The Good & The Bad

Today's highpoint was the return of James' smile! It hasn't made an appearance since he went in for surgery nearly 3 weeks ago. It was so great to see him smile...it even made me cry, but I blame that on the pregnancy hormones.

James has been taking anywhere from one-tenth to one-fifth of an ounce at each "feeding" with speech and occupational therapy this week. He had to do a swallow study today to see if he could be released to eat at home. The swallow study takes a bunch of x-rays of his mouth and throat while he eats to make sure that all the food is going down the right pipe. They tested him on formula and on solid foods (rice cereal & applesauce). He failed with the formula...it went down his airway and he didn't cough it back up (he has a weak gag reflex from all the tubes in his mouth as a newborn). So we aren't allowed to give him any bottle feedings at home. He did pass with the solids, so we can give him baby food at home. James will have to repeat the swallow study in one month to see if he passes with formula then. The speech therapist says that eating solids will help build his swallow strength (he has a delayed swallow with liquids). What really sucks (sorry, but it does) is that he can't get off the J-tube until he's up to 32 ounces of formula per day and he can't improve his bottle feeding skills if he's not allowed to take a bottle. It's disappointing because I was expecting him to be "all fixed" after surgery, but we still have a long road (and a lot of tubing) ahead of us.

The best news...James is scheduled for discharge on Monday!

Food, food, food

James is really hanging in there. Each day the therapist comes to feed him, he eats a little more than the time before. Today they're coming twice so he can get even more practice. They are also probably going to try spoon feeding soon to just to make sure he can handle that before he goes home. This morning he drank about a quarter of an ounce. It may not sound like much, but they are impressed by his progress. They typically like babies to be able to drink a third of an ounce before they go home...James is almost there!

James is off all of his IV meds. All of his meds now are through his J-tube. Hopefully he'll be able to get his last IV out soon and have one less thing tying him down.

James and I were able to go for a walk around the unit this morning in a wagon (James was in the wagon...I pulled it). Then we went to the playroom where James watched the fish swim around their tank. He really seemed to enjoy getting out of his room, but it wore him out pretty quick. We're back in his room now for a nap and then it will be time for him to eat again!

Good Days

James is settled into his regular room now and doing a good job. I've decided that he just didn't like the purple walls in the ICU. Now they're green and he's happy. He is still on oxygen and therefore on a monitor. Once he's off the oxygen for a day or so then he can get off the monitor. He should be able to go home soon after that.

James passed his dye study yesterday!!! No more NG tube! He also got to eat from a bottle for the first time today. He did a pretty good job for never having done it before. Once he shows that he can suck, swallow, and breath all at the same then he can go home. He will get the rest of his food through his J-tube. They have a daily goal for him and I can slowly decrease the amount through his tube and increase his bottle feedings. Once we're home, I'll start him on peas and squash and yummy stuff like that too.

I have a couple pictures below of his first bottle. I had him in regular clothes for awhile, but he's having some major explosion problems at the moment so we went back to the hospital gown until we get that straightened out. :) Enjoy!

Moving Day

James was able to move out of the ICU today, finally! He is in a regular room on the surgical floor now which means we get to eat in his room and talk on our phones. Oh, the perks of a regular room!

James is being weened off his oxygen. He'll probably be able to come off of it tomorrow. He is definitely starting to get bored and wants to move around more. If they do the dye test tomorrow (as planned) and he passes, then he will be able to get his NG tube out. This will mean that there's nothing him from going on walks. I think he will love being pulled around in one of the wagons they keep around here :)

James' surgeon decided to postpone the dye study until Monday. James is still on some breathing support even though he's off the vent and the surgeon wants him closer to his normal self before he does the study. Our surgeon also couldn't attend the study today and on Monday he'll be able to do it himself.

James got his central line out this morning and he's on full feeds. He still has 1 IV, but there's nothing running into it regularly. It's just used to give him pain meds as he needs them (every 6 hours or so).

James also got his chest tube out today! Much better! After that I got to hold him!!!! It was nice to just sit and talk with him in my lap.

The plan is to move him out of the ICU to a regular room over the weekend. We are looking forward to this because then Dave and I can both stay with him as opposed to just one of us. And it will be nice to see my husband some more too :)

A Big Couple of Days

Yay! James was extibated about an hour ago!! He is now on a nasal canula just to help him adjust to room air. He is doing well so far and resting now.

James has been on a fentanyl drip for pain and sedation since surgery. He is on a very low dose now and will be switched off of it later. He might go through withdrawal and have to get some medicine for that, but we shall see.

The dye study is planned for tomorrow. The surgeons will take out his chest tube and ng tube after the study. YAY! This means that after the study, James will be mobile. We'll be able to get out of bed and take him for walks and such. So exciting!

His feeds are being steadily increased so that he can get back to full feeds and off all of IV fluids by the weekend, hopefully.

Please just pray that everything goes as planned for the rest of today and tomorrow.

Still going

James continues to be slowly weened off the vent. Hopefully he'll be ready for extibation tomorrow. At this rate, we might actually make it out of the ICU this weekend...only a week later than planned. I'm not going to hold my breath though (I'm not on a vent to help me out).

He managed to wiggle around enough last night that his drainage tube in his neck came out. Surgery is not worried because it hasn't drained anything for a week. One less tube...yay!

James finally went #2 yesterday. His gut is still bloated, but looking better. He finally fits into a size 4 diaper again. He has been wearing size 6 since surgery because his belly was just so big.

James will be getting his Synagis shots today. After paperwork and a trip to the pediatrician's office, the vaccine finally made it here. "Just Say No" to RSV!

Crazy Days

I honestly don't remember what I post from day to day. I hope I don't repeat myself too much!

I'm not sure if I have mentioned this before, but James is in restraints so that he doesn't pull out any of his tubes. They usually work, but he is pretty good at sliding out of them when no one is looking. Yesterday around 4 in the afternoon, he made an escape. Unfortunately no one caught him until he had his vent tube half-way out of his mouth. He got it stuck partially out and it was blocking his airway completely. After about a dozen doctors came running in, they got the tube replaced. This little incident of his has probably set him back another day. Crazy little man!

Today James' pain meds are being reduced and he is being weened slowly from the vent again after his attempt at pulling it out himself. They won't try to extibate again until tomorrow at the earliest. He hasn't went number 2 since last Monday so the little guy is all bloated. They're going to give him some medicine to help out with that today. He had a low-grade fever last night so they sent off some cultures and put him on antibiotics just in case. It could just be a fever from teething, but they want to double check everything to make sure.

I think that's all for now. Have a good Tuesday...and Happy Birthday Aunt Julie!

Post-Op: 1 week

It goes without saying that things are not moving as quickly as we had thought they would. Surgery took twice as long as the surgeons originally thought it would (12 hours instead of 6), which translates to recovery taking twice as long as originally planned. Add that to the fact that James has never been in a hurry to do things on his own and we get our current situation: James still on the vent. The doctors tested him this morning and he failed, so he is still on the vent and will be until at least tomorrow. This means any hopes of the leaving the PICU are delayed by at least another day. I just miss holding and hugging my little man.

"Praise You In This Storm" by Casting Crowns

I was sure by now,God, that You would have reached down, and wiped our tears away, stepped in and saved the day. But once again, I say amen and it's still raining as the thunder rolls I barely hear You whisper through the rain, "I'm with you"and as Your mercy falls I raise my hands and praise the God who gives and takes away.

Chorus: And I'll praise you in this storm and I will lift my hands for You are who You are no matter where I am and every tear I've cried You hold in your hand You never left my side and though my heart is torn I will praise You in this storm

I remember when I stumbled in the wind You heard my cry to Youand raised me up again my strength is almost gone how can I carry on if I can't find You and as the thunder rolls I barely hear You whisper through the rain "I'm with you"and as Your mercy falls I raise my hands and praise the God who gives and takes away

Chorus

I lift my eyes onto the hills where does my help come from? My help comes from the Lord, the maker of heaven and earth I lift my eyes onto the hills where does my help come from? My help comes from the Lord, the maker of heaven and earth

Chorus

A Better Day

Thanks be to God! I'm not sure Dave and I could have made it through another day like Friday so he sent us a relaxing Saturday. James started doing much better after they got his vent all cleaned off Saturday morning. They were able to decrease his vent settings a few times last night and decreased his painkiller drip. He also slept through the night without his adavin (another painkiller) every 4 hours. Yay! We still haven't got the test results back for his RSV test, but I'm expecting it to be negative since he is on the vaccine. I'm still hoping he'll be off his vent by tomorrow (Monday) morning so that he can have his dye test as planned. The surgeon's won't do it unless he's off the vent. The dye test is to see if he can eat orally and he definitely can't do that with the vent in his mouth, so there's really no reason to do the test until he's breathing on his own. Here's hoping for another good day!

Saturday

Nothing went as planned yesterday.

The attending in the PICU thought James should be strong enough to just come off the vent without being weened...not so much. That idea crashed and burned and resulted in going back to full-strength vent settings. Frustrating because the weening was going well until that point.

James' hemoglobin was low and he's been pale so it was decided that he needed a transfusion. He got that last night. His color is much better today.

He is still pretty puffy from surgery so he got another dose of a diretic last night. His arms and legs are finally back to their normal size, but his stomach is still very tight. He hasn't had a BM since before surgery so hopefully that will happen soon.

His heartrate dropped overnight so they did an Echocardiogram to make sure everything was okay there. It is.

His daily chest x-rays have been looking good, but his chest tube is still draining fluid so there's no chance of getting that pulled soon.

This morning he was having really high CO2 levels in his blood. Eventually they found that he had a boogar at the end of his vent tube so he hasn't been getting the airflow that he needs. Once they got that cleared his CO2 levels have been improving and he sounds much better. But the attending wants to test his for RSV just to rule that out. He better not have it since he gets the vaccine every month!!!

Please pray for his health and recovery!

Friday...

Post-operation day 4: James is still being weened off the ventilator. The doctors expect him to be off the ventby the end of today. They're also backing off on some of his meds, hoping that it will help him come off the vent easier. James is still sleeping most of the time. When he's awake it's for very short periods of time (5-10 minutes). The meds make him drowsy and he can't really do anything with the vent still in anyway.

Dave and I have been taking turns staying the night with him...only one of us is allowed to stay since he's in the ICU. Hopefully he'll be strong enough for a regular room soon so that way we can have more visitors at once and we'll be able to eat and talk on our phones in his room. Thankfully the nurses are very understanding with the saltines in my diet right now and they don't really mind when I munch on those :) They even give me Ginger Ale when I need it.

Recovery Update

I didn't post yesterday because nothing has changed. James is still on the vent and sedated so that he can't move. The doctors wanted to give the esophagus a chance to heal before James wakes up. Today is supposed to be a different story. The plan is to lift the sedation today so James should start waking up soon. Once he's awake, they will start weening him off the vent. Once he is successfully off the vent for 12-24 hours he can be transferred out of the PICU to a regular room. Hopefully this will happen sometime tomorrow, but probably over the weekend. I will post as things change. James is doing well...just keep praying.

Beginning the Road to Recovery

James went into surgery yesterday around 10:45 a.m. and finished up at 1o:30 p.m. We finally got to see him after he got settled in the PICU (pediatric ICU) around midnight. It was a long day for everybody, but the surgeon was very happy with how things went. James did a great job and besides being a little pale, he looks great for having underwent a 12 hour procedure. For now James is being kept sedated and is still on the ventilator. It will take him longer to wake up from the anesthesia since he is sedated. The sedation is to prevent him from pulling on any tubes or disturbing his now connected esophagus while the sutures are still new. He will be in the PICU for a couple days, at least until he's off the ventilator. When he's stronger, he will get moved to a regular room on the surgical floor. James should be able to come home in 10-14 days.

Medical story: James underwent a gastric pull-up along with some other fancy Latin terms that I don't remember at the moment. The doctor was able to do the entire procedure laparoscopicly (no new incisions) which is amazing. They used the hole in his neck (where his esophagus use to come out) and the hole in his belly (where his g-tube was) to gain access to perform the procedure. They pulled part of his stomach up through his diaphragm and connected it to his upper esophagus just below his clavicle, so the connection is well protected under a bone. The surgeon put in a J-tube (similar to a G-tube except that is goes directly into the beginning of the small intestine) so that James will be able to get food that way soon. As I mentioned he is still on the vent and he has a chest tube, 2 IVs, a central line, the J-tube, an NG tube, and a tube in his neck for drainage from that site (plus all the monitor wires). Because of all these tubes (and for pain) James is being kept sedated for now. It's very important that he stay relaxed while his new esophagus is healing. Either Friday or Monday, the surgeon will do a dye test through the NG tube to verify that the esophagus is healed. (I was so excited to learn that this is a bedside procedure and won't require another OR trip). When the esophagus looks good, James can eat for the first time by mouth! His discharge will depend on weight gain and his ability to show he can eat.

I think that's all for now. Post questions about confusing points and I will do my best to answer. Again in the ICU, no cell phone calls, but we have the internet so please feel free to email! Thank you for all of your continued prayers. Praise the Lord!!!!

Surgery Tomorrow

Surgery is scheduled for 10am tomorrow morning. Please pray that it happens and that everything goes well. I will post an update as soon as we know more.

Teeth

At first we thought James had discovered his "pouty face." Then we realized that he just loves rubbing his tongue over his two teeth he has now. He sticks his tongue into his lower lip to play with his new bottom teeth. The first one came in Palm Sunday weekend and the next one a week later. What an Easter present! Hopefully after surgery next week, James can start using them!!! (I'll try to get a picture of them soon, but for now he never stops playing with them so I can't get a clear shot).

James' Secret