He had a PE tube placed in his left ear, a maxillary (upper-lip) frenectomy and a sub-lingual (below tongue) frenectomy. We arrived at North Oaks at 6am and shortly thereafter, we were taken to B's room. The nurse went over his medical history, gave us a gown for him and administered a dose of Versed to B. Oh my... I can't even begin to put into words what the Versed did to him. I felt slightly bad for laughing at my 19 month old but he was l.o.o.p.y. to say the least. He barely had head control and he was smiling and laughing and just plain goofy. The RN brought Daddy and I into surgery holding with B. We met with anesthesia and Dr. Peltier (such an AMAZING ENT). And then it was time... time to hand my baby over... so difficult. He went into the arms of his surgery nurse screaming and crying and I walked away with Daddy’s arm around my shoulders, him telling me that it would be okay while massive tears were welling up in my eyes. That walk back to the waiting room was tough for me. Daddy left for work and I was left there with my mom and MIL. At 8:02am, we were brought to the conference room because his surgery was over and he was on his way to recovery! Dr. Peltier came and spoke to us - he said that he only had to place a tube in his left ear and he performed both frenectomies. He placed 1 suture below his tongue and 3 on the inside of his upper lip. He said that I should expect for B to be cranky/fussy for a few days because of the oral surgery. Then he brought me into the recovery room and B was still asleep - they were working on arousing him. And they succeeded. And he was less than thrilled. He kicked, hit screamed, flailed, threw his body backwards... full on tantrum... all with his eyes closed... for a good 15 minutes. This reaction is quite normal for small children after anesthesia. And this continued the entire time we were at the hospital. My mom and MIL were insistent that he was in pain even though I kept reassuring him that he was not. Dr. Peltier administered a local anesthetic at both frenectomy sites; he said that he would be numb for a couple of hours. They had also given his a dose of Tylenol with Codeine in recovery. Our nurse discharged us and once we were home, the nugget was pretty happy. The crying stopped. He ate a small meal, took a nap and was a little cranky on/off for the rest of the day. And B was back to normal the next morning!
We've already noticed a few changes since his operation. When he points to his/my/P/daddy's eyes, he says "eyyyy" and he has said "nooo" once when he pointed to his nose! And the biggest change is that B is FINALLY sleeping through the night! B has never slept for longer than a 6-7 hour period. On an average night, he was waking 2-4 times. But big man sleeps all.night.long. - we now believe that his ear has been bothering him all along. Oh this was such a blessing in disguise!
Yesterday, P underwent general anesthesia for his first time... at 4 months old... for a brain MRI.
We arrived at OLOL at 7am (and thankfully P only lost it for about 30 minutes from being NPO after 3am). We were wheeled down on his bed shortly after 9am. I met L who was absolutely amazing. I had one last consent to sign (for contrast) and I handed my sweet baby over... again... really difficult... had to fight back tears... but I knew that he was in good hands with L. She came out a few different times (1) she said he was asleep and they were going to start his IV; (2) his IV was started - top of the hand - got it on the 1st stick - he has really good veins; (3) he was intubated - got it on the first pass; and (4) they had started the imaging. Another RN came out and said that things were going well and we could go grab a bite to eat and she would call us when he was headed to recovery (I gave my cell and my mom's cell numbers). We had breakfast and decided to walk around the gift shop. While in the shop I decided to look at my phone for the time... they had called me... twice... and I missed both calls. We went straight to the surgery waiting room and told the receptionist what happened. She called recovery and he wasn't there yet. Mom and I waited in the hall because the waiting room was pretty packed and I am too much of a germ-o-phobe to sit immediately next to a stranger if it's unnecessary. Out of nowhere I heard a very familiar I.am.really.angry sort of cry and sure enough, I saw P, 2 RNs, and his bed whisk past us in another hallway. A few minutes later I was called to go into recovery.
L was back there and she said that everything went well. I thanked her again for being with him. They gave him 2 ounces of sugar water because the poor guy was starving! They said to go ahead and get his bottle ready because he was still screaming. And then my sweet baby was placed in my arms. I started feeding him and one of the RNs did a "blow-by" because his O2 sats were in the low 80s. After a few minutes, she had him into the mid-90s. He ate 25cc and lovingly gazed into my eyes. P busted out of recovery really quickly! He was oh.so.different from B in regards to his post-anesthesia mood. P was happy and smiling and giggling. Because he was responding so well, we were discharged at 12:15pm.
On the way home, I called the pedi's office to see if I could get him in for his 4 month well-visit. I went home, picked up B and we were off again. P’s stats were: 13lbs10oz, 24" long and 17.5" head circumference. Dr. Leumas came in and I asked if it was okay for him to get his vax because on the MRI with contrast under anesthesia. He said yes because everything should have left his system by then. He asked what P had an MRI of and why. I said "of his brain" and "because Dr. Alberty took several measurements of P's head - all came back larger than normal and his suture lines were wider than expected and his soft soft as well." Dr. Leumas said it was a good call on Dr. Alberty's part because P's head circumference was concerning. At 3 months old, Pierce was barely below 50% and now at 4 months he is 90%. Dr. Leumas also stated that we have to be very aware of P's developmental milestones because when you see many sub-systems (his GI tract, spine, possibly his brain) being affected, you have to look at the big picture and ask "why" and "could something be causing all of these issues." We spoke a little more in depth about P's scoliosis. Dr. Leumas advised me on a few different points in regards to questions I need to ask from here out. He was a little concerned about how much radiation P has received... inside of two months, P has had:
- one - 3 film chest x-ray
- one - 2 film chest x-ray
- one - Upper GI series
- two - pharyngograms (VFSS)
- two - single film chest x-rays for Ng tube placement
At the earliest, we will have MRI results later today and at the latest, Thursday. I would be lying if I said I wasn't concerned. I initially was more concerned about him undergoing anesthesia than what the actual MRI could potentially show. But after our pedi appointment yesterday, I am a little concerned. I will update once I hear from our GI doctor.
I don't know what to think. I don't know what could be the bigger cause for all of these sub-system issues. I don't dare Dr. Google it because I know I could be overwhelmed with every potential issue out there. And in all honesty, I wouldn't even know where to begin.
I feel like I am continually trying to remind myself to put one foot in front of the other. To breathe. To stay strong. I have to.
But it's hard. I despise not knowing answers. I am afraid of the unknown.
I have moments where I feel like I am cracking under all of this pressure. I have moments where I would love to do nothing more than to kick and scream and cry until all my tears are gone.
I have been deep in prayer. I pray for my boys continually. I pray for strength and wisdom in advocating. I pray for patience in dealing with others. I pray.
Thanks for keeping us in your prayers. We need it. I need it.
ps. Please keep Kip & Angie in your prayers. On Sunday, Hogan went to heaven at two weeks old. He fought a very courageous battle with Trisomy 18.
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