Thursday, September 16, 2010

On the Mend...

I'll say it again as I have several times with this journey with Judah, what a difference a week makes! These top pictures are of Judah the day we were released from the hospital...still looking a little, well, little.
The picture below was taken just one week after our hospital stay. The difference is so amazing! There's my full cheeked boy with a little bit of neck fat that I love to kiss! We went in on Monday for a weight check and follow up appointment and guess what? Judah has already gained back the 1 lb and 4 oz. he lost! He is officially comfortably back on the growth chart (in the 5th %--I'll take what I can get) and seems to be doing GREAT. The pediatrician (have I mentioned that I LOVE her?) said that she was absolutely thrilled with how Judah looked and was very happy with his progress. Me too. I knew he'd gotten bigger, but I didn't imagine a whole pound +.
He pulled his tube out on Wednesday at about 3:30 am. We removed the tape and left it out for a full 24 hours to give him a rest and to let Owen and I get a full nights sleep. We replaced it this evening without incident--even easier at home than in the hospital. He was bothered for about 5 minutes and was back to his normal helped that Grandma was here!
Lots of people have been asking the same questions so I thought I'd answer them in one place.

1. Does he eat through the tube exclusively?

No! We feed Judah "normally" all his bottles of thickened liquids as well as offering finger foods at all our meals & snacks. He is only fed through the tube at night time. He does a 16 oz. drip over an 8 hour period 9pm-5 am.

2. Isn't 16 oz. a lot for him to take?

Yes...that's the idea. Since the majority of Judah's calories are from liquids at this point, he needs high calorie liquids, unfortunately since he has to have his liquids thickened, he can take in the volume of the high calorie foods like he needs inorder to gain or maintain his weight. So even though he's drinking about 24 oz of "liquids" that's really only 16 oz of caloric liquid. That really sets him back! And because his volume is so high, he often times isn't hungry for the solid foods like a lot of kids are. The NG tube allows us to give him straight calorie dense food w/o thickening which clearly has helped him gain weight.

3. How long will you be doing this?

We are committed to keeping the tube in full time (changing it if it gets pulled out or every 10 days) until October 1. We will remove the tube and give him a "rest" for 5 days and then on the 5th of October we have his second swallow study. Depending on the results of that study, we will leave the tube out (hopefully) and move forward with less thickened foods and begin anew on the solid food in take.

4. Has it been easier for you?

YES! I cannot express how much stress has been relieved from my shoulders since the tube has been in. Yes there's a little bit of maintenance on the tube, but it's not nearly as time consuming as counting his ounces and calories all day long. I didn't realize how much time I was spending at each meal...LOTS OF TIME. Not to mention the constant worry and second guessing about what he'd eaten. Amazing, my kids are now more regularly dressed before 9 am and have their hair done, my house is cleaner and I have a little more energy (I say a little b/c baby #3 is still sapping me dry!).

5. What is the biggest difference for Judah?

Judah has been sleeping signficiantly more. He's sleeping until about 7 in the morning as opposed to 5 am, he's taking a full 1 hour morning nap and usually at least 2 1/2 hour nap in the afternoon. It's so different than before...which again, just confirms that he was barely getting what he needed. Miss Clara happens to be sleeping more too since her baby brother isn't waking her up anymore! THANK GOD!

Five, Five and Under

We celebrated Olivia's 5th birthday on Tuesday evening with the whole family...can I just say that I cannot believe that it's been FIVE years since Olivia was born and that it kind of makes me feel old that I have a niece that's five? This was a pretty special picture since all five of the kids were looking at the camera. Lila, I believe was looking in her best future modle pose! So like her mommy. From L-R it's Lila, Corey, Clara, Olivia and Judah. Happy birthday sweet girl!
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Wednesday, September 8, 2010

We're home!

We're home. We have an NG tube. We are relieved parents. This will be a long update. I kind of want to write this chapter and then move on
First and foremost, thank you to each one of you who have offered to help, have prayed for us and called with your concern. We needed your support!
A special thank you to Tom and Joy for taking such good care of Clara while we went through this. God is so good to us.
So after our experience on Saturday in the ER we went home with Judah--although I had mentioned several times to the nurse prior to discharge that I did not feel comfortable going home based on how he was acting. Judah was still lethargic and dosile. They gave us the default ER answer "it's a virus" give it 7-10 days and he'll be fine. Since he didn't have a bowel movement when we were at the ER we were at a loss as far as a culture. I knew that we didn't have 7-10 days either.

Saturday he slept all day and went to sleep and stayed asleep on and off from the time we got home throughout the night. He did have some diarrhea through the night and then seemed to perk up on Sunday morning. We woke up, did our morning routine and even went to run a few errands. Clara had been picked up by her grandparents on Saturday morning and we were expecting her to return just after nap time.
We laid Judah down and gave him a bottle but--at this point he had complete refusal to eat. At 1:30 he woke up and cried and cried and cried. He started having diarrhea again, and continued every 45 minutes until about 10:30 that night. At about 5ish he vomited--projectile--all over me & our rug. I e-mailed the pediatrician and told her again what was going on and she recommended that we go back to the hospital, but this time we would be a direct admission. Thank God.

He continued to cry and moan and have diarrhea until we actually got into the room etc. Thankfully for that first night we did not have a roommate. Around 10 pm he had to get an IV, we requested the IV team based on our experience the previous day knowing tha this veins weren't in good shape. Even the IV team had to place it twice--I had to leave the room again. So not fun.

He cried on and off throughout the night and received IV benedryl to help him calm down, and that didn't really make a huge difference until about 3 am. What a long night. Lots of crying, holding and shushing. At 6 am we were woken for vitals and then the stream of doctors. Thankfully we had a culture taken right when we arrived at the hospital and had the results first thing. C. Dif was the diagnosis. Don't ask me what that stands for--all I know is it's a horrible bacterial infection. Antibiotics were started immediately and the IV fluids kept coming. On Monday morning they started him on Dextros which is the sugar solution and by mid day he started urinating again.

We are so thankful to have a children's hospital here in Phoenix. We knew that he was getting the most complete and thurough care that he possibly could. It was difficult however since we had to share our story a million times to get all the residents, nurses and attendings, specialists, nutricionists etc. on the same page. Oh to be able to get everyone in the same room. I know it wasn't possible though!

Monday was a long day because Judah felt horrible and we were isolated--but he was cranky and scared. I knew we were in the right place and I knew that Owen and I had a decision to make about the NG tube. We had been debating back and forth since he was diagnosed with Silent Aspiration and kept avoiding the tube. At his 15 month check up though his weight gain slowed significantly--he stayed on his curve but just barely. With this illness he'd already lost about 1 lb and his hydration levels were obviously dangerously low. We decided that we'd most likely be leaving the hospital with an NG tube because we didn't want to be back in this same position in just a few weeks and with cold and flu season coming up we didn't know how he'd be tolerating any other illnesses. Usually with both our kids, no matter the illness, eating is the first thing to go and Judah can't afford that. So after lots of talking about our situation with our doctors and finally the major support and go ahead from our pediatrician and our family members we decided for sure to go for it. Another major factor that played into this decision for me personally is that I am feeding this kid all the time. It is normally a battle, always stressful for me. I am constantly counting ounces and calories and just hoping each day that it's enough. The stress had me "at my whits end" about 2 weeks ago and I had this huge desire to stop trying and stop caring. I didn't--of course--but that's how I felt. And lets face it. I have a two year old, I am 15 weeks pregnant and I am a busy mom! Hours of being consumed with his eating was not serving anyone at this point! We agonized and agonized over making this decision, but at this point it's whats best for Judah. Hopefully this will be a very quick solution to his poor weight gain and continue to aid in helping him re-learn how to properly swallow w/out aspirating.

On Tuesday we had a long day of meetings with doctors & nurses to get all of the information about the NG tube and then also with the home health company to get supplies and also a case manager to help us figure out what the costs etc. would be (YIKES). One of the best parts about Tuesday is that my sister came by to pick up my house key and she and two close friends cleaned our house top to bottom. It was fuming when I got home later that night, but that's what needed to happen to kill the C. Dif.

We planned to "drop the tube" as they say at 6 pm on Tuesday night. We practiced on a doll so that we knew how to do it. We decided that in order to expidite us getting out of the hospital that I would drop the tube the first time in front of the nurse so that we could go home sooner. I surprised even myself and did it perfectly the first time! Judah of course did not like it and cried hysterically during the proceedure and was fussy for 15-20 minutes afterwards, but quickly calmed down and drank.his.whole.darn.bottle. and went to sleep. Go figure!
Owen stayed the night again and was trained on how to use the pump that gets the food to him in the middle of the night and I went home and slept. Judah did great and didn't wake until 7 am. We had a few more meetings and then we were out of there!
There are a lot more details, but of course, it's hard to contain everything--especially when I am so tired and I can hardly keep the days straight as they happened. I have a couple of amazing moments that I'll share about in another post.

Sunday, September 5, 2010

Little Mister--with pics

Our little mister is getting to be a littler little mister. It's been a really long 4 days. I've known since about Tuesday/Wednesday that Judah wasn't doing well. He had been completely refusing to eat any solids and then was slowly decreasing his pediasure intake. He absolutely has to take at least 36 oz a day to maintain his weight & hydration due to the thickner he's on--so even though it sounds like a lot, he's really only getting about 15-18 oz of caloric intake. On Wed. afternoon he started having more frequent diarrhea and then on Thursday he went 7x...on Friday AM I picked him up out of his crib and he was covered in diarrhea as well as his bed, blankets, and me! YUK! After I called my bestie and cried my eyes out because of concern, I took him in for a weight check and he'd lost 7 oz. I just started crying again and the nurses went in search of Judah's Pediatrician. The weight loss is not good for him and our goal to avoid the NG tube. I was able to see my pediatrician (w/o and appointment and she wasn't even supposed to be there--God is so good). She recomended we re-check him on Wednesday and take him to the ER if anything changed over the weekend. We also did a stool sample (results to come on Tues.--so much fun). I have tried my best to get all my tears out in one day so that when the time came, I can just focus on what needs to be done, being pregnant adds to the amount of tears for sure! Friday his in-take was down to 24 oz and then he threw up a TON in the middle of the night and continued to have diarrhea. This continued this morning, making a very lethargic, pale and skinny looking kid. We decided to skip our trip to Flagstaff and instead we took a trip to the ER. Grandma and Papa were in town (again, God is so good) so Clara gladly went and hung out with them and is in fact still there. We went to Phoenix Children's Hospital and our Pediatrician called ahead to make sure that the attending doc was up to speed with us. When we arrived at the hospital, they did a weight check and he'd lost another 5 oz in just 24 hours...I am so scared about that. Within 10 minutes we were in our room and having the nurses try to get an IV in. It took 3x to get an IV in his veins as his veins were collapsing right after or before the needle was getting in. The vascular team was called in order to successfully get a line. I had to leave the room because he was so upset & my mommy gut was going into overdrive. He got IV fluids, zofran (anti-vomit) and also IV glocose because his blood sugar was very low. Of course he didn't have diarrhea the whole time we were there 10-4 so they weren't able to get a stool culture to see if it's not something more serious.

We're home. We're really tired. Judah slept in my arms all day and has been "up right" for about 45 minutes total on Saturday and has had about 4 oz of liquids. If you know our little mister, that's so not like him. He's more the 5 seconds in your arms and then gone like a lightning bolt after a toy or his sister. He spiked a fever on Saturday after we got home but thankfully it broke during the night.

Please pray that he can eat something today (and through out the long weekend) and perk up a bit. We (along w/ docs) expected him to perk up after IV fluids & sugar on Saturday but he slept for the remainder of the day & night (on and off). Pray for wisdom for Owen and I as we need to make a decision going forward about the NG tube. We've avoided it successfully so far, however, we knew that once the "cold & flu season" came that we may be headed down that path quickly. Because he's already so small & having a hard time maintaining weight, he can't afford to deal with even simple illness like a cold. Crazy that our "completely healthy baby" is having such a hard time.

Judah's had a lot of these types of baths lately because of how much diarreah he's been having. It's amazing that so much can come out of such a little mister! We covet your prayers and support throughout the next 10 days especially.
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