Another Procedure

Gabe went to the cath lab yesterday and things didn't go quite as well as planned. It turns out that his pulmonary artery is maybe shrinking? We know that it was larger several months ago and they thought it was 1mm and the plan was to put in a stent. It is only narrowing in the area where they reconnected the pulmonary artery. When they got in there, it measured only 0.6mm therefore, they weren't able to put a stent in. They ballooned it three times and got it to 2mm. Which means that we will be going back in about 3 months to try again. This has been hard for me and my Type A personality. I have to accept that this is more of a process and it is going to take time. This is a quick post, but I already feel that if I dwell on the bad news much more, I will start wallowing. Gabe is so healthy otherwise. The docs say that the heart function is great. So all in all, things are going ok. I will post more later. Thanks for the thoughts.

A New Kid

It has been awhile since the last post and things are going well. They kept telling us about an increase in his activity level, which we didn't see for about 3 weeks or so after surgery. Then, all of the sudden, this kid is EVERYWHERE! He runs, climbs, jumps, and moves at 100 miles an hour every waking moment. It is awesome.

We have been released from the surgeon, which is great news. We will see the cardiologist again in a month for another echo cardiogram. They say that he has pulmonary stenosis now where they connected his arteries. This means there is a narrowing in part of the artery. They think it is an easy fix in the cath lab with either a stent or a balloon. It sounds like they might do that early this summer. The doctors are very pleased with his heart function and his progress.

We are really looking forward to some warmer weather so we can start getting outside and doing fun things. We were able to meet up with the Stubblefields, a family from Southern Illinois we went to China with. They were in town for the IHSA tournament this past weekend and we met up with them for dinner. We joked in China about their daughter, Ava, being Gabe's girlfriend. (He actually had a couple girls in our group who were his girlfriends) I am putting some of the pictures on the blog. They were SO cute together. It was so nice to see them. We are planning a little reunion in St. Louis this summer and after seeing the Stubblefields, I am even more excited to see everyone. It will be nice to see how all of the kids have changed over the past year.

I am sorry that it took so long for a post. Chasing a toddler has kept me pretty busy. I will be better about posting in the future. Take care.

Check Up

We saw the cardiologist today for a follow up. He is very impressed with Gabe's progress. He will see him again in a month to run some tests to make sure things are progressing as they should and hopefully, at that time, take him off most of his meds. We will love that because the Sildenifil is given three times a day and one of those times is at midnight.

In true Gabe form, he put on quite a show today. He had Valentine candy to pass out to the office staff and he charmed everyone there. He even listened to one of the doctor's heartbeat with his stethoscope.

We will see the surgeon again in two weeks and after that, the appointments should taper off. We are just so excited that things are starting to fall together for our family. We only have a couple more weeks to be so home bound. I am going to start him in a Kindermusic class as soon as we can start getting out. We have many plans for spring and summer as well.

I will post periodically as we get more checkups and such. Thanks again for all of your support and prayers. It really helped get us through this. Even though we have had Gabe for 7 months now, we have always been so careful with him. It feels like now we will be able to do normal family things. We are over the moon! Thanks again!!

Ludlums

Home on the Range

Things are slowly getting better here at home. Gabe still isn't wanting to eat much, but hopefully that will change soon. He had one day this week when we saw his former appetite at all three meals. I thought we had turned the corner, but the next day, it was back to hardly eating. A boy can't live on American cheese alone, but if it were up to him....

We will be going to the cardiologist next week and they will likely conduct an echo cardiogram. We will know more about his heart function, etc. at that point. Assuming that we get a good report, I will likely start back to work a couple days a week. I am looking forward to that because I am not the best stay at home person. I don't think this weather helps much, we are going stir crazy. We try to get out for drives since we can't take him anywhere. Luckily there are still a couple people with Christmas lights up, which Gabe loves.

Sleeping has gotten a little better. Fingers crossed - we haven't had a nightmare for a couple days. Hopefully, that phase is over.

We are certainly seeing some of the results of his surgery. Gabe hasn't gotten winded once, even after taking on the stairs. It is awesome!

We haven't taken the opportunity to thank everyone who helped us out. First of all the doctors and nurses in the Pediatric Intensive Care Unit were outstanding. As usually, we got incredible care and attention.

Also, thanks for the meals that people brought. You have no idea how helpful it was to not have to worry about cooking. Plus the hospital cafeteria got really old really fast.

Someone sent us a Curious George DVD and there was no name on it. Whoever it was - thank you!

Thanks for all of the supportive visits, phone calls, texts and especially prayers. It is amazing to see how many lives Gabe has touched. It is especially moving to know since most of you haven't gotten to meet Gabe yet. That will hopefully change as soon as we get past our healing time. By spring, this kid will be all over the place!

Thanks again for everything and I will post the report from the doctor next week.

Typed Too Soon

It appears that I typed too soon about the sleep. The nightmares started last night. He woke up twice very frightened. The second time, it took so long for us to comfort him and get him to calm down. It is so sad to see him so upset. I know that many people who have been on bypass report nightmares and very bizarre dreams. Hopefully, this will be short lived. Thanks for the prayers.

Updates

Well, this week is full of appointments for Gabe. We got blood drawn (total nightmare) and a chest xray yesterday. Then we saw the surgeon to check on his progress. He is very pleased with Gabe's progress. He isn't getting enough fluids, which we suspected, but it is hard to get a 2 year old to drink if they don't want to. We are having a terrible time with food, even his favorites. I know that people who have been on bypass complain that foods taste different, usually bad. I don't think that we had this much trouble after the last surgery. I practically put a smorgasbord in front of his at mealtime and he might have a couple bites of something. Then he will start spitting food out. The only thing that he really likes right now are barbecue or salt and vinegar potato chips. Nice. He normally eats really healthy, but I guess for now, we will make some concessions just so that he is eating something.

He has been sleeping really well. The last time, we had a heck of a time getting him back on a sleep schedule and he wasn't sleeping nearly as much as he should. Fortunately, the sleep wasn't an issue at all. I guess that is the trade off.

Gabe's chest xrays looked great and they managed to cut back one of his medicines after yesterday's appointment. We will see the pediatrician on Thursday for a follow up as well. So far, things are going well, we just have some adjusting to do. Gabe is still crabbier than usual, which I think is due to the discomfort/pain that he is still experiencing.

I will say the other advantage we had with the last surgery is that during our "quarantined time" at home was relieved with frequent walks in the stroller. I didn't realize what a great break that was! We are going a little stir crazy and we are only a few days in!

I will post an update in a couple days. Thanks again for thinking of us!

YAY!!!!!

GABE IS HOME!!!!!!!!

He is happy to be home, but very sluggish. He is eating a little better and finally interested in drinking milk again. I am sure that we are in for a treat getting back on a sleep schedule. Thanks for all of the prayers. I will continue to post, but probably not as regularly. Thanks again!!!

Good Day

Gabe has had a great day today. The oxygen is off as well as most everything else. Assuming that everything else continues to progress today, he will be going home tomorrow. He is eating, but could stand to drink a little more.

He has spent a good part of his day cruising the ICUs and waving at all of the people. He has been blowing kisses to everyone.

Brian is working tonight and I will go home to get things ready for his return. We are so excited to get back into our routine. I am sure that sleep will be all mixed up, as it was the last time. Fortunately, we will have lots of time at home to get that straightened out. Thanks again for all of the positive thoughts and prayers.

Never a Dull Moment

Brian stayed last night and reported this morning was great. He said that Gabe was laughing and giving kisses. Many nurses came in to see him and he would blow kisses to everyone. I didn't get there until about 11:00 and he was getting tired and was crying. Brian said that he had only slept about 4 hours and had been up since 4:00 a.m. He was continuing to fuss, so the nurses figured it was a good time to pull his chest tube. He was a little shaky at the time, which they attributed to stopped the precedex (sedative) this morning. They gave him Versed (our favorite) and he did ok to get that out. They pulled many things at that time. We enjoyed the rest of the Versed time with a wagon ride. He was waving to all of the people in ICU, he was the social attraction of the day. Brian finally went home around 3 to sleep. Gabe started to fuss and I decided to try to put him down. That is when the fun stopped.

It turns out that his shakes were a withdrawal from the medicine. He was so agitated and he was thrashing in his crib. He was crying for about 3 hours. There was nothing I could do to sooth him, it was horrible. Even when I would hold him (which I FINALLY got to do today) he was push me away. They gave him Adavan a couple times during the day to help with this withdrawal, but he reacted to that and the medicine made it worse.

I was so upset because Gabe needed sleep so bad, but he was really fighting it. We decided that the Adavan was making it worse, the Nurse Practitioner agreed and gave him Chloral Hydrate to sleep. They said it could take 45 minutes to kick in and he was still phrasing and really fighting me. I had to halfway lay on him to keep him from trying to stand up for the hour it took for the medicine to work. He was so over tired and angry, it was one of the hardest things that I have ever had to do. A couple of times, I had to walk away and the nurse would come in and take over.

He has now been asleep for a little over 3 hours and it has been great. This is really what he needs. Brian came back after only a couple hours of sleep. I really don' t know how he is managing with such little sleep. But he is so darn stubborn, I can't get him to stay at home more. Hopefully, we will be home by the weekend and Brian can relax a little more there. Thanks for the continued prayers. Hopefully, tomorrow will be better.

Great Afternoon

I am not sure what happened, but Gabe has been nearly his old self from about 4:00 on today. He hadn't been talking or smiling or anything (at least without a medical intervention) until then. I got out his little Elmo doll and put it on my head and I got a smile. We, of course, did it over and over and he was eventually laughing. Another nurse had to come in and see it. After that, he has been playing with some toys in his bed. We put stickers on his photo album and now he is looking at his pictures. He seems SO much better this evening.

He did have some juice, which made him cough (and hurt) quite a bit. Now he is a little fearful of drinking anything, even milk. Hopefully, that will pass. We are going to try some soft foods here in a few minutes.

I just wanted to post how great it has been to see him smile today. It is the boost that I needed! Thanks for the prayers!

The Sun Will Come Out....Tomorrow

Gabe had a good night and the doctors say things are still going well. He has some fluid on the right lung today, but they think it will resolve itself.

When I got here, Gabe was somewhat sitting up (with the help on many pillows) in his bed. His color and everything look great today. He was able to have a sippy cup of water, which he took down. Luckily, he kept it down as well. He may get to have some milk today which will make him SO happy. They also want to try some food this evening. Our "sentence" here will depend on how things go with food. Cross your fingers and toes!

He is resting right now which is great and he doesn't seem mad at me at all today. I think this could be the day that turns things around. However, the arterial line will stay in until tomorrow. Boo! Which means, I still don't get to hold my Bubby. Hopefully, things will continue to progress and tomorrow, the line goes. Thanks for all of the prayers, things are looking so much better now.

Unfortunately, my parents are headed back up to Mayo today. My dad has a few more tests over the next couple days and hopefully they will have some answers for him. Please include him in your prayers. They have been a great relief this week because both would come up a sit a couple hours a day to relieve us. It will be a little more difficult this week without them, but I am sure we will manage.

We appreciate all of the support and we love the comments on the blog. Hopefully, upcoming blogs will all be this hopeful and positive!!

Calming Down

Brian got here and is going to stay for the night. Gabe seems more comfortable now that the chest tube is in. He is actually sleeping!

Thanks for the food Judy and Linda!!!!!

I am going to sneak out and go home for the night.

Better Afternoon

The doctor came in early in the afternoon and put the chest tube back in. My parents were here and Brian still wouldn't leave even after working a 12 hour shift last night. They put the drain tube back in his chest right in the room. He was sedated for the process and they called when they were finished.

They reported that Gabe handled it very well (thanks Versed) and said mama and dada several times. They went ahead and put out the pacer wires that were connected to his heart. They are there in case of an emergency, so having them gone is another good sign. The doc said that the Doppler test on the leg was extensive and they saw no clots. I was really worried about that, but it also goes to show that they are being very careful. Someone thought his leg looked a little swollen this morning and this was a precaution.

He also read the echo cardiogram and the fluid around the heart is minimal, and they say it will resolve itself. The lung was the bigger concern and that is currently being treated with the chest tube.

They did a chest xray afterwards to make sure that everything was ok and the tube was in the right place. It showed already the change in the fluids. Which is very good.

All in all a very anxious morning, but after the sedation from those procedures, he slept. Mom has spent the afternoon with him and reports that he has been resting peacfully. She will go home now and I will take the evening shift. I honestly don't know when Brian will wake up and come back. He was here for about 20 hours and I am sure he is beat. Hopefully, he will keep sleeping and I won't see him until much later.

Say a prayer that the art line comes out tomorrow and I get to hold my baby. Thanks.

More Bumps

Gabe had a rough night. He has been so fussy and uncomfortable for the last couple days. Brian's sister and husband came to visit last night during his fussiness. A friend brought up a wonderful dinner as well. She had plates, plastic ware....the works. It was great. He was so irritable during that time and they gave him some Versed. After that we had about 40 minutes of "regular" Gabe. I even got a kiss! He was chatting and talking about Elmo. It was great. After that he got a good couple hours of sleep. When he woke up, he was really upset again. He was thrashing around in his bed and reaching for me to hold him. It is so difficult to not be able to hold your child when they are asking for you to. Last night was a really tough night for mommy and daddy.

Brian worked last night and reported that he didn't sleep that great. This morning, they found that he has fluid around the heart, and in the lung. They also suspect a blood clot in his leg. They just did another echo cardiogram and a Doppler on his leg. They are going to put a chest tube back in today to drain. This will put us a little farther behind in recovery and going home. We are just waiting for the doctor to come in and let us know about these last tests and the chest tube. They will sedate him and insert the chest tube right here in the room. We really appreciate your thoughts and prayers. This might be an even tougher day then surgery.

Saturday

Brian stayed all night with Gabe and reported a fairly good night. He had a episode around 2:00 a.m. after he was given Tylenol when he vomited. I am sure with a fresh incision on the chest, that hurt a lot. Brian said that otherwise he slept fairly well. I am on the day shift and the doctors just rounded. They all think he is headed in the right direction.

They suspect that his art line will come out on Monday, which means we will get to hold him! That will be almost a week since we have held him and I am so looking forward to that. He should also start with some milk on Monday, which will help sooth him. He doesn't seem as mad at me today, but he is really down. We experienced this the last time. In fact, he was so depressed the last couple days in the hospital the last time, it was very heart breaking to watch. Luckily now he is into videos and we brought many Elmo videos to help pass the time. Right now, I am trying to get him to relax and get some sleep. It is really fighting it today and he really pretty cranky. I think his eyes are getting a little heavy.......hopefully.......I am off to try to facilitate a nap. Until tomorrow....

Rough Night

Brian stayed all night with him and it wasn't the best night Gabe has had. He had a couple more of the spells with the pulmonary hypertension. They did another echo cardiogram today and they assure us that the heart function is good. They all think that this is the lungs getting used to the way the heart is now functioning. I know that there is much trial and error involved, but for me, the "wait and see" is difficult. I also know that the doctors and nurses deal with this everyday and they know what they are doing.

Brian is home sleeping and he was supposed to work tonight. They have arranged for someone to cover for him, so he will probably be hanging out with Gabe. I am on the day shift today. Mom and Dad come up in the afternoons and help out. The last time, we didn't break it up in shifts as much and I think this way is much smarter.

I think this current issue isn't an emergency, but it will likely keep us here longer and we will go home with more medication. Still unnerving for me.....we are hanging in there.

First Bump in the Road

I knew it couldn't all go this smoothly! We had some issues today with pulmonary hypertension. The doctors and nurses have assured me that it is ok. They explained that the changes in pressure that his lungs have experienced is causing something of a shock. Remember, I am NOT a medical person and Brian wasn't here to dumb down the explanation for me.

They also think that he may be reacting to coming off the oxygen, so he is back up to 100%. They have also put him Viagra (yes it actually has a medical purpose) for the hypertension. They have assured me that this is more of a transitional thing as his body gets used to how his heart now functions. They considered this a crisis situation and they are doing everything to make sure that his doesn't get himself into another crisis. The interesting part is that he slept through the whole thing.

On a good note, his temperature has come down and his blood pressure has stabilized.

We are taking this an hour at a time. Keep the prayers coming. Love to all.

Tube is out!

The breathing tube is out and he is doing really well! He handled it well and he is back to resting peacefully!

Making Progress

Gabe had a great night last night. He is still sedated, but they have been weaning him off slowly. They tested his breathing and he was able to breathe on his own, so we are now just waiting for the doctors to come in and extubate him. This will mean that he will be more wakeful today, but still sleeping a lot. We are excited because we really haven't seen his eyes open since he left for surgery. We miss his laugh and smile!

The only problems that he is having right now is the elevated temperature. The doctors are more concerned about it today and may start antibiotics soon, just in case. The other issue is that there is a blood clot behind his atrium. This really concerned me, but a couple doctors and several nurses have assured me that this will absorb and go away on its own. They said he will likely be sent home with this clot still. It makes me a little uneasy, but I have to trust them.


Gabe's color looks great and he isn't nearly as swollen as he was after the last surgery. His lungs look clear, but his kidneys are feeling the effects of him being a little dry. However, that is also how they keep his lungs dry and free of things like pneumonia. I guess it is a balance and everyone says that things are right on target.

I will post again later. I am going to get ready to the extubation because I have a feeling he won't be super happy when they take the tube out. Until later......

Day After

I am sorry that I didn't update the post after surgery last night. Things got a little hectic and we thought we were going to see him sooner than we did. Translation......1 hour hospital time = 3 hours real time. Brian and I have found that everything times 3 is the best equation.

The surgery was successful, but long. They took him at 8:00 am and we didn't see him until 10:00 pm. It helped that we had a private waiting room. Brian stayed with him until about 4:00 am, while I came home and got some rest. We are going to be doing this more in shifts. The doctors say that everything is looking good today. There were some problems with a slightly elevated temperature and low blood pressure last night, but those seemed to have stabilized. He had Brian, two nurses, and a nurse practitioner all to himself last night.....how is that for service?!?. We also have a great corner (larger) room with a view. We couldn't be getting better care.

The doctors want to keep him paralyzed and heavily sedated until they extubate, which will likely be tomorrow. So we are enjoying the peace and quiet, because once the sedation wears off......this will be a different story. I will update again tonight or tomorrow morning. Thanks for all the prayers.

Surgery Updates

6:00a.m. - Get to the hospiatl for tests, etc
8:00 a.m. - They take Gabe back for surgery and he was surprisingly agreeable all morning. He went with the nurse with no problem
9:30 - They made the first incision
10:30 - He is now on the heart-lung bypass
4:00 - They keep telling us that things are going well, but they are expecting another 3-4 hours and he is still on bypass

Tomorrow is the Big Day

We are getting everything prepared for tomorrow. I have decided that having gone through this once and knowing what to expect is both good and bad. I know what to pack for him and what he will need to be comfortable. However, I know what to expect from him before and after surgery. Unfortunately, after our nightmare EKG last week, I think he knows what to expect when he sees the people in scrubs.

The last time, after he was extubated and the heaviest sedation had worn off, I felt that he was really mad at me. I didn't get this vibe towards anyone else. Maybe I read too much into this, but I felt that I had broken his trust by putting him through this. It was really hard. That lasted a couple days and then he was better. Towards the end of the last surgery was a total disconnect and he got really depressed. The nurses all said at that point, he needed to go home. I felt that he had resigned himself to living a life like he had in the orphanage. Again, people think that I read too much into this and he can't comprehend to that level, but I still disagree. Either way, I feel very guilty knowing what he is going to go through. It has to be done, but I just wish we were able to explain all of this to him. We have some last minute tests and information to gather today, but we are really trying to enjoy our last day before the hospital.

I will be blogging through the surgery and hospital stay. We really appreciate all of the continued support and love from all of you. Thanks.

Ludlums