A few weeks ago, Clark had a lip infection. His lip was swollen to about 4x it's normal size and he was treated with antibiotics, which made it go back down...but not all the way back to normal. This week, we noticed the lip was swelling again and then the night before last we noticed a lump above his right front tooth on his gums. The lump kept getting bigger and bigger until eventually you couldn't see 2 of his teeth.
Yesterday, we took him to see his pediatrician about it, who was very worried after she examined him. She wanted to admit us immediately, but said that she thought it would be a good plan to either see his dentist right away or go to the ER at children's hospital. We opted for the ER.
That ended up being a bad idea because here we were, for 3 hours, surrounded by people who know virtually *nothing* about the mouth. Going to the dentist first would have been the better idea. Luckily, the ER called Clark's dentist, who said come over right away.
The dentist explained that what was happening was the body's way of rejecting the teeth (these are the two that do not have enamel, due to the high level of antibiotics he was given at birth in the NICU). SO, he prescribed antibiotics and scheduled Clark for surgery next month (the day after his birthday) to remove the two infected teeth.
Please pray that this infection (which was diagnosed as an abscess) goes away quickly and for a safe and uneventful surgery for Clark. We've known that these two teeth were going to be a problem ever since they grew in, since they didn't have enamel. His dentist was hoping that the solution would be as simple as a cap, but unfortunately, that's not the way it turned out.
Thankfully, so far though, Clark has had no signs of infection other than the lump in his mouth and has been eating normally. Well, normally for Clark. Although, he has gained a few oz. He's just shy of 20 lbs. He'll be 2 in a few weeks and wears 12 month clothes, which are quite loose in the waist. He's a very skinny little guy. Prayers for weight gain are very much appreciated, also.
Thursday, December 29, 2011
Thursday, December 22, 2011
Friday, November 25, 2011
Thursday, November 17, 2011
World Prematurity Day
 | |
| but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31 |
Tuesday, November 15, 2011
Roadtrip to Nashville
We just got back from a trip to Nashville to visit friends. It was a great trip and Clark traveled really well, surprisingly. He did lose 1/2 a pound while we were there, so that is worrisome, especially considering we have his followup with the GI next week. Please pray for him to regain that weight.
Monday, November 7, 2011
Thursday, November 3, 2011
Plan P
Prayer & Pediasure
As you may know, Clark has been a milk (& any milk like substance) refuser since February. That , I believe, is *the* reason we're in the boat we're currently in. Last night, as I was chatting with my dear friend KK, I told her we were moving on to "plan C" because the tube didn't pan out. She quickly responded that her husband said "We're on plan P, more prayer and Pediasure!". I was immediately a fan of this plan.
I wanted to report that as of this moment, Clark has had 2 boxes of Pediasure today (totaling over 700 calories). Plan P (especially the prayer part) is working! Keep praying because this could be the ticket to avoiding (another) surgery for Clark. I am amazed that he is drinking it, as he has never done this before, and we have certainly tried countless times.
While we're at it, if you could please pray for him to be 20 pounds by next week, we would really appreciate it. Right now, he weighs 19lbs 2 oz & has a BMI of 14. If you know anything about BMI, you know that 17 is considered underweight. Anything lower is practically emaciated. And Clark's ribs are definitely visible.
Thank you all again & again. We couldn't do this without you & your love & prayers <3.
As you may know, Clark has been a milk (& any milk like substance) refuser since February. That , I believe, is *the* reason we're in the boat we're currently in. Last night, as I was chatting with my dear friend KK, I told her we were moving on to "plan C" because the tube didn't pan out. She quickly responded that her husband said "We're on plan P, more prayer and Pediasure!". I was immediately a fan of this plan.
I wanted to report that as of this moment, Clark has had 2 boxes of Pediasure today (totaling over 700 calories). Plan P (especially the prayer part) is working! Keep praying because this could be the ticket to avoiding (another) surgery for Clark. I am amazed that he is drinking it, as he has never done this before, and we have certainly tried countless times.
While we're at it, if you could please pray for him to be 20 pounds by next week, we would really appreciate it. Right now, he weighs 19lbs 2 oz & has a BMI of 14. If you know anything about BMI, you know that 17 is considered underweight. Anything lower is practically emaciated. And Clark's ribs are definitely visible.
Thank you all again & again. We couldn't do this without you & your love & prayers <3.
Tube Fail
Just a short (& disappointing) post to let everyone know that the tube didn't work. They tried 3 times and couldn't get it down, the last time it *may* have gone down at first but then he threw it up. After that, Jeramy and I decided we weren't cut out for holding him down & shoving a tube down his throat while he gags. So, we asked to be discharged so we could come home and at least have a comfortable night's rest in our own bed. Finally, they did let us go.
So, we're back at home, tubeless. We put the special formula into his bottle last night though and he did drink it while he was sleeping. We're praying that will be the key. The next step would be surgically installing a port in his belly to feed him through. So--please pray that he continues with the night feeds. Thank you all again for the prayers, we definitely need them.
So, we're back at home, tubeless. We put the special formula into his bottle last night though and he did drink it while he was sleeping. We're praying that will be the key. The next step would be surgically installing a port in his belly to feed him through. So--please pray that he continues with the night feeds. Thank you all again for the prayers, we definitely need them.
Wednesday, November 2, 2011
Nasogastric Tubes & such...
I'm writing this blog from Dell Children's hospital in Austin....room 436. We voluntarily admitted Clark for placement of an ng feeding tube because he hasn't gained weight in 5 months. It was time, in other words. Sure, he gained an ounce here & there, but next thing you know, he'd lose it again. Just for reference, in June, he was 18 lbs 15 oz and today he was 19 lbs 2 oz.
So, shortly a nurse will be in to show us how to place the feeding tube (it will be in one of his nostrils) and feed him via the tube. The plan is to supplement him at night with around 400 calories of formula (Boost Kid Essentials 1.5). During the day, he'll be free to eat as he pleases. Recently, he's been eating really well...for a toddler. But, not anywhere close to enough to get him caught up.
Fingers crossed---hopefully this is the ticket to a healthy weight for Clark. Thank you all for the prayers.
So, shortly a nurse will be in to show us how to place the feeding tube (it will be in one of his nostrils) and feed him via the tube. The plan is to supplement him at night with around 400 calories of formula (Boost Kid Essentials 1.5). During the day, he'll be free to eat as he pleases. Recently, he's been eating really well...for a toddler. But, not anywhere close to enough to get him caught up.
Fingers crossed---hopefully this is the ticket to a healthy weight for Clark. Thank you all for the prayers.
Monday, October 3, 2011
Tuesday, September 27, 2011
Medical Stuff...
So--it's been a long time since I've posted one of "these" type posts. I guess I was trying to keep everything positive & upbeat (if a bit sparse) on the blog. But, this is kind of a big deal.
Clark was given a short-term (2 week) time frame in which to show decent improvement with his weight. Just as a refresher, he's 20 months old and is hovering close to 19 lbs. Yes, he's about the weight of the average baby 1/2 his age. If he doesn't show improvement by Monday, he is going to be admitted to Dell Children's in Austin for a nasogastric (nasal) feeding tube. He'll likely be there for several days, if admitted. I assume that if he is admitted & if he shows improvement with the NG tube that we'll be given the choice to surgically install a g-button (feeding tube directly in his belly). But, I think that we would also have the choice of keeping it in his nose. That is something we have to pray/think about. It's all pretty extreme, especially the surgical route.
That's where you guys come in. We need lots of prayers in the next 5 days, specifically for weight gain. I must admit that this feeding tube business isn't a battle I want to fight. I just want him to eat and gain like any normal baby would. As I've learned though--it doesn't quite work that way with Clark. But, I've also learned that prayers work. Just remember when he was in the NICU fighting for his life. You guys prayed for him, and here he is! Feisty as all get-out. (I have to constantly remind myself that I promised God I'd take whatever he gave me as long as I could bring Clark home.) Suffice it to say, Clark is really feisty.
These days, he's up to his nose in books. He'll tell you about cats & cupcakes or Bruce Wayne & the batcave. He and Kade have the best time playing, one of their favorite phrases is "I want to play!" He's started wearing his glasses regularly, so that's progress. He also loves green beans (too bad they're not packed with calories).
Thanks for taking the time to read this, wish it was more upbeat. Please pray for pounds. Until next time...
Clark was given a short-term (2 week) time frame in which to show decent improvement with his weight. Just as a refresher, he's 20 months old and is hovering close to 19 lbs. Yes, he's about the weight of the average baby 1/2 his age. If he doesn't show improvement by Monday, he is going to be admitted to Dell Children's in Austin for a nasogastric (nasal) feeding tube. He'll likely be there for several days, if admitted. I assume that if he is admitted & if he shows improvement with the NG tube that we'll be given the choice to surgically install a g-button (feeding tube directly in his belly). But, I think that we would also have the choice of keeping it in his nose. That is something we have to pray/think about. It's all pretty extreme, especially the surgical route.
That's where you guys come in. We need lots of prayers in the next 5 days, specifically for weight gain. I must admit that this feeding tube business isn't a battle I want to fight. I just want him to eat and gain like any normal baby would. As I've learned though--it doesn't quite work that way with Clark. But, I've also learned that prayers work. Just remember when he was in the NICU fighting for his life. You guys prayed for him, and here he is! Feisty as all get-out. (I have to constantly remind myself that I promised God I'd take whatever he gave me as long as I could bring Clark home.) Suffice it to say, Clark is really feisty.
These days, he's up to his nose in books. He'll tell you about cats & cupcakes or Bruce Wayne & the batcave. He and Kade have the best time playing, one of their favorite phrases is "I want to play!" He's started wearing his glasses regularly, so that's progress. He also loves green beans (too bad they're not packed with calories).
Thanks for taking the time to read this, wish it was more upbeat. Please pray for pounds. Until next time...
Wednesday, September 14, 2011
Monday, September 12, 2011
Tuesday, September 6, 2011
Saturday, August 20, 2011
Saturday, August 13, 2011
Thursday, August 11, 2011
Sunday, July 31, 2011
Big News!
Two years to. the. date. we found out about Clark...he took his 1st steps!
As you can imagine...we're practically having a party.
Updates & more pics from our vacation soon to follow.
Thanks for keeping up with us!
Friday, July 1, 2011
Sunday, June 26, 2011
...plog?
 |
| little bigfoot |
 |
| Sharing: Not something Clark is fond of. |
 |
| This one's just too crazy not to post. |
I just wanted to post a few pics for now. Clark is enjoying the summer, especially the swimming part!
Tuesday, June 14, 2011
Saturday, June 11, 2011
Wednesday, May 4, 2011
This one's going to be long--April was a crazy month.
I'll start out by telling you that Clark is OK. Although there have been times this month that were very trying and even scary.
On April 9th, 3 short days after my last update, Clark started doing something funny. He'd throw his hands in the air with his chin tucked down, squint his eyes and stuck his tongue out. The 1st time this happened, we were shopping for a new vehicle...a van, in fact, so that we can pile everyone in. I didn't see it--Jeramy did--but he saw it looking into the rear view mirror, into the mirror on Clark's seat back. He said "oh...Clark just did something really cute." Apparently, it looked like he was making a funny face and stretching. It happened again that day, I still didn't see it. My grandparents were keeping Clark and I was running errands. Later that evening, I definitely saw it, and I immediately knew something was wrong. Not only did he do it again, he did it 5 times in a row. I went to pick him up and tried to be calm--after all, he wasn't upset and seemed ok afterward. My grandmother looked at me & I said "I think he's having seizures." Jeramy was at work, so he received a call from me telling him to get there quick, because I was pretty sure something was wrong.
He showed up in about 2 seconds...as Jeramy is known to do in situations that might be emergencies. We decided that I should call the nurses line at Scott & White. Because as scary as the thing was--it didn't seem to effect Clark. The nurse asked me a lot of questions and at the end she said "according to what you're saying the most reasonable thing you could do is call 911." My jaw dropped and I asked her "Really? It doesn't seem that serious, couldn't we just drive him?" She said "We can't tell you what you should do, but based on what you've said, 911 would be the most reasonable option." So I was pretty stunned & even more scared then. We drove up to our house, packed Clark's bag and called 911. So far, so good..no other episodes of whatever was happening to him.
The ambulance arrived and asked their questions, I explained what was happening and got "Well, it doesn't really sound like a seizure to me...but if it was my kid, I'd take them to the ER, too." After a long (hah...20 or so minutes) backwards ambulance ride, with the wind blowing 90 miles an hour, we arrived at the Scott & White emergency room. See, the cool part about arriving in an ambulance is that you get right in to a room with a nurse and then shortly a doctor. Looking back, it was serious business, even though at the time, it felt like everything was ok.
The doctor wanted labs...ugh...that meant an iv. And he wanted urine...even bigger UGH...a catheter. We're really hesitant about the whole catheter thing, so I bribed the nurse into putting a clean catch bag on him instead. She totally understood our worry about the catheter and was easy going about the bag method. While all this iv/catheter stuff was going on, I was discussing the situation with the nurse. She agreed with the paramedic that it didn't sound like seizures. As well meaning as the 3 of us were...we had not been to medical school.
Awhile later (you know how the ER goes) the head doctor comes in and informs us that Clark will likely be admitted. Um, what? And that he's going to call the pediatric neurologist. Wow. Meanwhile, a pediatric resident (I've noticed that about 90% of residents and young doctors have NO bedside manner, btw. To my friends who are residents & young doctors: This is NOT you. I repeat---NOT You.) comes in and goes over everything I'd already gone over 4x that evening. Check, check, check...her work is done & she disappears to go find her superior, the staff pediatrician.
Enter---the staff pediatrician. (Disclaimer: I am a parent who works very hard on having a great working relationship with all of the doctors & staff we encounter. However, it is now 4am, and I've almost been awake for 24 hours.) She informs me that Clark doesn't meet admission criteria, however, she'd like to admit him for monitoring. Knowing that we had an MRI scheduled in 4 days, I said that I was concerned about Clark having any extra stress between now and then, especially since he hadn't experienced any other episodes. I know that sounds all kind and reasonable, at the time though--I know I sounded like a hard headed medical idiot...thank you 4am. She repeated that she thought it was important for them to be able to monitor him. Ok...time for me to shut up.
Medical transportation arrives avec wheelchair within about 30 minutes. Ok people, at this point, I'm straight-up delirious. I hop on for the ride & away we go. I'm noticing that we're going a weird way to the pedi floor. Once we arrive on the floor, I'm thinking "Ok, where are the cool wall murals and the train tracks (at least I think they're train tracks) on the floor? Why is it so stark? Where are we? The answer: Pedi overflow unit. But Hey! I see a familiar face! One of our old NICU nurses!..(sorry friend, I think your name is Jennifer but my memory went out the door when Clark made his appearance...but I was excited to see you, nonetheless.)
Mr. Transportation wheels us into a closet...ahem...room. And all I see is an office chair-type chair and a metal cage. Out come 3 words I should have learned long ago never to ask. "Are you SERIOUS?" Mr. Transportation asks if I want him to go get another chair. I mumble something along the lines of "no, I really don't think that would help." (But I'm sure it didn't sound that nice.) I was pretty upset about the situation at this point. Good point: We had our own bathroom. There were only 8 beds on the unit. Bad point: everything else. Let me explain something here: The regular peds floor is brand new. It has a bed for the parent. It's not 3'x3'. Our room wasn't, didn't and was.
So, we have to do arrival vitals (ugh, it's 6am) and all that good junk that I had forgotten about. (Yes, even though I did it 100 days at S&W and for several days at Scottish Rite, I forgot.) There are the things you just banish from your mind. Our nurse friend asks if there's anything she can bring us. Yes, blankets and pillows. Looks like Clark gets the cage, I get the floor & Jeramy gets the chair--because I can't sleep upright.
Oh, I might have slept for 20 minutes and I wake up with my shoulder aching from resting on tile. Jeramy is snoring. Typical. Nutrition is here with our breakfast trays. Yippee. (Where is my BED?! & Wait, where am I and what am I doing here???) Ohhhh, but there's coffee. Coffee & the worse breakfast item Scott & White serves--french toast. Do Not Want. Blech. But the good in all of this is that there is bacon. It's 2 slices of limp and soggy, but I don't care..it tastes like bacon. Thankfully, I had about 20 minutes for the coffee to kick in before our next doctor arrives. This is the point where I realize that we are no longer in the NICU, we no longer have Cipi, the Champion...we're going to be seeing a million different doctors.
Enter: Doctor #2 (Doctor #1's 7am replacement). She's short, sweet & things are kind of awkward (I'm sure Doctor #1 told her I was "difficult"), then again...I've been up for 24 hours and I really don't even remember my name right now, only that I need to figure out what's going on with the child in the cage. There are only about 1,000 questions I want to ask this woman. Wait...what? Huh? Sorry, I can't remember what I was just saying...uh huh..yeah...yeah...ok....[the door opens] WHATTTT? HEY!!!! I AM SO GLAD TO SEE YOU!! Stealing the scene: NICU nurse #2, Mrs. Woods. You have no idea, I literally teared up when I saw her. & I said a quick little prayer "Lord, thank you SO much for sending someone to take care of me....um..I mean Clark." Doctor #2 (who I forgot about for a brief time) is a little insulted that I interrupted our conversation to be excited about a nurse. Look lady...THIS is the woman who gave my son his 1st bath. STEP OFF. Lest you think I'm being dramatic, the doctor actually said something like "I guess I'm chopped liver". Well..yeah, kinda. Oh and here's the point of her visit. She's only here for 1 day & she's just here to say hi because, well, because she has no clue what's going on with Clark. Well, um, thanks for reminding me that we're about to see a million doctors who don't know my son. (If you're a parent who's had a sick child, or someone who's been in the hospital frequently, OR just familiar with hospitals in general, you completely understand what I'm saying here.)
Bye, Doctor #2, nice meeting you. Ms. Woods, my ever-vigilant sentinel, was here. Later that day, we all witnessed another "seizure-like episode". We were having quite a bit of difficulty with Clark by now because he wasn't used to sleeping in a cage (hello! his mommy and daddy can't get in there!). Ms. Woods rocked our world and rolled in a regular hospital bed. Thank goodness. The next 2 nights Jeramy and I took shifts in the bed & Clark slept like, well....a baby. Some time on Sunday, they hooked him up to the video EEG to monitor his brain activity and it also was on video for the doctor to view at any time. When he had an episode, we pushed a button to mark it in to video.
Fast forward->->->the next day the neurologist comes to talk to me. She said that he was, in fact, having seizures and that the diagnosis was myoclonic epilepsy. --Insert: heart sink--- Well, the good news is that we knew what was wrong, the bad news is epilepsy (not like I didn't know it was a possibility, what with the SOD & all...still it was a hard pill to swallow). He was put on a medication to control the seizures and, so far, he seems to be responding to it.
He was discharged the day after his diagnosis and had an MRI & genetic testing to confirm the SOD. We have yet to hear back from genetics, but the MRI showed agenesis of the septum pellucidum, confirming the SOD diagnosis. We have yet to actually meet with genetics (were supposed to, but had to reschedule..story to follow) or neurology, we have that appointment in 2 weeks. So I'm anxious to hear what they have to say.
The Saturday after the Tuesday Clark was discharged, he came down with a high fever. Advil helped some, but we couldn't figure out what was going on. So we had an urgent care visit with his pedi (that's why we missed the appointment with genetics) & she said it was likely something viral he'd picked up in the hospital (surprised?? didn't think so.) The day after we saw her, his fever broke and he broke out in a nasty rash. Roseola, we think so.
The other big deal going on is Clark weight. He is in like the .6%...POINT SIXTH, not sixth. And that's on a good day. We met with the gastroenterologist, suffice it to say, he recommended a G button & seemed aggressively in favor of that. We, along with his pediatrician, think that a 2nd opinion is warranted. That's really all I'll say on that. Bottom line: if Clark can gain on his own (which, he has...almost 2lbs in 4 weeks), we are going to give him every opportunity to do that. Shout out to ECI for being awesome and loaning us a baby scale so we can keep track of his weight daily.
So that's the story. It's been crazy around these parts and that's part of the reason I haven't updated lately. The other reason being my brain just hasn't been working & I was saving energy by not updating the blog....hah. Keep us all in your thoughts and prayers, there are days we know that God is surely holding us up, because otherwise it feels like we'd be down. I have to mention that a couple of our dear nurse-friends stopped by to visit while Clark was hospitalized and that meant the world to us. Thanks for loving us :) We sure do love all of you.
--I don't really know what's up with some of the pics being sideways, sorry.--
On April 9th, 3 short days after my last update, Clark started doing something funny. He'd throw his hands in the air with his chin tucked down, squint his eyes and stuck his tongue out. The 1st time this happened, we were shopping for a new vehicle...a van, in fact, so that we can pile everyone in. I didn't see it--Jeramy did--but he saw it looking into the rear view mirror, into the mirror on Clark's seat back. He said "oh...Clark just did something really cute." Apparently, it looked like he was making a funny face and stretching. It happened again that day, I still didn't see it. My grandparents were keeping Clark and I was running errands. Later that evening, I definitely saw it, and I immediately knew something was wrong. Not only did he do it again, he did it 5 times in a row. I went to pick him up and tried to be calm--after all, he wasn't upset and seemed ok afterward. My grandmother looked at me & I said "I think he's having seizures." Jeramy was at work, so he received a call from me telling him to get there quick, because I was pretty sure something was wrong.
He showed up in about 2 seconds...as Jeramy is known to do in situations that might be emergencies. We decided that I should call the nurses line at Scott & White. Because as scary as the thing was--it didn't seem to effect Clark. The nurse asked me a lot of questions and at the end she said "according to what you're saying the most reasonable thing you could do is call 911." My jaw dropped and I asked her "Really? It doesn't seem that serious, couldn't we just drive him?" She said "We can't tell you what you should do, but based on what you've said, 911 would be the most reasonable option." So I was pretty stunned & even more scared then. We drove up to our house, packed Clark's bag and called 911. So far, so good..no other episodes of whatever was happening to him.
The ambulance arrived and asked their questions, I explained what was happening and got "Well, it doesn't really sound like a seizure to me...but if it was my kid, I'd take them to the ER, too." After a long (hah...20 or so minutes) backwards ambulance ride, with the wind blowing 90 miles an hour, we arrived at the Scott & White emergency room. See, the cool part about arriving in an ambulance is that you get right in to a room with a nurse and then shortly a doctor. Looking back, it was serious business, even though at the time, it felt like everything was ok.
The doctor wanted labs...ugh...that meant an iv. And he wanted urine...even bigger UGH...a catheter. We're really hesitant about the whole catheter thing, so I bribed the nurse into putting a clean catch bag on him instead. She totally understood our worry about the catheter and was easy going about the bag method. While all this iv/catheter stuff was going on, I was discussing the situation with the nurse. She agreed with the paramedic that it didn't sound like seizures. As well meaning as the 3 of us were...we had not been to medical school.
Awhile later (you know how the ER goes) the head doctor comes in and informs us that Clark will likely be admitted. Um, what? And that he's going to call the pediatric neurologist. Wow. Meanwhile, a pediatric resident (I've noticed that about 90% of residents and young doctors have NO bedside manner, btw. To my friends who are residents & young doctors: This is NOT you. I repeat---NOT You.) comes in and goes over everything I'd already gone over 4x that evening. Check, check, check...her work is done & she disappears to go find her superior, the staff pediatrician.
Enter---the staff pediatrician. (Disclaimer: I am a parent who works very hard on having a great working relationship with all of the doctors & staff we encounter. However, it is now 4am, and I've almost been awake for 24 hours.) She informs me that Clark doesn't meet admission criteria, however, she'd like to admit him for monitoring. Knowing that we had an MRI scheduled in 4 days, I said that I was concerned about Clark having any extra stress between now and then, especially since he hadn't experienced any other episodes. I know that sounds all kind and reasonable, at the time though--I know I sounded like a hard headed medical idiot...thank you 4am. She repeated that she thought it was important for them to be able to monitor him. Ok...time for me to shut up.
Medical transportation arrives avec wheelchair within about 30 minutes. Ok people, at this point, I'm straight-up delirious. I hop on for the ride & away we go. I'm noticing that we're going a weird way to the pedi floor. Once we arrive on the floor, I'm thinking "Ok, where are the cool wall murals and the train tracks (at least I think they're train tracks) on the floor? Why is it so stark? Where are we? The answer: Pedi overflow unit. But Hey! I see a familiar face! One of our old NICU nurses!..(sorry friend, I think your name is Jennifer but my memory went out the door when Clark made his appearance...but I was excited to see you, nonetheless.)
Mr. Transportation wheels us into a closet...ahem...room. And all I see is an office chair-type chair and a metal cage. Out come 3 words I should have learned long ago never to ask. "Are you SERIOUS?" Mr. Transportation asks if I want him to go get another chair. I mumble something along the lines of "no, I really don't think that would help." (But I'm sure it didn't sound that nice.) I was pretty upset about the situation at this point. Good point: We had our own bathroom. There were only 8 beds on the unit. Bad point: everything else. Let me explain something here: The regular peds floor is brand new. It has a bed for the parent. It's not 3'x3'. Our room wasn't, didn't and was.
So, we have to do arrival vitals (ugh, it's 6am) and all that good junk that I had forgotten about. (Yes, even though I did it 100 days at S&W and for several days at Scottish Rite, I forgot.) There are the things you just banish from your mind. Our nurse friend asks if there's anything she can bring us. Yes, blankets and pillows. Looks like Clark gets the cage, I get the floor & Jeramy gets the chair--because I can't sleep upright.
Oh, I might have slept for 20 minutes and I wake up with my shoulder aching from resting on tile. Jeramy is snoring. Typical. Nutrition is here with our breakfast trays. Yippee. (Where is my BED?! & Wait, where am I and what am I doing here???) Ohhhh, but there's coffee. Coffee & the worse breakfast item Scott & White serves--french toast. Do Not Want. Blech. But the good in all of this is that there is bacon. It's 2 slices of limp and soggy, but I don't care..it tastes like bacon. Thankfully, I had about 20 minutes for the coffee to kick in before our next doctor arrives. This is the point where I realize that we are no longer in the NICU, we no longer have Cipi, the Champion...we're going to be seeing a million different doctors.
Enter: Doctor #2 (Doctor #1's 7am replacement). She's short, sweet & things are kind of awkward (I'm sure Doctor #1 told her I was "difficult"), then again...I've been up for 24 hours and I really don't even remember my name right now, only that I need to figure out what's going on with the child in the cage. There are only about 1,000 questions I want to ask this woman. Wait...what? Huh? Sorry, I can't remember what I was just saying...uh huh..yeah...yeah...ok....[the door opens] WHATTTT? HEY!!!! I AM SO GLAD TO SEE YOU!! Stealing the scene: NICU nurse #2, Mrs. Woods. You have no idea, I literally teared up when I saw her. & I said a quick little prayer "Lord, thank you SO much for sending someone to take care of me....um..I mean Clark." Doctor #2 (who I forgot about for a brief time) is a little insulted that I interrupted our conversation to be excited about a nurse. Look lady...THIS is the woman who gave my son his 1st bath. STEP OFF. Lest you think I'm being dramatic, the doctor actually said something like "I guess I'm chopped liver". Well..yeah, kinda. Oh and here's the point of her visit. She's only here for 1 day & she's just here to say hi because, well, because she has no clue what's going on with Clark. Well, um, thanks for reminding me that we're about to see a million doctors who don't know my son. (If you're a parent who's had a sick child, or someone who's been in the hospital frequently, OR just familiar with hospitals in general, you completely understand what I'm saying here.)
Bye, Doctor #2, nice meeting you. Ms. Woods, my ever-vigilant sentinel, was here. Later that day, we all witnessed another "seizure-like episode". We were having quite a bit of difficulty with Clark by now because he wasn't used to sleeping in a cage (hello! his mommy and daddy can't get in there!). Ms. Woods rocked our world and rolled in a regular hospital bed. Thank goodness. The next 2 nights Jeramy and I took shifts in the bed & Clark slept like, well....a baby. Some time on Sunday, they hooked him up to the video EEG to monitor his brain activity and it also was on video for the doctor to view at any time. When he had an episode, we pushed a button to mark it in to video.
Fast forward->->->the next day the neurologist comes to talk to me. She said that he was, in fact, having seizures and that the diagnosis was myoclonic epilepsy. --Insert: heart sink--- Well, the good news is that we knew what was wrong, the bad news is epilepsy (not like I didn't know it was a possibility, what with the SOD & all...still it was a hard pill to swallow). He was put on a medication to control the seizures and, so far, he seems to be responding to it.
He was discharged the day after his diagnosis and had an MRI & genetic testing to confirm the SOD. We have yet to hear back from genetics, but the MRI showed agenesis of the septum pellucidum, confirming the SOD diagnosis. We have yet to actually meet with genetics (were supposed to, but had to reschedule..story to follow) or neurology, we have that appointment in 2 weeks. So I'm anxious to hear what they have to say.
The Saturday after the Tuesday Clark was discharged, he came down with a high fever. Advil helped some, but we couldn't figure out what was going on. So we had an urgent care visit with his pedi (that's why we missed the appointment with genetics) & she said it was likely something viral he'd picked up in the hospital (surprised?? didn't think so.) The day after we saw her, his fever broke and he broke out in a nasty rash. Roseola, we think so.
The other big deal going on is Clark weight. He is in like the .6%...POINT SIXTH, not sixth. And that's on a good day. We met with the gastroenterologist, suffice it to say, he recommended a G button & seemed aggressively in favor of that. We, along with his pediatrician, think that a 2nd opinion is warranted. That's really all I'll say on that. Bottom line: if Clark can gain on his own (which, he has...almost 2lbs in 4 weeks), we are going to give him every opportunity to do that. Shout out to ECI for being awesome and loaning us a baby scale so we can keep track of his weight daily.
So that's the story. It's been crazy around these parts and that's part of the reason I haven't updated lately. The other reason being my brain just hasn't been working & I was saving energy by not updating the blog....hah. Keep us all in your thoughts and prayers, there are days we know that God is surely holding us up, because otherwise it feels like we'd be down. I have to mention that a couple of our dear nurse-friends stopped by to visit while Clark was hospitalized and that meant the world to us. Thanks for loving us :) We sure do love all of you.
--I don't really know what's up with some of the pics being sideways, sorry.--
Wednesday, April 6, 2011
Long Overdue Update
Please accept my sincere apologies for the long delay in updates. I have been in a sort of rebellious mood after Clark's cast came off.
And, the cast did, in fact, come off. He did well during the surgery and his recovery has been slow but steady. In less than a month following cast removal, he was sitting up. Just this week he has started crawling and pulling up to stand. I just stare in amazement. He started crawling a year to the date of his NICU discharge.
There are a ton of other things going on with Clark, and I will try my best to make it short and simple. First off, he has had lots of trouble lately not gaining weight. He hasn't gained any weight since October. This is really bad, considering how young he is. He's 14 1/2 months old and can still wear 0-3 month clothing. His doctors are very much in favor of installing a feeding tube. We are not. We have a week left to fatten him up and show them that we can do it. It doesn't help matters at all that he refuses to drink any type of milk. The good news is that he has gained at least 10oz in the past week, the bad news is that we have to park him in his highchair literally all day long and feed him.
Another problem we're facing is his teeth. They're coming in yellow and we've been told it's because of the large doses of antibiotics he received in the NICU. That means that his teeth are fragile and much more susceptible to decay than normal baby teeth. We have an appointment with a dentist within the next couple weeks to figure out a plan of action.
Clark had the flu in February and was very sick for a week. He drank nothing but clear gatorade and pedialyte during that and lost an entire pound. His lungs also suffered and he's now on daily inhalers so he can breathe well. It's likely that his diminished lung function doesn't help his slow weight gain.
His vision is still very bad. We got him glasses, but he would rather play with them than leave them on so they really don't benefit him at all even though he can definitely see better with them on. He has an MRI scheduled for next week so they can look more closely at his optic nerve issue and possibly diagnose a syndrome that is associated with that (he has been given a preliminary diagnosis of DeMorsier syndrome.) Basically DeMorsier would explain his optic nerve hypoplasia. They will also look at his nasal passages and sinuses during the MRI, his pulmonologist suspects that he has some type of deviation in his nasal airway because he can't breathe through his left nostril.
Whew. Well, I think I covered it all. As much as our situation has improved in the last year, things are still pretty stressful in regards to Clark's health. He's really blossomed in the past several months now, he says many words and his first word was "Bible". He has a little Bible and he barely lets go of it and really gets upset if someone takes it away. I hope that's a good sign of things to come. He's a little guy who knows exactly what he wants and will tell someone if things aren't going his way. I feel truly blessed that he is my baby and that we have him here with us.
Please pray for Clark's weight gain and also for his MRI next week, as he will have to be sedated. We appreciate it so much.
And, the cast did, in fact, come off. He did well during the surgery and his recovery has been slow but steady. In less than a month following cast removal, he was sitting up. Just this week he has started crawling and pulling up to stand. I just stare in amazement. He started crawling a year to the date of his NICU discharge.
There are a ton of other things going on with Clark, and I will try my best to make it short and simple. First off, he has had lots of trouble lately not gaining weight. He hasn't gained any weight since October. This is really bad, considering how young he is. He's 14 1/2 months old and can still wear 0-3 month clothing. His doctors are very much in favor of installing a feeding tube. We are not. We have a week left to fatten him up and show them that we can do it. It doesn't help matters at all that he refuses to drink any type of milk. The good news is that he has gained at least 10oz in the past week, the bad news is that we have to park him in his highchair literally all day long and feed him.
Another problem we're facing is his teeth. They're coming in yellow and we've been told it's because of the large doses of antibiotics he received in the NICU. That means that his teeth are fragile and much more susceptible to decay than normal baby teeth. We have an appointment with a dentist within the next couple weeks to figure out a plan of action.
Clark had the flu in February and was very sick for a week. He drank nothing but clear gatorade and pedialyte during that and lost an entire pound. His lungs also suffered and he's now on daily inhalers so he can breathe well. It's likely that his diminished lung function doesn't help his slow weight gain.
His vision is still very bad. We got him glasses, but he would rather play with them than leave them on so they really don't benefit him at all even though he can definitely see better with them on. He has an MRI scheduled for next week so they can look more closely at his optic nerve issue and possibly diagnose a syndrome that is associated with that (he has been given a preliminary diagnosis of DeMorsier syndrome.) Basically DeMorsier would explain his optic nerve hypoplasia. They will also look at his nasal passages and sinuses during the MRI, his pulmonologist suspects that he has some type of deviation in his nasal airway because he can't breathe through his left nostril.
Whew. Well, I think I covered it all. As much as our situation has improved in the last year, things are still pretty stressful in regards to Clark's health. He's really blossomed in the past several months now, he says many words and his first word was "Bible". He has a little Bible and he barely lets go of it and really gets upset if someone takes it away. I hope that's a good sign of things to come. He's a little guy who knows exactly what he wants and will tell someone if things aren't going his way. I feel truly blessed that he is my baby and that we have him here with us.
Please pray for Clark's weight gain and also for his MRI next week, as he will have to be sedated. We appreciate it so much.
Sunday, January 16, 2011
On the road again
We're headed to Dallas today. We'll be staying at the RMH tonight (love them!) Tomorrow is the surgery and you'll never guess what....I'm nervous (heh.)
Please remember us tomorrow morning and pray for Clark and the surgical team that everything can go just right and he comes out a happy, cast-free little 1 year old! Your prayers mean more to us than you'll EVER know!
I'll post updates via Facebook tomorrow: http://www.facebook.com/#!/abrandyisforever
Please remember us tomorrow morning and pray for Clark and the surgical team that everything can go just right and he comes out a happy, cast-free little 1 year old! Your prayers mean more to us than you'll EVER know!
I'll post updates via Facebook tomorrow: http://www.facebook.com/#!/abrandyisforever
Monday, January 10, 2011
The end is in sight.
Well, we're (hopefully) in the final stretch. Today marks one week until Clark's next day surgery. I'm nervous, of course. BUT I'm also very excited. He should be cast-free, and I can't wait.
Next Monday is also his birthday. I have no idea how we'll be able to celebrate and do recovery, but I know that we'll at least be shooting fireworks as part of the celebration. Provided the surgery goes well, we hope to shoot the fireworks at 9 that evening. If you're near us, check out the sky towards our place then. If not, I'm hoping to get some pictures.
The plan is to go up to Dallas next Sunday, stay the evening at the RMH & then be up bright and early at Scottish Rite. Please pray for us. I'm afraid I'll be a nervous wreck this time, just based off of how last time went. With lots of chiropractic therapy, Clark is finally back to normal and not throwing up all the time.
Also, pray for Clark's safety and that his hip is looking just right so that we don't have to get another cast. We've been told it's a possibility and the idea of that is simply exhausting, but we'll do whatever it takes to make sure everything is squared away.
Thanks, everyone for the concern you've shown and all of your prayers. We couldn't do it without you!
Next Monday is also his birthday. I have no idea how we'll be able to celebrate and do recovery, but I know that we'll at least be shooting fireworks as part of the celebration. Provided the surgery goes well, we hope to shoot the fireworks at 9 that evening. If you're near us, check out the sky towards our place then. If not, I'm hoping to get some pictures.
The plan is to go up to Dallas next Sunday, stay the evening at the RMH & then be up bright and early at Scottish Rite. Please pray for us. I'm afraid I'll be a nervous wreck this time, just based off of how last time went. With lots of chiropractic therapy, Clark is finally back to normal and not throwing up all the time.
Also, pray for Clark's safety and that his hip is looking just right so that we don't have to get another cast. We've been told it's a possibility and the idea of that is simply exhausting, but we'll do whatever it takes to make sure everything is squared away.
Thanks, everyone for the concern you've shown and all of your prayers. We couldn't do it without you!
Subscribe to:
Posts (Atom)