He is what I deem to be you're typical 2 1/2 year old. He is loud and obnoxious and has an attitude on him that makes my death glares peel paint. Yet on the flip side he knows when to turn on the charm and being a polite little stinker. That's what my family refers to him as. A polite stinker, actually a little more vulgar and more of a polite little shit. But you catch the drift.
Jakey is the light of my life. He's been my rock when I have had nothing. He's gotten me through deployments, he's gotten me through heartaches and given me his fair share as well. Jacob's medical issues and quirks have tried me and made me who I am as a mom to this day. I've learned and lived that you are the only voice you're child has. If you want the best then by God you have to push for the best.
Jacob Lee Strohmeyer was born May 20, 2009 weighing in at a whopping 5 lbs 6 ozs. He was so tiny. my favorite picture is my cousin Jo holding him in his arm and just how tiny he looks. Jo looked like he was cradling a football.
When Jacob was about 5 months old instead of gaining weight he started losing it at a rapid rate. We were in Italy (where his dad was stationed at that time) and weren't getting answers. So when "the father" deployed and I was back stateside with my family I started the process of specialists. It hasn't ended.
Jacob was born with a condition called obstructive esophageal dysphagia and severe acid reflux. As defined by http://www.aba15.com/what-is-dysphagia/: Esophageal dysphagia has a functional and mechanical cause. Examples of functional causes include myasthenia gravis and bulbar palsy and mechanical causes include carcinoma of the esophagus, peptic esophagitis and esophageal compression. Disease in tissues adjacent or in the esophagus always cause esophageal dysphagia resulting in the lumen of the esophagus narrowing.
The obstructive aspect was deemed to be his tonsils and adenoids being enlarged to almost 3x the normal size. November of 2011 I had his tonsils and adenoids taken out along with tubes put in his ears they were also doing an exploratory exam to see if he had a cleft larynx. My mom went with me the day of the surgery and my brother Brian stayed with Jacob and I overnight. I can only rank this day as day 2 of the hardest days of my life. Day 1 was being in pre-term labor with Olivia and getting ready to be transferred to OHSU from Tuality Hospital because they specialize in prenatal care. I was only at 32 weeks. But that was August 2012. Back to November 2011.
We arrived at the hospital fine, got checked in, they even took Jacob a half an hour early. Surgery went fantastic and they finished quicker then they expected. The Dr. didn't find a cleft in his larynx so that wasn't an issue and didn't need to be fixed. There was some physical scarring that the Dr. could see in his bronchial tubes and they biopsied a piece of tissue to find that the levels tested about 60%. To be diagnosed with acid reflux as a medical condition you normally would test about 20%. We didn't find that out until four weeks after Jacob's surgery.
Immediately after Jacob's surgery we ran into a road block. Jacob wasn't coming out of the anesthesia well. I am going to side vent and go off on a tangent here because it still bothers me to this day. The Dr's came out and told me his surgery went well, someone will be out in about ten minutes to take me back to be with him while he is coming out of the anesthetic. A half an hour later I started getting ancy and nervous. One of the nurses came out and told me to follow her. She led me back to the recovery area and Jacob was laying there with a handful of nurses surrounding his recovery bed. Only to be told Jacob is having a hard time calming down and coming out the anesthetic. Every time he started getting upset he would stop breathing to the point of going completely blue and rigid, and nurses having to bag him. No mother ever should hear that everything is great, his surgery was fine, you can go see him in recovery now only to be told we can't get him to calm down and he keeps coding. Here's you're blue not breathing son, hold him and see if you can calm him down. OH HELL NO! I understand he was having issues coming out of the anesthetic, that can't be controlled. But there sure as hell is going to be some more of an explanation then that. But that's the only explanation that I got.
Since Jacob was under the age of five and had a surgery he automatically was staying in the hospital overnight. Now it was whether or not he was to go to the children's ICU unit or to a normal room. Jacob wouldn't calm down. Every time the blood pressure cuff would squeeze on his leg he would hold his breathe until he passed out. Only since he was so small and they gave him so much of the anesthetic he held his breathe but couldn't control his body enough to make him take a breathe. His muscles were too relaxed and he would start coding. Meanwhile I would be holding him to calm him down, and then the blood pressure cuff would squeeze and Jacob would start coding, only for him to get ripped out of my arms thrown on a bed with oxygen masks being placed over his face while he is turning blue. Three separate times they were talking about needing to intubate to keep his airways open and flowing. Obviously after a surgery on his tonsils and adenoids, sticking a tube down his throat to open his airways isn't the best solution to the problem. After 8 hours of his blood pressure cuff going off every 20 minutes he finally had gotten to a point that he wasn't so upset and when he did he could catch his breath again. We didn't go to ICU but they did put him in a step up from the regular rooms and a step down from the ICU. It's right in the middle and they placed him directly next to the nurses station so they could respond quickly. Nothing will make the talons come out faster then watching you're son go through that and not being able to do anything about it.
Since then we've had some improvement, but mostly things have just stayed the same. He is still my super skinny, picky eater. We have a follow swallow study here soon so there of course will be an update as to what we find. I am pretty excited to figure this out and fix it!
Meanwhile December 2011... "the father" and Jacob were dinking around the house while "the father" was home on leave and Jacob fell and fractured his elbow. THAT was a real blast! He had a fantastic yellow cast the went from halfway above the elbow down. That came in February 2012...
This comment has been removed by the author.
ReplyDeleteThank God everything turned out ok! With Jacobs surgery and with O!
ReplyDelete