Today is the day James Douglas is getting his G-Tube along with a host of other services. The goal is to expose him to as little anesthesia as possible making JD’s plate very full today.
|Before surgery - he knows something is up|
As someone who has been honored with the award of Most Organized I am fascinated by the team’s scheduling of today’s events:
Step 1 – Dr. C will perform the G-tube surgery – this man makes we want to ask for a hug. When JD was just 1 month old, Dr. C was the doctor who out of everyone else recommended we hold off on the G-tube until he got a little bigger. It seemed, from Day One, he had JD’s health and safety and our comfort in mind. Fast forward to today when he came in about 4 hours prior to our OR time to discuss the G-tube surgery again. Even though he had already discussed everything with Nate he took the time to give me the detailed information. Plus, he made sure if for any reason we were uncomfortable with this surgery we could take a step back. Not many surgeons are willing to let you back out just a few hours prior to surgery because their time is very precious. Yet, Dr. C made sure we had no questions before moving forward with the procedure.
Step 2 – The team will call ENT to come in accomplish two goals:
1) Check his ears, clean his ears, and look for fluid. If there is fluid they will insert tubes to help with his ABR hearing test.
2) Place a flexible scope down his throat to look for any obstruction, called a Flexible Bronchoscopy. This will be an altered version the ENT Test 2 they originally wanted to perform but was not cleared by neurosurgery. ENT knows they are not allowed to move the neck, which is why this test has the word “flexible” in the title. From what we can tell, this test will not give us all the information the doctors were looking for but it can give us a better feel for what could be causing the obstruction.
Step 3 – Audiology will be called in to perform an ABR hearing test seeing as he failed his two newborn/infant screenings.
Step 4 – Ophthalmology will join the party to perform an eye test to look at the anatomy and structure of the eye. This test can give us our first clues as to what JD may be at risk for in the future.
Step 5 – Anesthesia will monitor his vitals and breathing the entire time as well as slowly bring him out of anesthesia. JD will be intubated during the procedure so he will need to be extubated once he is prepared to breath on his own.
Step 6 – Bring him back to his room to settle in for the night and recover.
OR had him scheduled for 3pm but called him down early. We were able to stay in the pre-op room with James until they took him for anesthesia. This allowed us to meet all of the doctors and once again Dr. C gave us the opportunity to ask more questions. When they built this hospital the designers truly had kids in mind. The hallways are bright and welcoming with warm colors and beautiful pictures. The MRI rooms and machines are underwater adventures carefully painted to give the feeling of beginning a voyage. And the OR floor has what I call “flight boards” – 50” flat screen TVs throughout the halls listing arrivals, in-flights, and departures throughout the OR. I tried reading some of the procedures and only understand one. Guess I still need a bit more medical training.
Anesthesiologists tend to have big egos (Nate hates when I say stuff like that) but we loved Sam (not even sure that was his name but he looked like a Sam). Ultimately, you want to be comfortable with everyone in your child’s operating room. However, if you are only comfortable with two people in the OR it should be the surgeon and the anesthesiologist. Check and Check.
|Not this again|
|You would be pretty mad too if you were in this tiny isolette|
HUGE storm just rolled through the city with sheets of rain for about 15 minutes. Every doctor that walked by our room came in to look out the window to say “Whoa, that is an intense storm. I guess we need it but I hope I don’t have to walk to my car in the rain.” Well, since we are all here now let’s stay dry by moving into an OR and getting this party started.
Still in the OR pre-op room waiting for “Jeff to verify.” Two things with that:
1 - Who is Jeff? Dr. Jeff? He does not sound very official.
2 - What does “verify” mean? They never have to “verify” anything on Grey’s Anatomy.
Jeff verbally verifies via phone (still have no idea who Jeff is and what he is verifying) making Dr. C (and team) ready to go. Last few kisses and love to send JD off. With Dr. C and Sam leading the charge we feel confident in JD’s team.
About 15 minutes after settling in to JD’s room I received a call from Dr. C letting us know audiology was unable to do the ABR test today. At the same time Dr. M (the Attending) came into the room to tell us the same thing. Dr. M had given the okay to proceed with the G-tube without the ABR test but Dr. C (once again caring about our concerns) told me he wanted us to give the final OK. He said he would not proceed unless we are okay knowing JD will need an additional test at a separate time.
Thank you Dr. C! Yes, please proceed.
Two hours later Dr. C called to say they were done with the G-tube which took a bit longer because he needed a new IV (his IV “went bad” right when they started transporting him down to the OR). In my excitement to hear Dr. C say the procedure was complete I did not ask how the surgery went but my guess, if he said nothing then all went well.
Step 2 – In Progress
Step 3 – Postponed
Step 5 – In Progress
Step 6 – Waiting
JD is back in his room looking good but sleepy. To keep him warm they have a Giraffe Warmer for him as a precaution. He will stay in the warmer until we can put clothes back on him. Our big JD looks enormous in the warmer compared to how he looked when he was just a few days old.
|6 Days Old|
|3 Months old|
The stream of doctors came in to tell us about the procedures:
Step 1 – G-tube surgery went well with no complications. Currently they are draining any air or fluid from his G-tube so they can start giving him Pedialyte through the tube tomorrow. Hopefully by Friday night they can start his milk and by Saturday he will be up to full feeds.
Step 2 – ENT cleaned out his ears and did not find any fluid. No fluids means no tubes. I have said it before and I will say it again JD runs the show around here. The docs think one thing but JD has his own agenda. Plus, the flexible bronchoscopy showed he has no anatomy abnormalities and his vocal folds look good. We think this is good news but we are not quite sure what Dr. M will say.
Step 3 – No test = no updates. ENT spoke to audiology to let them know they can proceed with the ABR hearing test. Actually, the ABR can be done bedside with no anesthesia as long as it is a quite environment.
Step 4 – Ophthalmology completed their test and in true fashion we have not heard anything from them yet. Ugh!
Step 5 -- Sam told us JD was great with no problems being intubated or extubated. Adding to our love of Sam he placed a truck sticker on JD’s G-tube which made it look super cute and less scary. Yay Sam.
Step 6 – Chillin’ in his giraffe. They have a nasal cannula in to help with his oxygen as he comes out of anesthesia but he should have it off by tomorrow. It is obvious he is in some pain as he cries out with a pained look on his face but overall he is comfy. Watching him slightly uncomfortable makes me even more grateful we avoided Spina Bifida surgery. Counting our blessings today.
Tonight, I will be staying at the hospital with James. I was denied this opportunity on the day he was born making this my chance. So tonight I will snuggle with my boy (as much as I can next to the Giraffe) as we watch the last few episodes of Downton Abbey Season 2. Oh how I wonder if Matthew will go through with the wedding and what will happen to Mr. Bates?
Thank you for the prayers. Keep them coming. Good night.