Disaster Averted!

The story of our life!!! HOSPITALS. I think after everything settles down, I will hate hospitals. I don't like them already, at least, I don't like being in them. I appreciate them and the wonderful, yet sometimes not so wonderful, doctors because they have saved my son's life over and over and over..... again.

We left the hospital again on Wednesday night, because they can't ever seem to have the paper work done by the time I arrive. I even take my time because I know they will take their sweet time and I don't really have any reason to be there early. So anyway, we got JW home on Wednesday night. He did great Thursday and Friday and then on Saturday he started having one of his choking spells, where he cannot exchange any air in or out of his lungs. He basically chokes on his secretions. So, Saturday we ended up racking up some more miles on the AirLife helicopter. This time was different.

So we have been faced with these 'difficult' decisions about which I promised I would elaborate on at a further date in time. Well, I guess, now is the time.

In talking with the doctors after JW had been in the hospital every single month since November 2009, we came to the conclusion, we had to do something different, something else other than what we were doing because it obviously was not working.

We had a couple of options: #1 put a trach (tracheotomy) in to help him have a clear-er airway to breath and possibly prevent some of the hospitalizations. #2 Do not put a trach in and walk in a slightly different way than we have been. So, we looked at all of the options, we talked with doctors, A LOT of doctors, and came to a conclusion. JW has severe scoliosis, not only is his spine curved in more than one direction, his rib cage has shifted, or rotated so pressure is being put on his left lung causing it to barely be able to function, if at all. Because of the severity of this, there is no way, surgically or otherwise to fix it. It will only get worse. He basically works hard for every breath he takes. Breathing takes a lot of calories and energy for him to do, so there is not a lot of extra energy to help him grow. We have seen a slow or almost halt in his growth due to that reason. Also with all of the horrific events we have encountered over the last 9 months, he has had more injury to his brain. With each illness that may cause lack of oxygen, his brain gets injured also. There is definitely more to the story, but that basically sums it up. We don't see a long term benefit to the trach besides being on a ventilator that breathes for him, but that is not what I feel led to do for my son. We have elected to not intubate in the event of an emergency so his life will most likely be shortened by avoiding the traumatic events that his poor weak body would otherwise incur. I have prayed and prayed over this decision and I feel this is the direction in which God is leading me. I am at peace within myself with this decision and believe it to be the right one for JW and our family. I also feel that whatever happens is God's will and is His hands. Now having discussed the hard decisions we have made, on to this emergency on Saturday. I praise the Lord and thank him so much and everyone who has been praying for JW. I sent JW on the helicopter with a paper that says "do not resuscitate" along with some other fine print. I did not know what was going to happen but the Lord was with me and him as I sent him with the EMS team. We got a phone call that he made it to the hospital and was doing ok. I was not allowed to fly with him this time. We arrived and to my surprise, he was doing great! The little guy made it through, I was amazed and thankful because normally he would have been put on a ventilator almost immediately. Now we are a few days in to this hospital stay and he is doing wonderfully, weaning down off of the oxygen to his normal regimen. Hopefully, he will be coming home soon! AMEN!! My grandmother never liked the name James, I don't think I have ever blogged on his name, but after he was born and taken to Santa Rosa's NICU in San Antonio, we were filling out his paper work for birth certificate and such and Wacy was coming up with names that I DID NOT want for sure. He finally came up with something that I was agreeable to and at that point I was in so much pain and just wanted to sleep, I didn't really care what we named him, but I am glad we named him what we did. So back to my grandmother, my Nana, she has I said before, doesn't really like his name but not much she could do about it but call him whatever she wanted. She says that we ought to call him Will, because he has such a strong will. I agree with her on the strong will part but I am kinda partial to JW now.

Last but not least: Because of the recent changes to his plan of care, I am planning a birthday celebration on August 21st. We are celebrating the wonderful gift God has given to me and our family, since we don't know what He has in store for our future, we are hosting this party a little bit earlier than his birthday which is on Sept. 16., one day after the best girlfriend in the world's birthday. We won't discuss that one, it's a BIG one.

I would love for anyone to come and celebrate with us on

August 21, 2010 at 3pm at our house in Uvalde.

I ask that you PLEASE do not come if you or your children are sick. Sorry but we are extremely germaphobic, considering. Email me for further details at allie_78@hotmail.com.

Lord willing, we will be having a celebration for this beautiful baby:

As I Type...

Right this moment, Allie and nurse Chris are waiting at the hospital to bring JW home!! Thank you to everyone who continues to be so faithful in lifting up our little man to the Lord for healing. Allie and Wacy still may be facing some big decisions regarding his care in the coming weeks, so please, please, please be praying for them. They need discernment, guidance, and absolute clarity from the Lord. They also need peace to rest assured the decision(s) they make are in line with God's will. Also, a big thank you to everyone who sent emails, posted FB messages, and left comments on the blog. Your kind and encouraging words mean so much! We are so thankful to have each of you in our lives and even more thankful that you are praying for JW and the family. We love you all and are so grateful for the love you return to us! And now for the bonus...I snapped a few cute smiley photos of JW from my early summer trip to TX and thought it was about time for me to share them!

-JW's Aunt Lindy

He loves his toy!



Watching Chris blow a bubble

Wow, March, April, May, June and July, plenty of hospital time for this cute little boy. Thank you to everyone who has kept him in their thought and prayers, we all needed a little lifting up to the Lord.



So, JW, aka, the cutest little boy ever, is currently in the hospital again!!, as many of you may know. He has had trouble with his respiratory system since November, whether it be a mucus plug or just a small cold, he has been through the ringer, poked and proded over and over again. But he still remains his happy little self, just smiling and giggling at all who love him and are around him. I think he has been the only one since September 16, 2008 that has kept on smiling and kept everyone else smiling. I am posting a picture of him taken Wednesday and I just ask for your continued thoughts and prayers as we are having to make some very difficult decisions over the next week concerning his care and managing his health in the way God has guided us to. We are at a fork in the road, where we will have to choose a little different plan of care for him because of his continued illnesses and extended stays in the ICU. Once we know more, I will post more detailed information on these issues, until then, I am just requesting some special prayers for guidance for my family and healing for JW.

This was taken on Aug. 1st, he was laughing at Tristin, alot! She was dancing and singing to him and even read him a book. We wore him out by the time we left.

Hey guys! Wow, the last title on the blog continues to be true. We are going on four weeks in the hospital!! ahhh. Nothing serious though, he is just taking FOREVER to wean off the oxygen. He is doing great other wise.

On Thursday morning, JW will be going into surgery for a port-a-cath. This is a small surgery that will only last about an hour, but will be under general anesthesia and be put on a ventilator with all specialist at hand. This port will help with medical emergencies and blood draws, etc. so he will not have to be stuck a million times only to not get an IV. To check out some info click the following: http://en.wikipedia.org/wiki/Port_(medical

We are currently on 2 1/2 liters of oxygen we still need to come off of that and recover from the small surgery and we'll be able to come home! YAY! It's been so long, poor little boy. He does however, get a lot of attention from the staff in the PIMC unit. They fight over who gets to take him for the shift.

Here are a few pics.. one includes JW's nurse Chris, who is wonderful and so special to our family. She was able to go with us one visit. Not leaving out other wonderful nurse out, Crystal is also awesome and very special to our family. but she has not been able to go with us yet. It's her turn next. Enough talk, here are the photos...

The Longest Stay

Hello to all again.


Just to update, JW is still in the hospital, today marks two weeks. Over the weekend he was starting to flair with his respiratory issues. He was on 2 lpm of oxygen but they had to increase to 4 then 6 lpm. He has been on 6 for the last few days and holding steadily. The xray showed some haziness that they believe to be the bacteria coming back that was supposed to be taken care of with the antibiotic. The bacteria is called pseudomonas, you can find some info at this website that might explain a little more. http://www.healthscout.com/ency/68/471/main.html


He is doing wonderful oftherwise, laughing, smiling, just a real joy for the nurses and child life staff. Here is a photo I took of him on Tuesday...
Sorry its a little blurry, took it with my phone.

He is getting so big, thank you everyone for your prayers, thoughts and encouragement. He is such a blessing to the world, especially his family.

Allie

will update as we progress

Look at our blessing!

So here are a few recent pics. We are in the hospital again, but should be coming home soon. Just wanted to post these, update tomorrow.

EMERGENCY! Call 911.

I never in my life thought I would have to call 911 for anyone in my family much less one of my own children. But as life has it, the EMS staff definitely know who we are by name. Lately JW has been having trouble with choking on his secretions that he can't swallow when he gets really upset. We had this in Nov. Dec and now in Feb.
On wednesday, I think, ( I am not even sure what day it is today) JW had one of his episodes and starting to lose oxygen with my nurse Crystal while I was shopping for something for dinner at HEB with the older two kiddos. I was talking with her and Chriselda, my other nurse, and things were getting worse, so we had to call 911. He was doing good when they got there but we sent him on to San Antonio because we weren't sure what was going on. Apparently during the flight he stopped breathing and they had to intubate so when we arrived at the hospital he was much worse than I was thinking.
He is doing much better now they are soon looking to take him off the ventilator. Today he was awake but still kind of groggy but looking much better.
JW has been growing and doing so well at home, he is just such a joy in our lives, a joy that I, with the help of my nurses and family, work very hard to have. I just want to let my wonderful nurses/family, they are basically family now, that I appreciate everything they do to help me keep my child well. I saw a little something at the hospital gift shop today, buying something for JW for valentine's day, that said "Nurses are Angels on Earth" and that is so true.
Thank you to everyone for all of your thoughts and prayers sent our way, they are greatly appreciated. I just felt like blogging a little, I will return soon with an update on how our little guy is doing and a few more specifics of his condition. God Bless!