We got home from the hospital yesterday, and are adjusting (more about this in an upcoming post) but a few days ago it became obvious that Grayson’s rapidly growing locks just weren’t jiving with having strips of tape running across his face. Big chunks of hair were getting caught in the tape, and it was nearly impossible to wash his hair in the bath and keep the tape holding the tube in place from getting wet.
|Something needs to be done|
Ryan absolutely did NOT want to cut Grayson’s hair up until this point. Our agreement was that when Grayson could sit up on his own, we would take him to the barber shop for his first trim. He’s still not sitting up, but his hair wasn’t waiting. I convinced Ryan that a haircut was “medically necessary” at this point.
I didn’t want to take Grayson to a random barber shop or salon because 1. I didn’t want to have to answer a bunch of questions as to why my 13 month old can’t sit up on his own and has a feeding tube and 2. I didn’t want to travel with the tube/pump/feeding bag just yet- we are just now getting comfortable at home. Thankfully, we are pretty close with one of Ryan’s softball player’s family, and the mom just happens to own a salon. She graciously agreed to come out to our house for G’s first haircut.
Grayson was a champ- he sat in his booster seat and didn’t fuss at all. He was so serious the entire time, but I did manage to get a few grins at the end.
Isn’t he handsome? I can’t get over how cute and how much older he looks (sniff sniff).
Tomorrow we go home!
I am 90% thrilled, 10% terrified.
My baby will be going home with a tube down his nose which will feed him 24 hours a day. His home pump, supplies, and pole were delivered this afternoon, after an extremely stressful morning where for about 2 hours, we were told insurance wasn’t going to cover any of it. But we have a kick-ass doctor who wrote a letter saying if G doesn’t have the the tube at home, he will require multiple hospital stays and could die. I guess you have to be dramatic if you want to get anything done with insurance! So we’re good, covered 100%. Whew.
Grayson is doing really well. He’s already gained a little bit of weight, and is tolerating the constant feeding really well. He did throw up twice today, but very little, and the doctors aren’t concerned. And he’s feeling better too- he’s smiling, giggling, and kicking his little legs and waving his arms as if to say, “Wow! So this is what it feels like for my tummy not to hurt! Woo hoo!”
When I asked the doctor how long she thought he’ll be on the tube, she said at least a month. She said right now, there’s a 50/50 chance that he’ll have to have surgery to place a G-tube, which is a more permanent tube than the NG tube he’s on now. Really it’s up to G- how well he gains weight, and if he’s willing to take the calories he needs by mouth (right now he’s not even close). But we’ll pray that because his tummy feels better and will be emptying at an appropriate rate, his appetite will increase.
I have a lot of anxiety about going home. The NG tube requires a lot of maintenance- I have to syringe out some of his stomach acid and check the pH twice a day, and then push it back in (eww). I have to listen to his belly with a stethoscope and push air into his tummy and listen for a swoosh sound to ensure proper placement. There’s cleaning the bags and tubing, administering meds through the tube, and of course making sure G isn’t pulling on the tube and making it come out.
If the tube comes out, I won’t be putting it back in. I just can’t do it- I’d be too scared I was doing something wrong. I’ll be taking G to the pediatrician and she’ll do it. Let’s just hope it doesn’t come out on the weekend, because then we’ll have to go to an urgent care center.
I’ve been practicing all the steps today, and am feeling pretty confident. But it’s a lot easier in the safe cocoon of the hospital with a nurse looking over my shoulder to make sure I’m doing everything right. It will be a lot different when it’s just me at home. I’m sure in a few days I’ll have the hang of it and I’ll look back at this and wonder why I had so much anxiety. I’ll look forward to that day!
But, at least we are going home. I think 10 days has been quite enough for this “vacation”.
I think this dude’s ready too!
What. A. Day. I woke at 4 am- I know you are surprised I was able to drag myself out of the ultra-luxurious
bed vinyl couch I’ve been sleeping on for the past week. My thought was I’d take a quick shower before His Royal Highness woke up for a fun-filled itinerary of Bloodwork! NG Tube insertion! Gastric Emptying Study! Ole!
How is it that kids who are dead asleep sense when their mommies are attempting to spend 3 minutes doing something for themselves and then decide that it is URGENT that they be picked up NOW? Well, I did shower with a soundtrack of screams and then picked him up, and then really, he didn’t want to be put down the rest of the day.
He was miserable. No food or drink allowed due to the gastric emptying test that was supposed to be this morning- it didn’t end up happening until 1:00. On top of that, that mean lady with the needle came and stuck him- again- to draw blood for a thyroid test.
Then came the NG tube insertion. The original plan was to put the tube in after the gastric test, but in order to do the test, he had to drink 2 ounces of the solution, and they were skeptical if he would do that. Do down the nose the tube went. It wasn’t as traumatic as I thought it would be- G screamed through it all, but he’d been screaming all morning anyway. Since it was put in, the tube hasn’t really seemed to bother him at all. We did have to do an X-ray to make sure it went in his tummy and not his lung (um, yes, please make sure) and yep, everything looked good.
The gastric emptying test basically tests how fast his stomach is emptying after food is put in. Grayson hadn’t slept all day and had been crying nonstop, so I was confident he would sleep right through the 90 minute test, especially since I knew he’d be laying down. Well, what I didn’t know was they actually TAPED his little body to the board so he was in a weird little straightjacket and this meant NO THUMB. (Cue horror music). So he cried and cried for about 30 minutes and then settled into a whimper every few minutes just to let me know he was still dissatisfied with the current predicament.
So here’s the exciting part of this crazy day: WE HAVE AN ANSWER. The test showed that yes indeed, his stomach is emptying too slowly. This is probably causing him to feel full most of the day because the food is sitting in his stomach (getting old and stale). Then when he eats more, he gets sick. Also, (and this is just my own hypothesis sitting here thinking about this), maybe this is why he always eats so much better in the morning- the food has had 12-13 hours to empty from his stomach- and then his feeds get worse and worse throughout the day.
Even better news- there is medication to help this problem! We started it tonight, along with continuous feeds through the NG tube (1 oz/hour right now). Hopefully, with the help of the medication, we’ll get that food moving and we will be able to put some weigtht on that baby!
There has been no mention of us going home. We do know we will be here long enough to establish he can tolerate the feeds and that he is gaining weight. We also are waiting on labs and a possible genetics consult. I am happy to be here- the thought of going home with the tube (which we most likely will) is freaking me out right now. Thankfully, we will have home health care when we do, and I spoke to our pediatrician today and she said she would help me reinsert the tube if I need to. Also, I’m dreading being home because we’ll be back to our newborn-like days of being up every 4 hours (to clean the bag). Ugh.
So, our hardest, worst, and best day since we got here. I feel like we’re finally getting somewhere.
Just a quick update because I am too exhausted to write many details:
Grayson is not getting better. His GI and Swallow Study results are normal, but he’s still vomiting every time we give him food. We are doing a calorie count today, and so far our count is abysmal. What is going in is coming up, and most of the time he’s refusing to take the bottle and any solid food altogether.
He will most likely be getting an NG tube (feeding tube through the nose) in the next day or two. It’s a short term solution, but he needs nutrition. He continues to be on IV fluids to stay hydrated, and is taking Prevacid, Zofran, and his seizure medication.
One of the labs taken the other day came back showing his thyroid levels are on the low end of normal. Endocrine has been informed and may be getting involved. We are still hoping to see a geneticist to hopefully get somewhere on determining the root cause of all this.
Through all this, Grayson has been amazing. He’s sleeping a lot, and when he’s awake, he just wants to be held. I know he must be so confused, hungry, and exhausted. But I can still get him to giggle every once in awhile, and he takes the constant beeping, poking, prodding and IV adjustment without too much protest.
Please continue to pray for answers!
A lot of you have asked for an update- there’s not a lot of new news, because today has been just a waiting day. Since they don’t do the Upper GI or Swallow Study tests on the weekend, there wasn’t much to do today except keep Grayson comfortable and hydrated through the IV.
We did talk to our favorite doctor this morning, who sadly won’t be on G’s team of doctors anymore. The team decided not to give him any nutrition today through the IV since it increases the chance of infection. Tomorrow we definitely will have to get some nutrition in him, either by mouth or tube- which will be decided by the tests. The doctor also mentioned she was putting a genetics consult on a “wish list” so we may or may not get to see a geneticist while we’re here. She said since Grayson has so many issues, we probably won’t be able to address all of them during this stay, but we will be pointed in the right direction and will have a plan by the time we leave. I hope so.
Today Grayson was a little trooper, especially for a little guy who hasn’t eaten in basically 4 days. He still has his ear infection and it’s bothering him, and his arm was still puffy all day. He just rolls with the punches though. My biggest complaint is his stupid IV monitor which goes off nonstop for no apparent reason. Last night we were up from 1-3:30 am with it going off about every 2 minutes. Maddening. Grayson is asleep now and the monitor is quiet- let’s hope it stays that way!
Thank you all for your continued support, prayers, visits, calls, comments, etc. We are so grateful to each of you who cares about our little boy.
Hopefully I’ll have a big update at some point tomorrow!
Update on Grayson:
We have been in the hospital since Thursday morning. Grayson was staying with my friend while I had a counseling appointment and he vomited 3 times in the hour I was gone. Enough. I just can’t do it any more.
My friend drove us to the ER. On the way, I started throwing up and couldn’t stop. Stress, anxiety, stomach bug? Who knows. Unfortunately, I was too sick to be with Grayson the rest of the day. Thankfully, my mom and Ryan were there to be with him.
The ER doctors kept saying it was a stomach bug. Finally, my mom got one of the doctors to listen- this has been a recurring problem for weeks, he’s underweight, has always had eating problems, and has a list a mile long of other issues. They agreed to keep him overnight for “observation”.
Ryan stayed with him Thursday night but he got sick in the middle of the night. He’s still at home now trying to get well.
Yesterday, he was finally admitted to the hospital as an inpatient. I felt well enough to come up yesterday evening. Lots of doctors, lots of questions. GI consult- mentioned swallow study, upper GI study, possible NG feeding tube.
Today has been rough. He cried from basically 6 am-noon. It was obvious he had a bad tummy ache, maybe from one of the 3 new medications he’s on- one to tighten his stomach so he can keep food down. The doctor does not want us to feed him anything by mouth until the swallow study, which won’t be until at least Monday. So he will be getting fluids through an IV, which won’t be calories that will help him gain weight. They have assured me that he can go a lot longer on just fluids than I think, but it’s still hard for me to think he’s getting nothing to eat. At least he’s not throwing up.
Scary incident of today- we were giving him ibuprofen and as I turned him on my lap I noticed his arm with the IV was swollen and hard. His arm, hand, and fingers are HUGE. The IV had slipped out of place and had filled his arm with fluid. It’s awful, and was obviously causing him a lot of discomfort because he stopped screaming when we got the IV out. Hours later, it’s still really puffy, but going down. The team should be in any minute to put a new IV in- hopefully in his foot, so he can still have one good thumb to suck.
I am thankful because we finally have doctors and nurses taking this seriously and believing this is something other than a stomach bug. I’ve realized today that a lot of what I have come to accept as “normal” really is not. Grayson does not eat, and he never has. Every bottle, every meal, is a struggle, and it’s not right. We finally heard “failure to thrive” today and yes, that’s awful to hear about your child, but it’s also a relief. Because we’re finally getting some help.
Grayson, of course, is charming all the doctors and nurses with his cuteness. We’ll be here for awhile, and it’s uncomfortable and cramped, but I feel safe and optimistic. We are going to figure this out.