|Adorable as ever noogie and all|
On 4/30/13 Noah went into his first surgery. Surprisingly this was his first actual surgery even though he has been in hospitals and doctor offices every single month since he was born. Before this surgery Noah had been sedated twice in the past for his two prior MRIs. This time however he was actually given anesthesia. I was unsure how he would react to this and the surgery. I had anxiety for weeks leading up this surgery and exactly one week later I am still full of anxiety and fear.
A few months ago I had gone ahead and scheduled an appointment on my own with an ENT (Ear Nose Throat doc) for Noah. Nobody including his special needs pediatrician had ever mentioned Noah be seen by such a doctor. I however knew he needed to. Since birth he snored and snorted and always sounded like he had shallow breathing even though every oxygen monitor he had ever been hooked up to (12+) had always shown really good levels (thankfully). As I have mentioned endlessly Noah to date still in unable to drink liquids while he is awake and I have always felt like there was/is an underlying reason to think about in addition to his oral aversions and sensory issues. He always accepted liquid in his mouth using many forms of cups ect however he just could never actually swallow it without acting like he was drowning or in pain.
One day I caught a bit of a cold myself and my nose was completely stuffed and I was trying to drink my morning coffee when I realized that it was incredibly hard to swallow and breathe at the same time. It dawned on me that this might be what Noah is also feeling.
The ENT gave Noah an exam and didn’t see much but Noah started to snort and so he sent us for a throat x-ray. The x-ray showed that Noah’s larynx and his adenoids were vibrating off each other because of his low tone in his neck and throat. All this vibration caused his adenoids to swell very large and were blocking his airway. His tonsils looked normal and of good size so the ENT decided it best to remove Noah’s adenoids only at this time to open up his airways and hopefully in time he would be able to drink feeling safe someday.
Then, during his most recent session at Now I Can, one of the amazing therapists was watching me give Noah a bottle while he was asleep. She was very intrigued and noticed that all of the muscles that would be needed to get one to swallow were working normally. Then the next day I tried to give him a bottle while he was awake and she noticed that he was unable to wrap his upper lip around the bottle nipple.
In all the exams from every single doctor and therapist Noah has seen not a single one of them noticed that Noah had a very prominent upper lip tie. I remember once when he was first getting his upper two teeth I noticed how large and tight this frenulum seemed and showed it to his general pediatrician who said it was normal. When I was 11 years old and going through the braces stage I too had to have my upper frenulum clipped so that my upper teeth would be able to move together and reduce the pencil width gap I then sported. I put in a call to the ENT and asked if it would be possible to clip this upper lip tie at the same time he was already under anesthesia for his adenoidectomy. He agreed and an extra ten minutes was added onto his surgery time.
The morning of his surgery we were to arrive at 6am for check in. This was a very early start as I had to wake up around 4:30 to be able to get us both ready and to the hospital in time. I was the first to arrive and check in but within literally 15 minutes the entire room was full of families and small children still in their jammies not knowing they were all going to be knocked out and have something removed in a couple hours. I felt bad for every child that hour.
After Noah got weighed and dressed in this adorable little hospital jammies, which made him look like a karate kid, we were then escorted to the surgery waiting room. I was alone at this point as my husband had to work and I had told my parents to come up once he was taken back for surgery. Thankfully, my sister-n-laws (Noah’s care taker during the day) neighbor works at this hospital and had come in especially for Noah. This made me feel so special and helped tremendously with my anxiety and fear. She walked me though all that was going to happen and took him back for the surgery herself. While waiting in the surgery waiting room with my parents she not only called me once but twice within the 35 minutes surgery to give me updates. I felt like a VIP and was very thankful for her guidance and help. The surgery really did only take 35 minutes and that was from knock out time to post op. I was then called back to see my poor baby in this dazed and screaming post op state from the surgery and anesthesia. I felt so bad and then I saw the blood stains on the sheets and felt even worse for my little man. I could tell his was in so much pain and so confused.
Our “hospital angel” then led us to the 23 hour overnight observation area where we had to stay because they wanted to keep an extra special eye on Noah since he has neurological issues. This was a total blessing in disguise because there is no way I could have handled Noah at home that first night without an entire team of nurses and aides there to help us. His lip looked like he had just received a collagen injection from the frenulum removal and his entire face was just puffy.
Noah did NOT have a very good recovery. He was so uncomfortable and out of it that he just screamed and screamed and screamed. I felt bad for the other kids recovering and having to wake up to blood curdling screams. Thankfully our Angel as well as my parents were there to help me “try” to calm him down. They kept him hooked to an IV in his foot and were able to give him some stronger pain meds that finally helped calm him down and fall asleep.
The funny part of this entire adventure/horror story is that Noah has always hated being on his stomach. Tummy time in our house started in infancy as torture time and then later on turned into “I’m just going to lay here in protest and not do anything other than sleep or cry or chew my thumb.” However, literally the second out of surgery he was flipping wildly from back to stomach and since then this seems to be his preferred position. All this tummy time has really encouraged him to put weight on his arms and the one good thing that has happened through all of this is that Noah is now able to sit in his floor bouncer without the huggabebe pillow and can actually balance himself.
The first night was rough…really rough. Up every 20 minutes and almost a total refusal to eat or drink which is to be expected. It literally took me 23 hours to get in enough food and fluid to allow us to leave the hospital and go home instead of staying another night. In retrospect, I kind of wish we did spend one additional night there. As soon as I got Noah home, and after two bags of IV fluids and three doses of loratab, Noah was happy and cooing and hungry. He ate an almost 300 calorie meal which never ever happens. Then out of pure exhaustion both he and I took a long nap on my bed where I slept too long and didn’t wake up before he did to feed him his “sleep bottle”. As soon as he woke up everything started to go downhill. He was thirsty but awake and couldn’t drink anything. He was hungry but overly hungry and wouldn’t eat anything. He started to cry and scream and so his throat started to get sore and raspy. He kept banging his face into the floor or mattress and kept hitting his upper lip which would cause more pain. Every time we tried to sit him up or lay him on his back he would cry harder like we were poking him with needles or something. This lasted for two entire days and nights and both my husband and I were just spent.
I had taken the day of the surgery as well as the following day off work to be with Noah and my husband took the next day off work to be with him. We took turns trying to allow each other to rest when we could but still….we were plain exhausted. On Friday, the next day, we took Noah to his care givers house but that was not a very good day either. His food intake was going up but his liquid intake was dwindling further and further.
Feeding Noah while he sleeps is impossible unless he is sound asleep on his back so that we can position and feed him correctly so that he does not aspirate. Since he refuses to sleep on his back since surgery we have had to try and turn him over covertly and pray he doesn’t wake up. Prayers were not answered and he has woke up more times than not which means no bottle…less fluid…and approaching a dehydrated state again.
|heading out with battle wounds and arm braces|
Fast forward a few days: Totally dehydration now: Made a call into his doctor who rushed us to the Rapid Treatment Unit at Primary Children’s Hospital for what we like to call “The Noogie” insertion. When Noah was just 3 months old he got his first nose feeding tube aka Ng-tube aka Noogie. We hated it so badly that we spend every moment weaning him off the stupid thing. We have spent literally 13 months trying to keep the stupid noogie away. Like a bad nightmare it was now back in our lives to taunt and torture our whole family. We had to endure another overnight stay and I got to watch Noah puke and puke and puke because the first day of having a noogie is like gagging on a funny straw that has been shoved down your throat. It was another night of no sleep and watching Noah try to adapt to another oral issue. Keeping in mind he was only one week post op from his last surgery. Poor dude.
We have now had the Noogie in our home for exactly 8 days. We have found it to be a love hate relationship. We hate knowing that Noah hates it. We hate that it has made him not eat a single thing by mouth since it was put in. We hate that it gets caught on everything. We hate having to keep Noahs arm in a brace to prevent him for yanking it out (which he tries constantly). We have the process of it all and the care and management of the adhesives and syringes. However, this is probably the first week since we weaned off his last noogie where Noah has been well hydrated and we have seen an increase in energy in him that we just love. We no longer have to struggle to feed him bottles when he is asleep and can actually let him, as well as us, sleep uninterrupted. We have been able to get all medication in him which is nice. Plus, eat time we do try to feed him orally it is more for practice and not an anxiety stricken task to force calories into our son. Like I said love/hate.
Monday morning we have yet another 1-2 day stay scheduled in the hospital when Noah will be getting a permanent G-tube placed into his stomach. We have chosen to go with an AMT mini-one button with a 14 french size tube. We will be using both continuous feeds through a pump as well as bolus feeds through a syringe using gravity to flow the formula into him. Currently we are using Bright Beginnings soy drink that is 240 calories a can since he has a milk intolerance. However, this is all on our wish list and things might change mid surgery as they commonly do. G-tube feeding will be new to us and we do have our hesitations, fears, but also positive outlooks as well. It is the best option for Noah at this time and though we have fought this since he was an infant I regret not doing it sooner. I have joined all the tube feeding networking sites and educated myself to the nth degree about g-tubes and maintenance.
Monday starts yet another chapter to Noah’s story and another hospital stay and medical history line to his already too long list. Praying that for the rest of this summer (and year) we will be able to stay out of the hospital, away from IV fluids, and miles from the ER. I feel prepared and ready and I have a really good feeling about this surgery and what will come out of it. I am not going in with irrational expectations like I did with his first Ng tube. I will take it a day at a time and work hard to get Noah to eat orally as well as start to drink orally while awake. Already with the noogie I feel a weight lifted off my shoulders knowing he is fed, hydrated, and is getting his meds. The g tube which I might have to now call his “goobie” will allow Noah to have his throat and cheek back and once healed will be a discrete reminder to us that Noah is healthy.
Here is a link to an instruction Handbook about G-tube options and care that was given to us at our G-tube assessment appointment.