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!!)

I'm Getting So Big!

Ryan in his new highchair!

2009 ... A New Year

Well, it's been a while since I've been on the blog to post any updates. We've actually stayed pretty busy.

Our newest guilty pleasure has been Facebook. We spend a lot of time on that social site. Jeff and I can get pretty wrapped up in a competitive game of Pathwords, Scramble or Sodoku. (It's amazing how fast Ryan's nap time ends once we get focused playing a game).

Jeff and I both had the time between Christmas and New Years off. Sitting here tonight, I can't believe that we have to go back to work tomorrow. It just seems like the time went by so fast. We stayed very busy during the break.

Ryan had and MRI on the 23rd. When we heard back from his doctor on the 30th, we learned that the results were not what the doctor was looking for and we re-did Ryan's MRI on the 31st.

It was heartbreaking to know that we had to have Ryan sedated again for the procedure. I know, however, that having the right diagnosis is very important - so it's best to make sure that the MRI is done properly. We should know the results on the 6th. I'm crossing my fingers that we will get some positive news.

During 5 days of the break, our kitchen floors and backslpash FINALLY got done. While we were decided on the floor, getting to a final decision on the backsplash was a nightmare. I was bringing home tile the DAY OF installation. We decided on travertine tiles with a oil-rubbed bronze insert. (Sounds so simple, doesn't it?) It really came out gorgeous (I'll post photos in a later blog). It's hard to believe it was so difficult to get to a seemingly simple layout. I have determined that design is not in my make up. After about 8 round trips to the tile store - if I never have to go to Anaheim again, that is just fine with me! I thank God that our neighbor (who owns the tile/granite store) was so lenient. We had a lot of luxuries that most consumers would never have been allowed - bringing home travertine layouts, marble flooring, sample tile boards, etc. - then returning them when we decided it was not the right stone. Anyone else would have had to live with their purchase decision. In the end, though, everything came out as I could have hoped. With exception to a few wrap-up tasks, the kitchen is complete.

During one of my trips down to Anaheim, I was able to surprise my Nana and Papa with a visit. I was only miles away from their house - - and I knew that Nana wanted to see "Sam" *(aka Ryan) so badly. I'm glad that it worked out and they were both home!

Jeff spent a lot of time over the break getting our rental property ready for the new tenants. After sitting for nearly 3 months, we are happy to have renters in our La Verne house. It's a little stressful having to carry two mortgages!

Dylan spent some time with his Grandparents (Dad, Aunts, Uncles, Cousins) in Tehachapi over the break. Although it did not snow when he was there, there was plenty of snow for the family to play in while they were there to visit. Dennis and Linda (his Grandpa and Grandma) brought Dylan home and we had some time to visit with them. We don't get to see them as often as we would like, so it was nice to spend some time with them. Dylan had a good time and enjoyed seeing family.

I had the usual fortune of getting sick over the break. I had a cold/flu that wiped me out for about 5 days of the break. I guess I'm glad that I got it over with, but I am baffled that I always get sick when I have time off!! Unfortunately I was sick on New Years Eve. Our neighbors invited us over for their annual bash - and I didn't stay more than an hour before I had to get out of there and into bed!! I was looking forward to having a great Mediterranean meal and a few drinks. I had neither. Jeff was able to stay, though. He had a couple drinks and smoked a cigar while other party-goers started smoking the hooka. He was home just after midnight. (The party ended sometime after 4a)

Jeff and Dylan went to Supercross last night. Together they will attend all 3 Anaheim shows and the show in San Diego. I'm undecided on attending San Diego. I guess (at minimum) I can go up in the Motorhome to San Diego and just not go into stadium with Ryan for the races. We'll see. Funny how decisions change once there is a baby in the mix! Suddenly sitting out in the cold to watch a motorcycle race is no longer appealing.

In just the past 2 days, Ryan has become very vocal. He lets out long sounds all day long. I try to get him to say "Mama" every day! Quite honestly, I think there is a better chance he'll say "Parker" first. (He is so intrigued with that dog!) Ryan has been staying awake longer during the day - leaving even less time for me to get anything done. He continues, though, to be such a good baby. He's so lovable. He has a gleam in his eye when he smiles that just brings out a sparkle. It's to die for! Jeff and I just melt. In other Ryan news... he's up to 17 pounds. He's doubled his birth weight. I'm getting some pretty strong arms toting that kid around!

Okay. Post complete. Jeff and I both have to be up in a few hours - - and I know he's been waiting to read what I post! The good news is that Jeff doesn't have to take Dylan to school at 6:30a... tomorrow will be Dylan's first day driving himself to school! (The bad news is that having to get Dylan to school on time was Jeff's motivation to leaving the house on time!)