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?!

AAAAAAAAAAAAAAAAAAAAAAAA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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.

I’m on vacation!

My good friend is treating me and two other friends to five days in Santa Fe, New Mexico. She has a gorgeous adobe vacation home with perfect southwestern decor (heavy rustic wood furniture, turquoise, iron…swoon!). We are planning on sightseeing, hiking, (window) shopping, eating good food, and relaxing. Perfect.

I’m trying to relax, to have a great time, and I am. But I miss my family terribly already. I won’t see Grayson again until Thursday morning, and right now that seems like an eternity away. I miss him so much and it feels like a piece of me is missing. The girls I am with keep telling me he’s going to be fine, that he’s in good hands. I know that. Ryan, my mom and Denise will keep him safe, happy and healthy. It’s just hard on me to be without him.

It took me hours and hours to get everything organized for G to be away from him (and him being in 3 different houses) for 5 days. The food was by far the hardest. Oh, where are the days when he just took bottles and that was it? That was SO much easier. And making it harder is we’ve had a really rough few days with his eating- he just doesn’t want to keep anything down. I’m really, really worried about his eating/vomiting and it’s making it hard to keep my mind off it.

I’m glad G is getting time with people other than me. Ryan has been sweet to send me lots of pictures and texts- right now he’s apparently sitting in church with his Dear singing along with the hymns. That makes me smile. And Ryan swears he’s said “Mama” several times today. Hmmm…so his mama goes out of town and he decides to start talking? Does this mean he misses me?

So I’m off to enjoy this gorgeous, COLD (cold weather? what’s that?) New Mexico morning. Hopefully I’ll have some great pictures to share in the next few days!

According to this, I must be a really, really good mom. I was going to take pictures of my disaster zone house after 5 days with a sick baby, but I’ll just let you use your imagination instead.

Happy Monday!

I want to say thank you but I don’t have the words to express the gratitude for the love and support our little family has felt the past four days. I am overwhelmed by your love and concern for Grayson. We have had people call, email, text, visit, pray, bring food, take care of our dogs, and leave comments on this blog and facebook.
Thank you, thank you, thank you.

Grayson is doing much better. He’s had a rough few days- fever, diarrhea, and not wanting to eat. At our visit to his pediatrician on Friday, Dr. D suspected he may have strep but the test was negative. She put him on antibiotics just in case, but we are having a hard time getting Grayson to keep the medicine down- he gags and then throws it up (along with anything else that’s in his stomach). He hasn’t had fever in over 12 hours now, so I’m hoping he is on the mend.

I also talked to Dr. D about protocol if G were to have another seizure. When the paramedics arrived at my house, I asked them to take us to Texas Children’s (west campus) but they wouldn’t. They said TCH was “full” (whatever that means) and they were only to take kids there who had pre-existing conditions. I tried to tell them G has neurological issues and wouldn’t that qualify? Guess not. So we ended up at Herrmann, which was fine- this time. Dr. D said unfortunately, if you call an ambulance, you really don’t have control on what hospital you go to. But if it happens again and I feel comfortable driving him myself, then of course I can go to the ER at TCH. I would hope if this happens again, I will be able to not be so freaked out (I literally thought my baby was dying) and would be able to get him in the car and drive him to the hospital safely.

I am really hoping his seizure was due to fever and not part of his neurological issues- this is his first real fever and real illness, and maybe it just shocked his little system. And I wonder if there’s any way to really know for sure- maybe not. I had a message yesterday from  the neurologist’s office- apparently they called Friday, but my stupid phone never rang and the voicemail didn’t pop up until yesterday- grr. Anyway, he wants to see Grayson in the office and is going to order another EEG. I am wondering if this time it will be a 12 or 24 hour one. I plan on calling first thing tomorrow and hopefully they can see him this week.

Right now my little guy is sleeping peacefully- since Thursday night I’ve been checking the video monitor obsessively again- like I did when he was a newborn- to make sure he’s breathing normally. Thank  you again for everything – our family loves you!

Sweet Baby Boy,

What is the deal with you and the month of September? You were born last September, and we just celebrated  your birthday last week- isn’t that enough (good) excitement for one month? Do we really have to add terrifying medical scares to the mix? Last year, you were rushed to the ER and had your very first ambulance ride, and last night, we had a repeat performance. Here’s what happened:

You were really fussy all day yesterday- at first I thought you might be getting ready to cut another tooth (when are you going to do that, by the way? It’s been months since a new one made its appearance). Fussy, snotty nose, diarrhea, low grade fever- I was sure I was right. We had Physical Therapy in the morning, and you screamed through the whole thing. The rest of the day we basically spent on the couch, and you switched between crying and napping.

By the afternoon your fever peaked at 102.8. High for you (you always run low, just like I do), but from everything I’ve read and heard from my mommy friends, not dangerous. Then I remembered there were 5 kids sent home from your daycare class on Monday with Hand, Foot and Mouth disease. You didn’t have any sores, but I figured maybe they were coming and you just had the other symptoms. I decided not to call Dr. D (cue mommy guilt) because if it was a virus or teething, there was nothing she was going to be able to do. I’m so sorry I didn’t, little dude.

I put you to bed at 6:00 like usual, but you didn’t fall right to sleep as usual. You cried and cried. I went and got you and we sat and tried to watch some TV and I attempted to give you a bottle, which you refused. After about 15 minutes, I decided to put you back in your crib and let you cry it out. When you are tired, you don’t like to be rocked anyway; you just want to be in your bed with your thumb in your mouth. This time, you fell fast asleep.

At about 7:15 (I remember the time because I was about halfway into the Big Bang Theory) I heard you grunting in the monitor. It was a sound I’d never heard you make before. You do make a lot of noise while you’re sleeping  though, so I confess I didn’t go in  your room right away. The grunting didn’t stop, so I went in and noticed you were face down in your crib. I decided to attempt to turn you over on your back but when I lifted you up, you were soaking wet and your crib sheet was soaked. I picked you up and you were totally limp. I ran with you in my arms to the living room and was shocked- you were pale, your eyes rolled back, your lips trembling and you weren’t responding to me screaming your name at all. I immediately picked up my phone and dialed 911.

As I was talking to the 911 operator, I felt very calm inside. I knew I had to remain calm for you. However, listening to my own voice was like listening to someone else- I sounded hysterical. It really was like two different people in that room. After giving the operator our address, I hung up and paced with you from the front of the house to the back. You were moaning and would still not respond to me.  But then, even before the paramedics arrived, I knew the seizure was over and you were ok. You were still fussy and disoriented, but were breathing normally and looked more “normal”.

They took your vitals and then a few minutes later, we got in the ambulance. We both lay on the stretcher, you on top of me. The paramedic gave you both Tylenol and Ibuprofen on the way to the hospital. You do realize this was your second ambulance ride and  you are only 1 year and 1 week old, right?

At the hospital, they took blood (which of course with your tiny, almost nonexistent veins was no small feat), hooked you up to an IV, and did a CAT scan and chest X-Ray. All normal. The doctor came in and wanted to do a spinal tap to rule out meningitis. We refused. I know you don’t have meningitis and didn’t want to put you through that (again- you’ve already had 2 of those in your life). The doctor was not happy that we refused the spinal tap,and made me sign papers that we were going against medical advice, but I know we did the right thing.

You were “diagnosed” with a febrile seizure, but Dr. R, your neurologist, told me this would happen. That you are in another category and it may not be febrile. We couldn’t get him on the phone last night and I am waiting to hear from him this morning. You still feel crummy today- your fever is back up and you are having nasty diarrhea. We have an appointment this afternoon with Dr. D- I hope she can help us get you to feeling better!

So let’s make a deal now, Dude. NO MORE September drama, ok? You are totally, completely worth everything you make us go through, but seriously. September should be all about your birthday, not ambulance rides, hospital visits, and scaring your parents to death.

I love you so, so much and I’m so sorry you’re sick.

Love,
Mommy

Grayson had his 12 Month checkup this morning with Dr. D. Medical stuff aside, I was amazed and excited at how busy Grayson was- it wasn’t very long ago I could just hold him still while we waited and when Dr. D examined him- um, not so much anymore! He wiggled and rolled all over the exam table- kicking his legs, waving his arms, and grabbing the stethoscope. Dr. D gave him a tongue depressor to hold instead, and he promptly transferred it from one hand to the other…little showoff! (transferring is a milestone that took G a long time to acheive, but he’s got it now!).

12 Month Stats:

Weight: 16 pounds, 15.5 ounces (0.29%)
Height: 28.25 inches (8.06%)

Nothing new- we are obviously still concerned with weight. Overall, eating is going well, but it’s a slow process. We decided we are going to go ahead and introduce Pediasure, even though I was against it when we saw the GI doctor in July. But I have to do everything I can to get him to gain weight so he can grow. It will be interesting to see if he likes it.

Grayson did not get any vaccinations today. After much consideration, I just don’t feel comfortable giving him shots until we have more information about what’s going on with him. I told Dr. D I want to wait until we see the genetics specialist in November to make any decisions about future vaccinations.

It’s interesting that today was his one year checkup- exactly one year ago today, this was Grayson at his 5 day checkup:

This was the moment that we found out Grayson was a very sick little baby- his temperature was dangerously low, and he had dropped to 4 pounds, 9 ounces. We were immediately sent to the ER, and then a few hours later, transferred by ambulance downtown.

The memory of a year ago is obviously very emotional for me. It’s hard for me to even write this because that day was so scary and horrible. I’m just still so thankful we did have that appointment and for the doctors and nurses who saved his little life that day. I told Dr. D today was a much happier appointment than September 27, 2010!