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!