Journey to China

This blog documents the Spitlers' progress towards the adoption of Xia Ping He (Noah Spitler) from the PR China. It also documents Noah's medical process in pursuit of a total repair to his CHD (congenital heart defect).

Sunday, July 31, 2011

Good Until 3 o'clock

Noah did well up until about 3 o'clock. He then had a lot of pain issues. He was just miserable. One of his doctors checked on him and was very concerned that he may be having a lung issue again. Finally it seemed that the pain medication kicked in and the happy Noah came back out. She said she thinks that really was the problem and they are putting him on another pain medication and will use it on a specific schedule. I also agree it is the best plan at this point. We really want him up out of bed and at least sitting in a chair by tomorrow. He was in so much pain today (even after getting Morphine) that he couldn't do it. I cannot imagine going through all that he has gone through. I will, we all will, be happy when we make it through all of this. I hope to have some good news to share tomorrow. I love you and good night.

A Brighter Day

This morning has been really good. I got some laundry done and took a shower. I feel like a million bucks now. I arrived at the hospital and Noah was happily drinking water and watching TV. His nurse said he at a good breakfast that included eggs and bacon (of course). This time around they gave him some special anti nausea medicine and that has done the trick. He has not gotten sick one time. Hooray!!! Since I have been here he has eaten some Cheetos, pepperoni, cheese, marsh mallows, and some really cool blue Gatorade. Please note (in the photos I am including) the color of his tongue, cheesy fingers and the happy face while eating his pepperoni. After eating all of that his lunch tray arrived. I guess we are making up for not eating anything for almost two days. When I unveiled the food on the tray we discovered Taquitos. He had some the other day and loved them. The big goal for the day is to get him out of bed and into a chair. This will really help his whole system to get moving properly as well as help his lungs to continue to improve. His lungs have actually gotten much better since yesterday morning. He is starting to act more like the real Noah. He seems much happier and willing to talk. Yesterday morning I really explained to him how his heart had been fixed and that Dr. Hanley was a special doctor that God has gifted. I also talked about how different his life is going to be now that he has a whole heart. I included all of the fun things he will be able to do that he was unable to do before such as ride a bike without getting winded, go on the water slide at the water park, run on the playground at school, and go up and down stairs without any help. He looked at me as serious as can be and said, "I want to meet him". I said, "You mean Dr. Hanley"? He said, "Yes, I want to meet Dr. Hanley". At this point I was about to burst into tears. I was so amazed at the fact that he, a seven year old little boy, was so touched by what I had explained to him that he wanted to meet the man that saved his life. He is such a smart boy. I don't know if he will be able to meet Dr. Hanley but I am sure going to ask if it is possible. This morning I read a verse out of the Bible that really defines what has been going on in our life. It is found in Romans 12:12-"Be joyful in hope, patient in affliction, faithful in prayer". Wow, that is hitting the nail right on the head. I want thank all of you who have faithfully prayed for our entire family for such a long time. I pray God will bless you for it. I will try and update you all again at the end of the day.

A Little Better

Well, today was long but had a peaceful ending. I just left the hospital and Noah was sleeping well. He is still dealing with some pain which we are trying to stay on top of before it gets too bad. The problem is that he really doesn't complain until it is bad. I was a little frustrated today because they were supposed to move him at one o'clock this afternoon and it ended up being 6:20. He finally wanted something to eat in the afternoon and despite requesting some food he ended up with none. I don't know what was going on but it was a mess. The poor kid just wanted some chicken soup. I had decided to have my friend Holli pick me up and take me to the store so I could pick up some things that Noah had requested and by the time I returned they were able to scrape up a few things he wanted to eat. One of the nurses walked in a few minutes later with a bag of Cheetos in her hand. She said, "This is what Noah wanted". I am sitting there thinking, "Wow, Mom goes away for an hour or two and comes back to Noah running the hospital staff". I think he is a big hit around here and now he is taking advantage of it. I will have to have him beg for food more often, especially when I am hungry. I have to tell you guys one of his funny stories. Last week when he was still under the influence of medication he said, "I want some pop corn". I said, "You want pop corn"? He said, "Yes". I then said, "I can go to the store later and get you some". He said, "No Mommy, from the movie theater". I then said, "I am not going to a movie. I don't have time to go". He then replied, "Yes, you must go to the movie theater and get me some popcorn tomorrow". Again, I said, "I can get you some from the store". He ended with,"I want popcorn.........". He said this as he drifted off into la la land. He was totally out of it and had almost no idea what he was saying. He has also made some interesting food requests while under the influence of his meds. It makes me wonder what he is dreaming about. Well, I guess I will go now. I am exhausted and in need of some sleep. Until tomorrow. Oh, it is tomorrow :)

Saturday, July 30, 2011

Sleepy Morning

When I arrived back at the hospital this morning Noah was sleeping peacefully. He had a difficult night dealing with pain. They said he had to have pain meds about every two hours. He seems to be more uncomfortable this time than last. He is having a respiratory treatment right now. I really want to stay on top of that so we don't have the same results as we did last time. The Doc just came by and said Noah will be switching locations in CVICU. They really want to continue to monitor him but he is in a huge room with lots of crying babies and it is hard for him to rest. I was very happy to hear that he will go to a better room. The big prayer requests for the day are: good rest, lessened pain, and good results for his lungs. His treatment is finished and is now getting some much needed rest. Thanks for the prayers!!!

Friday, July 29, 2011

Good News: Out of Surgery

Hi Everyone,

Robin just called to say Noah is recovering in the CVICU (cardiovascular intensive care unit). The 3 hour surgery was a success, removing fluid around the heart and installing a chest tube (to drain future liquid). Noah also had a central line (IV in the neck) put in, but does not have a breathing tube (a good thing). He is awake but experiencing some pain, so a pain medicine was given. Robin said he had already eaten two Popsicles by the time she got there.

I know many of you were watching for info, so this is brief; perhaps Robin will post again later. I encouraged her to get some rest as soon as Noah was back asleep. She has had a very long day.

Thanks for your continued prayers for us all. Praise God for the skill, knowledge, and leadership that allows Dr. Hanley and his team to heal our Noah. For God's glory-

Sent via BlackBerry by AT&T

Finally in Surgery

Noah is in surgery right now. He was a little anxious when he found out they were putting in another IV. He hates those two letters and every time he hears them he gets a concerned look on his face. I don't blame him because if I had been poked that many times I would be out of sorts too. They did tell me at this point that they hope only to have the breathing tube in during the surgery. If all goes well they will remove it before he wakes up. During this surgery they are going to remove the fluid that has collected around his heart. They will also test it to make sure there isn't any infection involved. He is still on three different kinds of antibiotics which is hard on his IV's. He will probably remain on antibiotics for several weeks after we go home. I am including a photo of him with two fingers held high representing surgery number two. I will let you know when he gets out of surgery and how he is progressing.

Still Waiting...

Yes, we are still waiting. One of the Dr's just came in and said she thinks Noah will be going in about an hour. I just ran down to the gift shop to grab some distraction toys. He has been in so much pain from hunger and it is hard to keep his mind off of it. He is putting together a track that a small airplane runs on. I hope that works for a while. We also had a nice furry visitor today (a Golden Retriever). Her name is Carly. She was so sweet and calm. We both loved seeing her. She put a little bright spot in our day. Love you all and will try to keep you informed.


We are playing the waiting game this morning. Noah is on stand by for surgery so we don't have a specific time at this point. He is starving right now. He is doing a great job at working in his puzzle book though. He picked out this particular book off of the Ronald McDonald House "gift" cart yesterday while taking one of his walks. I am so happy he did because it is keeping his mind off of his stomach. The good news is that for his procedure he may not have to have the breathing tube down his throat. That could change depending on what they find when they go in but at this point we will take as much positive as possible. As soon as I know when he is going in for surgery I will try and post. I am including a picture of him walking yesterday with his nurse and working in his puzzle book from this morning. Continue to pray that he stays distracted before surgery, healing on his mouth sores, and that when he is able to eat he will keep food down. I want to say thanks for all the cards, notes, and words of encouragement. They mean a lot to us all. Also pray for Adam who is holding down the fort at home. He is doing a great job of keeping things going and I am proud of him. I also want to thank everyone who has stepped in and helped with the girls, dog and fish (I still can't believe that fish is still alive). You guys are the best and we couldn't have managed without you. Love you all, Robin

Thursday, July 28, 2011

Major Surgery Again...


Only a few hours after Robin posted the blog about Noah doing better, she was told Noah was restricted from food and water to prepare for a possible surgery. That surgery has now been confirmed and will take place sometime tomorrow (Fri, July 29th). Please pray that it will be early, as Noah stopped eating at 5pm and is already back in hunger/thirst pain.

The surgery will be open chest, unfortunately. The problem is fluid collection on the lower back portion of his heart, and they cannot remove this via a heart cath. So, the breathing tube (respirator) will be re-inserted and Noah will come out of the procedure with another chest tube (and back into ICU).

This feels like a "sucker punch" to us all. Robin was told by a nurse, "You won't be going home anytime soon, I'm afraid." But, like we've learned in the past 18 difficult months, we'll just take it day-by-day (or perhaps hourly?).

Jesus said (Rev 22:13):

"I am the Alpha and the Omega, the first and the last, the beginning and the end."

That puts us 'somewhere in the middle', so although we don't know what the next hour brings, Jesus Christ does because He is timeless. So we will put our trust with Him and appreciate your prayers to Him on our behalf.

Adam (& Robin)

PS. Perhaps we'll have an update by mid-afternoon (EDT), Friday.

Getting Better

Noah was able to get some sleep last night. He had a tough day yesterday but he is slowly recovering. The downer of the morning was having to get a new IV again. This seems to be something he has to endure once every day or day and a half. He completely dreads it and it really stresses him out. His mouth sores seem to be getting a little better and so he is able to eat a little more. We just got back from a little walk around the unit. He was not happy about it but he did it anyway. We hope to go for at least one or two more before the end of the day. My goal for the day is to get him a chocolate shake. I promised him one for lunch time so I will be trekking to the local McDonald's to make that purchase. He is happily playing his DS for now while anticipating the start of more antibiotics. I will include a picture of him eating his breakfast which included his favorite, bacon. I will try and get a picture of him walking later so you guys can see his progress. We continue to appreciate your prayers as Noah goes through his recovery. They are much needed and much felt---Thanks!

Wednesday, July 27, 2011

Good Mini-Surgery

Sorry to leave you hanging on the last post; Noah's small surgery went well. All Noah had to do was fall asleep (sedation via IV). The surgeon was Dr. Sebastian, who assisted Dr. Hanley on Noah's unifocalization (total repair). Dr. Sebastian hopes he was able to fix this chest tube site so that the infection will go away and the bacteria that keeps showing up in Noah's blood (cultures) will cease.

They had to move another IV yesterday. I know Noah feels like a pin-cushion, and that's causing quite a bit of anxiety. He has blood drawn every morning (for the culture test) and then every afternoon (it seems), he has pain surrounding the IV - which forces a move back to the other arm. After the "bacteria war" is won, a more permanent IV will be installed that should alleviate pain and allow blood to be drawn without a needle.

Yesterday's procedure was originally planned for 1130am, but that slid to 1:30pm, so Noah had hunger pains for 6 hours. After it was over, he managed some small bits of food and juice, then by 8pm last night he was working on a McDonald's chocolate shake. You can't find many more concentrated calories than in one of those!

I returned to Georgia on the red-eye, so please continue to pray for Robin as she does "everything" in California, including most of the blog entries and info. Every encouraging comment, e-card, and USMail card are appreciated greatly. God Bless you.

Adam, for all the Spitlers

PS. Robin thinks Noah got a little more sleep last night than the 5 hours he's averaged earlier. Thanks for praying!

Tuesday, July 26, 2011

Tuesday Small Surgery

Hello friends,

In about 30 minutes, Noah will be slightly sedated and have a small surgery done on his chest - to help the infected spot heal. This is where the last drain was located (but removed several days ago). Since last night's MRI showed no deep, internal spots of infection, the conclusion is this chest tube site is the source of Noah's persistent infection and fever.

Please pray for Noah, as he is hungry again - he couldn't have anything to eat or drink all morning. His stomach hurts (hunger pains) and he's reminding us of that every 22 seconds!

To distract Noah from his hunger, we went for a good walk (15 minutes) this morning, then we built a Lego Star Wars V-wing Starfighter (shown below). Amazingly, despite his discomfort, when the laptop snaps the picture Noah manages to paint on a smile. I am proud of him.

On a depressing note, Noah's blood culture from Sunday came back positive for Staph (that's bad). We had 3 or 4 days of negative (good) tests, so this is a disappointment, and might force Noah to be on antibiotics much longer.

Thanks for your prayers for Noah's comfort and peace during the small surgery today (scheduled for 11:30am PDT).

Adam (& Robin)

MRI "Good"

All we know (tonight) about the MRI came from the cardio-vascular surgeon who said "It looked good, and we didn't see anything that looked like pockets of deep infection."

We expect them to simply treat the site on his chest that is red and infected.

This is good news. Thanks for your prayers. Good night,

Adam (& Robin)

Monday, July 25, 2011


Noah just went in for an MRI. One parent was allowed to accompany him, so Robin chose to go.

This one hour survey will try to determine exactly where the infection is located. Where the Staph came from (deep within his body or through a hole in his skin) will determine how it is fought. If it is only a surface source, the treatment will be more simple. If deeper (result of his open heart surgery), then it will be more complex and potentially involve another surgery.

Thanks for your continued prayers. We should know something by Tues morning, so I'll try to post again.

God is in control and presently, there is peace.

Sent via BlackBerry by AT&T

Sunday July 24th

Hi Everyone,

It was another long day, and I just couldn't think of a good title for today's blog, so I went with a date.

We are certainly Blessed by God and grateful to be out here at LPCH (Lucille Packard Children's Hospital), but exhaustion is starting to become "normal" for all three of us. We read every comment that is posted on the blog and appreciate your prayers for Robin and me - for strength - because we often feel pushed to the limit. It is also humbling to hear that "friends of friends" and "church members of family members" (basically people that we've never met) are following the blog and praying for us. "Thanks greatly" seems too little to say. Perhaps "GOD BLESS YOU for caring for us" is more appropriate. As an encouragement to you (not necessarily for us), I'll mention James 1:27:

"Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress..."

So may God richly bless you for your concern, support, and prayers for Noah (who was formerly an orphan). For God's glory and to advance His kingdom--

Noah had another "brave boy" day. He got 5 hours of sleep overnight, then after his chest x-ray, I coaxed him into another hour of sleep- believe it or not, by singing to him. (Some of you won't believe that, but hey, we're quite desperate to make him sleep!) After a brief breakfast of eggs and bacon (easy on the bacon this time, mind you), the surgeon came by and did another "mini-surgery" on Noah's infected chest wound (see previous post). Rather traumatic on Noah, unfortunately, but I think I heard him say things looked a little bit better.

Noah also got morning and afternoon visits from the ID (infectious disease) doctors. They are responsible for Noah's battle against Staph. They said his blood has been "negative" for cultures, but some other indicators still show an infection, so they added a second antibiotic to his daily regimen. For those of you (and me) who hate blood draws - Noah has to get one every day. In fact, that was why he only slept 5 hours last night - the lab tech showed up at 6am for his daily blood draw. What a way to start off the day, huh?

We took two walks today. Noah didn't like that one bit...complaining of exhaustion and sore legs. He ate a really great lunch of grilled cheese sandwich, french fries, and orange slices; probably twice as much as before. Unfortunately, he still has stomach pain and loses some of his stomach every 2-3 hours. Tonight he had pizza, green beans, and some yogurt. Oh, and we did get 4 more Oreos down and a chocolate milkshake mix. So caloric intake was a big win today!

On the difficult side (sorry- another "roller coaster ride"); Noah's left arm IV - just installed yesterday - became useless and had to be removed; so now he has one back in the right arm. Then, after telling us, "My lips and tongue hurt," Robin discovered that he has 5 canker sores on his lower lip and several on his tongue! (antibiotics, perhaps?) And this afternoon, his chest wound had to be cleaned and re-packed a second time. (I'll leave out the details, but to say it requires morphine).

If you know our little Noah, you know that he's a tough little kid, but I'm sure you (like us) have an even greater pride in bravery of these stories. He is really enduring a tough time, so thanks, once again, for your prayers for him.

Robin is doing fabulous, though if I let her proof this posting, she'll make me remove that (because she denies it). I am so proud of her - she is getting little sleep, she is engaged with Noah and the nurses all day long, and she's watching out for me. Those of you who know her are not surprised, but you would be impressed yet again to see her "in action" out here. In the world of fighter pilots, she would have the callsign "Mom Zero-One" (for #1 Mom). Go Robin!

Love and thanks to you all,


Saturday, July 23, 2011

Brave Boy; Day of Drama

Hi All,

It's been a long Saturday full of drama. Noah got only 5 hours of sleep last night, and really needs some rest, so that is yet another prayer request on an already long list. (Thanks!)

For the good news: The regularity efforts worked out last night and all throughout the day today - so thanks again for the prayers - Noah's stomach complaints are basically gone as his system began running in a more normal manner. His appetite returned, and although he's gotten sick 3-4 times today, he has retained a lot of food! The dietician ordered all sorts of high-calorie items; Oreos, milk shakes, chocolate pudding, and pasta. We've actually had to restrain Noah's eating lest he over-do it and get sick. So, eating has been great.

Noah went on three walks today! That might seem trivial to many of you, but it is a very proud accomplishment around here. It takes a lot of energy for Noah to walk this soon after surgery, so everyone here is impressed. As he walked through the ICU, many of the nurses and doctors cheered him on (it was very cool).

On the difficult side of our news, we learned that sometime this week Noah contracted a Staph infection. This is rather serious, especially for people with weak hearts. The good news is that of the types of Staph, Noah has the less serious one - one that can be treated with antibiotics (Nafcillin). We'll know more on Monday, but this could delay our return to Georgia and/or require Noah to stay on an IV for a few weeks. Thank God it isn't the MRSA type (which penicillin cannot fight)!

A possible source of the infection is a place on Noah's chest where one of the 3 chest drain tubes used to extrude. The tube was removed earlier in the week but unfortunately, the wound got infected (I'll leave out the details). So more drama followed when a surgeon came and performed a "mini-surgery" on Noah's chest to clean this infected area. Following that, a new IV had to be inserted - to replace one in Noah's right arm that had stopped working.

So, as you can see, we had some good events today, but there have also been many needles and tears. Please thank God for healing Noah's lungs and allowing his digestive system to clear. And new to the list are requests that his battle against Staph be won and he get some rest.

We are grateful for the excellent medical care that the LPCH professionals are giving Noah. It is truly humbling - the care is so good and everyone is so genuinely interested in Noah and his recovery. Noah's Sunday School class (Cynthia Waters and Angela Johnson) mailed out a huge "We Love You, Get Well Soon" banner and it hangs as a great witness to many here. And for your prayers and e-cards: great thanks! By God's help (only) are Robin and I getting through such exhausting days (as you might imagine).


PS. Despite all today's challenges and his infection - as you can see, Noah looks great in the picture!

Friday, July 22, 2011

Some steps fwd, Some steps back

Hi Everyone,

Sorry for the delay in postings. I'll try to catch you up- it's been busy out here in Palo Alto.

Noah had a "roller coaster day" Thursday. On the good side, the last chest drain tube was removed, which makes him more mobile and reduces pain when he moves around. The bad news is that he has a small bit of infection now (Fri) from that exit and so he's got some pain and fever. One of the surgeons who fixed his heart (Dr. Sebastian) came by to check on Noah this morning, and he took out a stitch needed after the chest tube. That caused some pain, but Noah was incredibly brave. (I had to "sit that one out"; too many childhood memories of stitch removals!)

Yesterday's good news is that Noah and I took a walk yesterday. It was his first time out of bed and on his feet since Tuesday before the surgery. He did very well; wobbly at first, then we walked all the way down the hall and back. By the end, he was walking so fast the nurse could barely keep up the "entourage" of tanks and IVs. He rested in a chair for 3 hours (!) after that - a very good thing for his lungs.

Unfortunately, his regularity has not returned and with no success after the walk, he returned to bed and started eating some jello and tomato soup. After several complaints that his stomach hurt, he decided to empty it (unannounced). Nice. That was quickly followed by "I'd like my pizza, now!" (yeah, right). Later that night he emptied his stomach again, so they put him back on an IV of fluids.

This morning he is sipping water and slowly eating bits of cracker and seems really tired (very little sleep last night). They moved an IV (again) that was in his right arm, then had to draw blood to check his labs; so as you can guess, he feels like a pin cushion by now...a bit apprehensive.

His lungs are doing VERY well, apparently. The x-rays look better and his coughs and bubble-blowing (soap bubbles) are much stronger today. The doctors are very happy about the way his lungs sound, but are a bit concerned about his regularity and slight infection from the chest tube. So, please pray that all the meds he taking for regularity (think prunes) will help. Until then, he'll remain here in the ICU. We'll try another walk down the hall this morning.

Thanks for your prayers - they are working and Robin and I can tell you are also praying for us!
God is Good; even on the roller coaster days...

Adam (& Robin)

Wednesday, July 20, 2011

Stable now with mask

Noah has gotten lots of rest today and his vitals are normal and stable.

He was given some sedation earlier today and that allowed him to sleep and ignore his discomfort. He is wearing a mask which allows him to "pressure breathe" (force air and medicines into his lungs). See the attached picture. The mask is better than being intubated again (tube down the throat), but even with the mask he cannot eat or drink - so he's back to being hungry and thirsty again. Even though Robin tried to tell Noah "Hey - you can pretend you're Darth Vader or a super-hero!", he still hates wearing it.

Some of Noah's IVs were rearranged and the "central line" (IV in his right neck) was removed because it tested positive for cultures (which could cause infection). He is on antibiotics for that, and he is being fed by IV. The plan is to remove Noah's mask later tonight and return to the nasal cannula (tube under the nose with nostril ports). We hope his breathing will be strong enough (without the mask) to heal his right lung.

In all of the drama and our concerns, there is a small funny story that our Bulloch County friends will enjoy: In the midst of Tuesday's drama (putting on the mask and going under sedation), Noah spontaneously cried out in frustration, "I want to go to Splash in the Boro!" (the water park located in Statesboro).

Thanks for your continued prayers for Noah, for Robin and I, my travels, and the girls. As difficult as the last two days have been, it is clear the Lord is carrying us along and being a great Provider. For His Glory through good and bad days...

Adam (& Robin)

A Difficult Day

I want to thank everyone who is praying for Noah. This has been a very difficult day. The poor guy is just miserable. He wants so badly for them to take off the mask that fits over his nose. They are giving him several different respiratory treatments to try and get his lungs back to where they need to be in order to function properly. I think he hates this worse than the breathing tube that was down his throat. The worse part about it is this should have been a day of celebration. This is Noah's "Gotcha Day". One year ago today we saw Noah in person for the first time. It breaks my heart that today has been one of the worst days for him. All I can say is to keep lifting him up in prayer. I am adding some photos of Noah that were taken on "Gotcha Day". It is funny that some of the first ones that were taken were of him taking pictures of us. He was a techno. geek from the beginning. He is so smart and handsome.

Tuesday, July 19, 2011

Noah Needs Your Prayers

I want to say, "thanks", to Adam for updating the blog last night. I had so much going on with Noah I didn't have time to post. Basically, last nights episode was triggered by his shallow breathing. He was not able to catch his breath which caused his heart rate to rise. They did an xray which showed that his lungs were having a problem. The episode he had was like having an asthma attack. They said this is not uncommon for a child that has had a procedure like he has. He had a pretty good nights sleep which seemed to help him a little bit. They did an xray this morning and said that his left lung looks great but his right lung still looks collapsed. They also did an ultrasound to check for fluid in the lung but it didn't appear there was very much. He had some problems with his breathing again this morning and he had to have some extra care to keep his oxygen saturation level where it needs to be as well as his heart rate. Please keep praying for his right lung to heal. That is what needs to be under control before he can go forward with his treatment. This is a picture of Noah and I before he got sick last night. He is a very brave and strong boy.

Bad Turn - Please Pray for Noah


I'm sad to report that only a few hours after Robin posted the "Noah's doing great" status, his breathing became very laborious. Robin noticed that he was sweating and was straining to breathe and pointed this out to the CVICU doctor. Apparently, Noah's heart rate got rather high as well (>180).

He is now on a mask (not nasal cannula) and is being given Albuterol, an asthma treatment. He is also on something to calm him down and allow sleep. His heart rate is back in a normal range.

Robin said that an emergency X-ray was taken and compared to 10 hours earlier - there is a significant change to his right lung.

Please pray for Noah's breathing and for him to be calm. Please also pray that Noah and Robin will both get some good rest tonight.

Thank you all for your support and prayers. Thank God for helping Noah and Robin through a tough day today. Psalm 121 says "He who watches over Israel will neither slumber nor sleep."


Monday, July 18, 2011

Noah's Progress

I am happy to say that Noah has progressed to sitting a few minutes in a chair. This is so great because it will help his lungs and help everything in his body to flow at a more normal rate. He is doing a good bit of coughing which is a good thing. Here is a picture of Noah sitting in a chair for the first time. He did a great job even though he was uncomfortable.

The Real Noah

We have had a good day so far. Noah has starting showing signs of his real personality. He is eating well and drinking a lot. They were able to remove his RV line this morning so he is likely to get out of bed for the first time today. This morning he took the tube out of his nose, put it on the end of his nose and gave me a smile. I said, "What are you doing", and he said, "Just being funny". Yes, our funny little boy is starting to emerge from being on all that medication. The prayer requests for now are for his gas pain to go away and for his breathing to get a little better. Today he was able to play his DS for the first time and he handled it pretty well. Overall, he's doing great. He looks really good. I am still amazed when I see his fingers, toes and lips. Here are some pictures of him this morning and playing his game. Thank you everyone for your continued prayers.

Sunday, July 17, 2011

Doing Great

I am happy to say that Noah was able to have two of his three chest tubes out as well as the LA line that was attached to his heart. He has come a long way and is doing well. The biggest concern at this point is pain management and respiratory issues. They want him to be weaned off of pain meds that are given by an IV so that he can take them by mouth. That is the goal but they are taking it slow because they want him to be comfortable. This will enable him to move closer to getting out of intensive care. He is doing well considering everything he has been through. I (Robin) told him that he is my hero. We are so proud of him. This photo is of Noah eating his first piece of bacon, his favorite food. He also was begging for chocolate ice cream. He ate some ice cream and then fell asleep. He was a happy boy!

Quick Update

This morning has been good and bad. The good is that Noah finally got to eat some food. He had his favorite food, bacon. He has done a great job of eating and drinking slowly and has had no problems transitioning from liquids to some solids. Please pray for him because he has been in some pain this morning. I feel so bad for him when he is in so much pain. We had to wait for ten minutes because it wasn't time for him to get his pain meds yet. He is doing much better now. They are removing one of his lines at this time and I will update you as to how that went as well as adding a picture or two. Thank you all so much for the prayers. They have made a difference and are still much needed.

Saturday, July 16, 2011

Air/Food Tubes OUT!

At promptly 6pm, the respiration and food tubes came out! We have a much happier Noah. He is tired and sleeping more now. We are hoping he'll be able to have something to drink and eat 4 hours from now.
Thanks for praying for Noah's comfort! He is much happier now and even smiled for the first time in 3 days. Praise God...


PS. Picture L-R: Jerry (Respirational Therapist), Nick (Noah's personal CVICU Nurse and best friend), Noah!

Good News - Respirator Coming Out Soon!

Great news. Though a decision was made earlier today to keep Noah intubated until Sunday, a doctor reviewed his status this afternoon and said he could be extubated (sp?) this afternoon at 6pm!
So - all looks good to take out the respirator and the tube going into his stomach.
In the meantime, here are a few pictures of his stats (for those of you who know what they mean) and a picture of Tired Robin catching some z's in a rocker.
Thanks for praying for the tube to come out!

Recovery Day 2: Slow Progress

Noah has had a good day today, though slower progress than earlier. He is in no pain and remains very groggy. He complains less about thirst since we are allowed to feed him sips of water through a "sponge lollipop". He continually complains about wanting to eat, and makes "spoon to mouth" hand motions every few minutes. I'll admit it's tough to keep telling our little boy, "Yes, I know you're hungry and I'm sorry you can't eat yet."

The various treatments he's on are an amazing balance. As I mentioned earlier, he's on a sedative and pain killers to keep him from moving around. The heart-lung balance is intriguing and complex and I certainly can't explain it all, but I'll tell you what I've learned: Because Noah's heart had a 19mm hole in the middle, he didn't have a "low pressure side" and a "high pressure side" like in a normal heart. So his lungs and body were accustomed to receiving a certain level of pressure (and volume and low oxygen). Now that Drs. Hanley and Sebastian rebuilt his "plumbing" to "normal" and closed the 19mm hole (called VSD), his lungs are now getting much more pressure than they are accustomed to! This leads to stress on the lungs (pulmonary hypertension), so to reduce that, Noah is breathing special air with Nitrous Oxide (NO2) in it to help the lungs' blood vessels. Slowly, they've been reducing this NO2 so hopefully the breathing tube can soon come out (and Noah can eat and talk!).

Now, chances are I've said something wrong in that paragraph- so don't go quote me to a cardiologist! (Ha ha). But I just wanted to explain a bit why he has the respirator in and why he cannot eat or talk.

Well, that's the update for tonight. Thanks for reading and most of all, for your prayers. God is Good.

Adam (+Robin)
Sent via BlackBerry by AT&T

Thursday, July 14, 2011

Recovery Day #1

Noah had a good first day. He is under general sedation and pain killers to allow sleep and healing. He woke up several times, but is unable to talk because he has a ventilator tube in his mouth (helping him breathe). Because his body wants to collect fluid around the heart (a bad thing), the doctors and nurses want to keep him "dried out". Because of this and the tube in his mouth, Noah is always thirsty. He cries for water each time he wakes, and all we're able to give him is a small sponge on a lollipop stick, which he sucks on.

He is a very brave, tough boy and we know you'd all be proud of him!

We've taken several pictures, but only want to post these shown (to not alarm some of you who are like me - not keen on medicine!) The top picture was taken this morning when we were surprised to find him awake (and literally kicking - begging for water). The bottom is a picture of his new, PINK toes. The transformation from his previous (low) circulation is amazing.

Continued thanks to you for cards and e-cards (we got 4-5 more today) and of course for prayers that Noah would be comfortable in his healing. And, again, please thank God for Dr. Hanley and all the professionals here at LPCH!

Adam (& Robin)

Noah is awake!

Robin and I caught a few hours of sleep last night (at Ronald McDonald
House) and rushed back over this morning to catch the doctors'
"rounds" (when they review Noah's progress). We were shocked to find Noah's
eyes open and him moving around! He is very much awake (though still on
calming and pain killer drugs). He is incredibly frustrated by all the
things he's attached to. (I'll not give details, but to say he has at least
11 things hooked up).

Please pray for his frustration. He is not in any physical pain, but he is
thirsty (but cannot have water) and he doesn't like all the "attachments".

On another amazing note, Noah's previously cyantonic (blue/purple) fingers
and toes are the brightest pink! For the first time in 7 years, his
extremities are experiencing oxygen! Robin and I are marveled.

Thanks again for reading, praying, and for thanking God for Dr. Hanley's (+
team) amazing skill. We'll post pictures when possible and appropriate.

Adam (+Robin)

PS. We read many of the greeting cards you filled out online. He nodded
when we asked "do you remember" each of you! If you need the link- look
back a few blog postings. I know he would love to hear from you.

Good News, Good News, Good News!

Join us in praising God!

Dr. Hanley just met with us, to share wonderful news- after 11 hours of
surgery, he successfully rebuilt our Noah's heart!

The procedure took longer than normal because he is 7 years old and many of
the "parts" are bigger, requiring more time to collect them. Also, Dr.
Hanley discovered an extra collateral artery which 2 heart caths and 1 MRI
failed to locate- and he was able to use this branch as well!

Noah's heart is beating strong and in a normal rhythm. His SPO2 is at
100%!!! We'll get to see him around 11:30pm PDT tonight.

Dr. Hanley said he'll be in the CardioVascular Intensive Care Unit (CVICU)
and sedated for at least 48 hours while they monitor him for bleeding (the
only concern now).

We will update you when we know more. For now, please join us in thanking
God for His provision. And may God Bless Dr. Frank Hanley, Dr. Hammer, and
the whole team who rebuilt our little boy's heart!

In Christ, Adam (+Robin)

Wednesday, July 13, 2011

6pm Update

Thanks for your patience, everyone. We were just told Noah is doing fine.
He went on the heart-lung machine around 1:30-2pm PDT this afternoon and
he's still on it. That means Dr. Hanley is still performing his heart

We are humbled to read your postings, receive your texts, and hear via
family members of your prayers. Wow, it is humbling and encouraging. Many
of you know how difficult medical situations (or even thoughts) are for me;
I just don't like hospitals! Well, I know you are also praying for Robin
and me, because normally the day would be even more difficult than it has
been. Thanks for your prayers to our Almighty God! Robin and I even got a
nap and feel recharged for a long night.

Speaking of night, we know our East Coast friends are wrapping up their
day. We won't be surprised if the procedure goes several more hours. I
will update the blog when we hear anything.

Thanks again for the prayers. We also pray for you. It is encouraging to
remember that God never sleeps or slumbers; nothing catches Him "by
surprise". Noah and Dr. Hanley's team are in His gaze into many long hours.

In Christ, Adam (+Robin)

11am Update and Meet with Dr. Hanley

We just met with Dr. Hanley, who stopped by the parent waiting room to see us before going into surgery. What an impressive man to meet! He discussed the 2 options and what the chances were for each- full unifocalization repair (60%), or the "staged repair" in which a portion of the repair would be accomplished, followed 6-24 months later by another one. The goal is to get blood flowing in a "normal" direction and thereby oxygenate his blood to 100%. Even if the staged repair is done, Dr. Hanley said his SPO2 would increase to the 80s. Today his reading was 69.

Dr. Hanley calls this his "long surgery," and said he'd probably return to update us around 4-5:00pm PDT. Until then, Robin and I will probably go for a walk and try to think about something else.

We have some good news! The Ronald McDonald House (which has had no vacancy since our arrival) just called to say we have a room. We stayed twice in the RMH in Atlanta/Emory and it was a huge blessing. The House is only blocks away from the hospital, and also provides a place to eat meals and get exercise. The cost is offset by donations. If you've never dropped some loose change into the box at your local McDondald's; we encourage you to consider it - a valid charity!

LPCH (Standford Univ Hospital) is such a well-organized hospital. The facility is very well thought-out and it's clear that everyone here is "the best" at what they do. We just got briefed from the head of their hospitality section, who told us about sleep rooms, the chapel, the laundry and gift shop, etc. He mentioned a link you might find interesting. You can go on this website and create a greeting card for Noah. When you submit it, the staff here prints it out and delivers it to Noah!

Thanks for following. Thanks for your prayers. We'll update more in a few hours. God Bless you for caring about Noah.

Adam (& Robin)

PS-Above is a picture of Noah getting his pre-surgery haircut.

Surgery Day. Game On.

The long-awaited day for Noah's heart repair is here.

After a brief phone call to his sisters this morning, Noah's vitals were checked and he changed into his "hospital pajamas." The "sleepy juice" arrived around 7:30am PDT (in the middle of a card game) and he drank it right down. In no time, his game skills diminished and he started acting goofy. Dr. Hammer (his anesthesiologist) smiled a knowing smile and said, "Okay, we'd like to take you with us, Noah - you'll see your parents in a few minutes." Not exactly in my right mind, I asked, "Oh, will we see him again?!" to which the doctor replied, "No - for HIM it will only be a few minutes - not you!" I gave him a fist-bump and high-five; Robin gave him a kiss; and off he went with a goofy smile on his face.

We are now waiting to meet with Dr. Hanley, the surgeon who will repair Noah's heart. Many of you know we are truly blessed and humbled to have Dr. Hanley for Noah's procedure. He is regarded world-wide as the best for what Noah needs - TOF, PA, VSD with MAPCAs. No time now to redefine all of those acronyms; I'll direct you to Google.

Thank you for all your prayers; for Noah, the medical team, the Statesboro Spitlers and our family. It looks to be a very long day. We've been told to expect updates every 4 hours, and a procedure that might extend through midnight EDT (for many of you). We'll update you as we get news.

in Christ your friends,

Adam (& Robin)

Tuesday, July 12, 2011

Heart Cath Part II

Hi Everyone,

Thanks for your prayers today. The heart catheterization went very well. Here are some updated pictures and extra info.

We arrived early to the hospital which turned out to be good - the anesthesiologist called to ask if we could start early. We each got our wrist ID bands (Noah got 3), and Noah's vitals were checked. If you didn't know - the major indicator of Noah's condition is his low SPO2 (saturation of peripheral oxygen); in layman's terms - how much oxygen his blood is carrying. In "most people", our SPO2 runs between 98-100 %. If our level dropped to 89%, for example, we'd pass out. But Noah's normal value is 65-75%, and today it was 71. One goal of this surgery is to get his SPO2 into "the 90s". Those of you who teach Noah in Sunday school or Kindergarten can only imagine how much energy Noah might have if/when he attains an SPO2 in the high 90's?

So, back to the story. Noah changed into his "hospital pajamas" and soon it was time to drink the "sleepy juice" (which he said did not taste good). On his empty stomach, it only took minutes for his speech to start slurring and his balance to falter (he made several attempted nose-dives from Robin's lap). The anesthesiologist then had us put Noah on a gurney, which we wheeled to the heart cath room. Robin and I donned simple scrubs (hats and gowns - which Noah did not like, btw) and followed him in. He took a few deep breaths of a sleeping gas (sorry - I don't know all the technical terms - particularly pharma terms); and off he went to sleep. Just before he nodded off, I asked him (in Chinese) if he loved me and he nodded. Robin simply gave him a kiss. It was pretty cool, actually.

The procedure took about 4 hours. The probe was inserted into his right thigh (as done last October at Egleston/Emory). CT scans were taken in conjunction with a contrast dye (iodine) to identify the small MAPCAs (small collateral arteries randomly connecting his heart and lungs). Blood pressures were also recorded to determine how much blood was flowing through each one. In the end, the cardiologist (Dr. Perry) who performed the procedure seemed happy about the data collected. He said Dr. Hanley (who will perform the surgical procedure Wednesday) would use these pictures and the ones from Atlanta to help determine if a full repair can be done in one day (unifocalization). If the vessels are not strong enough or big enough, then Wednesday might need to be "part 1 of 2" procedures, with a return once the blood vessels grown stronger and bigger. We understand Dr. Hanley will determine that on Wednesday.

We rejoined with Noah in the surgery recovery room. He was awake, but groggy, and didn't want to lie still (as directed). Robin and I slowly fed him water and eventually he ate a popsicle and some chocolate ice cream. He wanted his Nintendo, but in his normally-feverish pace at the buttons, his SPO2 dropped below the "alert level" on the monitor - causing the alarm to go off. On went the oxygen cannula and away went the Nintendo for awhile. After a few hours, an X-ray was requested in order to check for any blood clots. The radiologist needed Robin or me to help, but Robin disappeared around the corner...mmh, perhaps it had to do with the "fashionable" lead apron we were offered? (see picture). So I helped hold Noah while 2 chest x-rays were taken. Robin said that I should tell you what Noah asked the radiologist just before he took the shot: "Do I need to smile for the picture?"

The X-rays showed no problems, and Noah was discharged for the night. We are to be back Wednesday morning around 6:15am for what sounds to be a long day. These procedures (unifocalization) have been known to span 7 to 20 hours, and Noah should get going around 10am. We'll receive updates from the OR every 4 hours, so we'll try to pass those along via the blog.

Thanks again for your prayers. We are reminded that we serve an amazing, unlimited God who knows each of us in a detailed way. He also knows our future before it happens:

Ps 139:15-16
"My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."

So, even though we are tempted sometimes to worry (especially after being told all the risks that we'll face this Wednesday), it helps greatly to know our Good God loves Noah has a plan for him. And our God is already in Wednesday and knows what it holds.

Thanks for reading and caring/praying for our boy--

Adam (& Robin)

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Monday, July 11, 2011

Heart Cath Complete!

Noah's cardiac heart cath went well and he's in the recovery room! The doctor said they got good pictures and good info - sounds like the pressures in his MAPCAs (blood vessels connecting heart and lungs) were even and low (good).

At this point, it sounds like there are 2 options for Wednesday: 1) a full unifocalization repair - everything done in one long surgery, or 2) a partial/staged surgery that would re-route blood vessels into his heart, then a second surgery later (months?) after things have healed up.

Thanks for following and for your prayers. I'll try to post some pictures later.

For now, he's busy eating a popsicle, playing NintendoDS, and talking to a few relatives on Skype. (technology is pretty cool).


Weekend in San Francisco

Our weekend was free from any medical appointments, so rest and fun were on the agenda. We are blessed to have some wonderful friends living in Santa Clara, the Lietzaus (Kent, Dawn, and 7 month old Taylor). Not only did they host us at their home, but they also arranged a double-decker open-top bus tour of San Fran. Although we were very cautious about exposing Noah to the elements and any extra germs, it was educational and lots of fun! The weather was a "bit" different from Bulloch County, GA...wind chills of 40 deg F during our visit to the Golden Gate Bridge.

Here is a picture of Noah with the TransAmerica building; the 3 of us on the bus, and the the Lietzaus.

God Bless the Lietzaus!

Sunday, July 10, 2011

Noah's Friday

Our first day at LPCH (Lucille Packard Children's Hospital) consisted of in-processing and some pre-op tests. Noah got another (his 3rd) echocardiogram, which took about an hour. An echo is similar to the ultrasound many women experience during pregnancy - it uses sound waves to take pictures inside the body, and can even use doppler to show some blood flows in the heart. Very clear was the 19mm hole (VSD) between his left and right sides of the heart. Again, this hole - normally a bad thing - is keeping Noah alive in his present state.

After the echo, Noah was examined by two specialists from the heart-cath section. They checked Noah for anything that might delay or inhibit his heart catheterization from being performed on Monday. They also briefed Robin and me on risks involved and possible pre-surgery preparations that might be accomplished with the cath. Examples would be stretching certain blood vessels open or inserting a stent (or even a block) to better control blood supply to/from Noah's heart.

The day ended with a trip to the blood draw laboratory. Noah wasn't too happy to hear he had to "get a shot," but was very brave and with some distraction via NintendoDS, he managed to give 5 vials of blood in about 90 seconds. That called for a celebratory trip to McDonald's for fruit smoothies!

All in all, an easy, successful first day. We continue to thank God for Noah's health - by far the longest he's gone without a fever or lung complication. After the weekend, we'll be back!


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Wednesday, July 6, 2011

Almost On Our Way!!!

We are packed, Noah's sleeping and we will be on our way to California in a few hours. Adam is very happy that I remembered to pack some snacks :) Please continue to pray for us, especially Noah. We really need him to stay in good health up until the surgery. We again want to thank you all for the prayers and support throughout this past year or two. We would not have made it this far without all of you. I mainly want to thank our God and Father for what He has done for all of us. He has given us the strength to get through many things during this time. We are so happy to finally be here at this point. We will do our best to keep you updated on the progress ahead. We love you all!!! (The pictures are from Noah's first trip to the beach)