Father's Day 2009

This year brought new meaning to Father's Day for Jeff. Although he truly earned the title 7 years ago for caring and providing for Dylan, this year was different.

Ryan holds Jeff's heartstrings. Jeff shows that he is amazed by Ryan every day. Whether it is a new action or a simple smile - Ryan has his Daddy wrapped around his little finger. Rightfully so. He is such an amazing little boy - who has endured so much this year. Jeff has been there for Ryan every step of the way.

Jeff also continues to be very supportive of Dylan - helping him with school work, fixing his bike or his car - or simply just providing him with guidance in "life".

Jeff is the glue to our family. He is an amazing husband and Father. We celebrated him today by going to lunch at Lucille's BBQ with Jeff's parents.

It was a great time.

CHLA Update - 6/16/09

We've been on a roller-coaster with Ryan for the last 8 days.

In an attempt to heal his rash, we were suggested to administer an enema and introduce flaxseed oil to his diet. Additionally, we were instructed to begin dilations (again). Maybe too much at one time. Last Monday we were sent into a bit of panic:
- Ryan struggled all day in daycare (6/8) and had frequent stools
- His diaper rash went from zero to OH MY GOD (Personally I think it was the effects of the flaxseed oil).
- Jeff was on high alert and full panic when I arrived home which freaked me out - therefore I made a panicked phone call to Ryan's surgeon and things happened very fast.

Tuesday - Ryan's surgeon made a special trip into the office to see Ryan and I. Ryan's surgeon was recommending a temporary colostomy (6-12 mo) but wanted us to get a second opinion from another collegue at CHLA. (By the way.. this was pretty devastating news to me)

Friday - We had an appointment at CHLA for a contrast enema (X-Ray)
Being witness to the X-Ray, Jeff and I both noticed something abnormal about the path of the contrast. Immediately following the procedure, I was making phone calls to get feedback on what we saw.

Weekend - No word from CHLA. Ryan catches a cold. Had to call the pediatrician over the weekend to get medication recommendations. Turns out you can actually give a baby Robitussin. (As long as your doctor says it's okay)

Monday - Got a phone call from the nurse at CHLA. She reported to us that there was an abnormal reading on the report. Not being one who likes to be caught off guard with "news", I made phone calls to the surgeon's office for clarification. He confirmed that there was part of the intestine that appeared to be twisted on itself, but that this was NOT a concern. However, the report (in his mind) was missing the one thing he would have wanted it to say: Was there (or was there not) a narrowing? He wouldn't have access to the actual film until Tuesday.

Tuesday (today) - We were seen by "the collegue". After reviewing the X-Ray/report and doing an exam, his recommendation was NOT that of Ryan's surgeon. Instead he want's us to stay the course (less the flaxseed oil). In his opinion, everything Ryan is experiencing is "normal" post-surgery and the X-Rays showed nothing of concern.

Anyone who has ever been seen at CHLA knows that things NEVER happen this fast. Phone calls were made and favors were called in to get Ryan seen and treated in an extremely short timeframe. Because of the speed in which things were happening, I was alarmed that something "bad" was on the horizon. Today we were soothed of this fear.

I am so thankful that the right team of doctors are assigned to Ryan. (Thank you GOD for this team). Moving forward, we now know that the expectation for care is another 12 months (or more). It isn't going to be an easy road. There will continue to be days that will seem too hard to handle. I look forward to the day that we look back on all of this as a distant memory.

Love, Positive Thoughts, Prayers.

May Day! May Day!

May has been quite the busy month.

Dylan turned 17. Jeff turned 39.

Jeff worked 2 races this month. I had my first root canal. Ryan had (another) ear infection. My girlfriend Billie had her baby shower. We attended Kent's going away party because he is moving to Saudi Arabia for 2 years. (You know the economy is bad when you have to find work 10,000 miles away)

Ryan is crawling all over the place. He requires a solid eye at all times. With all that consumes our day-to-day agenda, the best moments are when we have the opportunity to hold Ryan without a struggle. Even with our to-do list piling high - Jeff and I both have a hard time putting Ryan down when we can just enjoy him in such an innocent, peaceful moment.

My girlfriend Billie took this picture of Ryan and I at her baby shower. I was running an hour late. Once I arrived, I didn't have a chance to eat, socialize or participate in the games because Ryan was crying. (His ears were bothering him) There was NOTHING I could do to make Ryan happy. Then as everyone was starting to leave - Ryan finally fell asleep. So on Billie's couch we plopped. It was the first chance I had to catch my breath - yet there I sat holding him and enjoying that moment. All the frustration of the previous hour had vanished.

I'm so glad Billie took this picture. I don't ever want to forget these moments.

Has It Really Been Over A Month?

Wow. Where does time go? It's been 41 days since I last did an update. With so much time in between posts I don't even know if I really remember what it is that we've been so busy with. I couldn't even tell you what I did two days ago. But with no one inquiring about where the posts are... I think I may have lost everyone! ARE YOU STILL OUT THERE???

Overall, Ryan is growing very quickly. It seemed that overnight he outgrew his infant seat. Grandma Norton bought Ryan his big boy car seat. He seems to like it. I know I do!




Ryan likes to eat finger foods. It's very difficult these days to get him to eat food from a baby food jar. He much prefers something he can eat on his own. He likes crackers, hot dogs and eggs. I haven't tried much else. Just last night he ate 2 hot dogs and a graham cracker. These days Cole and Parker keep a very close watch on Ryan. Ryan hasn't figured out the "sharing" potential yet - but that doesn't stop Parker from stealing a piece out of his hand every once in a while. ...and Parker's always kind enough to clean the mashed food off of Ryan's hands or cheeks.








Ryan still has his rash. I can't believe it is not yet gone. Just when I think we're close to curing it - - it gets so much worse. Within this last month he ruptured an ear drum. It took just hours for the antibiotic he was given to cause a bum flare-up. Poor guy can't catch a break!

Ryan is crawling all over the floor and babbling up a storm. He really likes peek-a-boo and he seems to like making screaming "ahhhh" sounds. He thinks he's funny. Now that he is getting around good (and FAST), Jeff and I need to comb the house on our hands and knees and baby proof our home. Ryan's already been caught with pieces of Parker-toy in his mouth - and just today he became a little too fascinated with one of the plug outlets in the kitchen.

Dylan finished his indoor soccer session. His team, "Revolution", took 1st place with an undefeated record. Dylan expressed interest in playing the next session. I'm not sure when that is. He seems to be more interested in playing soccer than racing these days.

Jeff has stayed busy. He finished the final touches on our kitchen and he has been spending some weekends working at some of the tracks helping with various drag races.



We recently purchased a flip cam, so moving forward there will probably be a lot more videos to share!

What Does It Take To Cure a "Nappy" Rash?

It's been 61 days since Ryan's surgery. As you all know, the most difficult part of the healing process has been trying to get his diaper "rash" to heal. I'd like to go out on a limb here and say that we've tried it all!!

To start, we haven't been using baby wipes - only water. If we don't have him in the kitchen sink, then we use a hospital supplied squirt bottle. We have 100% cotton diapers that we use to dry his bottom off.

From ointments to powders to fungus medications and burn cream - to cooking staples (corn starch and olive oil) to bag balm (for Cow udders) to Maalox to Australian remedies (Jeff's long-time friend John sent us 3 different things from Australia! I was surprised that you could send diaper rash cream from one country to another) We've had so many people provide us with their miracle cures - all which have failed us.

I am happy to report that Ryan is nearly healed. It was none of the rash or fungal treatments... it was an incontinence treatment - - Ilex Paste - - that was recommended to us by a nurse at CHLA. (This stuff rules - why didn't they give it to us in the first place?!!) We've been using it almost a week now and the rash is almost all gone!

We have quite the supply - the picture only shows a sampling of what we've used... we buy everything in triplicate! We know that in the 2 years Ryan will be in diapers - - we should never have a shortage of diaper creams. (And if you ever need advice - - I'm your go-to gal!)

With all of the sink baths Ryan gets, he is surely the cleanest kid around. Lucky for him (and us) he really does enjoy his bath!

Ryan Eats...And Eats...And Eats

It's hard to believe that just a few weeks ago we introduced Ryan to solid food. I remember thinking then how trying it was to get him to eat off of a spoon. Flash forward to today. Ryan can chow down 2-3 jars of baby food per sitting. Just this week we started giving him graham crackers (thanks "Aunt" Michelle). In 3 short days he has gone from not being able to coordinate the cracker to his mouth to being able to pick up small pieces and hand them off from one hand to the other hand to his mouth. He is even beginning to make chewing motions once the food is in his mouth.

This week Ryan was weighed at 19lbs 1 oz. He's definitely a growing baby!

I imagine now that his two top teeth are coming in, Ryan will be wanting to eat more finger foods.

Sadie's 2009

I didn't quite understand the Sadie's approach. As I remember it, Sadie Hawkins was the unconventional approach where girls would ask the guys to the dance, pay for dinner, dance tickets, etc. You dress up like a bunch of Farmers (overalls, plaid shirts, etc) and you go to the school for the chaperoned dance.

Like most dances I've been witness to over Dylan's high school years. The rules have changed. Asking someone to the dance is quite the ordeal. Dylan told me this year he got asked to Sadie's and showed me a picture on his phone where "Sadies ?" was spelled out, in flower petals - I think, on someones kitchen floor. He accepted. I'm thinking, "Great!" a dance I finally don't have to pay for!



Well, then the plot thickens.

The kids aren't really going to the dance (that's lame). They're going to Knott's Berry Farm. So I argued that they weren't "really" going to Sadie's - so why go through all the the drama? Then it turns out that Dylan is paying his half, the girl is paying her half.. it all just starts to fall apart in my mind from what I ever believed Sadie's to be. Not to mention, the whole farmer theme doesn't even exist anymore. The kids just buy matching T-Shirts (which I guess is better, because who want's to buy a stupid flannel shirt and overalls anyways?)




So long story short... 3 weeks pass and TODAY was the day. 4:30p. Meet at so-in-so's house for photo's and get them all on their way. I was just meeting the kids at the designated home to take some pictures. I arrived - but Dylan was not yet there. So I called him and he let's me know that his date is "Missing in Action". The group was going over to her house (I don't know her name) and was going to see if she was there. As it turns out, his date "forgot" today was Sadie's. Oh, brother. She did eventually show up.




Originally the kids weren't ever going to make an appearance at the school, but I guess they decided that they would go for pictures before heading out to Knott's. Since the park closes at 10p, I can't even imagine that they had more than just a couple hours there. It's all kind of a mess.




Oh the drama of High School. To think that such memories are the ones that we hold on to for the rest of our lives.

Spring Forward

For some reason it just donned on me that it is March. It wasn't until I got the work email reminding me to set the clocks forward tonight that I realized we are 3 months into 2009, Ryan is nearly 7 months old, we've been in our house for 2 years, Dylan is going to be 17 in 2 months.... it all just flies by so quickly. Is it me - or does time go by faster with each passing year?

Just a couple weeks ago, Ryan started sitting with a little assistance - - now he can go a long while balancing on his own. Just last week his two bottom teeth came through. (see photos... below the carrots stuck to his nose are 2 darling little teeth) He rolls over from front to back and back to front. I know it will be any day now he will figure out how to crawl - - and then we're all in trouble!

We think Ryan got Roseola. He ran a high fever (103.3) and then just a couple days later had blotches all over his skin. I didn't even know what it was until after it had passed. Ryan and I both suffered from a cold over the past couple of weeks. I think we're both almost over it.

We almost got Ryan's diaper rash cleared - - and now I swear it's worse than ever. We've tried every diaper cream (Triple Paste is my favorite so far), fungus medication, yeast medication, olive oil.. you name it. His pediatrician is now treating it like a burn. I am applying a prescription burn cream to his bottom to see if it helps. While I've been using it two days now... I think I have seen the most improvement by introducing Corn Starch. I've been on booty duty all day today making sure that he is clean and dry so that he doesn't get any worse. I know that Ryan will be the happiest when it is all clear... but selfishly, I look forward to having a little more freedom. Maybe one of these day's I'll actually get around to some chores around here. For now, not much is getting done with all of the hands-on care and attention.

Dylan joined an indoor soccer league. His first game was today. He's playing Forward on a co-ed team. He's never played soccer before but seems to be doing pretty good. I'm completely lost watching the game because I don't know what the rules are. I'm so used to him playing football, that I somewhat expect for him to take out one of the players. That's something I'm going to have to get used to: Soccer is not a full contact sport. I just hope Dylan remembers that too!
- Dylan's team won.

Back from Unintentional Hiatus

It's been a while since I've updated the Blog. The week at Children's was very overwhelming, we've been busy with Ryan and it's been pretty chaotic at work - so hopping right into updating the blog hasn't been at the top of my list when spare time rolls around. We've spent most of our social time on Facebook, so I'll do a quick update for those who have been wondering where the updates are - but I warn you, there isn't much to talk about these days except for poop...I guess this is what my life has become. (How boring I must be... I really need to get out)

We've been spending most of our time at home since Ryan was discharged from the hospital. Ryan's body is getting used to the new bowel situation. Until Ryan's body gets used to the new "piping" - he will have frequent stooling. Because of this, he has developed an insane diaper rash that has not gone away in a couple of weeks now. The rash been very painful for Ryan. We ONLY rinse his bottom in the sink - never with wipes - to cause as little irritation to the open, bleeding sores on his bottom. (As you can imagine, this is very limiting on our time outside the home) Ryan's doctor assures us that the rash is normal after such a procedure and the situation will continue to improve as the frequency of bowel movements slow.

There were a few days that Ryan would cry each time that he started to stool. He was in so much discomfort - that he would wake up in the middle of a dead sleep. He'd cry and kick his legs until we could get him changed. Sometimes we'd barely get his diaper back on before the next movement. We were changing his diaper up to 30+ times a day just to keep him dry. This was horrible for all of us - but mostly him. He was tired and he was not comfortable. Because of this, I bowed out of Supercross in San Diego on Valentines Day with the family. Jeff and Dylan went ahead and went to the Event - and Ryan and I stayed with the comforts of home. As a precaution, I took Ryan to the ER at Children's to make sure that he was okay. After a couple of X-Rays and an exam by the surgical team, he checked out to be just fine. His symptoms have been better since Saturday. I feel like he may be finally improving!

Now that Ryan has had his surgery, we have been able to to feed him stage 1 foods. So far we've given him rice cereal, bananas and sweet potatoes. He LOVES the sweet potatoes. In addition to the nutritional benefits and the developmental milestone, the food helps to thicken Ryan's stool - which will slow down the frequency of dirty diapers. The doctor also suggested giving Ryan Soy formula to help thicken the stool... Ryan loves it... I think it stinks!! Needless to say, I just bought 2 tubs of it at Costco.

Other events that don't involve poop - -

My company had it's second round of lay-offs in one year. I luckily survived (again). Although I have a job, I have taken on much more responsibility. In addition to working on Ford, I now work on Lincoln-Mercury - and my territory was expanded from just California and Hawaii to the "Western Region" - which picks up Seattle, Portland, Montana, Arizona, Nevada and New Mexico. It's been a learning curve getting up to speed on the Lincoln-Mercury brand and my new markets. I can't complain, though, because I am still employed in this bad economy.

Dylan got his first place trophy for Best of the West. We did not go to the banquet ceremony yesterday - but we are so very proud of his accomplishment. It's kind of sad to think that he doesn't want to race this year. He worked all of last year to ride the Best of the West series - and in addition to his #1 BOTW ranking, he got the #17 plate in his 250cc class.

We've had some uncharacteristic California weather lately. Lots of rain - and it's been very cold (c'mon, we're spoiled... we like our 80 degree weather, that's why we live here). I was actually supposed to be in Pebble Beach today - for a Ford meeting tomorrow morning. My plan was to drive up this morning and come home tomorrow night - but I woke up to news this morning that the Grapevine was closed due to snow - and the 101 (my alternate route) was flagged with flash flood warning for the entire route. After calling my co-workers, it was decided that it just was not worth my making the drive given the inclement weather. The good news with all of this cold weather and rain is that our local mountains get loaded with snow. It makes for such a gorgeous view.

Photos:
Ryan with Family on 2/8
The view of the mountains on my way home 2/13 (pretty snow, ugly holiday traffic)
Ryan and I at Children's on 2/14

Video:
Ryan babbling away in the ER - tries to eat my camera!

CHLA - Day Five (The Final Day)

Besides the midnight feeding of the Pedialyte last night, I didn't do the regular wake-ups to give Ryan the Pedialyte... I was much to tired, and he wasn't complaining.

I came to realize (again) the different levels of involvement from parents. Jeff and I are both very involved and participatory. We make sure that we are constantly attending to Ryan's needs and don't rely on the nurses for all of his care. When his machines are beeping, we know how to silence them and know when to call in a nurse for assistance. The beeping machines can be quite obnoxious when you just leave them alone. (They do not stop beeping on their own).

Our new roommate last night was an infant (3 months old) with a respiratory issue going on. She had accelerated breathing - especially when she would cry. When the mother first got there, I tried to explain to her where the silence button was on the machine and that she could make the machine stop beeping - but would need to call the nurse in (She was not fluent in English, so this was somewhat difficult). I went out to get her nurse. They located her call button and I assumed this would fix the situation. It didn't. Then, the Mom went to sleep and just let her baby cry and the machines go off all night. I had to keep calling her nurses so that I could get on with my rest. As it turns out, the nurses took care of the baby all night - but most of the crying was resolved by feeding the baby.
- Where is that social worker when you need her?
I digress.

Ryan had a very good night. Despite all of the noise, he slept very well. I noticed that he was stirring more in the night - and I got a kick out of his arm hanging out the side of the crib rails in the night. At some point in the night I heard him crying when the nurse was in. I believe she was there checking his vitals but had woke him up in the process. I saw that the nurse was using her flashlight to look all over the place but didn't quite get what she was doing. I realized later (as Ryan was still crying) that she was looking for his pacifier.

During this hospital stay, Ryan has become quite reliant upon his pacifier. It has been very soothing for him and we've noticed that it has been soothing for him around the time he is going to go to sleep. The nurse was concerned that he was having gas pain and it was causing him to cry, but when I had located a pacifier (not the original one he went to sleep with...that one was found later in the morning on the floor) - he quieted as soon as I put it in his mouth and fell right back to sleep. I'm curious how his pacifier will play a role once we return home.

The surgical team made their rounds at about 7a. They said that they would be moving him to oral pain medication and IV and that Ryan could eat as much as he wanted today. If he sustained on his own, he was free to go home today. This sounds too easy, right? The rest of the day just flew by:
- The Pain Management team arrived a couple hours later. They agreed that Ryan looked great and would suspend the continuous Morphine drip.
- Ryan then got a sponge bath - and we removed all that was hooked up to him except the IV needle (just in case they needed to re-connect fluids later) and his catheter.
- Ryan steadily increased his intake of milk
- Orders then came in that he could have his catheter removed and we were told that he would be able to get discharged once he could produce a wet diaper.
- By 4p - we were told that Ryan would be discharged. All was good. He was eating good throughout the day, his body was functioning as it should, he was in little discomfort - and I'm sure that someone was waiting for his bed! ...so the discharge process began.

Thinking that Ryan had a fever, I was struggling with whether or not I should tell the surgeon on the floor about it. I figured that if I said something, we could end up staying another night or two. If I didn't say anything, and he got an infection, we'd just be back in the hospital. I couldn't be selfish. We currently had a bed in the hospital and if we came back, we'd just end up packed into their emergency room. The right thing was to address it while we were already admitted. As it turned out, Ryan was NOT running a temperature (I still think he felt too warm) - but great for us!

We happily said our goodbyes and headed to the hotel to pack up and check out. We arrived home at about 8p.

Hooray.

CHLA - Day 4

After updating the Day 3 blog last night, I went straight to bed. With no set alarm, I slept until almost 9a. I sooooooo needed that sleep. Jeff held down the fort back at CHLA. Overnight, Ryan's blood count improved and the fever that he had when I left had subsided.

When I had arrived to Ryan's room today, I was so excited to see him! He was awake and looking right at me as I walked up to his crib. I had been immediately introduced to a social worker who had just arrived. Her first question: "Was Ryan born vaginal or c-section?" Taken aback... I had to ask her what she could possibly gain by having that information. I was very irritated. Was this more important than a visit with my child? Hoping that the remaining questions were to be quick and RELEVANT... her next was inquiring about who the child lived with and the next was whether or not friends and family members knew we were here at CHLA. After letting her know that just about everyone we knew was aware - I, sarcastically let her know that I had a family blog and could provide her with the website if she so needed. At that point, I think she realized she wasn't going to get much further and then left the room.

Jeff says, "Boy, she caught you at a bad time".

Here's the deal. The social worker had no foundation to have any conversation with me or Jeff. I wasn't going to go down the road of the questions like "what is the highest level of education you have" and "are there other children in the household" or "do you work full time". We have answered these questions in the past and they never do anything with the answers they get from us. They are simply irrelevant. If she would exhaust her energy in finding out when the Surgical team will be making their next rounds - or better yet - when Ryan can eat - she will get a better response from me. Rest assured if there is someone in this hospital who would like to assume that we are not good parents- bring 'em on! They will not win against this Mother Bear.

We had a few visitors today. Pat came by to visit on his way home from a dealer visit. Although he didn't stay long, it sure was nice that he stopped by. My Aunts and Uncles (and Jenni) all came by this evening as well. They got to spend some time with Ryan and we got to have some conversation outside the medical world!

Ryan is becoming more and more alert and he is feeling better with each day. I actually got to hold him today for a little while. I could tell that he was uncomfortable in my arms. I will begin holding him more frequently in the next couple of days as his pain subsides. Ryan also passed some stool today. This is great news because it means he is starting to function again and with this he can begin to take in fluids besides the IV he has been getting. (Remember, he last had fluids on Monday)

Tonight, Ryan gets to start drinking small amounts of Pedialyte. With increased dosages we will watch to see that he is not having any difficulty with intake and will hopefully get to give him milk soon. I'm sure these will be our milestones tomorrow.

CHLA - Day Three

What a long 24 hours.

So.

I stayed my turn in the hospital with Ryan last night (Jeff stayed the night before). I was prepared and brought my pajamas with me so that I could get comfortable in the lousy convertible chair that was in the room. We keep a pillow and blanket in the room for whoever stays each night.

Ryan is in the room with 3 other patients. Ryan slept pretty solid through the night but would wake up in brief moments moaning in discomfort. I was awake for each of those moans but also because one of his alarms was going off, or one of the roommates alarms was going off. Then one patient would make a sound that would trigger noises from one of the other patients in the room. Nurses came in, came out - cleaning crews came in, came out. Holy Moly. One of the poor boys diagonal from where Ryan was had hallucinations in the middle of the night and though he was bleeding to death. He woke up screaming to his dad about "all the blood" - and the Dad, coming out of a dead sleep, didn't quite get what was going on at first... so that was pretty interesting. While I had complete passion for the kids in the room - I was still quite irritated with the level of noise and chaos.

Jeff arrived about 9:30a. Ryan still hadn't been awake since he came out of surgery. There were a couple times earlier this morning that Ryan had opened his eyes - but he wasn't looking "at" me - - he was looking "through" me... so I knew he was still pretty groggy. It wasn't until later in the afternoon when he started to become more alert. He would stay awake for longer periods of time but then just fade back into sleepiness.

We requested a room change and were able to be put into a smaller room but one that only had one other patient. It was nice because the room stayed vacant until about 5:30p. Jeff, Ryan and I had a lot of peace and quiet. We needed that.

Ryan hasn't fussed much at all today. He's pretty comfortable and content. It's been 48 hours since he's had any liquid, 72 since he's had formula - and he's holding out pretty good. He has been playing with some of his toys and allowed me to read a few books to him. He's really quiet. He looks at us, but still won't express any emotion unless he's in pain or agitated.

The morphine has been making his face itchy. He's got some scratches and redness on his face. He gets a dose of Benadryl in his IV every 4 hours to help out with that side affect.

He started running a fever tonight - which is normal after surgery. They collected blood from him and found that he is slightly anemic - which could be a sign of internal bleeding - or just from the medications he's been given through IV. He also had a pinch in his catheter which caused some swelling - so who knows if maybe that wasn't causing the issue. With no blood coming from the rectum or showing up in the urine, it's probably not any internal bleeding (stay positive). They will draw blood from him in the morning to make sure that his blood count hasn't dropped - and we'll go from there.

I'm pooped. I'll be getting my good nights rest in the quiet hotel room tonight and then will head back over in the morning.

CHLA - Day Two - Part Deux

(Continued from Below)

While I did some work, Jeff was able to get in a power nap and a quick shower. We walked over to Hollywood/Highland center for a quick CPK lunch then we took the train back to the hospital. We checked in with the surgery department around 1p. Ryan was not yet out of surgery. We waited in Ryan's room and got the call to come back down around 2p.

When we arrived, they took us into a consult room where we waited for Dr. Sherman. When he came in, he sat down with a smile on his face and said the surgery went well. All in all, it was about a 4 hour procedure.

Ryan had a blockage in his bowel that was somewhere between the size of an orange and grapefruit (WAY bigger then a 5-month old's bowel should be). While not unexpected, the doctor said that he had to decide whether to remove 6 inches of bowel or give Ryan a temporary colostomy. By removing the 6 inches, the surgeon felt he could achieve a 95% clean procedure. He let us know that the 6 inches was not critical to the function of the large intestine. So basically, they went in through the abdomen, located the obstruction, removed the portion of the colon that was affected by blockage and/or stenosis and attached back to healthy intestine.

The thing he was not able to address were the cysts that showed in the MRI. He did locate one, but felt that trying to remove the cyst created a greater risk than leaving it in. I don't remember all of the verbiage... something about risking muscular function.... Anyways - his recommendation was to re-visit in the next year. He did confirm, though, that the cyst was not attached to the sacrum.

The doctor said that Ryan can start eating once as he starts to pass gas and stool....which we found could take a couple of days. We were then taken back to see Ryan. He never woke up for us. After he was stable, he was wheeled back to his room. I think we got up there about 4:00.

Jeff and I waited for Ryan to come to. With a couple hours since passed, we decided to seize an opportunity to run out to get a quick bite to eat at a little Mexican food joint down the street (Los Burritos - It's awesome!). When we got back, Ryan still had not woken up.

Jeff and i just wanted to see our little guy wake up, focus on us and give us his trademark heart-melting smile. Instead, he would wake up, fuss a bit, then go back to sleep. He did wake up one time very agitated. We all guessed he had some pain (how do you know exactly on a 5-month old?). The nurse provided a booster to the continuous drip of morphine he was already receiving - and that seemed to relax him.

Jeff waited until the last possible moment to leave the hospital. He caught the 11:11 train back to the hotel and was able to get this blog drafted (I've since gone in and made some edits... I get particular about my blog!!)

CHLA - Day Two

I got in a few hours of sleep last night and headed over to the hospital at 7a to see how the boys were holding up. I got to Ryan's room just in time for the nurses rounds. Jeff gave me the update from the night:
- Ryan had a complete meltdown after Jeff and I left last night. He was "unconsulable". This is when he pulled the NG out of his nose.
- Regular enemas were given to Ryan throughout the night - but Ryan was a trouper and slept well for most of the night. Dad, on the other hand, slept poorly and is completely wiped out today.

After I arrived, Ryan was able to get the NG permanently removed from his nose. I spent time with him reading, playing with toys and walking him around while Jeff got in about an hour of sleep. Right when I laid Ryan down to sleep, the crew came to bring Ryan down to surgery - 10a.

We had the Chaplain in the room to pray for Ryan. - and then we went down to the surgical floor. I carried Ryan down instead of putting him on the gurney. It wasn't long before they took him back. Ryan, in typical form, was happy, smiling and being flirty. We kissed him goodbye in the hallway and off he went.

Jeff and I came back to the hotel room for some rest. (He's snoring while I type this). We'll head back in about an hour or so to check up on him.

CHLA - Day One

Jeff, Ryan and I checked into our hotel at about 10:30 last night. This was Ryan's second time away from home (the first was in our Motor Home). Ryan did really well. We ALL did very well. We were able to keep Ryan up later than his usual 9p bedtime and get a good last feeding into him.

As of this morning we switched to a clear liquid diet. We've been unsuccessful with Pedialyte feedings in the past, so we came well stocked with Grape, Bubble Gum, Apple and Unflavored varieties. The Unflavored did not go over so well, so we tried the Grape. It was new to Ryan, but he seemed to take a little interest in it - so we stuck with it.

We drove over to Children's and got Ryan admitted. Like the last time we went through this, there was no available bed so - we ventured out into Hollywood to kill time. (We learned our lesson last time and came prepared to explore OUTSIDE the hospital during the long wait.)

First we had had breakfast at a local Denny's restaurant. Then we decided that we would head over to a local Toyota dealership. Jeff and I have long deciding my next vehicle since my Lexus lease is ending soon. We have been holding off on placing my new vehicle order because we really needed to get "in" to the two different trim levels - but we just haven't had the time to do this. Jeff called up the General Manager (Don ...who will never forgive Jeff for a rough hit during a football game in DC. He brings that story up every time we see him...and the tale keeps getting bigger/better every time I hear it). We were given the full tour of my prospective car. It was really nice to have access to the cars side-by-side without the hard-sell. Car seat in, car seat out, seats back, seats forward. In the end, however, I am decided and look forward to my next car "the Ryanmobile".

After a nice visit with Don, we headed over to Hollywood and Highland and walked around for a couple hours. Ryan didn't need a car seat to sit in his stroller. He was sitting up like a big boy!! He really enjoyed taking in all of the sights - and particularly loved the water fountain. I think all of the action really took his mind off the fact that he wasn't eating anything.

We realized that we did not bring a camera with us this week (we only have FIVE at home). We headed over to a near-by Best Buy to pick one up - and while doing so - got the phone call from Children's that a bed was ready. It had been 5 hours.

We kept Ryan entertained for a couple hours in the center - - and by this time he was drinking the Grape Pedialyte willingly, soaking a bib with every feeding (we usually use only 2 bibs a day - I hope we brought enough bibs!). We set his crib up with the comforts of home - hanging his mobile, giving him his familiar toys and keeping him comfy with his blankets. By 7p, he had been set up with his IV, his NG and began his bowel prep.

Ryan fell asleep around 9:30p. Since this was the time I knew Ryan would most likely stay asleep for the remainder of the night, Jeff and I contemplated about who would be staying overnight (Jeff) and we made plans to get me back to the hotel. Jeff and I took the Red Line from the hospital back to our hotel (my first trip on a subway train in LA). It's much cheaper to keep the car at the hospital for overnight parking than to pay the valet at the Marriott. The subway fare is only $1.25 each way. After I was settled in the hotel, Jeff headed back to the hospital to be with Ryan for the night.

As I type this, I've already been getting updates. Ryan pulled the NG out of his nose...and they moved us into another room. I know that there will be much more going on, but I will need to save that update for tomorrow or I'll never get some rest.

Ryan is scheduled for surgery at 7:30a tomorrow. On one hand I am so scared to put him through this procedure. I hope that there are no complications (short or long term) that this angel of a child will have to endure. On the other hand, I am looking forward to having him truly healthy and being able to just enjoy him! Every day for the past 5 months we have been worried about Ryan. Somehow we've kept it all balanced with everything else in our lives.

Tomorrow is the first step towards allowing Ryan to enjoy being the wonderful baby that he is.
Thanks to everyone who has prayed for Ryan. Please keep him in your prayers.

Sorry... no pictures. I'll probably have to post them after we get home.

Moving Forward

With Ryan scheduled to have surgery this week, my Nana was here to help hold down the fort since we were going to be gone all week. Since Ryan's surgery is going to be rescheduled and Jeff and I will be returning to work, Nana will head home.

I'm glad that she got to spend a couple days here with Ryan. She doesn't get to see him very often - only when she signs on the blog for updated photos and stories.

We had the chance to get Ryan into the Pediatrician today. He was given antibiotics, Albuterol (to open the lungs) and Prednisolone (for inflamation). We'll be following up next week to make sure Ryan is again rid of his bronchial issues.

We'll be getting in touch with the surgeon tomorrow about rescheduling the surgery.

Ryan ALMOST Has Surgery

It's been a totally crazy week. After we found out last Tuesday that Ryan did indeed have Rectal Stenosis, Jeff and I spent the remainder of the week finalizing work projects and scheduling surgery at Children's Hospital.

Over the weekend, Ryan started getting a cold. We tried so hard to keep him healthy. We called his surgeon Sunday night to let him know that Ryan had come down with some sort of cold but were given the go-ahead to head to Children's for evaluation. If Ryan was evaluated and deemed in good health, we would be moving forward as planned.

Ryan was scheduled to be admitted today. We were told to arrive by 8a because we would need to wait for an available bed at the hospital. Once we had a bed, then Ryan would need to go through a bowel prep prior to his surgery on Tuesday morning.

Jeff and I arrived at 8a. We waited 5 hours before we were called about a bed becoming available. We hung out in the lobby until lunch and then decided to go on a walk. Of course during this time is when the hospital was looking for us!

After we got Ryan's room assignment (great view, by the way, of Griffith Observatory and the Hollywood sign) the nurses and Anesthesiologist came in and gave him an evaluation. Hearing the wheezing in his chest, they got him set up for routine blood work, but also ordered a chest x-ray. It was decided that Ryan would NOT be cleared for surgery tomorrow and we began his discharge.

Because we had hotel reservations for the week, Jeff made quick cancellations. This is when we found out that his friend Pat (and Kaylyn) were trying to surprise us with a personally-delivered gift basket to our hotel room. (Of course we hadn't yet checked in) When they were going to make arrangements to have the gift dropped of at the hospital, we let them know that we were in the process of checking out. Pat and Kaylyn met us in the lobby when we were on our way out. It was nice to see friendly faces after such a long exhausting day.

We all decided to have dinner together before heading back home (Pat lives near us in La Verne and it was rush hour)

Tomorrow we will get Ryan treated by his pediatrician to knock down what ever illness he is fighting and then we will circle back with his surgeon to get re-scheduled for surgery.

I'm so tired as I write this blog.. I hope I captured everything.
All in all, Ryan was so good today. Despite the fact that he was on a clear liquid diet (no milk!) that he rejected - he only drank about 2 oz of Pedialyte all day - he was in great spirits and slept frequently throughout the day. He fussed terribly with the IV (to be expected) and with the x-ray - but the kid HATES to be restrained! As usual, he flirted with all of the nurses and stole their hearts.

Although I am not pleased with the admitting process, I am thankful that the nurses had the foresight to have him determined healthy for surgery prior to putting him through the bowel prep.

Jeff and I are bummed to have to prepare ourselves to go through this again in the future - but we know that it's best for Ryan to be as healthy as he can be with such a major surgery. I think this overall process may be harder on the two of us than it is on Ryan!!


Ryan talking (but I like to think he's "fussing" the hospital for making us wait so long!!)