Last night, as I watched the ball drop while holding both kids on my lap, I couldn't help but reflect on 2013 and where I was on New Year's Eve a year ago. December 31, 2012, I was rocking Gavin in his hospital room after five days of test after test and no answers as to why his abdomen was swollen and why he was unable to eat. The end of 2012 was rough to say the least, - Chris was deployed, Gavin made a dramatic entrance two weeks early, had two surgeries his first month of life and survived a very scary day involving a crash cart by his bed in ICU. He required oxygen his first 40 days of life. I learned how to insert his feeding tube and test for placement since he only fed by a tube, and through the few tips I learned from the OTs at Duke, I taught him how to eat from a bottle. On December 26, after having him home from the hospital a little less than a month, I found myself on the phone with a 911 operator with a shaky voice and trembling hands as I waited on an ambulance to rush Gavin to the hospital...again.
It took nearly two weeks to find a diagnosis for Gavin. But sitting in that rocking chair last New Year's Eve, uncertain of what was coming, I held my son with silent tears streaming down my face begging God to not take my baby from me and to provide the doctors with the wisdom they needed to diagnosis him and find a treatment. That treatment ended up being an emergency colostomy and learning to care of an ostomy, and eventually learning to put Gavin's intestines back in his body on a regular basis, was certainly something I was not prepared for. It has been nearly a year now that he has had the colostomy, and I have to say it's not nearly as bad as I originally thought it would be. It's just our normal life and it's not nearly the mountain of impossibility I had expected.
2013 started off scary. Gavin had three operations and two heart catherizations. We spent A LOT of time in the hospital and many hours in doctor's offices and testing areas and early intervention therapies. I was overwhelmed and exhausted at tackling life with two kids, working full time and dealing with all of the medical complications with Chris half a world away. I had the Marine Corps tell me that Gavin's situation was "unfortunate", but not an emergency. They also told me that if my son wasn't going to be dead in 72 hours, then his surgery and condition did not constitute an emergency. Life was hard, overwhelming and I felt downright defeated.
But, when God gives us more than we can handle, he sends angels to fill the gaps. He sent people to bring or deliver dinner. He had churches all over the country lifting Gavin in prayer. He led a complete stranger into my home to deliver a year supply of diapers, maid service, toys for Lorelai, an incredible spa package and a night on the Spirit of Norfolk. So many friends, family and strangers alike came together and wrote our Congressman to help file a Congressional Inquiry to get Chris home. And it worked. Strangers became friends and volunteered to help change Gavin's ostomy bags. And the outpouring of love and encouragement our family has received far exceeds anything I could have ever imagined. All of these things....these signs of humanity's beauty, empathy and compassion....all of these people who took from their family to give to mine...it all has combined to change me forever.
Despite all of the challenges and hardships of 2013, I will always look back on this year and remember these great moments. I cannot adequately describe what these moments have meant to me. I have been humbled, encouraged and inspired. 2013 changed how I look at the world. I have been through hell this year, but it doesn't feel that way. I feel as though I have been blessed beyond anything I deserve and I am eternally grateful for everyone that came to fill the gaps and show me that my journey was most certainly a blessing and not a hardship. So has this year been hell? Sure, but that's not how I see it or how I'll remember it years down the road. Someone once told me that a diamond is nothing more than a piece of coal that made it through the fire. I'm not quite a diamond, but not so much coal any more either. :)
So, as I look forward to 2014, I face this new year with many anxieties as I did last year. Tomorrow, Gavin will go into the hospital in preparation for his sixth surgery. He will go through some surgical prep procedures tomorrow, and then he will go into the OR first thing on Friday. This is a BIG surgery for him. We have our normal anesthesia concerns, but this surgery is going to reconnect and close his colostomy and to essentially make him whole again. This should be a 7-10 day hospital stay. While sitting in surgery waiting rooms doesn't necessarily get easier, it does become somewhat normal. The thing that I will never get used to though, is walking my baby to the double doors of the operating room and handing him over to a nurse before turning and walking away. That moment is always scary and intimidating as I kiss him and pray for God to watch over him through the next procedure he is going to endure. I find comfort in Gavin's strength and fighting spirit.
Gavin laughs hysterically these days and has started mimicking things that we do. He's sitting on his own and is making great strides in eating solid foods. He has the absolute best personality and is such a light in this world. Lorelai adores him and he loves watching her and playing with her. Their love for each other brings tears to my eyes sometimes. Gavin has been through so much in his 14 months, but he is stronger and happier than ever. If you could lift him in prayer tomorrow, Friday and through his recovery we would greatly appreciate it.
2014 is going to start off with major changes for my family. Most are a massive leap of faith and the future is very scary and uncertain. But 2013 started off the same way, and I think it ended up being an incredible year full of hope, faith and love.
Wednesday, January 1, 2014
Tuesday, November 5, 2013
More Hurdles
Gavin went to see his General Surgeon today for a pre-op visit. We were expecting to schedule his pull-through procedure which would close his ostomy. Cardiac anesthesia was on board to take his case in the OR and the PICU was ready to take Gavin in during recovery.
But, we recently received a diagnosis from Duke that said Gavin has severely obstructed sleep apnea. We knew that translated to more attentive anesthesia care and ICU recovery after surgery, but that's all we were expecting. Today, the surgeon halted surgery until Gavin has a consult with ENT.
Luckily, our surgeon had already spoke with doctors from the ENT clinic, so we have an appointment first thing in the morning. If the ENT says Gavin's tonsils or adenoids need to come out, then that has to occur before his general surgery. This way, his risks under prolonged anesthesia are mitigated. That is an extra surgery we weren't expecting, and we definitely didn't expect anything to stand in the way of surgery this week. But, at least the care is comprehensive. So Gavin may still be in surgery this week, but just not the one we were expecting. And as soon as he recovers from that one, he will be going in to have his ostomy closed. That would make six surgeries for our little man.
It is nice to finally have a diagnosis that may explain his issues with anesthesia though. His last three times under anesthesia at the Children's Hospital here, I have stressed and emphasized to anesthesiology that Gavin has issues coming off of the ventilator. And every time I have been ignored and watched Gavin struggle to recover in the Post Anesthesia Care Unit. Having this diagnosis helps the doctors listen, but at the same time, it makes me livid.
I understand to many doctors, that I am just a mom. But I am a mom of a sick child. A mom who knows how her son cries sound coming off the ventilator. A mom who has had to hold oxygen to her son's face to stop him from de-sating. A mom who has spent MONTHS in the hospital by her son's bed. A mom who has seen cardiologists, general surgeons, audiologists, opthamologists, various ICU doctors, hospitalists and primary care physicians. A mom who has seen great medical care and outright negligent patient care. A mom who has sat in the waiting room for 8 hours while her son was in open heart surgery without positive expectations. A mom who knows how many swallows her son can take on a bottle before choking. A mom who knows how to place a feeding tube so her son can eat. A mom who knows how to put her son's intestines back into his body. So while doctors all of a sudden listen to a diagnosis such as severely obstructed sleep apnea, I, as a mom, have communicated the symptoms prior to a diagnosis. He desats significantly in his sleep. He breathes loudly. He has cardiac and lung issues. He spent 45 days on ventilators, CPAP machines, nasal cannulas and blow by oxygen. He has been under anesthesia six times and exhibits the same symptoms coming out. But, apparently, he has had to struggle because I'm just a mom. What do I know? Now that there's a clinical diagnosis, people are bending over backward to do things right.
Now, please understand that I am grateful for that. But I am a mom of a sick child. I expect doctors and nurses to listen to me when I say something is wrong with my child. To listen when I advocate for my child and not outright ignore me. This didn't start out as a rant, but there is a lot of frustration in my heart right now. I feel like I should have fought harder than I have. I feel justified in my anger and frustration towards anesthesiologists, but I also feel outrage at the fact that they treated me like I was just another mom. Anesthesiologists only deal with my child for a moment and then they are gone from his care.
But they must understand what it means to be a mom of a sick child. I have watched my child struggle for life. I have watched him code. I have spent days and nights by his ICU bed just praying he would open his eyes. So yes, I am just a mom. But I am a mom of a sick child. Don't mess with my son, because I will take him to a hospital where anesthesiology does listen and does respond to his physical cues instead of treating him like another patient in the queue. Because that care does exist. I have experienced it with my son, and that is what makes substandard care so much more infuriating.
I apologize for the long rant, but I do think it's important to share the struggles and the frustrations that come along with raising a sick child. I do try to focus on the positive and stay upbeat. Our surgeons are wonderful, and this issue has only been with anesthesiology. But I think, to understand why we are so grateful for the good times, it is important to note the struggles, fear, frustration and anger too.
We could certainly use prayers for Gavin. November is going to be a big month for him with either one or two surgeries. Hopefully, this new diagnosis will ensure him the care he needs and deserves. The little guy is still growing strong and fighting hard. No matter how mad or frustrated I get, his smile and his coos make everything better. He always calms my heart no matter what struggle we are facing.
But, we recently received a diagnosis from Duke that said Gavin has severely obstructed sleep apnea. We knew that translated to more attentive anesthesia care and ICU recovery after surgery, but that's all we were expecting. Today, the surgeon halted surgery until Gavin has a consult with ENT.
Luckily, our surgeon had already spoke with doctors from the ENT clinic, so we have an appointment first thing in the morning. If the ENT says Gavin's tonsils or adenoids need to come out, then that has to occur before his general surgery. This way, his risks under prolonged anesthesia are mitigated. That is an extra surgery we weren't expecting, and we definitely didn't expect anything to stand in the way of surgery this week. But, at least the care is comprehensive. So Gavin may still be in surgery this week, but just not the one we were expecting. And as soon as he recovers from that one, he will be going in to have his ostomy closed. That would make six surgeries for our little man.
It is nice to finally have a diagnosis that may explain his issues with anesthesia though. His last three times under anesthesia at the Children's Hospital here, I have stressed and emphasized to anesthesiology that Gavin has issues coming off of the ventilator. And every time I have been ignored and watched Gavin struggle to recover in the Post Anesthesia Care Unit. Having this diagnosis helps the doctors listen, but at the same time, it makes me livid.
I understand to many doctors, that I am just a mom. But I am a mom of a sick child. A mom who knows how her son cries sound coming off the ventilator. A mom who has had to hold oxygen to her son's face to stop him from de-sating. A mom who has spent MONTHS in the hospital by her son's bed. A mom who has seen cardiologists, general surgeons, audiologists, opthamologists, various ICU doctors, hospitalists and primary care physicians. A mom who has seen great medical care and outright negligent patient care. A mom who has sat in the waiting room for 8 hours while her son was in open heart surgery without positive expectations. A mom who knows how many swallows her son can take on a bottle before choking. A mom who knows how to place a feeding tube so her son can eat. A mom who knows how to put her son's intestines back into his body. So while doctors all of a sudden listen to a diagnosis such as severely obstructed sleep apnea, I, as a mom, have communicated the symptoms prior to a diagnosis. He desats significantly in his sleep. He breathes loudly. He has cardiac and lung issues. He spent 45 days on ventilators, CPAP machines, nasal cannulas and blow by oxygen. He has been under anesthesia six times and exhibits the same symptoms coming out. But, apparently, he has had to struggle because I'm just a mom. What do I know? Now that there's a clinical diagnosis, people are bending over backward to do things right.
Now, please understand that I am grateful for that. But I am a mom of a sick child. I expect doctors and nurses to listen to me when I say something is wrong with my child. To listen when I advocate for my child and not outright ignore me. This didn't start out as a rant, but there is a lot of frustration in my heart right now. I feel like I should have fought harder than I have. I feel justified in my anger and frustration towards anesthesiologists, but I also feel outrage at the fact that they treated me like I was just another mom. Anesthesiologists only deal with my child for a moment and then they are gone from his care.
But they must understand what it means to be a mom of a sick child. I have watched my child struggle for life. I have watched him code. I have spent days and nights by his ICU bed just praying he would open his eyes. So yes, I am just a mom. But I am a mom of a sick child. Don't mess with my son, because I will take him to a hospital where anesthesiology does listen and does respond to his physical cues instead of treating him like another patient in the queue. Because that care does exist. I have experienced it with my son, and that is what makes substandard care so much more infuriating.
I apologize for the long rant, but I do think it's important to share the struggles and the frustrations that come along with raising a sick child. I do try to focus on the positive and stay upbeat. Our surgeons are wonderful, and this issue has only been with anesthesiology. But I think, to understand why we are so grateful for the good times, it is important to note the struggles, fear, frustration and anger too.
We could certainly use prayers for Gavin. November is going to be a big month for him with either one or two surgeries. Hopefully, this new diagnosis will ensure him the care he needs and deserves. The little guy is still growing strong and fighting hard. No matter how mad or frustrated I get, his smile and his coos make everything better. He always calms my heart no matter what struggle we are facing.
Friday, October 25, 2013
A Year of Blessings
On Saturday, our little man turned one. What an incredible journey this past year has been. From the all consuming fear we felt with his arrival, to the triumphant joy we felt as he overcame obstacle after obstacle...the ups and downs have been extreme. Yet the downs have been overshadowed by the miracle of the ups. Many years ago, when I was having a bad day, my grandmother asked me where I was exactly one year ago to that moment. I couldn't name it. Her point was that these bad times will at some point be insignificant or just a memory. A year ago today Gavin coded in the ICU. I can remember every sound, smell and feeling I had for those terrifying hours as I prayed with every cell in my being that God would spare my child and bring him back to me. Today, one year later, we are in an amazing place. Gavin has changed so many lives in this year and has showed us what a strong, resilient, happy and loving little boy he is. He laughs with his whole body. He babbles with so much energy and the excitement he exudes when he accomplishes something new in physical therapy would touch anyone's soul. Four surgeries, two cath labs, weeks and months in the hospital...and he is the happiest child I have ever known.
Gavin is doing GREAT! He will be going into his fifth surgery in a couple of weeks to reverse his ostomy. Our baby will finally be whole again. About a month after his revision, his intestines came back out, so for the better part of eight months he has lived with his intestines outside of his body. And while it has become a normal part of life for us, it is a much anticipated change to have that wound become a healed scar. So we are making the rounds to prepare him for surgery.
He got a check in the box from cardiology. His last angioplasty seems to be holding this time meaning we don't need any other interventions for his heart in the near future. He has his vaccines up to date and is weighing in at a nice 18 lbs 6 oz. So close to that ideal 20 lb mark that we thought he wouldn't reach until 2 years old. Next week we will meet with an occupational therapist to get a baseline for feeding therapy before his surgery, and Gavin will get a swallow study while in the hospital to give us a more comprehensive picture of his feeding challenges. From a sleep study, we have results that Gavin has severely obstructed sleep apnea. The doctors and anesthesiologists are working together now to see how that will play into his anesthesia and this upcoming surgery and we will most likely see an ENT before we can move forward. Gavin is also due for a hearing screen and then we return to the eye doctor to see if he needs surgery on his eyes. That surgery will have to occur after he has fully recovered from his abdominal surgery. While this sounds like a lot, Gavin really is doing amazing and overcoming obstacles every single day. We take the challenges as they come, but these challenges are about improving Gavin's quality of life and we see so much improvement on a daily basis. I just love this kid!
Gavin is developmentally at the age of a six month old. And you know what? I love it. I am getting to thoroughly enjoy every moment of the baby stage. He is still so cuddly and loveable. He is a complete snuggler. I wouldn't rush through these moments any faster. We are getting time that others say goes by way too fast. Every milestone he hits is after months and months of hard work and he earns every bit of progress he makes. I couldn't be prouder of him.
Gavin has changed our lives in such a profound manner, and through that, many of you have changed our lives as well. The prayers, the meals, the diapers, the help with cleaning the house, the phone calls, the words of encouragement, the donations of your time and talents....they have all made our journey easier and filled it with faith in times when faith was difficult to find. I could never properly communicate the impact so many of you have had on our lives, but you know who you are. Family, friends and strangers who have become both family and friends to us. Please know that you have made an astronomical difference in our lives and there are wings waiting for you in heaven.
We had such an amazing turnout for Gavin's first birthday at the Step Up for Down Syndrome Walk. Thank you so much to everyone who came out to celebrate with us and thank you to everyone that walked with us through life over this past year.
Gavin is doing GREAT! He will be going into his fifth surgery in a couple of weeks to reverse his ostomy. Our baby will finally be whole again. About a month after his revision, his intestines came back out, so for the better part of eight months he has lived with his intestines outside of his body. And while it has become a normal part of life for us, it is a much anticipated change to have that wound become a healed scar. So we are making the rounds to prepare him for surgery.
He got a check in the box from cardiology. His last angioplasty seems to be holding this time meaning we don't need any other interventions for his heart in the near future. He has his vaccines up to date and is weighing in at a nice 18 lbs 6 oz. So close to that ideal 20 lb mark that we thought he wouldn't reach until 2 years old. Next week we will meet with an occupational therapist to get a baseline for feeding therapy before his surgery, and Gavin will get a swallow study while in the hospital to give us a more comprehensive picture of his feeding challenges. From a sleep study, we have results that Gavin has severely obstructed sleep apnea. The doctors and anesthesiologists are working together now to see how that will play into his anesthesia and this upcoming surgery and we will most likely see an ENT before we can move forward. Gavin is also due for a hearing screen and then we return to the eye doctor to see if he needs surgery on his eyes. That surgery will have to occur after he has fully recovered from his abdominal surgery. While this sounds like a lot, Gavin really is doing amazing and overcoming obstacles every single day. We take the challenges as they come, but these challenges are about improving Gavin's quality of life and we see so much improvement on a daily basis. I just love this kid!
Gavin is developmentally at the age of a six month old. And you know what? I love it. I am getting to thoroughly enjoy every moment of the baby stage. He is still so cuddly and loveable. He is a complete snuggler. I wouldn't rush through these moments any faster. We are getting time that others say goes by way too fast. Every milestone he hits is after months and months of hard work and he earns every bit of progress he makes. I couldn't be prouder of him.
Gavin has changed our lives in such a profound manner, and through that, many of you have changed our lives as well. The prayers, the meals, the diapers, the help with cleaning the house, the phone calls, the words of encouragement, the donations of your time and talents....they have all made our journey easier and filled it with faith in times when faith was difficult to find. I could never properly communicate the impact so many of you have had on our lives, but you know who you are. Family, friends and strangers who have become both family and friends to us. Please know that you have made an astronomical difference in our lives and there are wings waiting for you in heaven.
We had such an amazing turnout for Gavin's first birthday at the Step Up for Down Syndrome Walk. Thank you so much to everyone who came out to celebrate with us and thank you to everyone that walked with us through life over this past year.
Thursday, August 1, 2013
Visiting Duke
Well, last week we returned to Duke for a few tests and a second angioplasty. Gavin had another lung profusion scan, a sleep study and an angioplasty to address his left pulmonary artery stenosis. It took a while to get Gavin's IV in for his lung profusion scan, but every nurse that tried, ended up holding him and singing "Twinkle Twinkle Little Star" to him, because that is the song Lorelai sings to him when he cries. It was so endearing to see how patient and loving they were towards him. The lung profusion scan and the heart cath showed that blood flow to Gavin's left lung was reduced by about 50% after the narrowing of his left pulmonary artery. Luckily, after using two different balloons, the angioplasty was successful enough that he didn't have to have a stent. The cardiologist warned us that Gavin may still need a stent at some point, but hopefully this buys us some time to get past the infancy stage before we may need to have that higher level of intervention. There's always the possibility that this fix holds and we're done with cath labs!
We should have the results for Gavin's sleep study next week. He didn't sleep too well through the night, but he did give me plenty of smiles and cuddles. He slept fine as long as I held him, but the machines weren't running the tests like they needed to if he wasn't in the crib. We survived it together and hopefully we'll hear positive news next week.
We should have the results for Gavin's sleep study next week. He didn't sleep too well through the night, but he did give me plenty of smiles and cuddles. He slept fine as long as I held him, but the machines weren't running the tests like they needed to if he wasn't in the crib. We survived it together and hopefully we'll hear positive news next week.
While at Duke, Gavin also received a speech therapy consult because he coughs fairly often when drinking a bottle. The speech therapist noted that Gavin was showing clinical signs of aspiration while feeding and recommended that Gavin begin feeding therapies pending the results of a swallow study. I'm still not sure exactly what that means for us, but it's pushed to the "worry about next week" list for now.
Today, Gavin went to the eye doctor. His pediatrician recommended the ophthalmology consult a couple of months ago. Gavin has a lazy eye and he has diminished vision in that eye. He has to begin wearing a patch over his strong eye for two hours a day, in order to force his weaker eye to work and grow stronger. He was also fitted for glasses which he should get next week to help with some of his vision issues as well. We will try this approach for two months. If there isn't significant improvement, then Gavin will need to have the issue surgically corrected in about three or four months. Sigh. For the record, that would be surgery number six. So we're going to try the patch and glasses for two months and pray that it works for our baby and that he doesn't need surgery. Either way, we'll make it through as a family and make sure that Gavin feels all of the love that surrounds him. Now, to get toy eye patches and glasses for Lorelai, because I know she's going to want some when she sees Gavin's. Kids are so cool like that.
Next week will be Gavin's nine month well baby check so a lot of test results and new plans of care will be developed. Thank you for all of your kind words, encouragement and prayers. Our days are getting easier and our little man is growing and changing every day. His smiles, laughs and coos make everything else so insignificant.
Saturday, July 20, 2013
Nine Months Old and Proud
Gavin turned nine months old yesterday. Every time we hit another month of life, I am again blown away by the miracle that he is. His smile and his laugh make me want to hug him tighter and tell him how much I love him and how incredibly proud I am of him.
So what specifically am I proud of this month? Well, Gavin had his fourth operation a couple of weeks ago. His prolapsed ostomy was revised, meaning his intestines are now back inside of his body (HOORAY!!!! No more nights crying on the stairs!) He also had a hernia that needed to be fixed near his ostomy site and he had his tongue tie clipped to help with eating and speech later on. This was the first surgery that we have taken him to the hospital the day before surgery. The past three surgeries have all taken place as a necessary life intervening operation when he was already lying sick in the hospital. This time, he was healthy and while necessary, this surgery was not based on a life or death situation. PROUD.
When Gavin had his last cath lab visit, the anesthesiologist did not listen to me when I said that Gavin could not come off of the ventilator in the OR. He took Gavin off early and we sat in the Post-Anesthesia Care Unit watching Gavin struggle until he was given two breathing treatments and two doses of morphine, with the anesthesiologist standing by his bed doing nothing besides humbly stating he should have waited. I still believe that had the doctor listened and waited a while longer, that Gavin would not have had that experience. So for this surgery, I was adamant with the anesthesiologist (a different one this time) that Gavin not come off of the ventilator in the OR. I went through Gavin's past struggles coming out of anesthesia, and she looks at me and says "Ok, well my goal is to take him off in the OR." Chris looked at me and his eyes got big as I visually changed from polite and conversational to the mama bear advocate who comes out anytime a doctor who does not know my child tries to tell me what he does or does not need when I have lived with him through months of surgeries, ups and downs and hospital stays. She noticed the change too and quickly said, "I'll wait to take him off." (What's funny is right before she came in, the nurse that checked us in said she's the mom of a special needs child and she told me, "Mom, remember, you are his advocate here. Advocate, advocate, advocate!") If there is one thing I can share with parents just starting out on a journey with a sick child, it would be to advocate for your child. Not every doctor has the right answer and not every doctor knows what is best for your child. There is nothing worse than having a doctor who won't listen to your concerns. But there is also nothing better than a doctor who does listen, who includes you in your child's care plan and who genuinely knows and cares for your child. The latter had been our experience the majority of the time Gavin has been sick. People who are truly called to be nurses, doctors and surgeons are so often the extension of God's hands and I am forever grateful for the great ones that God has placed in our path to watch over and care for Gavin.
Gavin's surgery went beautifully. And we were surprised to see him in the PACU not on a ventilator. The anesthesiologist came out and said she decided to give him some medicine to jump start his heart and breathing so that she could take him off in the OR. Now him giving him that medication was completely unnecessary and she could have just left him on the ventilator for half an hour more, but I chose to hold off on that conversation until I do my patient care survey. At that moment, I just wanted to hold my sweet baby. Gavin was doing great and that medication did get him off the vent without the need for subsequent breathing treatments. He was given two doses of morphine for pain management and we were in a room in about an hour. He had one of his nurses we had during his last operation, so there was a home-like feeling of being somewhere familiar. We were expecting to stay in the hospital for 48-72 hours, but after 24, the surgeon thought he looked great, Gavin was only taking Tylenol for pain and he was eating like a champ. And we LOVE our surgeon and have so much faith in him, so we were at home and happy one night after surgery. Talk about being a pro! Gavin was in a great mood nonstop after surgery and ostomy life is back to being almost easy! PROUD.
We went to see the surgeon yesterday for a post-op check up and he said Gavin is looking great...and that he has a healthy glow to him! We don't have to go back until Gavin is 20lbs and ready for operation number five to close the ostomy completely. He weighed in yesterday at 15 lbs 4 oz. Still tiny for his age but steadily gaining! PROUD.
Gavin also rolled over this month. After a few months of physical therapy, that is the BIGGEST milestone to date. I actually squealed and clapped my hands when he did it. I had a huge smile on my face for the rest of that day and I still get that smile any time I think of that moment or see him roll again. He has great head control, he's getting stronger with his assisted sitting and next month we'll be ready to try some solid foods. PROUD.
Next week, Gavin has another big week of tests and procedures. We will be going to Duke for a lung profusion study to get a better idea on blood flow from his heart to his lungs through his left and right pulmonary arteries. This will help determine if he needs an angioplasty or stent in his heart. After his lung profusion study, he'll spend the night at Duke for a sleep study because the cardiologist was concerned about how loud Gavin breathes. The next morning, he'll wake up and go into the cath lab for that angioplasty or stent. He'll spend at least one night in the hospital after that, and have a swallow study done before he's discharged.
As I've said before, there are risks with the stent placement. Where it would need to be placed is covered in veins and arteries that are typically not there, but have grown in response to his open heart surgery. This causes an increased risk of nicking any of those veins or arteries. Also, that stent will have to continually be expanded as he grows which translates to multiple cath lab visits and can only be removed through open heart surgery. We are praying that the lung profusion study shows no need for a cath procedure at all, but if something must be done, that it is only an angioplasty. (It's crazy to say ONLY an angioplasty in regards to your child, but it all that he's been through, it really is ONLY an angioplasty!) Regardless of what procedure he must go through, I KNOW that he will do great, because he is strong and healthy and has a team taking every precaution to do what is best for him. We are excited to return to Duke and visit the Peds Cardiac ICU to thank all of the doctors, nurses and respiratory therapists who helped save Gavin's life and show them just how wonderfully he is doing! Look how far he's come since then....PROUD!
So what specifically am I proud of this month? Well, Gavin had his fourth operation a couple of weeks ago. His prolapsed ostomy was revised, meaning his intestines are now back inside of his body (HOORAY!!!! No more nights crying on the stairs!) He also had a hernia that needed to be fixed near his ostomy site and he had his tongue tie clipped to help with eating and speech later on. This was the first surgery that we have taken him to the hospital the day before surgery. The past three surgeries have all taken place as a necessary life intervening operation when he was already lying sick in the hospital. This time, he was healthy and while necessary, this surgery was not based on a life or death situation. PROUD.
When Gavin had his last cath lab visit, the anesthesiologist did not listen to me when I said that Gavin could not come off of the ventilator in the OR. He took Gavin off early and we sat in the Post-Anesthesia Care Unit watching Gavin struggle until he was given two breathing treatments and two doses of morphine, with the anesthesiologist standing by his bed doing nothing besides humbly stating he should have waited. I still believe that had the doctor listened and waited a while longer, that Gavin would not have had that experience. So for this surgery, I was adamant with the anesthesiologist (a different one this time) that Gavin not come off of the ventilator in the OR. I went through Gavin's past struggles coming out of anesthesia, and she looks at me and says "Ok, well my goal is to take him off in the OR." Chris looked at me and his eyes got big as I visually changed from polite and conversational to the mama bear advocate who comes out anytime a doctor who does not know my child tries to tell me what he does or does not need when I have lived with him through months of surgeries, ups and downs and hospital stays. She noticed the change too and quickly said, "I'll wait to take him off." (What's funny is right before she came in, the nurse that checked us in said she's the mom of a special needs child and she told me, "Mom, remember, you are his advocate here. Advocate, advocate, advocate!") If there is one thing I can share with parents just starting out on a journey with a sick child, it would be to advocate for your child. Not every doctor has the right answer and not every doctor knows what is best for your child. There is nothing worse than having a doctor who won't listen to your concerns. But there is also nothing better than a doctor who does listen, who includes you in your child's care plan and who genuinely knows and cares for your child. The latter had been our experience the majority of the time Gavin has been sick. People who are truly called to be nurses, doctors and surgeons are so often the extension of God's hands and I am forever grateful for the great ones that God has placed in our path to watch over and care for Gavin.
Gavin's surgery went beautifully. And we were surprised to see him in the PACU not on a ventilator. The anesthesiologist came out and said she decided to give him some medicine to jump start his heart and breathing so that she could take him off in the OR. Now him giving him that medication was completely unnecessary and she could have just left him on the ventilator for half an hour more, but I chose to hold off on that conversation until I do my patient care survey. At that moment, I just wanted to hold my sweet baby. Gavin was doing great and that medication did get him off the vent without the need for subsequent breathing treatments. He was given two doses of morphine for pain management and we were in a room in about an hour. He had one of his nurses we had during his last operation, so there was a home-like feeling of being somewhere familiar. We were expecting to stay in the hospital for 48-72 hours, but after 24, the surgeon thought he looked great, Gavin was only taking Tylenol for pain and he was eating like a champ. And we LOVE our surgeon and have so much faith in him, so we were at home and happy one night after surgery. Talk about being a pro! Gavin was in a great mood nonstop after surgery and ostomy life is back to being almost easy! PROUD.
We went to see the surgeon yesterday for a post-op check up and he said Gavin is looking great...and that he has a healthy glow to him! We don't have to go back until Gavin is 20lbs and ready for operation number five to close the ostomy completely. He weighed in yesterday at 15 lbs 4 oz. Still tiny for his age but steadily gaining! PROUD.
Gavin also rolled over this month. After a few months of physical therapy, that is the BIGGEST milestone to date. I actually squealed and clapped my hands when he did it. I had a huge smile on my face for the rest of that day and I still get that smile any time I think of that moment or see him roll again. He has great head control, he's getting stronger with his assisted sitting and next month we'll be ready to try some solid foods. PROUD.
Next week, Gavin has another big week of tests and procedures. We will be going to Duke for a lung profusion study to get a better idea on blood flow from his heart to his lungs through his left and right pulmonary arteries. This will help determine if he needs an angioplasty or stent in his heart. After his lung profusion study, he'll spend the night at Duke for a sleep study because the cardiologist was concerned about how loud Gavin breathes. The next morning, he'll wake up and go into the cath lab for that angioplasty or stent. He'll spend at least one night in the hospital after that, and have a swallow study done before he's discharged.
As I've said before, there are risks with the stent placement. Where it would need to be placed is covered in veins and arteries that are typically not there, but have grown in response to his open heart surgery. This causes an increased risk of nicking any of those veins or arteries. Also, that stent will have to continually be expanded as he grows which translates to multiple cath lab visits and can only be removed through open heart surgery. We are praying that the lung profusion study shows no need for a cath procedure at all, but if something must be done, that it is only an angioplasty. (It's crazy to say ONLY an angioplasty in regards to your child, but it all that he's been through, it really is ONLY an angioplasty!) Regardless of what procedure he must go through, I KNOW that he will do great, because he is strong and healthy and has a team taking every precaution to do what is best for him. We are excited to return to Duke and visit the Peds Cardiac ICU to thank all of the doctors, nurses and respiratory therapists who helped save Gavin's life and show them just how wonderfully he is doing! Look how far he's come since then....PROUD!
Thursday, June 20, 2013
8 Months Strong
Gavin turned 8 months old yesterday. It's amazing how strong and healthy he looks now! He is now 14lbs and we have been working with a physical therapist to help him gain strength and meet new milestones. He is rolling side to side, but hasn't gone front to back or vice versa yet. His head control is getting stronger and he is progressing quickly with his assisted sitting. We're hoping to start introducing some solids next month.
I've been asked by a few people if it bothers me that Gavin isn't doing things that a "typical" 8 month old would be doing. It honestly doesn't. He has been through three life intervening operations and had an angioplasty. He has two more operations and another angioplasty with a possible stent placement. I could care less WHEN he rolls over, sits on his own, crawls, walks, talks or runs. I am confident that he will do it all. But we have been given a miracle in the very life of Gavin and the kid has been through some tough battles. I am not in a rush to get to the "next" step...I love every minute of where he is now and the fact that he IS here now. He smiles and laughs and coos and brings so much joy to us. I'm not focused on milestones...I'm just loving the journey :)
Next week, Gavin will go into surgery for an ostomy revision. The surgeon will essentially re-work Gavin's ostomy so that all of his intestines will stay inside of his body and make ostomy life a little easier for us. Gavin's prolapse is so significant that there is a real risk of infection or some type of outside damage to the intestines. He will still have the ostomy with the goal of 20lbs before he can be closed up for good. But his intestines will finally be back on the inside, his hernia will be fixed and the surgeon is also going to clip Gavin's tongue tie. If all goes well, we should spend 2-3 days in the hospital. While I'm nervous, there is a little dance going on for no more pushing intestines in!
On the same day Gavin has surgery, our Rottie will be having orthopedic surgery. Last year, this might of overwhelmed me. This year, I'm using my support system to make sure everyone is taken care of and where they need to be. That translates to: I love my parents!
I'm nervous and scared, as usual, with Gavin going into surgery. But Chris is here and this surgery is about making Gavin better, not saving his life. He is strong and healthy. Stronger and healthier than he has ever been going into the OR. The surgeon today went through the risks associated with surgery and commented that he feels silly telling us since we're pros now, but he had to do the obligatory speech. I don't have as many questions as I used to because I have learned so much in the past year. I feel extremely comfortable with the surgeon and my baby boy is amazingly resilient.
In about a month, Gavin will go to the cath lab at Duke. Before that, we will do a swallow study, a sleep study and a lung profusion study. The first two are somewhat normal in the overall care of kids with DS. Gavin chokes pretty often on his milk, which is most likely a lazy trachea, but the swallow study will let us know if it is something more serious. The sleep study will check for any signs of sleep apnea, but at this point, the test is more an aggressive approach to Gavin's care than any real concern. The lung profusion study will again look at the blood flow from Gavin's heart to both of his lungs. This will determine what will happen in the cath lab.
The cardiologist at Duke is hesitant to put a stent in Gavin. At this age, the rate of growth is so rapid, that Gavin would have to go back to the cath lab several times to adjust the size of the stent as he gets bigger. The hope is that the profusion study shows things are fine, or that an angioplasty may fix the problem. Putting hardware into Gavin's heart will be a last resort. I love how cautious and comprehensive the care is at Duke. They are truly amazing.
At this time, those are our big summer plans. We always stay flexible for the unexpected, but it feels like we are in a good place and staying in that good place for a while. I think to where I was a year ago when I first found out that Gavin had DS, and where I am today. Talk about a blessing in disguise. This little boy is so perfect and exactly as he should be. Who knew that so much fear and doubt could become so much hope, confidence and love?
I've been asked by a few people if it bothers me that Gavin isn't doing things that a "typical" 8 month old would be doing. It honestly doesn't. He has been through three life intervening operations and had an angioplasty. He has two more operations and another angioplasty with a possible stent placement. I could care less WHEN he rolls over, sits on his own, crawls, walks, talks or runs. I am confident that he will do it all. But we have been given a miracle in the very life of Gavin and the kid has been through some tough battles. I am not in a rush to get to the "next" step...I love every minute of where he is now and the fact that he IS here now. He smiles and laughs and coos and brings so much joy to us. I'm not focused on milestones...I'm just loving the journey :)
Next week, Gavin will go into surgery for an ostomy revision. The surgeon will essentially re-work Gavin's ostomy so that all of his intestines will stay inside of his body and make ostomy life a little easier for us. Gavin's prolapse is so significant that there is a real risk of infection or some type of outside damage to the intestines. He will still have the ostomy with the goal of 20lbs before he can be closed up for good. But his intestines will finally be back on the inside, his hernia will be fixed and the surgeon is also going to clip Gavin's tongue tie. If all goes well, we should spend 2-3 days in the hospital. While I'm nervous, there is a little dance going on for no more pushing intestines in!
On the same day Gavin has surgery, our Rottie will be having orthopedic surgery. Last year, this might of overwhelmed me. This year, I'm using my support system to make sure everyone is taken care of and where they need to be. That translates to: I love my parents!
I'm nervous and scared, as usual, with Gavin going into surgery. But Chris is here and this surgery is about making Gavin better, not saving his life. He is strong and healthy. Stronger and healthier than he has ever been going into the OR. The surgeon today went through the risks associated with surgery and commented that he feels silly telling us since we're pros now, but he had to do the obligatory speech. I don't have as many questions as I used to because I have learned so much in the past year. I feel extremely comfortable with the surgeon and my baby boy is amazingly resilient.
In about a month, Gavin will go to the cath lab at Duke. Before that, we will do a swallow study, a sleep study and a lung profusion study. The first two are somewhat normal in the overall care of kids with DS. Gavin chokes pretty often on his milk, which is most likely a lazy trachea, but the swallow study will let us know if it is something more serious. The sleep study will check for any signs of sleep apnea, but at this point, the test is more an aggressive approach to Gavin's care than any real concern. The lung profusion study will again look at the blood flow from Gavin's heart to both of his lungs. This will determine what will happen in the cath lab.
The cardiologist at Duke is hesitant to put a stent in Gavin. At this age, the rate of growth is so rapid, that Gavin would have to go back to the cath lab several times to adjust the size of the stent as he gets bigger. The hope is that the profusion study shows things are fine, or that an angioplasty may fix the problem. Putting hardware into Gavin's heart will be a last resort. I love how cautious and comprehensive the care is at Duke. They are truly amazing.
At this time, those are our big summer plans. We always stay flexible for the unexpected, but it feels like we are in a good place and staying in that good place for a while. I think to where I was a year ago when I first found out that Gavin had DS, and where I am today. Talk about a blessing in disguise. This little boy is so perfect and exactly as he should be. Who knew that so much fear and doubt could become so much hope, confidence and love?
Tuesday, May 21, 2013
Welcome Home Daddy!
For those of you who don't know, Chris finally made it back home! We were at the airport at 4am the day he arrived and Lorelai was very excited. She started crying when I woke her up, but once I told her we were going to get Daddy she instantly perked up and reminded me multiple times not to forget her "Welcome Home Daddy" sign. She started getting tired while we were waiting, and had just started crying when Chris walked up behind her. When she turned around and saw him she just held up her arms for him to pick her up, gave him her sign and hugged him tight. There was such relief knowing he was finally home. Gavin, on the other hand, slept through the whole thing.
The first time Chris helped me changed Gavin's ostomy bag after getting home, he was pretty shocked at how much intestines live outside of Gavin's body now. But he's back in the swing of things now and has even done two bag changes on his own.
As I was catching Chris up on things, I told him how people have been bringing us meals several times a week. He couldn't believe how many people who have never met us before have just stepped up to help our family when we really needed it. I filled him in on folks who have come to help with Gavin and Lorelai during the week or for bag changes, and made him sit down while I showed him the life altering gift given to us by Veterans United Home Loans here in Virginia Beach. We were given a year's supply of diapers, maid service, a date night on the Spirit of Norfolk, some toys for Lorelai and a full day at the spa for me! To just have someone walk into our home and change our lives like that left me shocked and speechless. Even now I don't know what to say. The generosity and kindness of people continues to inspire me and give me strength. I cannot wait to pay this forward. Everyone should get to experience that moment at some point in their lives and I would love to be a part of that moment for someone else. It is indescribably beautiful.
As soon as Chris started getting used to the ostomy bag, he was able to experience a trip to the ER with both kids. I think he was somewhat stressed out with having Lorelai and Gavin there, the crying, the questions, the doctors, the tests...I thought it was the easiest trip I've had there so far, because he was with me. But, of course, it's always stressful.
Gavin had just had a great checkup with his pediatrician. He was looking better than ever, he was closing in on 13 lbs, had a successful first physical therapy appointment and we were relaxing about finally getting a break. And that night things started to change some. Gavin started coughing, he was breathing harder and faster, he was throwing up every feed before eventually refusing to eat, and his intestines became extremely swollen. I called the surgeon on call and he recommended bringing Gavin into the ER.
Once we arrived, Gavin was tested for RSV, sepsis, and had xrays of his chest and abdomen. His heart looked enlarged and he had signs of a respiratory infection, but his abdomen seemed to be ok and there were no signs of sepsis or intestinal infection. There didn't seem to be any answer as to why his intestines were swelling. While in the hospital, Gavin's oxygen levels dropped to 72 which required him to go on oxygen through the night. It was scary, but such a different, more calming world having Chris with me when all of this happened. We never had an answer or treatment options from the hospital, so we left with Gavin the next day once his oxygen levels stabilized.
We heard from our cardiologist the following day. He felt that this ER visit and these symptoms were related to Gavin's heart, and just increases the urgency with which we need to get Gavin into the cath lab for a stent in his left pulmonary artery. Due to the severity of the stenosis there, his blood is shunting and mixing which is causing a buildup of pressure, oxygen and blood in his chest which is finding an outlet through his intestines. In addition, Gavin now has an abdominal hernia which is putting additional pressure on his intestines. The general surgeon wants to take Gavin into another surgery for an ostomy revision. Basically, he would put Gavin's intestines back in his body, fix his hernia and then make the ostomy opening smaller so that his intestines will stay put in his body. This would be an additional surgery that was unexpected, but would help us get to the 20lb goal mark Gavin needs to be at before going to have his ostomy closed. But, general surgery can't do anything until Gavin's heart is fixed.
So next week we will go to Duke for our cath lab consult, be in the cath lab a week or two later, and then once recovered, meet with surgery to find out when Gavin will go back into the OR. If his stent placement goes according to plan and provides the relief needed, Gavin should go into surgery sometime around the end of June or beginning of July. Then, between 12-18 months of age, he will go back into surgery to have his ostomy closed. It's crazy to think we're coming up on our second cath lab procedure and fourth operation with Gavin being seven months old. But he is a fighter, and certainly bigger and stronger than he has been prior to any other operations.
I am just so thankful that with these new complications, Chris is here with us. It certainly is an answer to many, many prayers. Our family has truly been blessed by Gavin, this journey we're on and the support and love we've received from so many of you. Life if scary, uncertain and fragile at times. But it is also precious, healing and resilient. We have to hang on to our faith and keep hope during the dark times. And we can do that because we've lived through miracles, we know our guardian angels are watching over us and we've seen the beauty hidden in the dark times. We've seen those who have joined our journey and helped us when we fell down. We've seen Gavin grow and heal and smile and laugh. He is such a powerful little boy who has profoundly changed our lives for the better.
The first time Chris helped me changed Gavin's ostomy bag after getting home, he was pretty shocked at how much intestines live outside of Gavin's body now. But he's back in the swing of things now and has even done two bag changes on his own.
As I was catching Chris up on things, I told him how people have been bringing us meals several times a week. He couldn't believe how many people who have never met us before have just stepped up to help our family when we really needed it. I filled him in on folks who have come to help with Gavin and Lorelai during the week or for bag changes, and made him sit down while I showed him the life altering gift given to us by Veterans United Home Loans here in Virginia Beach. We were given a year's supply of diapers, maid service, a date night on the Spirit of Norfolk, some toys for Lorelai and a full day at the spa for me! To just have someone walk into our home and change our lives like that left me shocked and speechless. Even now I don't know what to say. The generosity and kindness of people continues to inspire me and give me strength. I cannot wait to pay this forward. Everyone should get to experience that moment at some point in their lives and I would love to be a part of that moment for someone else. It is indescribably beautiful.
As soon as Chris started getting used to the ostomy bag, he was able to experience a trip to the ER with both kids. I think he was somewhat stressed out with having Lorelai and Gavin there, the crying, the questions, the doctors, the tests...I thought it was the easiest trip I've had there so far, because he was with me. But, of course, it's always stressful.
Gavin had just had a great checkup with his pediatrician. He was looking better than ever, he was closing in on 13 lbs, had a successful first physical therapy appointment and we were relaxing about finally getting a break. And that night things started to change some. Gavin started coughing, he was breathing harder and faster, he was throwing up every feed before eventually refusing to eat, and his intestines became extremely swollen. I called the surgeon on call and he recommended bringing Gavin into the ER.
Once we arrived, Gavin was tested for RSV, sepsis, and had xrays of his chest and abdomen. His heart looked enlarged and he had signs of a respiratory infection, but his abdomen seemed to be ok and there were no signs of sepsis or intestinal infection. There didn't seem to be any answer as to why his intestines were swelling. While in the hospital, Gavin's oxygen levels dropped to 72 which required him to go on oxygen through the night. It was scary, but such a different, more calming world having Chris with me when all of this happened. We never had an answer or treatment options from the hospital, so we left with Gavin the next day once his oxygen levels stabilized.
We heard from our cardiologist the following day. He felt that this ER visit and these symptoms were related to Gavin's heart, and just increases the urgency with which we need to get Gavin into the cath lab for a stent in his left pulmonary artery. Due to the severity of the stenosis there, his blood is shunting and mixing which is causing a buildup of pressure, oxygen and blood in his chest which is finding an outlet through his intestines. In addition, Gavin now has an abdominal hernia which is putting additional pressure on his intestines. The general surgeon wants to take Gavin into another surgery for an ostomy revision. Basically, he would put Gavin's intestines back in his body, fix his hernia and then make the ostomy opening smaller so that his intestines will stay put in his body. This would be an additional surgery that was unexpected, but would help us get to the 20lb goal mark Gavin needs to be at before going to have his ostomy closed. But, general surgery can't do anything until Gavin's heart is fixed.
So next week we will go to Duke for our cath lab consult, be in the cath lab a week or two later, and then once recovered, meet with surgery to find out when Gavin will go back into the OR. If his stent placement goes according to plan and provides the relief needed, Gavin should go into surgery sometime around the end of June or beginning of July. Then, between 12-18 months of age, he will go back into surgery to have his ostomy closed. It's crazy to think we're coming up on our second cath lab procedure and fourth operation with Gavin being seven months old. But he is a fighter, and certainly bigger and stronger than he has been prior to any other operations.
I am just so thankful that with these new complications, Chris is here with us. It certainly is an answer to many, many prayers. Our family has truly been blessed by Gavin, this journey we're on and the support and love we've received from so many of you. Life if scary, uncertain and fragile at times. But it is also precious, healing and resilient. We have to hang on to our faith and keep hope during the dark times. And we can do that because we've lived through miracles, we know our guardian angels are watching over us and we've seen the beauty hidden in the dark times. We've seen those who have joined our journey and helped us when we fell down. We've seen Gavin grow and heal and smile and laugh. He is such a powerful little boy who has profoundly changed our lives for the better.
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