge part of Owen's growth and development. On one hand it's wonderful that we will be able to put all of that behind us and move on to a more 'normal' life for him. But on the other it's tough because together we will have to re-learn the skills we have just mastered. I think it's like the equivalent of an accident victim learning to walk again. There is the devastation at the loss of a skill, the frustration of having to re-learn the skill, a lot of work in between and then the celebration and thrill of finally getting it back again... and then you never look back. : )
We have not used Owen's G-tube in over 2 months now!! His Mickey button is still in place on his belly, we have chosen to leave it in place until after his palate surgery. We flush it daily to keep it in good condition, but otherwise it's just there... it's kind of part of him now. It doesn't bother him as far as his mobility and he doesn't really pull on it anymore. It's easier to leave it in and not use it- than to put a new one in if we need it. We know it will come in quite handy after surgery as way to deliver his medications without disturbing him and as way to keep him full and comfortable without going through the discomfort of eating with his mouth right away.
During his palate closure Owen's ENT doctor will be checking on his ear tubes to be sure that they are clear and still properly placed. We are having them re-checked as we have not been able to gain a positive hearing screen for Owen. We are reasonably certain he is hearing well out of his left ear, but have not been able to rule out hearing loss in his right ear. Checking his tubes is the first step in re-evaluating his hearing abilities.
We had an appointment with Owen's endochronologist last week. We reviewed his current list of medications and what times of day we are giving them. Owen needs medication 6 times a day and they are all at very specific times so not to interfere with each other. We are trying to mimic the bodies natural hormone cycle. Only God and Mother Nature know his perfect balance, but we try pretty hard to keep it close to what his body would naturally do. His smiles and content attitude tells me we must be doing something right! We thank God everyday for the availability of his medications, without them Owen would not have made it through the first hours of life... not to mention the first 9 months! We had blood work done (our regular 3 month routine hormone check) and so far so good! We only had to slightly increase a couple of his medications because of his growth. Owen is hanging out at the 19# mark and gaining length at every appointment.
On Monday we had another follow-up appointment for his eyes in Stillwater, MN. His first eye surgery was a success, however it is looking more apparent that a second eye surgery will be needed to adjust the outer muscles of his eyes. We are still seeing some inward turning tendencies and with that can tell that his outer eye muscles are also weak. We were emotionally prepared for the possibility and we are expecting to schedule another eye surgery for the end of this year. Since his first eye surgery we have seen great improvements in his visual abilities and visual responses... now we're just helping him to get things tuned up!
Ashton is making steady strides in his gross motor development. He is seeing his PT at school two times a week and is really enjoying his PT sessions back at school with his friends. He had a chance to see his old PT that has been out on maternity leave for the first time in 8 weeks! He was really excited to see her and she noted she is seeing some major changes in his motor skills and overall development! He has been frequently asking us to 'walk a little bit' -meaning he wants us to help him walk! This is a BIG DEAL... it means walking, not crawling is becoming his preference! He is CHOOSING to walk!! Waaa hoooo! I think we're on our way!
It's apparent to us that his body is responding to and processing the growth hormone supplement well. He is gaining height and weight as well as appetite!! He seems to always be munching on something or asking for more food.. this is a little out of the norm for him. Prior to beginning growth hormone he ate enough to maintain his current size (because that's what his body told him to do... he simply wasn't growing and didn't need the extra food). Now he's really eating like a toddler, and out eating Kiera on many occasions!
Kiera is a big girl now, she's such a Superwoman... I think she was born a big girl! She is so ready and tries to do things that all of the big kids do- and most of the time she can do them just fine! She really enjoys spending time outdoors with us and running around like crazy! She runs everywhere- and then usually comes to a sudden stop and tells me 'look Mommy- I'm fast!' Her social and verbal abilities are beyond her 2 years! She is quite verbal and has no problem expressing what she wants and likes... or dislikes! :)
While we have had a lull between surgeries and appointments we have enjoyed time together as a family. We went to the Fawn Da Rosa animal park last weekend and had lots of fun with the animals and hope to go to the Pumpkin Patch this weekend. We're getting a lot better and getting all 3 of them out of the house together.. it requires a significant amount of planning and wrangling, but we enjoy getting them out and about as we know they love it too. We've been very lucky to have our niece Nikki Fox around often to lend a hand, she is truly a treat to have around and such a big help with the kids! We are very blessed to have her so close and so willing to help!
Shelby and I are celebrating our 5 year wedding anniversary this weekend- we have been given the opportunity to get away for a night, thanks to Grandma and Grandpa Fox. We've been through a lot in the last 5 years- cheers to many more years to come! <3
Love and Hugs to you all! We couldn't do it without you!
Sarah & Shelby Fox
We have gotten very good at using Owen's adaptive spoons and special technique to feed him purees and cereals. We've had so many small win celebrations- Owen using a bottle, then working up to using a bottle enough to be G-tube free, spoon feeding, then spoon feeding enough to get the all of the required calories he needs... and so on. These little celebrations have, and will continue to be a huge part of Owen's growth and development. On one hand it's wonderful that we will be able to put all of that behind us and move on to a more 'normal' life for him. But on the other it's tough because together we will have to re-learn the skills we have just mastered. I think it's like the equivalent of an accident victim learning to walk again. There is the devastation at the loss of a skill, the frustration of having to re-learn the skill, a lot of work in between and then the celebration and thrill of finally getting it back again... and then you never look back. : )
We have not used Owen's G-tube in over 2 months now!! His Mickey button is still in place on his belly, we have chosen to leave it in place until after his palate surgery. We flush it daily to keep it in good condition, but otherwise it's just there... it's kind of part of him now. It doesn't bother him as far as his mobility and he doesn't really pull on it anymore. It's easier to leave it in and not use it- than to put a new one in if we need it. We know it will come in quite handy after surgery as way to deliver his medications without disturbing him and as way to keep him full and comfortable without going through the discomfort of eating with his mouth right away.
During his palate closure Owen's ENT doctor will be checking on his ear tubes to be sure that they are clear and still properly placed. We are having them re-checked as we have not been able to gain a positive hearing screen for Owen. We are reasonably certain he is hearing well out of his left ear, but have not been able to rule out hearing loss in his right ear. Checking his tubes is the first step in re-evaluating his hearing abilities.
We had an appointment with Owen's endochronologist last week. We reviewed his current list of medications and what times of day we are giving them. Owen needs medication 6 times a day and they are all at very specific times so not to interfere with each other. We are trying to mimic the bodies natural hormone cycle. Only God and Mother Nature know his perfect balance, but we try pretty hard to keep it close to what his body would naturally do. His smiles and content attitude tells me we must be doing something right! We thank God everyday for the availability of his medications, without them Owen would not have made it through the first hours of life... not to mention the first 9 months! We had blood work done (our regular 3 month routine hormone check) and so far so good! We only had to slightly increase a couple of his medications because of his growth. Owen is hanging out at the 19# mark and gaining length at every appointment.
On Monday we had another follow-up appointment for his eyes in Stillwater, MN. His first eye surgery was a success, however it is looking more apparent that a second eye surgery will be needed to adjust the outer muscles of his eyes. We are still seeing some inward turning tendencies and with that can tell that his outer eye muscles are also weak. We were emotionally prepared for the possibility and we are expecting to schedule another eye surgery for the end of this year. Since his first eye surgery we have seen great improvements in his visual abilities and visual responses... now we're just helping him to get things tuned up!
Ashton is making steady strides in his gross motor development. He is seeing his PT at school two times a week and is really enjoying his PT sessions back at school with his friends. He had a chance to see his old PT that has been out on maternity leave for the first time in 8 weeks! He was really excited to see her and she noted she is seeing some major changes in his motor skills and overall development! He has been frequently asking us to 'walk a little bit' -meaning he wants us to help him walk! This is a BIG DEAL... it means walking, not crawling is becoming his preference! He is CHOOSING to walk!! Waaa hoooo! I think we're on our way!
It's apparent to us that his body is responding to and processing the growth hormone supplement well. He is gaining height and weight as well as appetite!! He seems to always be munching on something or asking for more food.. this is a little out of the norm for him. Prior to beginning growth hormone he ate enough to maintain his current size (because that's what his body told him to do... he simply wasn't growing and didn't need the extra food). Now he's really eating like a toddler, and out eating Kiera on many occasions!
Kiera is a big girl now, she's such a Superwoman... I think she was born a big girl! She is so ready and tries to do things that all of the big kids do- and most of the time she can do them just fine! She really enjoys spending time outdoors with us and running around like crazy! She runs everywhere- and then usually comes to a sudden stop and tells me 'look Mommy- I'm fast!' Her social and verbal abilities are beyond her 2 years! She is quite verbal and has no problem expressing what she wants and likes... or dislikes! :)
While we have had a lull between surgeries and appointments we have enjoyed time together as a family. We went to the Fawn Da Rosa animal park last weekend and had lots of fun with the animals and hope to go to the Pumpkin Patch this weekend. We're getting a lot better and getting all 3 of them out of the house together.. it requires a significant amount of planning and wrangling, but we enjoy getting them out and about as we know they love it too. We've been very lucky to have our niece Nikki Fox around often to lend a hand, she is truly a treat to have around and such a big help with the kids! We are very blessed to have her so close and so willing to help!
Shelby and I are celebrating our 5 year wedding anniversary this weekend- we have been given the opportunity to get away for a night, thanks to Grandma and Grandpa Fox. We've been through a lot in the last 5 years- cheers to many more years to come! <3
Love and Hugs to you all! We couldn't do it without you!
Sarah & Shelby Fox
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