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).

Thursday, September 29, 2011

Home Sweet Home

The Spitlers are all under one roof again - this time at home!

Robin and Noah had a successful trip home. There were no troubles getting through security or between gates, thanks to our great travel agent/friends who set up a Delta "Meet and Assist" (including electric cart between gates). Robin said Noah slept during the first flight (San Francisco to Atlanta), but she got no sleep whatsoever. The second leg (Atlanta to Savannah) was on time, but very rough; Noah got airsick several times and Robin felt queasy.

But, after all, they arrived into Savannah on time and to a good-sized crowd of friends, family, balloons, signs, and gifts. We knew many of you wanted to come out (but could not), so thanks so much for those of you who were able!

We got home around noon - surprised to find that several neighbors had added "Welcome Home" signs to their yards (and ours!). Wow - again, we are humbled by the thoughtfulness of many friends and family members.

First thing on the agenda was a much-needed nap; and it took no coaxing to get the entire house down for a nap. Dinner was provided by more neighbors and we are ready for a full night's rest. There is nothing like being at home, even if it does still include a 4 and 6 hour regimen of IV doses.

God is Good. Thank Him on our behalf and thank Him for giving great skill and training to
Dr. Hanley and his entire staff at LPCH. You can clearly see the difference in our Noah's appearance that the heart repair is making!

Adam

Wednesday, September 28, 2011

Pack N Go!

Hi Everyone,

Adam here; blogging for Robin. She's busy packing - they're coming home!

Yes, Robin and Noah will board a Delta flight late tonight and ride the "red-eye" home, arriving into the Savannah airport around 9:20am Thursday, September 29th. Please feel no obligation, but if you're in the local area and want to drop by the airport - you are welcome to.

Thanks to everyone who has prayed for Robin's health - that is returning quickly; and Robin told me today, "Noah is beginning to run 'full strength'", so those are two big answers to prayer.

Noah will still require IV medications every 6 hours, but more good news (as of today) is that one of his antibiotics was switched from IV to oral method. Again, thank God for things looking better and getting easier!

God Bless each of you. The purpose of this blog has only been to keep you informed, but more importantly to give Glory to God for what He has accomplished. He has carried us the whole way.

I'd like to post a few lines from a new Steven Curtis Chapman song; this "says it all" from where I am right now:

--Adam

("Long Way Home" by Steven Curtis Chapman; from the album Re:Creation)


I set out on a great adventure
The day my Father started leading me home
He said there gonna be some mountains to climb
And some valleys we’re gonna go through
But I had no way of knowing
Just how hard this journey could be
Cause the valleys are deeper and the mountains are steeper
Than I ever would of dream


But I know we’re gonna make it
And I know we’re gonna get there soon
And I know some times it feels like we……
Going the wrong way
But it’s just a long way home

Saturday, September 24, 2011

Bright Hope for the Future


Sorry for the huge gap in blogging but there hasn't been too much going on that isn't our routine now. Noah was able to go to hospital school every day this week except Monday. He was able to play with my friend Elizabeth's niece this week too. They had a lot of fun together and hopefully we will see her again before we leave. Speaking of leaving.......
Today we pretty much got the go ahead to leave after Wednesday's ID appointment. We are planning toward that but we will see about it when it gets here. I am trying not to be too overly excited in case it all falls through. I will let you know.
Also, please pray for me. I have had some health (minor) issues this past week and it is no fun to be sick while you are trying to be a nurse to someone else who is sick. I am feeling a little better today but I would appreciate the prayers.
Noah had his Echo. on Wed. and it appears the vegitation in his heart has remained the same. I was really praying it would completely go away but that didn't happen. All of his numbers are continuing to trend down which is a good sign. He will go in on Monday for his normal blood draw and PICC line dressing change. We then have an appointment with the ID folks Wednesday at 11:00. Again, I have no idea what this meeting will do. I keep saying, "What are they going to do? Just look at him and say he looks good." They should be able to look at his numbers and test results to know how well he is doing. I personally think it is a waste of time but I'll do whatever in order to go home. Noah should continue to be on antibiotics for several weeks. We will just continue them at home instead of at RMH on the other side of the country.
Well, that's all for now. I will include a picture of Noah on the blog. Thanks everyone for continuing to pray. We still need it so much. Blessings to you all.....

Tuesday, September 20, 2011

Fun & Frazzled

Sorry for the blog delay. Things have been busy around here. Noah is continuing to have his blood drawn and dressing changed on his PICC line every Monday. We did that yesterday which was not much fun. The blood draw part is no big deal but having the dressing changed on his PICC line is difficult because there is so much tape.
Sunday night was fun because my friend Melanie was baking pies and a cake for her daughters birthday on Monday. She is a wonderful baker and makes pies that are to die for. I am including some pictures of Noah helping her make the cake.

Yesterday they also opened up the new playground area here at RMH and Noah was honored to be one of the first kids to play on the new equipment. I will also include a few pictures from that event.

Last night Noah got his first hair cut since his surgery in July. He did a great job of being still and patient. He looked so hansom when the lady was finished. It was such a blessing to have someone come to the RMH and give the kids free haircuts. She did a great job.

Today Noah went to hospital school again. He was reluctant but ended up having a great time. Tonight we had a surprise visit from Uncle Scott. It was so good to see him and we enjoyed our visit. We also played Bingo here at the RMH and won a gift card to Jamba Juice. Noah is so excited about using the card so we may have to do that in the next few days.
Please be in prayer for tomorrow morning. Noah has an Echo at nine o'clock to see what is happening with the vegitation in his heart. I am praying that it has gotten smaller or that it is completely gone. This would be great news.
I don't want to give anyone any false hopes but I (and Adam) are talking to the ID folks, cardiologist here and in Savannah about trying to come home to finish out his antibiotics. I can't say for sure if that is going to happen any time soon but if you all could pray for that it would be great. We so need to be back home and be together as a family again. It has been a long road and we are ready to see each other again. Thank yo all for the prayers and I hope I get to blog from my own home very soon. Blessings to you all!

Saturday, September 17, 2011

Fewer Meds, Fun Friends and Delicious Desserts

Hi Friends. Things are going well here at the Ronald McDonald House. We have some good news about some of our friends here and in the hospital. One of our friends, little Audrey, received her new heart on 9/11. I ran into her Mom at the hospital library the day before yesterday and she told me the good news. I have been praying for Audrey for a long time so I happy for them. She is a darling 6 month old and she is doing very well. We also found out that our friend Kalmia is going home. I was so excited for them too. I have mentioned Kalmia in a previous blog. She is a fabulous girl and we love her very much. Matter of fact right now she is putting a Lego set together with Noah right now. I will include a picture of them hard at work.



I am also including a picture of her special Mom eating her birthday dessert at a local restaurant. We have really enjoyed meeting Lisa and Kalmia. Last night they hosted a dessert pizza party for all the kids here at RMH. It was very yummy and they were so sweet to do that for everyone. I am including some photos of Noah at the partyI will also include the pictures of the RMH that I promised in my previous post.

This morning after a wonderful breakfast that was provided by a group in the local area we went across the street to a bakery. We had fun hanging out and playing a game of UNO. We also purchased some special desserts that were delicious. Noah got a raspberry chocolate mousse and I got an almond tart. It was nice to get out and away from the RMH and the hospital for a while. I will include a picture of Noah and his dessert.
Yesterday I got a phone call from the hospital and they wanted us to come by for a special meeting. This meeting scheduled so I could get some better information about Noah's future care and possibly a plan for going home. While in the waiting room I received a message from the ID (infectious disease) lady, Julia. She said she had talked with the cardiologists and they didn't have a problem with us moving to Savannah. She said she was going to work on our case next week and try to come up with a plan. I was unable to get back to her before five so I don't really know all of the details about what they are thinking. I ask for you all to keep praying for us and the plan they come up for us. It seems they think we might be able to travel by the six week mark but I am not putting stock into that plan until I get more information. I will let you all know something as soon as I found out something new. The good news is Noah has gained weight. He is now 42 pounds. That is the most he has weighed since we met him in China. I am also going to be able to taper most of his medications down so all he will be on is his IV antibiotics. The antibiotic schedule is still difficult but the fewer medications he is on, the better. Monday we go to have another blood draw and dressing change. He is also supposed to have another Echo on Wednesday. Pray that the vegitation in his heart is decreased or at least unchanged. This is something they remain a little concerned about but even Dr. Hanley said it is something that could take up to six months to go away.
I am thankful we are finally to this point. Noah looks good and seems to feel good. He is sleeping well at night and maintains an even energy level during the day. He has not complained about any pain in his chest for many days. I am happy about that and feel his progress is good. Thanks for the prayers everyone and blessings to you all!!!

Thursday, September 15, 2011

Medicine, a Trip to the Library and Card Games

The day started with a trip to the library that is located at the hospital. Vivian, who works in the library, speaks Mandarin. She is the one who is going through the book, "The Cat in the Hat", with Noah. The book is written in English and Chinese. She has done some great things with Noah and it has been wonderful to see. She is so energetic and really keeps his attention. I am going to try and take Noah at least twice a week to see her. We then went back to RMH and had a nice barbecue lunch that was brought in complements of Wells Fargo. It was very good and Noah did a good job of eating.
We are still getting all eight of our medications: two by IV, five by mouth and one is a patch that I have to change once a week. The schedule is grueling at night. It is easier for me now that I am a little more used to the routine but the problem is the timing. It is fine to hook them up but trying to go back to sleep for 15 minutes here and 30 minutes there is crazy. After those times I have to unhook his line and then flush them. That is what is so bad about it all. Just trying to be awake enough to do it all throws off most of my night sleeping. Luckily today I got a good nap so thus the reason I am able to stay awake enough to post. Please continue to pray for me to sleep. I am still having problems falling asleep. My mind seems to be going a million miles an hour. I just can't turn it off enough to get good sleep. Sorry for the complaining but that is one of my biggest needs right now.
Tonight was fun. We had several people bring in different kinds of soup, salad and bread for dinner. It was very good and was a big blessing. They do this once a week but I have not been around for it because I was always at the hospital. Now Noah and I get to enjoy some of the wonderful food that many businesses and organizations bring in for all the families at RMH. After dinner Noah and I played cards with our friend Kalmia. She is a delightful girl that we have fallen in love with. She too is an outpatient and I ask you all to pray for her too. She, just like us, desperately wants to get well enough to go home. Please pray that her health will improve and that she will be able to do so. We have met so many wonderful people while here at RMH. The staff is so great and we have had a great experience here. I encourage you all to check out ways you may contribute to a RMH in your area. The families who stay there are so grateful for what the community does for them. It is a super organization and has made a difference in our life. I will add a few pictures of the RMH here in California so you can see what it is like.

I will add some more pictures later to the above. I just realized I haven't downloaded from my camera yet and it is way too later to do that tonight......check back later.

Monday, September 12, 2011

Appointments, School Work, and Birthday Cake

Today has been very busy for Noah and I. We started off the day by going to the hospital to have a blood draw and dressing change. The blood draw was easy because they used Noah's PICC line. So that meant no additional ouchies in the arm. I also asked if they could change the needleless injection caps on both lines so I wouldn't have to do it myself. They said they would do it for me on Mondays. I said, "touchdown". That is one less thing I will have do deal with. I do however have to do them on Thursdays but I will take what I can get. We then went to have Noah's dressing changed on his PICC line. This is a very detailed and tedious procedure. It hurts him mainly because of all the tape. I am not allowed to do this because it can cause an infection if done inappropriately. I am also happy I don't have to do that either.
We then went back to the Ronald McDonald House to eat, do school work in the room and play in the play room. While Noah was in the play room I took a little nap. We then ate a nice dinner that a group brought in for the whole house. It was very good and we enjoyed it so much. It gave our friend Elizabeth and her Mom a break from cooking for us. We also had a fun treat and celebrated a birthday with one of our friends here at RMH. Her name is Lisa and her daughter made her a cake. We sang to her and it was fun.
I am including some pictures of Noah leaving the hospital, Noah at the RMH, Noah and I eating Lisa's birthday cake, Lisa's birthday celebration (Lisa is in the middle with her daughter on the left & our other friend Rachel), and our pharmacy/medication table in our room. Thanks again everyone for the prayers. It has been tough getting used to this new schedule. I am still needing a lot of sleep. Hopefully soon I will get used to all that I have to do every day. Noah is doing great and improving every day. Love to you all!


The Sleepless Nurse

This is a very quick update. I am sitting here waiting for the 15 minute IV med to be complete so I can finally go to bed. Being a nurse is not fun for me I must admit. There is a reason I didn't decide to be a nurse and this has confirmed that choice.
Noah is doing well and enjoying his time at the RMH. We have an appointment in the morning for a blood draw and dressing change. I am glad there are some things I don't have to do. Noah's incision looks so good now that the stitches have been removed. He is walking around and acting like his "normal" self. There are still some things he cannot do yet like go up and down stairs and run around really fast. Today he went to the play room at RMH. He played some games with the volunteers and went to the kitchen to make cookies. I think he had a great time. One of my friends at the house has a 16 year old daughter and she was able to play with Noah for a while so I could take a short nap. I am getting almost no sleep at night because of his medication schedule. It is crazy. I finish up about 12:45 and I have to be up by 6AM to start again. I am discovering that I will have to take a lot of power naps during the day in order to maintain being a "sane" Mom. Please pray for me about all of this because I am having a hard time winding down enough to actually fall asleep. I am very stressed about messing up his medications so that is all I can think about. Again, I am not a nurse so this is stressful for me.
Please also continue to pray for Adam and the girls. Adam has had to be a single parent and it is a lot of work. He is being a trooper and I know he appreciates all of your prayers. Well, that's all for now. I hope to have time tomorrow to add more information and some pictures. Love you all, Robin

Saturday, September 10, 2011

More Good, More Disappointment

Hi Friends,

Please forgive a long gap in the blog. We are often encouraged and humbled to hear friend say, "We check the blog first thing each morning!". And when we cannot post for awhile, I know that is disappointing to you. Thanks for understanding.

The good news is that Noah's health continues a positive trend. To my (Adam) understanding, he hasn't had a fever for a week now. That is an answer to prayer.

The other good news is that last night (Fri), Noah was discharged from the hospital and moved to Robin's room in the Ronald McDonald House! The doctors considered moving him to Emory Univ/Egleston Hospital in Atlanta, but that would require us to charter a medical bizjet flight, (he cannot fly on an airline and insurance won't cover a private flight) so for now, he'll stay 5 blocks from the hospital in the RMH.

You all know how hard Robin has worked through the past 9 weeks. (I'm so proud of her!) I'm asking you to pray even more for her, as her workload will now double with Noah's move to the RMH. Not only will she provide his nursing 100% of the time, but she'll also have to cook his meals (in the RMH kitchen) and administer his 5 medications several times a day (via his I-V PICC line). The latter has required Robin to receive hours of training- how to correctly mix his medications and hook them up to the I-V line. Please pray that she'll get the hang of it quickly and all the meds will be given on schedule.

We've been holding back some disappointing news, in hopes it might improve (but it hasn't). About 10 days ago, we were informed that Noah would not be allowed to move from Palo Alto until his antibiotic course was complete (on Sep 27th). That was a big blow, as we'd been led earlier to believe we would be allowed to take Noah home and get the last few weeks of meds at a local hospital (or in the home). Then, this week, Robin was told by ID (infectious disease) doctors that they plan to extend his antibiotics course 2 MORE weeks- until October 11th! That, I'll admit, was a heavy blow to our family. Just when we thought we were seeing the 'end of the tunnel', it got extended once more. As it stands now, Noah has an appointment with these ID doctors on September 28th, and at that point they will determine how much longer he'll stay in California.

Thank you again for reading and praying for us. We've gone through many ups and downs in the past 2 years, and I must admit it's hard not to throw up my hands and cry out "Why, Lord?". And then I consider dear friends, neighbors, and church members who have experienced the sudden loss of family members, the loss of jobs, the loss of houses to fire, etc. It is tempting to say "Where are You, Lord?", and I have done that. But we must choose to deny the feelings of loneliness (because He promised to never forsake us) and choose to believe He is there when we don't see Him. I'm reminded that Psalms 46 says "Be still and KNOW that I am God." Interesting that this doesn't seem to address how I feel. And Proverbs says "Trust in the Lord with all your heart and do not lean on your own understanding."

Thanks for letting me share some transparency; please pray for us as we struggle with the disappointing time line.

Thank you, friends;

Adam

Wednesday, September 7, 2011

Sadness & Stitches

(I started the following post yesterday but didn't get around to finishing so here we go...)-Today was good but also a little sad. I have to say I was sad this morning without the rest of my family. We had a good time but it is hard to say goodbye. Hopefully it won't be for much longer. Below are some pictures of the kids over the weekend.
When I arrived at the hospital I found Noah laid out on the couch asleep. I was shocked until the nurse told me he woke up very early this morning and began playing. She said, "He was lying there playing his harmonica and then fell asleep. I thought it was so funny. The harmonica was lying next to him on the couch. Below is a picture of the way I found him when I entered the room. He did well all day long except for the removal of his stitches. I felt so bad for him because he just kept saying, "Are you done yet"? They are all out now and everything looks really good. Noah is walking around very well. We pretty much go anywhere we want and are able to do most things. He loves going to the playroom every day. It is so good to get out of our room and do something fun.
(Today 9-7-11) Noah did well again today. They decided to change the position of his feeding tube and it did not go as planned. They were going to just move it from the intestines up to the stomach and he got sick and the whole thing came out. They were planning on giving him another one and Noah freaked out. We decided we could at least give him a break because it didn't need to be in until the night time anyway. After much discussion we decided to try and give him his meds and feeds orally instead of through a feeding tube. We figure we might as well try and then if it didn't work we could try for the tube again at a later time. I will let you know what the outcome is but in the mean time you all can pray he eats enough as well as keeps it all down so we don't have to get the tube put back in. Noah also had a CT scan today, better known as a "lung profussion" scan. This is routine and will tell them how the blood is flowing through his lungs. Basically they are trying to see if the blood flow is even in both lungs or if one has a higher flow than the other. Earlier this morning they did an Echo-cardiogram to see if there has been any change in the vegitation in his heart. They said that it is the same, no bigger or smaller. When I left tonight he was tired but in good spirits. Blessings to you all! Thanks for your continued prayers.

Monday, September 5, 2011

Happy Labor Day

Happy Labor Day, friends.

We've had a nice weekend here in Palo Alto. Noah has been in relatively good health and excellent spirits. Olivia and Madison's presence here has clearly made a positive change to his demeanor.

Yesterday was a day of success. Noah ate and drank throughout the day and wasn't sick one time! We had limited success with intestinal issues (which is good), but please keep praying for improvement there.

Many of you know how hard Robin has worked this summer. It has been a virtually non-stop nine weeks for her; caring for Noah 16 hours each day, then slipping back to the Ronald McDonald House at night for short hours of sleep (plus laundry and the blog). Our visit this weekend allowed me to "cut her loose" and get some time away. She and each daughter spent time alone shopping, eating, and going to Starbucks; and I think she even got 9 hours of much-needed sleep each night! Yea, Robin!

Olivia and Noah spent much of the day together yesterday, going on walks, playing games on my work iPad, and doing crafts in the hospital's "kids' room". Around 4pm, I sensed Noah was tired, so we turned off all the "electronic media," put Olivia in bed with Noah, and guess what? - 2 minutes later we had 2 kids fast asleep! After 90 minutes of sound sleep, they woke, Noah got his 2nd daily dose of antibiotics, and we headed to the cafeteria for dinner. Dinner was a smorgasbord of Mexican food from a local restaurant (Noah ate fish tacos), authentic Japanese food sent over by "Miss Junko" (Elizabeth's Mom), and Grammy's chocolate chip cookies. Once again, we are humbled and grateful for the wonderful support friends and family everywhere are providing us...including yummy meals in both Palo Alto and Statesboro!

Today, Noah is having a pretty good morning; no sickness so far. He and the girls grabbed coloring books and headed down to the cafeteria for a walk and a sit in the sun. I'm due to join them (shortly) before packing and heading to the airport for our return to Georgia (this afternoon). So, I will sign off.

Clearly, we are getting through this only by the supernatural intervention of a limitless God. Great thanks to many of you for praying!

As soon as we learn anything about a possible transfer to a Georgia hospital, we'll share that with you.

God Bless each of you-- Adam

PS. We'll try to add some photos later today.

Sunday, September 4, 2011

Labor Day Visit




Hi Friends,

We are well into our ninth week here in California. To take advantage of the 3 day weekend, the girls and I (Adam) flew out for another quick visit. It had been three weeks since our last visit - which seemed like an eternity. Although the flight out was exhausting (we finally got to bed around 5am 'body time'), it was great to see Robin and Noah again.

As you can see from the photos, Noah appears to be healing well. He's gained some weight and he walks and jumps around in a fashion typical of a 7 year old. Having his sisters here today put many smiles on his face and encouraged him towards activity. We even had to tone things down a few times.

Unfortunately, a few cautions still remain. A slight fever (99.8) keeps rearing its ugly head each night and despite some good food intake today, he emptied his stomach just before we told him "good night". The vegetations in his heart have not grown, but they are still present. He's still having many stomach and intestinal issues.

On the bright side, discussions continue on the "going home plan". One of the surgeons told me he plans to remove Noah's sternum stitches this Tuesday (3 weeks after the closing). At that time, he and Dr. Hanley will decide whether Noah should stay here for the remainder of his antibiotics course, or if he can be transferred to a hospital in Georgia.

Whether it's work, rest, or fun; we hope each of you has a wonderful Labor Day weekend, full of God's blessings. Again, may God bless Dr. Hanley and his staff here, and all of y'all who continue to support us with prayers, meals, gifts, and taxi services!

for His glory,

Adam

Friday, September 2, 2011

Which Floor? Men's Shoes, Ladies handbags...

Today has been so great! We reached many mile stones and I can't wait to tell you all about them. The day started off with Noah taking his first real bath in a bath tub since surgery. It is so great to have a clean boy. Sorry that I will not be including any pictures but Noah had to draw the line on those photos. Ha ha! He then put on his own clothes instead of hospital PJ pants and shirt. He was looking pretty good and more like himself. Since he was taken off of his feeds for the daytime we were then able to visit the library and playroom with nothing but a telebox. It is a box they hook up to him that reads all of his stats such as blood pressure, oxygen sats and heart rate. It was amazing to only carry around this small box that is a little bigger than a walkie talkie instead of dragging around a pole filled with pumps, medication and beeping monitors. We visited the library first where this nice lady, Vivian, helped Noah read, "The Cat in the Hat". What is so neat is the book was written in English and Chinese. Noah read the English part and Vivian, who is Chinese, read the Mandarin part. She made a fun game out of it and seemed to really enjoy it. We are planning on going back tomorrow to finish reading the book. After we left the library we went to the play room where Noah was able to play Donkey Kong on the Wii.
After lunch we got permission to leave the floor. We left the room with nothing but the feeding tube that is in Noah's nose. It was so amazing to be able to go where ever we wanted to go. We walked down the hall and got on the elevator (thus the title of today's blog) and got off on the second floor. We walked into the CVICU to flaunt our freedom to all our former nurses and doctors. We saw several and they were so thrilled to see Noah out and about. As we left the CV area and made our way down the hall we ran into our hero, Dr. Hanley. We were so excited to see him. I saw him and said, "Oh Noah, there is Dr. Hanley". Noah got a big grin on his face and Dr. Hanley shook Noah's hand. It was so wonderful. We stood there for a little while and discussed the possibility of transferring us closer to home. It is still not a done deal but a least they are talking about it. After the discussion I politely asked Dr. Hanley if I could take another picture of he and Noah together since Noah was doing so well now. He agreed and so thus another wonderful picture for Noah's scrap book. Okay everyone, you can wipe your eyes now. I know, I need to wipe mine right now too.
Noah and I then took the elevator to the first floor to walk in this lovely patio/flower garden area. It has a nice fountain and lots of pretty flowers. It was so nice to be back outside again with Noah. We then made our way back to elevators again and went down to, "G", as Noah puts it . It is where the cafeteria is located. I told Noah he could get whatever he wanted to eat. He decided he wanted some grapes. We paid for our food and went out on the patio area to eat them. Again, it was so nice to just be sitting outside and enjoying the weather. I could tell he was starting to get tired so we made our way back to the elevators and up to the third floor. We went to his room where he sat in the chair and then fell asleep in eight minutes or less.
The remainder of the day went well also. The only thing I am concerned about at this point is his temperature. He had another low grade fever tonight. I really hope it has to do with something like the weaning of his medications or something of that nature. The doctor that came by tonight said if it goes up a little more then we will need to send off some blood to have it cultured. I am fine with that because we need to stay on top of anything that seems suspicious. I would rather catch something that is a potential problem early rather than later. Please continue to pray for this aspect of recovery. I know the prayers you all are saying for us makes such a difference. I am convinced that there is no way we would have encountered Dr. Hanley today if the Lord hadn't arranged it. If we had arrived at that spot one minute later we would have never known he was even there. Thank you Lord.
That's all I have for now. I am about to drop from exhaustion so I am going to bed. Love you all!!!

Thursday, September 1, 2011

The Good, the Bad and the Funny

This day was filled with mostly good that was sprinkled with some bad. Do you want the good news or the bad news? Well, lets just start off with the good...
Noah walked around two times again today and visited the play room. He also ate some good food and kept most of it down. He really wants to eat so much but his body just can't handle food in large quantities. He keeps most of his food down throughout the day. Some additional good news is that he is getting rid of what is called the TPN and the Lipids. This is like vitamins and food going through his PICC line. They are also going to go down on his feeds (Pediasure) for the day. He is only going to get those at night. Overall he is progressing well.
Now, for the bad news...
When the doctors were rounding this morning I stepped out on a limb and asked, "Now, when do you think we might be discharged"? The doctor informed me then and there that it would happen when Noah finishes up his antibiotics. He will finish the antibiotics on September 27th. I will admit that I was totally shocked. They had told me throughout all of this that it was something could be finished up with a home health nurse at home. I was not prepared for this and again almost threw myself on the floor and started kicking and screaming. He basically said it was up to the surgeons to give the final answer. While at lunch later I thought I would at least bring up the idea of being transferred to Atlanta, Savannah or even Statesboro. The nurse said she was pose that question to the doctors to see if that might be an option. I haven't heard anything yet but will let you know what they say. Please pray for us. This has been a pretty hard blow for our family and we need to be prayed through it. I know that God can carry us through it. He has been faithful so far and I know He will not let us down now.
I want to say a HUGE thank you to all of you who have stepped up and helped our family in many different ways: prayers, hugs, food, gifts, calls, taxi driver, dog catcher, card sender, clothes washer and much, much, more. We love you guys and pray God will bless you for it all.
Just to lighten things up a little, Noah and I made a "Laughing Video". Here goes...

video