Thursday, April 25, 2013

Pediatric Surgeon Consult

We met with Dr. Lam this morning, and our prayers have been answered!  He was very excited to see Ryan because I reminded him that he placed the penrose drain in his abdomen when he was only 8 days old and only about 1 pound, and he remembered!  He even asked if I was the one who was friends with Melisa (Melisa, if you're reading this...did you happen to talk to him yesterday?  I was so impressed he remembered that!).  He was really impressed with how big Ryan is now, and he stayed and talked with us an extra long time and shared some really sad and inspiring preemie stories that reminded us just how lucky we are to have our little guy with us today.  We are so blessed that now Ryan is one of his inspiring stories that he can share with other preemie parents. 

So, here's the best news.  Dr. Lam doesn't want to operate on the abscess!  He said it's not "ripe" enough yet. :)  Basically, it's still small enough and it's so hard and deep that we are just going to continue giving the antibiotic and hope that it "ripens" and eventually comes to the surface and drains on its own.  We are going to give him sitz baths every time he has a bowel movement to encourage it to move to the surface and pop.  I asked if we needed to worry about sepsis or anything like that and he said absolutely not.  Ryan's abscess is really small and he's on antibiotics, so he should be fine.  I also asked if he knew what might have caused this, and he said sometimes if kids get constipated and strain too hard they can cause a little tear in there and then it can get stool inside it and become infected.  A few weeks ago when Ryan started taking a bit more of his solids, his BM patterns changed and he was waiting 3-4 days to go.  It wasn't hard like constipation, but it was definitely spaced out more and he was straining a lot more when he finally did go.  We are going to continue adding pears and now prunes to his diet to help keep things more regular, and we'll just monitor the abscess and go back in a few weeks if it hasn't drained on it's own or gotten better.  It sounds like we caught Ryan's really early, so hopefully the antibiotics will help.

The doctor did warn us that once a baby develops this, there is a chance of recurrence in the same spot.  If that happens, then he might need a quick and easy 5 minute surgery to go in and remove the lining of the tear so that it will seal back up.  He drew a lovely picture and explained it much better than I ever could, but we'll just keep praying that this one heals up nicely and never comes back so I don't have to go into more detail.  Thank you all so much for your thoughts, prayers, and support.  This whole ordeal couldn't have turned out any better!  Well, I guess it would've been better if it never happened, lol, but you know what I mean. :)

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Wednesday, April 24, 2013

Ultrasound Update

Just wanted to post a quick update for those who are checking in on Ryan.  We had the ultrasound on his abscess this afternoon, and the doctor's office called back to let us know that is, in fact, an abscess.  So first thing tomorrow morning we will meet with a pediatric surgeon to find out more about what we need to do to take care of it. 

Here's all the good news, and proof to me that all our prayers are being heard:

1.  The ultrasound experience was totally seamless AND Ryan and I got to visit with one of his primary NICU nurses while we were there :)

2.  When I called the number the pediatrician gave me for a particular surgeon, another pediatric surgeon's office answered and explained that doctor didn't work there, but they had some wonderful pediatric surgeons available.  So, I got their names and did a little research, and it turned out the one surgeon in that office who would be able to see Ryan first thing in the morning is the SAME surgeon who did Ryan's penrose drain placement when he had a bowel perforation when he was only 8 days old in the NICU.  We really liked him and now I'm so excited they gave me the wrong phone number!

3.  Ryan pooped tonight for the first time in 5 days.  You're welcome for that one.

All in all, we're just thankful that Ryan is handling this like a champ (as always).  They gave us things to look for as far as infection, and he hasn't had any of the typical symptoms.  Other than a painful looking hard, red lump on his bottom, he's been his regular happy self! 

I am a bit nervous about having to sedate him, but I know this surgeon has lots of NICU experience and will understand the risks involved and make sure that he's closely monitored if he does end up needing sedation.  Oh, and his eye doctor knows this surgeon well and said if he does sedate him to give him a call because he'll come over and check the pressures in his eyes since it's something that *should* be done, but he couldn't justify sedating a kid like Ryan for something like that on its own.  So that's more good news!  You all know how much I love to get as much done as possible if they have to sedate him.  I'm actually planning on bringing the ENT's MRI order along with me tomorrow to see if they can just knock that all out in one sitting if they do end up sedating him.  Then we can get the ball rolling on his cochlear implants. :)

Thanks for the continued love and prayers.  Keep them coming as we get through this little bump in the road!

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Tuesday, April 23, 2013

Little Guy Needs Some Extra Prayers...

So, I know I'm not the best about updating when things are positive and going well.  I need to be better about that.  The honest truth is that when things are going well with Ryan, we take full advantage of it and I typically don't have TIME to post!  So, just so you know, with this blog, no news is almost always good news.  Since both kids are in bed and Dave is out doing something "manly" (he's on his second tool errand for the evening, lol). I'll try to update as much as I can tonight, and I'll start with all the good news.

Ryan's definitely growing big and getting stronger.  As soon as we took him off the eryped, it was like a switch turned off and he finally stopped throwing up.  As in, he hasn't thrown up in all in over a week now.  As in, he was throwing up regularly at least once or twice a day...and it was usually a pretty big puke.  Now, nothing.  It's the craziest thing, but we're totally excited about it.  He is still on prevacid for the reflux, but we'll ask if we can start weaning off it at our next GI appointment. 

He is loving his bouncer and loves putting weight on his legs.  He's no where near supporting his weight yet, but if we hold him or if he's in the bouncer, he will just go to town pushing himself up and down.  He's doing pretty well with his tummy time, too.  Getting a little better about holding his head up and looking around.  One of his new PTs is a bit concerned that he doesn't really put any weight on his arms, so that's going to be one of our goals for PT.  He still arches his back quite a bit, but he's getting better about getting picked up and held without squirming and arching the entire time.  Now I can pick him up and hold him with some support to the back of his head and he'll just hang out and look around.  Every little improvement is a big milestone around here!

His feeding is improving a lot, too.  The GI doctor recommended making meals a social event for him, so we've been putting him in his high chair with us at dinner.  He used to be getting his feeding pump feeds at that time, so he'd be down low in his seat while we ate.  Now he sits with us and I give him a few options of things he can eat along with us.  He's actually started devouring his mum mum crackers, which is HUGE!  The other night he ate one whole mum mum, 2 yogurt melts, and like 4 bites of pureed baked pears.  It may not sound like much, but for him it was a feast!  And pair that with the fact that he's not gagging/throwing up, and we have conquered some huge feats around here!  Hopefully, as we continue to work with the feeding therapists (plus we have myself, my mom, and the home nurse giving him tastes/meals of solids) we will slowly increase his caloric intake with the solids so that these meals will be considered "nutritive" and we can start talking about taking out the g-tube.  I think that's still a pretty far stretch from where we are now, but we are definitely moving the right direction!

Here's where we need some extra prayers for Ryan.  He has developed what appears to be an abscess on his bottom.  The pediatrician looked at it today and feels like it may need to be lanced by a pediatric surgeon.  She started him on an antibiotic tonight, and I am taking him in tomorrow afternoon (squeezed in between physical therapy, feeding therapy, a braille institute visit and an ophthalmologist appointment...YIKES!) for an ultrasound at CHOC so they can see what's causing the lump/redness.  Let's pray that this turns out to be nothing and clears up on it's own so he doesn't have to get it lanced.  I can't even imagine how painful that must be, and this poor boy deserves a break!

Last bit of fun news (so I can end with something positive), since flu season is over we are cautiously starting to bring Ryan out into the real world...FINALLY!  He's been having so much fun meeting all of his friends who have been praying for him from afar as we waiting for the worst of the flu germs to pass.  He got to participate in his first "Great Cloth Diaper Change" event, taking over for Dani who served her time the past 2 years. ;)  We all got to go with Daddy to watch a UFC fight at the B family's house.  He had his first trip to Disneyland last weekend (even though he was only there about 30 minutes and he was only out of the ergo for about 10 of that, and we actually only went into California Adventure, LOL!) and he got to see his friends, Courtney and Angelo, again plus meet his long distance buddies, Emma and Pat!  Then we had brunch with his Alpha Phi aunties. :)  He was such a good boy and didn't even bat an eye at all the changes in scenery!  All these outings are perfect practice for his big March for Babies walk this weekend.  Speaking of which, we'd like to give a HUGE thank you to all of you who have donated to Ryan's team.  We truly appreciate it and are thankful that Ryan can help other babies born too soon in whatever way possible.

The Great Cloth Diaper Change at Rosie Posie Baby

Breaking world records is tiring work!

Hanging out watching the fight with the guys (and girls!)

First trip to California Adventure!

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Monday, April 15, 2013

Discharge and Follow Up

Sorry I haven't updated other than on Facebook to let everyone know Ryan got discharged on Thursday morning!  It was such a silly ordeal, I don't even want to get into all the boring details of how they weren't going to let him go until he was back to his baseline feeds and not throwing up, even though his baseline is to throw up 1-2 times a day even when he doesn't have a stomach bug.  I'll just say that by the time I got there at 9am, I had already talked to the NP on the phone, and he already knew I would be paging him as soon as I got there and that we would be working on discharge paperwork.  Which is exactly what happened.  And lo and behold, Ryan has been great since he's been home.  Yes, he has thrown up  a little bit here and there, but I can tell this is extremely different from what he was doing last Saturday, and he's keeping his feeds down fine now, so there's no reason to be concerned.

In other news, he's changing and growing by leaps and bounds!  Last night I watched him sleep while I was getting his last feed set up, and I made Dave come look at his face because I couldn't believe how much he is starting to look like his daddy!  And then two different people made comments today that they think he looks so much like Dave.  It's amazing and crazy at the same time because our little baby is turning into a little boy!

He's loving his bouncy seat lately.  He still has a hard time holding his head upright, but he does it for short periods, and even when he's leaning to the side he still goes to town working those legs and bouncing like a mad man.  He can really get himself going in there now.  He's starting to roll onto his side more and more and when he plays on his mat he scoots himself all around in a circle to reach for his various toys.  He also made a huge feeding breakthrough tonight when I gave him a mum mum cracker while we were all sitting at the table eating dinner, and he put it right into his mouth and just started gnawing all over it!  Hopefully this teething will be the motivation he needs to really start loving putting food in his mouth!  His first tooth started coming in on March 17th, and then we noticed the second tooth popping through a few days ago.

Since he's been home we had an eye appointment on Friday with his contact lens specialist.  Dave took him to the appointment and asked if we really needed to put in the contacts at this young of an age since they just pop out and get lost constantly anyways, and we feel like he's seeing without them.  She was 100% convinced that they need to be worn daily.  I understand the right eye needing it since the lens in his eye has been removed and he needs the contact to help that eye focus.  But I don't understand the left eye.  We even took him to a local optometrist for a quick exam and second opinion and he felt like the left eye was just slightly nearsighted and probably didn't need to be corrected yet.  But our ophthalmologist is still insisting he should wear both.  Well.  God has made the decision for us because the very next day we put both in and guess which one popped out and has never been seen again?  Yup.  The left one.  So, there you go.  Guess we won't be putting that one in anymore!  At least not for a little while until we can follow up with her and maybe get a different size ordered so at least it won't pop out anymore.

We had a GI follow-up appointment today, but it wasn't with our regular GI doctor.  We'll follow up with him in one month.  The appointment went well.  We adjusted his prevacid dose a bit and cut out the erythromycin.  She changed the prevacid to a more concentrated dosage so he'll just get it once a day instead of twice.  She said it would help spike into his blood better to get one higher dose than two lower doses throughout the day.  I know I must sound like a skeptic when I type, but I'm not so sure the meds are even doing anything.  Today was his best day yet as far as throwing up, and guess what?  He didn't even have ANY prevacid because we ran out last night and when I called today to get it refilled, the new order hadn't been sent in to the pharmacy yet.  So the guy said he would call me back if he hadn't heard from them by 2.  But he never called me back.  So now we're a whole day off it and I'm seriously tempted to go another day without and see if he continues to improve.  ;)

Lastly, I'm excited to share that a new home nurse started with us today and she is AH-MAZE-ING!  First day on the job and I am so completely impressed and thankful for her dedication, professionalism and that just all around good vibe she gives off.  So blessed that she is going to be helping us take care of Ryan, and I know he's going to benefit from even more loving care!  My mom has been so wonderful taking care of both Dani and Ryan on the days that I've been working, and it's such a relief to know she's going to have some good help again.  Truly counting our blessings tonight.

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Wednesday, April 10, 2013

Late Night Update.

I was holding off on updating as long as possible in the hopes that things might change, but alas, Ryan and Dave will be spending another night at CHOC.  They started him back on his formula today at a continuous drip of 40mls and he did ok, but he did throw up.  They know that his "normal" is to throw up 1-2 times a day even on a good day, so they weren't too concerned.  Then they decided to stop the continuous feed and try him with 50mls an hour after they stopped the continuous stuff.  He had a pretty big vomit right after they started that, so they stopped it and put him back on pedialyte only.  They are giving him a feed of 50mls right now as I type because he's had a few hours off formula, and he's tolerating it fine, so that's good news.  Hopefully he will keep that up and they can get him discharged tomorrow!  I'll be heading over there in the morning to take over for the day.

On the bright side of him being stuck in the hospital, he got to see one of the GI doctors who remembered him from his NICU stay.  Dr. Lebel was one of the doctors who inserted his peg (g-tube) right before discharge in October and she was so impressed with how much he's grown.  She adjusted his prevacid dose for his weight, and she said we could stop giving the erythromycin since it's the type of drug that either works or doesn't and you would be able to tell if it was working.  Since he still throws up pretty regularly, it's obviously not working so there's no sense in taking it.  Also, she got us an appointment to see her in her office on Monday so we can reevaluate everything with his feeding schedules and meds to make sure we're optimizing everything we can to keep him from throwing up daily.  Hopefully we can get to the bottom of everything with her!

Thank you for praying with us that he will come home soon.  I know, as frustrating as it is to have him stuck in there, it happens for a reason.  I think the reason this time is that we needed to be seen by Dr. Lebel, so I'm thankful for that opportunity.  I hope it leads to greater health and healing for Ryan!

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Tuesday, April 9, 2013

Long Overdue Update...

...and this probably isn't what you're expecting or wanting to hear, but Ryan's back at CHOC for tonight.  It's such a random story, and since Dani is sleeping and I have a moment, I'll type it out.  Before I begin, I just want to explain that I haven't had the chance to update lately because we had a wonderful visit from Dave's sister and his family last week, and then this week is our Spring Break so we've been keeping busy doing fun little outings and quality family time.  I have tons to update on Ryan in general along with lots of picture to share from our escapades the past 1.5 weeks or so, but tonight I'll stick to what's going on today and if I'm up for it I'll do a catch up post right after.

So, here's what happened.  Last week we had our monthly pulmonary appointment/synagis shot.  During that check up I mentioned that Ryan was coughing more and acting more congested.  Dave had been sick a few days before, so we figured he caught that.  She said he did sound a bit crackly, but she didn't think RSV because the crackles were localized in his upper left lung and RSV would sound bad throughout.  His sats were fine and everything else seemed fine, so she gave us some little things we could keep doing at home and asked us to come in this week if he wasn't doing better.  It actually turned out that we had originally had that appointment scheduled for today, but when we rescheduled for last week they never cancelled this one, so she had us keep in on the books in case we needed to come back in.

Well, today came, and while he does sound a bit better as far as his congestion, he still does have that cough, and on top of that, he's been throwing up since Saturday.  Dani and Dave both had that nasty 24 hour stomach bug in the last 2 weeks, so we figured he got that because he was throwing up more than his usual reflux.  So, we figured we'd go to this appointment even though it was pulmonary because we talked to GI and they didn't have any openings until 2 weeks from now.  And it was one of those weird moments where all morning I remembered he had the appointment, then all of a sudden I looked at the clock and it was 1:48 and we had to be in Newport Beach by 2:15!  Dani was napping, but at that moment a loud truck revved by our house and woke her up.  So I have a frantically crying 2 year old, my son who has hardly kept any of his fluids down and needs to be dressed, and my husband and myself rushing around trying to grab everything we'll need for the appointment.  So, we get both kids in the car, Dani gets to watch a DVD to try to calm her down, and all of a sudden the breadmaker that I'm borrowing from my mom beeps because the dough is ready to be taken out to rise.  I completely forgot, and I can't just leave it there.  So I grab it and throw it on a cookie sheet and leave it in the back of the car hoping it will get hot enough in the car to get it to rise.  Thank God I did that rather than putting it in the oven because I had enough to worry about just leaving the crock pot dinner going!

We get to the appointment and we're actually only like 5 minutes late.  She checked him over and said his lungs actually sounded clearer, but she was concerned about him being dehydrated.  He had only had 2 wet diapers out of 4 so far that day, and they are typically all wet.  He was laying on me half asleep, his fontanelle was a bit sunken and it's usually bulging, and he had this strange rash popping up on his back...almost like a heat rash.  Oh, and his cheeks got super red.  It was like he was putting on a show for her because I swear when we were at home he was acting totally happy and fine other than not keeping his fluids down.  She felt like he should get to CHOC for some IV fluids and monitoring, so she called over for them to get a bed ready for him.

So Dave, Dani, Ryan and I, plus the rising loaf of bread, head over to CHOC.  We all went in (hooray for lifting the parents only restrictions...another sign this evil flu season is finally ending) and got him checked in.  Dave is staying the night with him (poor guy only has what he had on his back) and I brought Dani home to try to salvage our crock pot dinner that had been cooking for 11 hours and bake the bread that had been "rising" (more like hardening) in the back of my car for over 4 hours.  We're just thankful that the timing is perfect because we're on Spring Break and everything is handled and taken care of now.  We all have food in our bellies, Ryan has fluids in his body, and hopefully this will be the last little push he needs to get back on his feet again. 

Please pray that we can bring him home first thing in the morning.  We don't need this to turn into an extended stay by any means!  He's a fighter, and I know he'll do his part to get himself ready for check out.  Thank you all for your constant love and support, I will try to keep you updated as things progress at CHOC. 

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