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.
First, because I have to have something good to talk about today, could my little guy be any cuter with his big blue eyes and white hoodie? I don’t think so.
I’ve had a lot of people ask me how we are doing. The truth is, today, not so good. Honestly, right now, I’m having a little pity party for myself and my little family.
Yesterday we had a really good day. I actually had myself convinced that things were back to “normal” (whatever that means). Grayson ate better than he has in weeks, and did great in the nursery while I went to Bible study.
Then last night around 9:00 he had another seizure. He woke up crying and Ryan found him in his crib, soaked with vomit and white as a sheet, his lips bluish. The next hour was spent holding him as he vomited again and again. We bathed him, changed his (and my) clothes twice, and finally he collapsed in his daddy’s arms. No ER visit this time, just a call to the on-call pedi who instructed us to give him Zofran and keep him hydrated. After about an hour, we put him back to bed and he slept until 5.
He napped a total of about 4 hours during the day today. It would have been more- his poor little beat-up body is so exhausted, but I had to wake him up twice- for physical therapy and then to go to his neurologist appointment (good timing, G, by the way- having your second seizure the night before an already scheduled neuro appointment).
The neurologist appointment was rough- G’s EEG had some abnormalities- he described them as little “blips” every few minutes where something is not firing correctly. He confirmed our suspicions that G had a seizure last night (based on my description of what happened and how he looked) and 2 seizures means a diagnosis of epilepsy. He will now start taking anti-seizure medication twice a day. I’m trying to look at this as just another piece of the puzzle that we need to have a diagnosis, but this piece sure is hitting me hard.
After we left the doctor, we drove to pick Hank up from daycamp. I had to get something from the office, so I brought G in and we visited with everyone at work for a little while. Then the vomiting started, again. I was soaked, Grayson was soaked, and the floor was soaked. And once again, Grayson has nothing left in his tummy to help him gain weight (his size 3-6 month jeans were falling off him today).
We got home and I set him down in the rock and play sleeper while I called my mom. Then I talked to Ryan for a few minutes until he started throwing up again. I gave him a bath, another dose of Zofran, and a bottle of Pedialyte, and he’s been asleep since 6:00.
I am worn out. I reek of vomit. My house is a mess. My baby has epilepsy, and will be 13 months old on Saturday and still can’t sit up on his own. My drivers licence expired last week on my birthday and I’m wondering when and how I’m going to make it to the DPS with a vomiting baby to get it renewed.
Can I just scream right now?!
It’s my birthday, and today definitely won’t go down as one of my most “fun” birthdays, but I am totally, completely ok with that. It’s definitely not about me anymore, especially when dealing with day gazillion of a sick baby.
Update on Grayson:
Yesterday was rough. After a few huge vomiting episodes in the morning, we schlepped back to the pediatrician. We saw our “backup” because Dr. D was out, but I like her and she confirmed that G was not dehydrated, which with his symptoms, would be the only reason to hospitalize him. But. BUT. He’d lost another half a pound. He’s down to 15.5 pounds (0.01%). Yeah. So I was freaking out about that but really the most important thing right now is getting him to stop vomiting and start feeling better. So I left with a refill prescription for Zofran and instructions to do my best to keep him hydrated and eating whatever food he will eat. Which is pretty much nothing.
This morning he woke up hungry (ya think?) and sucked down 3 ounces of formula. Yay! He seemed to be feeling a ton better, so I didn’t think to give him the Zofran. An hour later, up it came, like a fountain. Then later, same thing with Pedialyte. 2 doses of Zofran today, and there’s been no more vomiting.
|EEG time? Oh joy.|
We also had G’s EEG today at 11:00. Same drill as last time, but this time, he knows how to use his hands, and he’s a lot more opinionated about a million wires being adhered to his noggin. Because he wouldn’t leave them alone, the tech had to wrap his head in guaze so he wouldn’t pull them off. He screeeeaaammed through the set up, but then drank a few ounces of a bottle and fell asleep through most of the test.
|My little mummy baby|
Oh, and see that red pimple-looking thing on his cheek? I was putting him in his carseat to go to the EEG and somehow (how? why?) his cheek got pinched in the carseat buckle. On top of everything else- ugh, I
felt feel awful.
After the EEG, my friend Traci took me to lunch at Berryhill, my favorite restaurant. Definitely the highlight of the day. She had collected birthday cards from a bunch of my friends and bundled them in a cute little bag with ribbon- such a sweet gift! I got Grayson to eat a few bites of refried beans, and then we took some pictures that just make me laugh when I think about what the other people in the restaurant were thinking when they saw my baby- face covered in beans, crazy maniac hair with red marking pencil on his scalp that looked an awful lot like blood.
I love this last one- it makes me giggle because he looks like some kind of wild feral child, being raised in the jungle or something.
After lunch Grayson gave me my present from him- a 2 1/2 hour nap. But then he woke up grumpy and refused to eat again.
Can we just get back to normal? I’m just so confused about what’s going on. Is he really just sick with a virus and is having a hard time shaking it because of his deeper issues? Or is the vomiting actaully part of those deeper issues? I made him an appointment for later this month with a new Gastrointerologist- hopefully we can get some answers.
But until then, on a totally unrelated topic, here’s another picture that made me giggle (because I’ll take whatever giggles I can get these days!). And no judging that my Santa Fe bag is 1.still unpacked and 2. in the middle of the living room.
I returned home from Santa Fe last night, 2 1/2 days early. So much for a relaxing vacation. We were just finishing an amazing Mexican breakfast yesterday when I got a text from my mom, replying to my “How’s my little guy?” question. Not good. They’d had a really rough night- she was up with Grayson every few hours- he was still vomiting, his congestion was awful and he was generally just feeling crappy.
I immediately knew I needed to be home with him. First, I wouldn’t be able to enjoy the rest of my trip knowing my baby was sick at home, and second, there was no one to care for him today or tomorrow if he couldn’t go to daycare. My friend was amazing- my flight was changed within 5 minutes and she was so sweet and offered to do whatever I needed.
My mom took Grayson to the doctor yesterday afternoon while I was flying home. Grayson is down to 16 pounds (yes, this means he’s lost a whole pound since his checkup 2 weeks ago). Dr. D prescribed anti-vomiting meds and told my mom he needs to only have Pedialyte today. If he doesn’t stop vomiting, we need to go to the ER.
I got home after he was already in bed, but was up with him for about an hour later that evening- he was coughing non-stop and I could tell he just feels crappy. Thankfully, I was able to get him to drink some Pedialyte and take his medicine without him throwing up, and he slept the rest of the night.
This morning, he isn’t much better. Thank goodness he hasn’t thrown up today and is sucking the Pedialyte down, but he’s still coughing pretty much continuously. He’s asleep now, probably worn out from all the coughing.
Poor Little Man- he’s just had a rough time of it the last few weeks. I’m just so thankful getting home to him was relatively easy and I (and his Daddy, who took the day off today) can be with him all day today.