The heart catheterization is currently scheduled for Friday afternoon, but this will only happen if they confirm that he has no infections as of tomorrow morning. There was a sign of one so they are doing a 2nd test to see if the first reading was correct or false. If he does have an infection then the heart catheterization will be delayed about 1 week. Hopefully that will not happen because another week of waiting is not something we want to go through. This morning when I saw Logan he was looking good…even though he was just sleeping.

Here’s how the last couple days have gone…

Sunday I arrived at the hospital to hear rumors of a discharge within 48 hours. Shortly thereafter Logan’s discharge paperwork was started and it was planned to be today, Tuesday. Also Bill’s parents arrived from PA.

So Monday Bill and I spent the day learning what we needed to for Logan’s care, picking up and receiving training on the feeding pump for home and going to the pharmacy to get his prescriptions filled for home. I had plans of spending the night at the hospital since they usually require a parent to stay over a night and do all the care for Logan. Bill and I went out to dinner with Bill’s parents and then I was dropped back off at the hospital. Shortly after I got into Logan’s room he had another episode where his stats (blood oxygen level) dropped. After getting him back on track the Dr. on night shift decided he wouldn’t go home Tuesday and that they would watch him for another day. Aiming now for a Wednesday discharge.

My stay over night consisted of setting up Logan’s feeding by pump, giving him his meds, pumping myself and about an hour or so of sleep every three hours. The plan was for Bill to come to the hospital this morning and I would then take the car back home, sleep, eat, pump, shower and possibly go back this afternoon. Just as Bill was arriving at the hospital a Dr. comes in and starts to tell me that when reviewing Logan’s Echo done the previous morning, they have noticed that the small obstruction in the valve that was repaired has gotten bigger over the last couple weeks and that he will need to have another heart cath. done to check it out and very possibly undergo another heart surgery. The heart surgery is inevitable, it’s just a matter of whether it can wait a month or so or if it needs to be done now.

So we’re back to not knowing when he will come home. On top of all that, I go to leave the hospital and it begins to downpour. The parking lot seems to be a half mile away from the entrance and I get wet…no scratch that…it was similar to what it would be like to sit in a bathtub of water with all your clothes and shoes on.

Not having a good day to say the least. I’m going to go to bed now for an hour or so before I have to get back up and pump again.

Kim

Logan had another good day. Last night they put him back on the breast milk via a continuous feed and tonight they are going to try bottle feeding him. This was good news for Kim & I since one Dr had told us that he would be on the continuous feed via a machine for 30-45 days after he got home. Now they are planning on the feeding tube just being a backup plan. So the only thing that would have to be connected to him when he comes home will be the heart monitor. They are still talking about letting him go home this week if his eating goes well over the next couple of days.

Well it was a long day…not due to complications but more to delays. We were told his surgery would be at 7:45 am so we got there at 6:45am to see him before he went in. At 8 we found out there was a emergency appendectimy (sp?) that was done. So they did not get around to taking Logan until 11:45am. The surgery went fine and now we are back to the recovery phase. He is back on the breathing machine…hopefully that will come off tomorrow. He cannot make any sounds when that is down his throat so this afternoon he seemed very upset but had to cry silently. It seemed like whatever made him upset was magnified by the fact that no one could hear how upset he was. It was tough on Kim & I to watch him be that upset. At one point he turned to Kim opened his eyes and let out a few big tears…that brought tears to her eyes too. At least when he came out of the previous heart surgery he was heavily sedated and on a constant flow of pain medication.

So now if everything goes well they say maybe he can go home in 1 week.

Hello all! Things have been going pretty smooth over the last few days. Logan is scheduled for his surgery tomorrow at 7:45AM. This will be for the reflux (tightening the top of the stomach) and also to place the feeding tube. Please continue to pray for him as he undergoes these procedures. Hopefully this will solve the reflux issue and he will be able to come home after recovering. We’ve been told there could be 3 to 4 days of recovery.

Thanks again for all the support and prayers. Keep up the good work!

Kim

Yesterday Logan went through a test for his reflux. It showed that he has a pretty serious issue with it. Enough to do surgery to fix it. So sometime this week they will do a procedure to get his reflux under better control and to insert a feeding tube through his belly into his stomach. This morning when we got there he had a new symptom…an irregular heart beat. They told us this is common among people who have heart surgery and recommended givign him a drug that would help with it. After just one dose this morning his heart beat was back to normal.

Logan had a better day today. He was on a feeding tube which goes in his nose and to his stomach. The Dr’s think the episode he had the other night was caused by reflux (stuff from his belly coming up) coming up and out his nose and giving him breathing problems. So the feeding tube allows them to feed him at a slow contant pace which cuts down on the chances of the reflux. He slept a lot today. Maybe to recover from the episode and the adding of the feeding tube and maybe cause he does not feel hungry since he always has food in his belly. He did not have the oxygen tube on him today and his oxygen level seemed good all day, so hopefully they are done with that.

He also seems to be getting less tolerant of the picture taking…

Today was somewhat of a setback day. Bill took the day off so I was on my own at the hospital. I arrived there to learn Logan had another episode last night where when he spit up his oxygen saturation number went down. They decided to take bottle feeding away from him and place a tube down his nose to his stomach and do a continual feed that way. This is supposed to hopefully eliminate the problem he is having with reflux and then spitting up through his nose which then causes some breathing issues till it’s cleared (this way his belly is never completely full causing more reflux). If this feeding method works they will give him a G-tube (a tube directly to his stomach in his belly) to feed him that way till he gains weight and can either better manage his reflux issue or is big/old enough to undergo any possible correction procedure. This all put me in a downhill spiral very quickly which then brought a crew of nurses over to console me. Seems consoling only makes me more upset. Hopefully tomorrow will go smoother for us.

Today has been a good one so far. When I arrived this morning at 9:30 Logan was finishing his breakfast. They told me he had gained a little weight…finally a step in the right direction. He then proceeded to stay awake and alert for the next 2 hours. The pictures below were from that time period. He did not get upset at all. He was just looking around, checking everything out. Late in the morning he found that his thumb may work well as a pacifier (see the last picture). As you can see he is also trying out a new spikey hair style. The yellow spots you may see on his head are just from some antiseptic cleaner they use.

Since 11:30am he has been busy with some tests that needed to be done. He had a full skeleton x-ray & a digestive test. They said he was very calm and well-behaved for those. Then I got to see him for about 10 min before he went for another one to test how well his lungs are adding oxygen to his blood. They said they should have the results for these tests tomorrow.

Click here to download and view a video of Logan
This is a .avi file. If you do not have a video player that automatically plays .avi files for you then you can download one at www.winamp.com. This is a audio & video player that will automatically handle most file types.

Today there was more talk about getting Logan to eat more and put on weight. They started adding some powder to his milk that will add calories. He is consistantly eating a good amount but has not started putting on weight yet.

The other issue regarding the phlegm he chokes on and blows out his nose seemed a little better today. He still has it but Kim & I both heard him cough to clear his throat a couple of times. I think his body is learning he needs to swallow that down and not let it pile up in the back of his throat.

He is getting a little more active too. There is definitely more reaching, grabbigng and stretching going on. He is also doing more with his facial expressions. Mostly when he is sleeping, but it is so nice to see a little smile on his face even if it was caused by gas 🙂

2 weeks old and he has already been visited by more doctors than I have in my entire life.

As Kim mentioned yesterday we are still on the feeding & gaining weight plan. He is still eating well and hopefully it will start to show on the scales soon. The problem is that when he has issues & is unhappy he burns more calories than if he was laying still. So the best case scenario is for him to eat a lot and not be too restless. The biggest cause of his restlessness right now is the milky mucus he gets caught in the back of his throat. Sometimes it spews out his nose…he does not enjoy that at all. When it pools in his throat it eventually becomes a breathing/choking problem. Today we just had the nurse suctioning him a lot to help but it would be nice if that went away of if we found a better way to handle it.

Monday he has some more test being done. We will let you know the results of those asap.

Hi everyone; Kim here! Sorry for no update yesterday. Bill took an early day and played a pool tournament and I caught some dinner out with my Mom and sisters. So where’d we leave off…

We’ve had a couple pretty good days. We’re back to focusing on eating and gaining weight. There was one rough night Thursday evening. A phone call from the hospital at 11:00PM. I had just layed down. Logan has this talent of spewing spit and milk up through his nose instead of his mouth and it caused his numbers to drop. So I get a call about it and that they were going to discontinue feeding him for that evening. I did well at controlling myself because I wanted to come through the phone and strangle the nurse. It’s hard not to question how well they were watching him. But we’re past that now. We’ve talked with the immunologist (sp?) the last couple days. I think Bill mentioned that Logan has a low immune system. Evidently normal children are born with a T-cell count from 3000 to 5000 but Logan’s count is around 1200. The good part of that is that he at least has some so it’s not as bad as it could be. Over time most children recover their immune sytem and by about 2, it’s normal. Today I was told that they hold off on giving him the live vacinations until their T-cell count rises. That’s been about it. Today so far he has eaten more than the minimum they now want him to eat at each feeding and it’s all stayed down. YEAH! Hopefully the scale will start to go up. His scar looks great. Better than mine (no pictures of mine though).

Today was a better day than yesterday. Logan was in a much calmer mood today and we found out the the DiGeorge Syndrome is not as bad as the internet information makes it sound.

We talked to the genetic dr today and she explained that the stuff you read on the internet about the DiGeorge Syndrone can be scary and over exaggerated. That was confirmed by someone else who has a 2 year old girl with that syndrome. The stuff they describe on the internet are all possible symptoms but rarely occur in their severe state. Basically the most common sympton is the heart problems, which hopefully have been addressed. The next most common symptom is a missing thymus (a covering around the heart) which Logan does not have. This part of the body is one of the parts that produces immune fighting T-cells, but it is not the only part of the body that does that so his immune system may need some extra boosting for a few years due to this not being there. They took some blood from him this morning to test for the T-cells and that will determine how delicate his immune system. The other thing mentioned is the possibility of learning disabilites, but that will only show over time, however it is not a definite symptom just a possibility. Another thing mentioned was more than average ear infections. There was some stuff on the internet about facial stuff, which he does not seem to have and cleft pallet, which they checked for and did not seem to be occuring.

Our run of good luck and good news ended today. They started this morning by asking us if we could be there tomorrow at 10am to meet with the Geneticist (sp?). Then a little later one of the Dr’s told us why. Logan has something called DiGeorge Syndrome. The heart condition he had repaired is one of the possible affects from it. DiGeorge syndrome is caused by a large deletion from chromosome 22. There are other possible affects that can vary in severity. Our nurse today says she has had DiGeorge Syndrome patients that are perfectly normal. I’m sure she has had some that had various symptoms too. The little I have read on it states that it is not cureable but the dr’s can treat some of the various symptons/affects.

Tomorrow we will learn more about it and they will be doing further tests on Logan’s blood to look into this further.

Today Logan had some more wires and tubes removed. There are only a few left. Now we are focused on feeding. Once he is feeding well and gaining weight they will let him go home with us. Possibly Friday or the beginning of next week.

Here are 2 pics…one from early last week and one from today…he has come a long way.

Not too much new to report today. The main focus right now is on getting him to eat. He is doing really well for his 2nd day at it.

Today Logan is 1 week old.
He is still improving. The next big hurdle is getting him to eat. Since he has been fed via an IV for the first week of his life he is not accustom to the normal eating process and the nurses have told us he may not take to it right away. His first feeding attempt was done by a nurse. He ate a little but obviously was not excited about it. The second attempt, a few hours later, was done by mom. The problem that time was that he just wanted to sleep once he got into mom’s arms. We spent an hour trying to wake him up so she could try to feed him. Eventually he ate most of what he was suppose to, but once again he was not happy about the procedure.

Logan has been much more peaceful today. He did not sleep much yesterday after his breathing tube was removed (from 10:40am-7pm). He was pretty uncomfortable and fussy. This morning he seemed to be past that phase. He also had his chest drainage tube removed this morning. So slowly he is losing the tubes & wires that are holding him down. If his blood test looks good this afternoon he will get the stuff off his left arm which is where they draw the blood from. That’s all for now. I have attached some pics.

Logan is still improving. Last night they turned the breathing machine down so he was basically breathing on his own. After testing his blood this morning thay decided he could try coming off the machine completely. So they are taking the breathing tube out of him right now. If all goes well we will be one step closer to getting him unplugged from everything. The Dr did say he may not do well off the machine right away and it would not be a big setback if he had to go back on it. If that happens they will put him back on it for another day and try taking it off again after he has had a little more time to recover.

The breathing tube has been out for a while now and everthing seems to be fine. They also took some other items off him around noon. Attached are some pics from today.

Logan is still progressing in the right direction. There have been no major issues since his surgery. It is just a matter of slowly taking him off the breathing machine and meds, which that have been working on for the past 2 days. He seems to be the most active in the morning between 9:30-10:30. This morning he had his eyes open for a while and seemed to be doing more arm stretching than yesterday. He also is doing more of his own breathing and with that is opening his mouth more (as much as he can with the air tube in it) and he even had a brief spell of hiccups. Today they plan on laying him on his belly for a while to try to move around the excess fluid that he needs to get rid of before they can take him off the breathing machine.

Logan after his heart surgery

Hi everyone! Thanks for all the prayers and support. I am home now and recovering. Bill just called from the hospital this morning with an update. I’m still trying to do some partial days of visiting without totally wearing myself out. All is going well. They expect to start reducing the sedative he is on today along with the continual weaning from the breathing machine. It’s been a day or so without any setbacks so we are definitely heading in the right direction. I’m including some pictures. I know everyone is curious to see him. You may also notice his feet curve in. He has club feet we’ll worry about correcting later.
-Kim

Day 3 for Logan has been much better that his first 2. He is recovering from his heart surgery without any complications. His blood pressure, blood oxygen levels and other stats they are watching are improving.

This morning when I got in to see him his was moving slightly it seemed like he was trying to open his eyes. After a while I asked the nurse to wipe away some of his eye gunk and then they popped open. I sent some pics to Kim to show her. He has had them open for over an hour now with his eyes locked on me…unless a nurse walks by…then he does a quick glance to check them out.

Kim is going to be released from LWH around 2. She said she was going to go home and rest before coming up here to see Logan, but I bet that will be a very short rest if any at all.

This was the first morning that he has not given me anything to worry or stress about and I thanked him for it.