Clara and Everett

Clara and Everett

Saturday, July 1, 2017

Post Surgery Nightmare

So, I continue to try and upload pictures from my phone. The app is not working. I'll write the details and then work on the pics later, before I push all of these memories so deep in hopes of forgetting them forever.

Post surgery in St. Josephs where it was done was the highlight. He was eating ice cream and lots of liquid like food. He didn't drink. He tried, once, and that was enough for him to call it quits. It doesn't take this little booger long to shut down when he doesn't like how something is going. A trait I hope serves him well at some point in his life, just not post tonsil surgery.

I took him out of the hospital on Friday, knowing he wasn't drinking yet but he was consuming enough "food" at that point to make me comfortable with him staying hydrated. I thought, if he's eating like this now, we can only go up from here...until the scabs fall off. Or so I thought.

Doing "good" lasted for a half of a day. Then he decided he didn't want to swallow food either. We were mixing his disgusting meds (four of them: two pain meds, antibiotic and reflux meds) in with two ounces of his milk, knowing he needed something in is stomach with the medication. It was about 10 syringes full and we had to do that every 4 hours. It was awful. It got harder and harder to get him to get it down, by Sunday (Father's day) at my 4am attempt, I called it quits. He was shutting down and he held the liquid in the back of his throat while coughing and gagging, doing his best to not let a drop by. Andre agreed, he hadn't had a wet diaper since Saturday afternoon, he was weak, and lethargic. I will always be safe over sorry. He took the next poke like a champ, but I asked for the best guy in there to attempt and to put it in his forearm since that's where I feel they are most comfortable on me, wrists and hands are so bony, I hate IVs. We were settled in our room by 6am and I started begging the doctors to give him his medication through the IV. They told me it wasn't possible.

It wasn't until I called the Dr. in to watch me try and give him his medicine orally that she saw how painful the process was, and she changed her tune and oh, yea, all of a sudden meds can be given in an IV?!. The nurse was pissed at me of course, I refused to give him his medicine until the doctor was present because no one believes me apparently, oral defensiveness is no joke when it comes to this little man, that's on a typical day. Add pain and horrible tasting medicine that stings going down, it was awful and had it not been SO much medicine I think he could have handled it. I explained to the doctor that he was eating, but since he has had so many negative experiences with meds post op he quit on me and convinced her that I was never going to get him to eat until the "options" going down his throat were those that he approved and "enjoyed", no one enjoys anything going down their throat post tonsillectomy.

By Wednesday he was up to 3 more IV's since they kept blowing. I couldn't tell you if his veins suck or if being hypotonic and bending in ways that most humans cannot, contributed to the failing of IVs. Either way, it was torture every time, he knows EXACTLY what is coming and it breaks my heart. Some were easier than others but the process never seems okay when it's your baby. He was not only becoming defensive orally at this point but defensive overall. He didn't want anyone near him. Only daddy and mommy could hold him, when I went to stand up (once in a blue moon) he would panic, wondering where he was going. We sat in that blue polka-dot chair for days and that was his happy place, in my arms. We didn't move much. I didn't hydrate because setting him down to pee was scary for him. I did everything in my power to ensure he felt as secure as one could in this situation. I felt like the worst mom on the planet, letting him suffer. It was this morning that the doc had asked the resident doctors to leave so she could talk to me in private. OH SHIT. I had no clue what was coming. She said he was going to need a central line on Thursday to get protein and other nutrients into his frail little body. She said in the following day, probably by Friday, he'd need a G-tube. He was starving himself. He had lost 6 lbs. I could see him getting skinny but I just never thought about it all that much, I couldn't tell you why. Maybe because everyone I spoke with said that post surgery they didn't eat for two weeks, I thought it was normal, which was dumb. She said it was it was one thing to get fluids in him, and the central line would allow for more nutrients, but he needs food in his stomach. Normally, it would be as simple as an NG tube which goes through the nose to the tummy. But, due to his surgery and the fact that we were in the risky window of him bleeding, they couldn't take the chance to go by the site with the tube. I called his ENT in a panic. I asked if this was common, he said it has happened. WHY DIDN'T ANYONE TELL ME THIS IN ADVANCE?!?! I know his defensiveness, I knew he was going to struggle, I knew we were going to be in the 2% of people hospitalized because he wouldn't drink.  I knew we would be in worst case scenario, I just didn't know THIS was what worst case scenario would be. The ENT told me we could be in the hospital for two weeks until he drank, I know it's pretty stupid of me to think he could go two weeks without eating, but my brain didn't go there. Anyway, he walks this line, he always has and I'm afraid he always will. Wednesday night, while daddy and sissy were there playing toys with him, he ate. It think with all of us together it feels more like "home" or as home like as it can get. When I talked to the guy at the front desk of the ENT office while waiting to talk to the ENT he was asking about my concerns, when I explained them he said, "Have you tried everything he likes?" I told him no since pizza wasn't on the "soft" menu. He said, "GIVE THE KID PIZZA!" So, we did, and he ate. He is always happiest in the evenings with Dada and Sissy there with us, we had him distracted with his DVD player. When we asked if he wanted pizza and he started signing it, he had asked me for days for milk but wouldn't go near his bottle. He just wanted me to put it directly in his belly, I wish I could E! He ate an entire piece AND a yogurt. I was on cloud nine, he must have been too with a full belly. He had lost 6 lbs and he was a RAIL. It made me so sad to change his diaper, he was so skinny. So, we ate pizza for breakfast, lunch and dinner. Sneaking yogurt bites in there as we went.

By Thursday I couldn't stay another night. I was "sleeping" in that rocker with him in my arms for days and getting MAYBE an hour of sleep since Sunday. I had not slept since the night before surgery, other than Friday night, thank goodness Andre let me get a full night of rest while he tended to E and slept in the living room. I was done. I could feel myself getting sick. My brain was a mess, I started my period, I know TMI (too much info) but it was a perfect storm for me to be a mess. I slept like a ROCK Thursday.

Steven came Friday am so I could get to the hospital in time to let Andre come get ready for work while Clara slept. When I walked in they were taking out his IV. It had busted, again. :((((( I knew it was going to be bad, I KNEW they were out of places. Andre left and the IV team wheeled their dreadful little cart in the room. She went for his foot, then his hand, this put us at poke #11. They had to wrap him up, no one could hold him, not even me. I felt like I was going to have a nervous breakdown. Finally I screamed at her to stop. IT was about 40 minutes of poking and pushing and pressing on his already bruised arms and wrists. I couldn't deal. Another nurse came and she was going to attempt and then she gave me one look and just hugged me. She was southern, and black, and it was one of the best hugs I've ever gotten. She squeezed Everett and I for a solid five minutes while I broke. She told me there are other options and that she would not go near my baby "other than to love on his cute self" - I can still hear her sweetness. She gave me the relief I needed. I called Andre and begged him to come back. We had to figure something else out, which I knew would be a central line. He hadn't eaten anything yet, I knew they'd get him on the list. When the doctors came, they said the PIC team was booked solid. I knew they were going to come at me with getting the "best of the best" to get him another IV until Saturday. Nope. I told them I needed him out. We needed out. We were both losing our minds and Everett had lost all hope in humanity. He didn't trust a sole, he was at the end, we were done. I begged them to let us go home and try. Give me a 24 hour window to get him home, comfortable, bathed and in his own bed. I knew I had to give meds orally, which sucked, but it was worth it to get out. They left, talked it over and agreed, they knew he would do better at home and I know they trusted I'd bring him right back if not. I had to give him the chance. We didn't get out of there and home until 6pm of course. He ate some that day but not lots, he was done. Andre came to help me with two meals since it's a two person job, dog and pony show of convincing him it's okay to eat. He is always hesitant about the first few bites but he gets past those and then he rolls with it and starts to accept yogurt, but you can toss the yogurt in too soon, timing is key.  So, he was already getting quite dehydrated from no IV all day. We had tylenol that went in his bum, better than orally. We had a plethora of strong medication, that of course insurance wouldn't cover so we had to pay out of pocket. Money was not going to stop me from busting out. The MOMENT I told him we were going home he changed his tune, he knew. He played with sissy, I gave him a bath, and he went to bed. Night one was rough, I think he was waking up thinking he was in the hospital, I'm sure weird not being in my arms for the first time in almost a week. We got through it and kept him medicated but he wouldn't drink. He remembered where we gave him meds before we took him to All Children's and would start arching if we were in those places. At that point we learned we needed to move about the house and give medicine at random spots so he didn't start to anticipate and hate certain rooms or areas of the house. He always knew what was coming, but I do think it helped.

Saturday am I went to the store at 7, thankfully everyone was asleep. I stocked up on pizza, yogurt and got watermelon and a few other options. It was a slow go, mornings are never as great as afternoons. I was in touch with an old parent of one of my students who is an RN and she helped me pick the best meds and gave me great advice, kept me calm, haha, my new calm. I was so scared, I think I paced the entire day. I couldn't take him back, I just could not. He ate "enough". He continued to consume enough to get by, we had many wet diapers. He slept 11.5 hours Saturday - Monday, I thought the surgery did its job. I was stoked. I knew it was too soon to really know but he has never slept that good, he even napped forever. He took 2, three hour naps and a 2.5 hour nap over those three days. He did wake in the night but it was less often and very brief. I felt "great" - I was sick, but the sleep was great. Sunday I took Clara to the beach so I could get out of the house knowing this coming week we were going to be stuck at home since I couldn't take them anywhere with it being to hot and the risk of increasing dehydration. I felt horrible after the beach and went to the walk-in clinic. I had a UTI (from sitting and holding my pee for a week), a double ear infection and a sinus infection. The good news was I got an antibiotic that covered all three.

Tuesday night came and HE DRANK, 5 ounces over the course of a few hours. His drinking isn't smooth, I can tell it's not comfortable for him, still. He "clicks" a lot, it sounds uncoordinated, like he's drinking air. He has continued to drink each day and continues to consume more. Now he is almost at his typical liquid consumption.

The weird things now are: he isn't eating so well, he is grinding his teeth ALL day, he is drooling because he won't swallow his spit and he's sleeping like crap. So, that wasn't an even trade, but hopefully all of these things work themselves out. He is a stubborn little man and it's hard to determine if he is in pain, if it's behavioral, he is waking with what seems like night terrors. I don't know if this was the right choice. It was horrible and life doesn't seem any better, in fact, a lot worse. I hate him not being able to tell me where things hurt and if something is pain or a bad dream. My thought process was that age 2 is HUGE for development, he needs good rest in order to retain and grow well. Since his sleeping patterns are back to usual with an added bonus of night terrors I'd have to say, no, not worth it. Not to mention having taken 2,000 steps back orally with feeding and drinking. Life is hard enough for this little boy, I wish I didn't make it harder. Maybe three weeks out will prove different. We have a ways to go, hopefully everything improves. We leave for NY in a week, I don't think at this point if it matters if we are here or there, things are a mess, but we're not in the hospital, so, I'll be thankful for that. Pics soon, I hope.

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