HERE WE COME!!!

Drew will finally be discharged this Friday!! We have an awesome team working with us, and they've made it all possible for us. He'll be on continuous feedings through his GJ tube; aside from 2 hours a day that he'll get to have a break. He's also still on a few medications. The prevacid he will be on for at least a year, but the other two we can wean after we're home.
Somehow all of us overlooked his immunizations, so he got three shots of them today. He also got his central line removed, which was not pleasant in anyway, but at least he's free of that.
We're planning on staying at my grandparents for a few days and going home to Huntington Sunday night. Ryan will be up Friday morning. We are so excited to be able to be together and have BOTH of our little boys with us!!
There are still things to work on and lots of Dr appointments in our future, but Drew is doing great. He is very happy most of the time and it's been an amazing journey with him so far.
I cannot sign off from this experience without acknowledging our Father in Heaven and the many blessings we've been given through this time. Words could never express my feelings completely. I know that we are all children of our loving Father in Heaven. I know that we are here on this earth to gain bodies and to learn so that someday we might return to Him and become like him. I know more and more of the power of the Atonement of our Savior, and am amazed. I know that there is a plan for me and each of my children, and hope I can become the daughter that the Lord would have me be. I am grateful for this experience and especially for all those who have been a part of it with us.
A special shout-out and thanks to our Primary nurses: Sarah, Laurel, Whitney, Tristen, and Gail. Thank you so much for your love and care for Drew. Your touch and care are appreciated so much. We've had a great team of Dr.s, nurses, NNPs, dieticians, and the surgical team. A big thanks to Dr. Barnhart, Drew's surgeon, as well.

Andrew is doing great! He is at full feeding amounts now and has only a little bit of IV nutrition that is necessary to keep his line from clotting. They will probably switch the two medications to oral versions and remove his line tomorrow. He is so close to going home that they don't want to risk having an infection from his line. (He's already had two infections from lines.) As you can see he is a very happy kid. He loves having familiar faces around. He behaves best for his primary nurses and his mom. This morning he was very fussy, but when Mom came he was just fine and started smiling at everyone again. He is still on fentanyl (pain med that we're weaning), that is currently given every 3 hours, and ativan (which helps him be calm), every 12 hours. He can come home with the ativan, but we'll need to get rid of the fentanyl. The plan is to stretch the amount of time between doses every-other day. He still spits up, but not as much or as often as he was last week. We're working with him to decrease his gag reflex as well. He even took his pacifier twice yesterday. He did eventually gag and wretch because of it, but he liked it while it was in. That's huge progress for him to have in it at all since surgery.

Tyler spent last week in Ferron with Ryan. I missed him so much and was happy to have him with me again Friday. Grandpa Mel heated the pool and we went swimming!! He loved it as long as Grandpa or I held him. He didn't like when we tried to put him in his floater. He really liked watching other people swim and trying to splash them. He would giggle every time he got splashed and when he tried to splash them back. He's also learned to sit on the edge of the pool to put his feet in. He loves it, although it makes me soooo nervous. He's really not afraid of much, and will try everything. Good luck to Ryan and I keeping track of him this summer. :) He runs very well now too.

Hopefully Drew will be discharged one of the first days of June. I'll probably stay north for a few days for my family to see Drew and then we'll finally ALL head HOME.

Home soon!!

Drew has still been struggling with terrible reflux. His stomach is very small and he's not been able to handle the extra volume needed to stretch it. We had a test done this week to see how big the stomach is and how much reflux he had. After looking at the results our surgeon decided that he was in need of another surgery to stop the reflux, but his stomach is too small to do the procedure. So Drew will be getting a GJ tube put back in (a tube into his stomach that has an extension to his intestine), hopefully this afternoon. Then he will start getting fed straight into his intestine and once he's weaned off his pain med we can go home!!
He will be fed by a pump into his intestine, but we can also work on feeding him by mouth while he's home. Then when he's bigger and his stomach is bigger he will have the other surgery.
The surgery is called a fundoplication or nissen. The top of the stomach has a piece higher than where it meets the esophagus, and they will take that piece and wrap it around the esophagus and sew it to itself. It will stop his reflux. The down side is that he may not be able to burp and he will not be able to throw-up. The surgery is non-reversible. But Drew will be much more comfortable and will be able to grow and develop normally once he can hold his food down, so it's best to have the nissen.
We're not sure how long it will take to wean the pain med because it all depends on how Drew tollerates it being taken down, but hopefully not more than a few weeks.
Here we come!!
Tyler turned two yesterday. We just had a small party, but Tyler really enjoyed it. I sang Happy Birthday to him when he woke up in the morning. He went upstairs to find Grandma singing, "Happy you. Happy you." He is amazing, and so cute.

Tyler and I went home again this weekend for a few days. We took Tyler to the park Monday night. It's amazing how fast he is learning and growing. He's always been somewhat fearless, but it's getting even more so lately. He loves being outdoors.

Drew is making progress. It feels very slow for Ryan and I, but slow is good for Drew. He's up to 14 cc's an hour on continuous feeding, which is about half of what he'll need. He's also cut his pain killer dose by half and continuing to wean every other day. He's been much more alert and pleasant without so many drugs in his system.

He still hasn't been very interested in sucking. The therapist and I have been working with him, but with minimal success. Today Kiley got permission for us to try breast feeding to see if he'd be more interested in sucking. He took to it very well. He only tried for a few minutes before he fell asleep, and ended up spitting up because of the extra fluid in his stomach, but he enjoyed it and we're so pleased that he did it. We'll keep working on that. The plan is to continue decreasing meds and increasing feedings through the G-tube and work on oral feeding. We're hoping for just a few more weeks.

Food

Drew passed his esophagram this morning!! Which means he has healed enough that his esophagus doesn't leak, and he can have food. He got to have his crib back today. (He's been in a warmer for the last week). And they pulled the tube from his nose. He is currently on 4.5 mcg/kg/hr of fentynal, which is his pain med. He gets ativan every 6 hours and started prevacid today.
I helped give him a sponge bath this morning and he cooed at me quite a bit during that. Afterward, though, he was pretty tired. He slept a few hours, and then we were given the go ahead to try and feed him by mouth. His care team and I were so excited!! We got him out of bed and this is how is first attempt at feeding went:

So we decided to let him rest some more before trying to feed him. The surgeon came and talked to me and said that he should start back on G-tube feedings, starting at 4cc/hour continuous and work on oral feedings when he's up to it. We tried to feed him again, but he didn't want to even suck on his pacifier. Probably his throat and chest are too sore still, so he is avoiding using those muscles. We'll try again tomorrow. Once he's done well from a bottle a few times, to make sure he can suck AND swallow, then I can start trying to nurse him.

He will have his chest tube in until he is getting half of his full volume for feeding. That will probably be Wed/Thurs this week with the G-tube.

He'll slowly be weaned on the fentynal as well.

His requirements for going home are the following: maintain body temperature-done; maintain oxygen saturation-he's on oxygen for now, but will probably be off in a few days; take full feedings; and gain weight.

Progress

Andrew spent all week paralyzed with medication. The nurses watched his heart rate and blood pressure for signs of pain/agitation. Because of the effects of surgery and not being able to move he swelled a lot!! From Monday to Thursday he gained more than one and a half pounds!! Friday the surgeon gave the go ahead to let him wake up. We expected only a few hours before his toes and fingers would start wiggling, and for him to start breathing over the ventilator. They stopped the medication at noon and by six o'clock nothing had happened. Finally I started to rub him to see if I could stimulate a response, and found that if I rubbed the bottom of his feet he would move his toes. By 9 pm he had started breathing a little. Yesterday he was able to move, but would only do so if you touched him. They weaned the ventilator some, and Andrew met every decrease by breathing more on his own. Last night he opened his eyes for the first time.
This morning he was extubated (no longer on the ventilator), and the swelling has reduced dramatically. He's had some fluid in his lungs, due to surgery, and now that he's awake it's starting to loosen. While on the ventilator they were able to deep suction the fluid from his airway, but now they cannot for fear of getting the tube into his esophagus and disturbing the repair site. He was having a hard time with all the fluid this morning. Being intubated makes your throat very sore and he has the pain from surgery, so he doesn't like to cough or even cry. The respritory therapist will be working with him today to encourage him to cough when his airway gets too full, and hopefully he'll have it cleared out tonight so it won't be so hard on him.
Tomorrow he will have a dye test to check if the esophagus has healed enough to prevent leaking. If it goes well he will start feedings into the G-tube. Dr. Barnhart said we could start trying by mouth, but I think I'll ask them to wait becuase he is so sore still. If we tried now I think it would not be a pleasant experience for him.
It's difficult to see him struggle and have to deal with so much discomfort, but we know that it will get better from here and this was the only way for him to truely thrive and be able to come home.
Sorry that the website hasn't been letting you post comments. I'm not sure why, but went through all the settings so hopefully it will be better now.