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).

Tuesday, August 30, 2011

Odds, Ends and "Joy to the World"

Are you guys enjoying my catchy titles? I am trying my best to continue to be creative in the midst of the madness. We are having a good day with food, walking, sand art and the playing of the DS. Noah is doing well. He continues to improve every day. We have walked around twice today and are sitting in the chair most of the time rather that sitting in our bed. Our first walk was to the library down the hall. Our physical therapist accompanied us on this journey. I walked into the room and said "hi" to some of the ladies that work there and then announced, "I have a special guest with me". They saw Noah and yelled, "Yeah, Noah"! Can you tell he is very popular around here. It seems that everyone knows him. I guess if you take into account that we have been here for so long it makes sense. Below is a picture of Noah at the library and playing his DS in his room.
We also went to the game room today and played "Lego Batman" on the Wii. After playing I convinced Noah to go out on the patio. It was so nice to be outside and get some fresh air. It is the first time he has been outside for at least three to four weeks. I wish I had a picture to share but I didn't have the camera with me at the time. I will try to get one tomorrow.
This morning I had the nurse write down what his temperature has been for several days. I was trying to get a good feel for how it is trending. It is staying pretty steady on a low grade. He does have some higher ones in the last couple of days but only a few. His white count is still good so it isn't completely alarming to anyone. When the doctors rounded today I did let them know that I want to stay on top of his temperature and blood results. I don't want anything sneaking up on us. We do not want to go back where we have been before if we can avoid it.
The picture below is of a pipe cleaner martian man that I (Robin) created one day. The little dogs on each side were made by Mary who has been one of Noah's respiratory therapists. She was a lot of fun and Noah really liked her. As you have noticed throughout our blog, I have taken it upon myself to stretch the artistic skills of the medical staff of this hospital. They have done a great job and have been a lot of fun.
Lastly, I am sure you are wondering about the "Joy to the World" part of my title. When I was working on the blog earlier I heard one of our favorite nurses, Tracy, out in the hall singing, "Joy to the World". She was singing for everyone to hear. She is such a fun person and you can't help but love her. It really struck me at that moment that the song is all about Jesus. I was so happy to hear someone singing about HIM, the Savior of the world. One day when we see Him in heaven there will be no pain and no sorrow, just peace. That helps me to get through each day no matter how difficult it may be (and later on in this day it was one of them). I do hope that I am not here in this hospital to hear any more Christmas songs. I pray the next Christmas song I hear will be in my own house with our whole family. AMEN!

Monday, August 29, 2011

Having fun

We have had some fun the last two days. Noah is progressing in many ways. He is now able to eat some food without getting sick. Thanks to all of you who have been praying specifically for him to be able to eat and keep everything down. He has been begging for chicken soup, Pop chips and Popsicles. He has eaten them all with much success. He is also receiving nutrition through his feeding tube. He is getting something like Pediasure in that feeding tube. They are trying to max out the intake so that his body will get stronger and be able to successfully recover.
He has been walking around the halls and to the play room. In the playroom he has spent most of his time playing the Wii. I am sure this is not a shock to any of you who know Noah. He also did an arts and crafts project as well as playing with racing cars. Today he had a lot of fun playing "Donkey Kong" and "Mario Brothers" with a young man named Ross. I was so happy that he was there to play these games with Noah since I am not exactly the best player.

After eating my dinner at the Ronald McDonald House I returned to the hospital to find Noah hot with a fever. I have to admit that at that moment I wanted to throw myself on the ground and have a temper tantrum. I thought to myself, "No way can regress back to all of that". This morning he still has a fever but the nurse practitioner doesn't seem alarmed. Our nurse mentioned that it may be a sign of withdrawal from some of his medication. I am still waiting on the doctors to round so hopefully then we will be able to fully address this issue. I am not going to let this slide though. Noah has been through too much to let something fall through the cracks and end up in another bad situation. Please continue to pray for him. Pray this fever goes away quickly so he can continue recovering successfully.
I was just reminded through a devotion book I am reading that I need to, "...Put aside all that is waiting to be done, and refuse to worry about anything". The Bible reference to this is: Luke 12:22-26. It says, "Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear...Who of you by worrying can add a single hour to his life?" (verses 22 and 25). I really needed to read this today. I have to hand it all over to the Lord...even the fever Noah is dealing with today.
I am including some pictures of Noah playing the Wii in the play room. Thank you for the continued prayers. Love you guys, Robin

Saturday, August 27, 2011

A Day of Progression




This has been a day of progression. Noah has been able to get up and move around much more than he ever has before. He walked out of our room and got on a special bike/tricycle. He rode around the unit three times and rang the little bell a few times too. He did so great. We also were able to walk to the playroom and play the Wii as well as do a craft project. I have a feeling we will be spending a lot of time in the playroom. Our biggest issue at this point is trying to figure out why he is still throwing up. He ate ice chips almost all day and had no problem but as soon as he ate part of a Popsicle it made him sick. I hope we can get a real plan going for this so he can eat something of significance. They still have said nothing about when we will be discharged and go home. It still could be a while. He will have to remain on antibiotics through his PICC line for several more weeks regardless of being discharged. It is something that will have to be handle either at home or at another hospital facility. Again, I am not quite sure about all of that either. There is a possibility we could be discharged but have to stay in the local area for a while. We will just have to wait and see what they think. I am including a video of Noah’s ride on the tricycle and his latest tie drawing on his chest dressing. Enjoy and I hope to have more good news soon!

video

Thursday, August 25, 2011

Back to the Third Floor

It has been a pretty good day so far. We did move up to the third floor which means we are getting better or at least well enough not to be in intensive care anymore. Noah has gone most of the day without getting sick. He did eat a Popsicle that made his stomach hurt really bad. He also walked all the way around the hall. He finally fell asleep from exhaustion.
He is getting some more nutrition through his feeding tube which makes me feel a little bit better about his recovery. He needs it in order to have enough strength to continue getting out of bed and walking around. The more he walks the better.
Today I am including pictures of one of Noah's surgeon, Dr. Sebastian. We really love him. He is a very good doctor and we have a lot of fun when he is around. I am also including some more fun incision covering art work. The Mickey Mouse head is by Christina and the tie is by our nurse from the last two nights, Denise. We have enjoyed challenging the nurses while having some fun at the same time. Thanks for the prayers and we pray you all are well too.

"Father of the Bride"

Yes, it is a funny title for today's blog but I am trying to be creative. Why would I use this title? Well, some of you who have seen the movie will understand the line, "Not so fast George Banks". That is how I felt about today, "Not so fast Noah Spitler". Just when you think you have a clean face with no tubes, something changes. We had a clean face for about one to two days (or was it a day and half?). Noah is still throwing up. He can't even keep down small amounts of ice chips. They have done an echo on his stomach and his chest. They have sent off blood work to see if maybe he is having some kind of pancreas issue. So far the blood work is fine and everything else seems fine. Basically, they have no idea what is causing the problem. Because of this they have put in another feeding tube down his nose, through his stomach and down into his intestines. They are trying to bypass his stomach all together so he can get some nutrients in his body other than through an IV.
Besides all of that, he is doing well. He got out of bed and walked around some more today. He also played his DS game, played on the computer, and worked on some craft projects. He is talking more and cracking the nurses and doctors up with all of his questions. He is truly entertaining everyone who comes in the room. He is also know for trying to trick people into giving him water when he is not supposed to have any. I found out tonight that when his nurse went on break last night he talked another nurse into giving him a bottle of water. She said she walked in and discovered him with the water. He is tricky and he will do what he has to in order to get what he wants. He is a smart boy and not much gets past him. As you can see, we still need a lot of prayers. That is the quick update. Thank you for the prayers and good night.

Tuesday, August 23, 2011

Artistic Nurses, a Clean Face and the First Day of School

Please do not send me any threatening looks, letters or phone calls. I know, I know, I am WAY behind on the blog. Things are progressing well. Noah has nothing on his face at all. They have taken off the nasal cannula and the feeding tube as well as taken out all chest tubes and the IV line out of his neck. Everything he has left is on his left arm so it has really made it much easier to get out of bed, walk around a little and sit in a real chair. He is looking so good and has almost no pain in his incision site. The only issue we are trying to fight right now is nausea and vomiting. He has been doing this for at least three days and is not able to eat or drink anything. He is getting nutrients from something called TPN and Lipids (basically electrolytes and fats). He receives this through his IV. They did an echo today of his stomach and are running some blood tests to see if the issue is something other than just getting his stomach and intestines running properly. I will let you know when I find out something. They also did some blood work in association with his immune system and it looks like all of that is good.
He seems to be more like himself today. He is smiling and laughing a little. He is also being a little more verbal than he has in two to three weeks. He told me today that he is wants to go home. I told him I was ready to go home too. He is doing very well and I know it is because so many of you are praying for him. Thank you so much.
I am including many pictures for you all to see. Many show Noah with different drawings on his chest covering. I have challenges some of the nurses to compete with each other to see what kind of drawings they can do for us. Miss Lindsey did a great job with her rocket ship (on a previous post) as well as the elephant and rabbit. Last night Miss Christina drew Mickey Mouse. I can't wait to see what he gets next. I am including a picture of Noah with Dr. Ashok (one of the surgeons). We LOVE him!!! He is such a great doctor. He has done such a great job of taking care of Noah. One morning when I came in Noah's room the nurse immediately told me that during the night he came into Noah's room and rubbed his head until he fell asleep. She was about to cry telling me this. She said, "It was so sweet". I was very touched by how much Dr. Ashok checked on Noah and spoke so highly of Noah. He even wrote a special note in Noah's memory notebook that I am having the nurses and doctors sign. He is a very special man and I am proud to have him as one of our doctors. I am also including a picture of Noah and his physical therapist, Amy, who is helping him learn to use his muscles again. She is a sweet gal and has been very encouraging to Noah the last couple of days. Most of all please note the picture of Noah with nothing on his face. It is so great to see him looking like his normal self again. Thanks so much for the prayers. God is good and is constantly reminding me of this as we inch our way out of the door of the hospital.
Lastly, I want to include a picture of Madison and Olivia from their first day of school. I am sad I was not there in person but it is good to see their beautiful faces. I love them and am so proud of them. They are really stepping up and taking care of things despite what is going on in our family. I know the Lord is using them right where they are at this moment. Thanks everyone and blessings to you all!!!

Saturday, August 20, 2011

Another One Bites the Dust


Good news!!! Noah's last chest tube was removed...thus, "Another One Bites the Dust". I feel so happy that things are slowly being removed and he is looking more like himself. He has been working hard on coughing out all of the stuff in his lungs. This sounds gross and no big deal but it is much like running a marathon for him. His respiratory therapist and I have been pushing him a lot today so he should sleep very well tonight. The faster he can have clear lungs the better. His chest/incision pain seems to be under control at the moment. He is having a little tummy trouble but overall is doing well. I hope to get him out of the bed before he goes to sleep tonight. Again, getting out of bed and engaging in a lot of movement is key to several aspects of recovery.
I am including a picture of Noah's new chest dressing. It is a cute drawing of a space ship that one of Noah's nurses (Lindsey) did. I loved it so I had to include it in the blog. Thank you for your continued prayers. They are really being felt. Blessings to you all!

Friday, August 19, 2011

Good and Heavy


I want to let you all know that Noah is doing well. When I arrived this morning he appeared to be more like himself. His nurse, Colleen, said he was eating ice chips slowly and giving her some good coughs. Coughing is essential to his recovery. He has to get the secretions out of his lungs so he doesn't end up with another collapsed lung or something worse. It is also important to get him moving. We hope to maybe even get him sitting up in a chair today. They are talking about removing some of his chest tubes which would be great. They are also going to try and get rid of some of his IV lines. They don't want to keep these in too long because they are afraid of infection. I say, "YES", to removing anything that has to do with causing infection.
Since Noah was taking a nap I decided to go get something to eat downstairs in the cafeteria. As I sit here, outside, I can hear the sound of a helicopter. I have heard and seen them many times since I have arrived. When I see them I get a heavy heart. I know that more than likely they are delivering an organ that a child is waiting for in order to survive. I think about all the people I have met and how their children are fighting for their life waiting for an organ. It makes me happy for them when they finally get the organ they have been waiting for yet sad at the same time. Somewhere out there is another parent who is grieving for the loss of their child. I know this is way too heavy for you all but I share this because it has made me look at life in general and my life differently. I see how easy it is for us all to stay complacent in our own little world when there are so many who have real problems going on in their life. There are many life lessons in all of this. I pray God will help me to think twice when I want to complain about something that really isn't a big deal.
We thank you again so much for the prayers. I know many people are praying because there is no way we would have made it without prayer and encouragement. I hope to add a picture of one of Noah's doctors later today so stay tuned...


Hi, I am back to add a picture of Noah and Dr. Zebrack. We LOVE her. She and Noah have had some fun together. One day a couple of weeks ago they shared marshmallows together. We hope they will be able to do that again very soon.

Thursday, August 18, 2011

Tube Out

Sorry I haven't blogged in a day or two. Noah is doing well. He just got his breathing tube out. We are very happy about it. He still cannot eat or drink because his stomach just cannot handle it. He is able to have a swab for his mouth so he doesn't get too dry. We are also happy that Noah has not spiked any more high fevers and his white count is low. We are sad that it is Kim's last day with us (She is Noah's nurse). She has been such a blessing to us. Please continue to pray for Noah's progress. Thanks for all the prayers!!!

Tuesday, August 16, 2011

Chest Surgery Update

I have good news. Noah is out of surgery and back in his room. They washed out his incision and decided that everything looked good enough to close him back up again. He still has three chest tubes and several IV lines as well as his breathing tube. He seems to be doing well accept for some pain. They have given him some pain medication and it is helping. I am praying this is the last "bump" in the road to recovery. We continue to be thankful for all of your prayers for our family. Hopefully we will all be together again sometime soon.

The Meeting and the Wash


Noah is heading back to the operating room sometime today. It was supposed to be this morning early but since he is being added on the operating list there is no definite time. They will take him in and wash out his incision and possibly close it up. They will leave a tube in for drainage. The factor that may drive if they close or not will be the stability of the sternum bone. Right now Noah is pretty sedated and resting very comfortably.
The cool news is that Dr. Hanley came to our room to meet with me and see Noah. He said he felt very confident that they have control of the infection and that they may be able to close him up today. It was so nice to get some reassurance straight from him. I did ask about taking his picture with Noah even though Noah was sleeping and he was happy to do it for me. So, I am posting that picture so everyone can see this great physician. I am so thankful that God has gifted him in such a wonderful way. I pray blessings on him and his family. I will post more after he comes out of the OR so you all will know exactly how to pray. Thanks everyone for all your prayers!!!

Monday, August 15, 2011

Slow and Steady



Today has been slow and steady. Noah is doing fine. His normal routine at this point is to watch a little TV and sleep the rest of the time. Most of the time he seems to be pain free but his throat is bothering him because of the tube. The good news is that his cultures remain negative and his white count is lower. He also has not spiked a fever in quite a while so that is good. This all is an indication that the infection is going away. The big question is: When do we close the chest? Well, I wish I had an answer for you. There is not a specific plan for this right now. I have heard that Dr. Hanley may come by tomorrow and then we may have more information then. Please pray I will be able to get a picture of he and Noah together. The unfortunate part is that Noah is on so many pain meds he may not even remember it happening. But, if I can grab a picture I will at least have the proof for Noah to see later. Again, I wish I had more information to give you all at this time but we all will have to be patient and wait. Thanks for the continued prayers. I really need them right now. I had a difficult day and have felt really tired. I did manage to get a quick nap and that seemed to help. I will let you know when I have more to share. Blessings to you all.
The pictures are of two of Noah's fabulous nurses. I have to add this sweet information about his nurse named Kim (with the dark hair). She had Noah for three days straight. On Kim's third day they offered her that day off instead of coming into work. She told them that she would rather come into work so she could take care of Noah. I was so moved by this kind gesture. She is a great nurse and really loves Noah. This is just an example of the kind of care Noah is receiving. We are so blessed to have such caring people around us that think of us as real people not just a patient.

Sunday, August 14, 2011

Sunday. End to a Great Weekend






Hi Friends,

If you didn't catch it on the previous blog, we made a surprise trip to California this past weekend. It was a wonderful weekend, even though it flew by so quickly. Our goal was to encourage Noah and Robin - since neither had seen Madison or Olivia for 5 weeks. Robin was certainly happy - in fact, I don't ever remember seeing her so happy and relieved as when she hugged her girls.

Noah was moved to a private room in the CVICU; in fact, it's the room he started in August 14th (post heart surgery). He is rather sedated and we're told he won't remember much of what transpires. For that reason, we took many pictures with him - so that later, he'd know of our visit.

His infection is slowly improving. His blood cultures continue to be negative for bacteria (which is good). Dr. Hanley decided to leave his sternum open through the weekend - and that decision allowed a feeding tube to be added - which puts PediaSure directly into his stomach. We were happy about this - so Noah wouldn't feel hungry, he'd get some nutrition, and his stomach wouldn't go so long without something to process. We don't know when Noah's chest will be closed again, but that will require a time of fasting, then surgery in the operating room.

In his current state, Noah has several "connections". As I recall, 1 central line (IV in the neck), 1 IV in each arm, 1 IV in the leg, a PICC line (peripherally inserted central catheter) in his left arm, a breathing tube in his mouth, a feeding tube in his nose, and the tube that goes into his chest to "rinse" out the infection in his sternum. After all of that, it seems what he likes the least is a simple blood pressure cuff on his left leg, which occasionally inflates to check his blood pressure.

So, as you can guess, Noah continues to be a very brave boy - quietly (mostly) coping with all of these connections and the itches that come from dry skin and lots of medical tape.

Thanks again for the continued prayers for Noah and Robin. Also, thanks to a small handful of people who knew of our "secret plan" to surprise Noah and Robin - I really believe Robin felt special and it was evident in her face. The girls and I flew "the red-eye" back from San Francisco Saturday night, arriving home around 10am today. Tomorrow is the girls' first day of school, 8th and 5th grades.

May God Bless each of you who read along and pray for our little Noah. Adam




Pictures: Family photo in I (heart) SF shirts. Prior to his surgery, Noah saw one of these shirts in San Francisco and said, "Look, Daddy - I love Spitler Family!" So funny.

Robin and her big brave boy.













On her own initiative, Madison went to the hospital gift shop to purchase balloons for her and Olivia to give Noah.







Olivia reading to her little brother.

Saturday, August 13, 2011

Friday: A Nice Day Together

We had a nice day today; some rest, some time with Noah, and some sightseeing.

Noah's breathing improved over Thursday and his fever went away. He is still on a breathing tube, though; so he cannot speak, eat, or drink, and that frustrates him. The doctors like his culture-free blood results (good), and his lowered blood white cell count; but a recent echocardiogram showed some possible "vegetation" (small clots) on a heart valve, so we are cautious to declare improvement just yet.

Thanks for continued prayers that his chest can be closed at the right time and that the infection will not return.

God is Good.

Adam, Robin, Madison, Olivia, and Noah

Thursday, August 11, 2011

A Great Surprise!



Hi Everyone!

Yes, it's me (Adam) again - and guess what? I'm in California again! The girls and I decided (with some coaxing from our friends, the Lietzau's) to fly out and surprise Robin and Noah with a short visit! Although at one point I thought Robin had figured out our scheme, when we knocked on Noah's door - the priceless look on Robin's face left no doubt - she was genuinely surprised!

I'm sure all of you have marveled (with me) at how much Robin has withstood during the past 5 weeks...and how well she's done it. She really deserved "something good" and having her whole family together was as she told me, "the best gift you've ever given me." I will try to post some pictures to show her joy.

Noah was not as sedated today as I expected. Yes, the open chest status is a bit overwhelming visually - something Madison and Olivia couldn't handle more than a minute or two. Of course, with us all here, Noah wanted to sit up in bed (not allowed) and talk (unable with the breathing tube). He continues to have some pain (all over) and is very thirsty.

I'm not sure how much he understands we are all here (or not). We visited for 30 minutes, then went to a very late lunch. While we were gone, Noah's nurse asked him if he remembered his sisters and Dad were here and she said he looked surprised. So he may or not be remembering things between sedated sleep periods.

It is truly a joyous feeling to have all five of us "in the same zip code" for the first time in 5 weeks. Because it's been an incredibly long day (for all of us), I will conclude this post and again, thank all of you for your prayers, your kind words, gifts, and letters. We are exhausted but happy. A friend reminded me of the verses that follow - truly the only thing getting us through this long ordeal. Adam

Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. (Isa 40:28-29)

Wednesday, August 10, 2011

Disappointed


This has been a very difficult day. It is 2:20am and I am finally back at the Ronald McDonald House. They took Noah into surgery about 9:30pm. All he could say is, "I want water". It breaks my heart to have to tell him he can't have any. After I had to let him go I went back to our room to gather up all of our stuff, put it in a wagon and take it back down stairs to the CVICU. I was then able to take a little nap while I waited. The doctor, (not Dr. Hanley), called and told me to meet him downstairs. I went downstairs to Noah's room to drop a few more bags off and they told me to meet the doctor in the waiting area. He told me they went in and cleaned out the area. They then consulted Dr. Hanley, who was in a different location, and he said he felt it necessary to leave the incision open so they could continue to clean out the infection on a daily basis. What does this mean for Noah? Well, it means that he will have to stay sedated for a period of time until they feel like it is safe to close him back up. Again, I have no idea exactly how long this will take. He indicated a week or two. Through this process I have learned not to even think about dealing with things in specific times. No one really knows so we will just take it one moment at a time
I have to share something neat that the Lord gave me tonight. As I waited to go in to see Noah I started to feel very anxious. I began to pray. I started with Noah and went down my list of children that I have met at the hospital. There are so many that have such difficult lives and are dealing with all types of illnesses. As I prayed, in the faint distance I could hear someone whistling. It got louder and louder. I began to recognize the tune and I realized it was one of they hymns we sing at church. It was, "Come Thy Fount of Every Blessing". I thought to myself, "Here I am in a waiting area, in a hospital, at one o'clock in the morning, all by myself and here comes a male nurse whistling a song of comfort for me". Only God can arrange something like that. Only He knew what I needed right at that very moment. I know I am not alone. He is right here beside me, and Noah, and Adam, Madison and Olivia. I praise God that I don't have to do this by myself.
I am including verse one of this great hymn:
Come Thou Fount of every blessing Tune my heart to sing Thy grace; Streams of mercy, never ceasing, Call for songs of loudest praise Teach me some melodious sonnet, Sung by flaming tongues above. Praise the mount! I'm fixed upon it, Mount of God's unchanging love.
***I am also including a photo of Noah getting ready to go to surgery***

Tuesday, August 9, 2011

Very Quick Update

Our roller coaster ride continues into this 9th day of August. I got word from the surgeons that they want to perform another procedure on Noah. After his main surgery they have been trying to keep an eye out on the stability of his sternum. This morning when the surgeon was taking care of his incision they noticed that his sternum was unstable. What does this mean? Basically, they have a fear that the infection may have moved into his bone and also may have a pocket/abscess below this area also. Even though Noah has been on antibiotics for weeks this pocket will be unaffected by them unless it is released. Well, we made it down stairs toward the OR (operating room) and we were stopped because of an emergency. We are now waiting to head back down there again. Just so you get the full picture, this includes no eating and drinking AGAIN. Luckily Noah has received some medication to calm him and he is sleeping right now. Well, that's all I have for you all right now. So, all you late night blog checkers will be happy to know the latest information. Please keep up the prayers. We are just hang'in in there until we get through this next step. Love you all, Robin

Uncle Scott Comes to town





Well, where do I start? I know you all are wondering what has been going on with Noah and I. It has been a pretty crazy last 24 hours. Noah was doing pretty good yesterday until evening arrived. He began having respiratory issues again so they started him on some breathing treatments again. They even mentioned possibly putting in another chest tube. After having a breathing treatment all last night while he slept as well as throughout the day they decided he had improved enough not to proceed with the chest tube. I was very happy about that because we really didn't want to do that again if we could avoid it. If he really needs it that is fine but having more things like tubes added to his body could possibly add more places that the infection can set in. He is still struggling with his breathing a little but they are trying to work it out.
The infection in his chest incision is slowly improving. The poor boy just gets so alarmed when he sees certain physicians enter the room because he knows what is coming next. They have also given him a special pump for his pain medication so that he can push a button on his own when he is experiencing pain. He received that yesterday morning and it has worked out much better. This is allowing his pain to be more in control than it has been in the past.
We had a nice surprise yesterday. Uncle Scott (Adam's older brother) came for a visit. His job brought him into San Francisco so he drove over to see us at the hospital. We were blessed to see a familiar face and we had a great visit. Uncle Scott was also able to visit us again today (Monday). We had fun playing Go Fish and I (Robin) was able to get away from the hospital for a while. Thanks Uncle Scott for the dinner, especially the pie.
I had a chance to talk with Adam, Madison and Olivia today. I really miss them and can't wait to see them again. Please continue to pray for our family. It is difficult to be separated. Noah told me again that he is ready to go home. Please pray that he heals quickly so that it will be possible to travel home sometime soon. Thank you for your continued prayers. Blessings to you all!!!
I am including a picture of Noah and Uncle Scott as well as a picture in tribute to Adam & the girls

Sunday, August 7, 2011

Fight Day



Sorry I have not posted all day but it was pretty much packed the whole time. Today was "fight day". I feel like we have been fighting so hard against infection and pain. The problem is that a lot of the pain is being caused by the infection in his incision. I won't give you any details but it is something that I cannot imagine going through. Please just keep praying for those two things very specifically.
The bright spot is that Noah was able to walk twice today and he did so great. There are some of those moments when I see a glimpse of the real Noah. I love to see him smile but I can't make him laugh too much because it hurts his chest too much. Tonight he finally said, "I want to go home". I replied, "I do too but we have to wait until you are completely healed". I do know he is totally tired of the hospital food. They are redoing the cafeteria so the choices for food are very limiting. I am again thankful for the home made food from Elizabeth and her Mom. It is the only food he has eaten in the last three days. He loves it and I do too.
That is really about it for the day. Thanks for the ongoing prayers. I can really feel it. I know we (our whole family) are being prayed for each day. Blessings to you all!!!
PS-I am including a couple of photos of Noah. One is of him in his wagon while we played the Wii in the playroom and the other is of him eating his pop sickle after he had his incision procedure.

Friday, August 5, 2011

Good Morning/Funny Night


Noah has been doing great this morning. I am so impressed at the improvement. Right now he is diligently working on his Etch-A-Sketch. I finally had time to actually clean up and organize all of the stuff we have accumulated since we arrived here at the hospital. I feel like I have lost some weight just by accomplishing that task.
Just to lighten things up I have to tell you a funny story. I have to say up front that this story is mainly for my friend Tracy Pond. She, of all people, will appreciate it the most (inside joke). Since we have been here I met a nice girl whose son has had some heart surgery and is waiting for more. She also has a son that is about five years old. He has met Noah and seems to really like him. Last night I was working on the blog at the Ronald McDonald House this little boy quietly stood behind my chair and yelled, "Boo". I about jumped out of my skin from fright because I was so engrossed in what I was typing. He thought that was so funny that he continued to do it about every ten minutes. He is as cute as a button and I just love him. We had a lot of fun playing this game together. Another child who was about 11 years old walked up to me and said, "Is this your grandson"? Well, I guess I have been here so long and my wrinkles are sagging so much that now I look like a grandma. Yes, Tracy you can laugh at me now :) It is a good thing that through all of this I have just learned to go with the flow. I am glad that we all can get a good laugh about it. There are days I need a few of those.
I will let you know what's going on a little later, I am praising God that right now we are doing pretty good.

Good Evening

Noah had a great night before I left. They were able to get his pain under control. Because of that he was able to eat a lot of food. One of our friends, Elizabeth, brought us lots of yummy home-made food. Noah loved it and said, "This is yummy, it tastes good". He proceeded to eat at least 2 cups of food. He ended his meal with two pieces of Dove chocolates that he received from his Grammy and Poppa. That is more food than he has eaten in two weeks. Everyone was thrilled, especially me and his nurse Nancy. Thanks to everyone who has prayed for him to be able to eat more. Thank you Lord!

Thursday, August 4, 2011

Procedure Done

Noah is back in his room. Everything went fine but he is still in much pain. During the cleaning of his incision they also added a PICC line. This is a more permanent IV type line that he can keep even when we go home. Noah will be having many weeks of antibiotics and there is a chance, sometime in the future, that we can get those at home. I am not setting anything in stone but it is something positive to think about for our return. Continue to pray for healing of his incision, the infection to go away and his food intake. I will let you know when I have more news. Thanks for the prayers!!!

Infection, Infection Go Away!

We have hit another bump in the road. Noah's infection that is now in his incision is not doing very well. They have now decided to go in, extract it and clean everything out. This is the main reason he has been in so much pain. We tried our best to deal with his pain using a Tylenol based med and Ibuprofen but it just hasn't really helped enough. Now that he is going to have this procedure they gave him a shot of Morphine. I have to say I now have a totally new child. It has made a difference in how much he is talking and playing with games. I think he supposed to have his procedure done in an hour or two. I will post again when I have more news. Please pray he stays as pain free as possible and that this horrible infection will go away. Thanks everybody!!!

Wednesday, August 3, 2011

Walking and Whistling



Sorry for the delay in posting but this day has been packed full of activity. Noah's day did not begin very well. He was still dealing with some pain issues. So much so that he only ate one bite of his 3 pieces of bacon at breakfast. Everyone knew something was wrong when he wouldn't eat his bacon. He finally started feeling a little better when we got him to sit in a chair beside his bed.
We had a nice visit from our friend "Miss" Dawn. She brought Noah a very cute game that he really loves. He played with it for quite a while. It was great for distracting him from the pain in his chest. We also received a special package from Grammy and Pops that included cookies, legos, bubbles, and some cool train whistles. The whistles were great because that is the type of toy he needs to help with his respiratory issues.
We also moved upstairs today which means we are officially out of CVICU now. He is in a pod room that includes two babies. Pray he gets some sleep tonight because they can be really loud.
Before we moved Noah he was able to get a quick walk in down the hall. He was in pretty bad pain but he was a trooper and did it anyway. I am going to include two photos that include our friend "Miss" Dawn giving Noah his cool gift as well as Noah and I blowing on the train whistles.
Lastly, I want to include some additional information about my post from yesterday. If anyone is interested in attending Judson's benefit concert for Noah it is at 7pm this Friday night (Aug. 5th) at Fletcher Memorial Baptist Church. I believe it will be open to whom ever wants to attend. I am sure it will be a blessing to everyone. I want to say thank you again to Judson and his family for thinking so highly of Noah.
Continue to pray for weight gain, pain reduction and control of his infection. Thanks everyone!

Just Have to Share

You know God is so amazing. I have been so taken aback by they events of the last couple of days. He has shown me/us how blessed we are by having so many wonderful people in our lives. I have been itching to share what has been going on but I wanted to ask permission from some folks just to make sure they were OK with me sharing.
First, yesterday morning as I was sitting in Noah's room, the nurse told me I had some visitors waiting for me at the desk. I approached the desk and saw two ladies standing there. They asked, "Are you Robin" and I said, "Yes". Long story short they were a mother and daughter that were acquainted with my Mother-in-law Rita. The Mom, Junko, is great friend's with one of Rita's friends. I hope you all followed all of that. Anyway, they heard about Noah and really wanted to meet us and help us out. They live about 15 minutes from the hospital. They brought some lovely gifts for Noah and I as well as some homemade banana bread. I was so happy to have something home made instead of from the cafeteria. I was touched that through all of those connections the Lord brought some friendly faces to our door. What a blessing.
Second blessing: I received a facebook message from a little boy's Mom in Noah's class. Her name is Donna. Her son Judson is having his birthday party Friday night. Judson loves playing the drums and from what I hear he is really good at playing them. His birthday wish is to play his own concert with a band. Some people who play other instruments are going to play with him at Fletcher Memorial at 7pm. Judson has decided not to receive any gifts for himself but to accept donations at his concert to raise money to help pay for Noah's hospital expenses. You may now close your mouth because I know your jaw has dropped open. I must admit to you all that I have, only through the help of the Lord, kept my composure for the most part through all of this until now. I/We are completely humbled and impressed by what Judson wants to do for Noah. How many children at this age think so much of their friend that they are willing to give up gifts of their own to raise money for another child? God is obviously moving in the life of Judson and his family. This is so amazing and we are so grateful for this kind act of selflessness. We are praying special blessings on Judson right now.
The special event of this evening is a gift given to Noah from one of the physicians assistants. She is a wonder girl that seems to be beautiful on the inside as well as the outside. She is the one who directed Noah's patient care for the day. She came to check on him this evening and she really wants him to pack on the calories. She did some checking about having some special milk shakes made for him but there was some confusion about if it could be done or not. She came back to visit us about 5:00pm and said, "I'm getting ready to run to McDonald's and I will grab Noah a chocolate milkshake". I, again, thought to myself, "Wow, what a blessing". She returned with his shake and very quickly said, "When I come back in the morning I am going to ask you how much chocolate shake you drank last night", then off she ran.
Again, I am completely amazed at all of things that are happening around me as well as with Adam and the girls. I want to say thank you so much for all of you (family, friends & neighbors) who have stepped up and helped with Adam and the girls. They have been blessed by all of you and most of all want to say thanks for the prayers. You guys are the best. We love you all and good night.

Tuesday, August 2, 2011

Good Progress







We have had a good day so far. Noah ate a good breakfast which included bacon of course. I brought him another small bowl of some of his favorite food and he ate about half of it. I am including a picture of him surrounded by food. He is eating popcorn in this photo. He loves to eat popcorn while watching movies.
Noah had an exciting gift delivered today. Adam's cousin Mindy and her family sent Noah a new DS game. Cousin Mindy said that her son Carter loves the game and he thought Noah would like it too. Well, he sure did. We immediately put it in his DS and he has been playing it off and on throughout the day. Thanks cousin Mindy.
After sitting in his chair for a while, watching a movie and playing his DS, Noah was exhausted. He was so tired he fell asleep in the chair. He slept for quite a while and is playing his DS again.
The latest medical information I have about Noah is that his lung fluid is much better. He seems to be better as far as his pain control is concerned. His blood cultures are remaining negative which is an answer to prayer. Our big goal is to pack on the calories in his eating and drinking. He has got to gain some weight back. We are still dealing with his infection issue. Some of the tissue that was tested after his second surgery has grown some infection so we are still going to have to have antibiotics for quite a while. But, overall everything is good. I wish I could tell you all we have a return date but we don't at this point. I have no idea when we will be able to come home. The plan is to have him well and healthy enough that he doesn't require any more surgeries. Until they feel comfortable about his infection problem we will not leave. Please pray his infection dissipates, his pain is minimized and he begins to pack on the calories. If all this is accomplished then we should be on our way.
I want to share the verses that have given me comfort in the past two days. They have really given me peace in knowing that the hand of God is on us and all of our circumstances, good or bad: "For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord". Romans 8: 38-39. I give praise to God for who He is and His love for us.
PS-I am going to add a few pictures of some beautiful flowers that I have seen around the area. They are amazing and I told Madison that I would post a few...enjoy!

Contacting Noah

Hi Everyone,

We continue to be humbled and thankful for the world-wide support shown to Noah. I am often asked how to contact Noah, so here is some info for you.

Mailing Address:

LPCH
Attn: Noah Spitler - patient
725 Welch Rd
Palo Alto, CA 94304-1601

E-Cards:

www.lpch.org/forPatientsVisitors/cards/index.jsp

(I previously posted that you could sign up for the website to email you our posts. I was in error, and you cannot do that yourself. I'm sorry if you wasted time trying to find such a feature. Adam)

Thanks again for your support and prayers. God bless you.

Adam

Monday, August 1, 2011

Slowly Improving


Noah has had a pretty good day so far. He spent an hour or two sitting up in a chair. That is a great milestone. He also ate a good breakfast. When I arrived I had a bowl that included some cheese, pepperoni, crackers, a fruit snack and two small pickles. Sounds gross for morning time but obviously not to him. He ate both pickles, the cheese and most of the pepperoni. He is still having some issues with pain but not nearly as bad as yesterday. Right now he is completely wiped out and taking a nap. For those of you who really know him this is a big deal. He hates naps so he is really tired. At this point we are staying in CVICU at least until tomorrow. He still has his chest tube in and have not been informed of when it will be removed but I am guessing sometime soon. His last positive blood culture was on the 26th so that is good news. He will still have to be on antibiotics for six weeks afterward but at least we have a starting date right now. We are baby stepp'in through all of this but we are getting there none-the-less. We had a super nurse today named Aly. She had to transfer to another patient earlier so we had to take a quick snap shot of she and Noah together. This is sweet Aly in our picture for the day. Thanks for the prayers everyone!!!