The holidays have now come and gone. We had a great Christmas. We traveled to Virginia to stay with my sister, Christy, and her family. We arrived the day after their snow storm so there was 20 inches of snow on the ground. While there Logan caught a cold. Luckily it wasn’t till the end of the trip however it canceled our planned trip to PA to see some of Bill’s family . He’s now recovered however that wasn’t without one trip to the ER with a high fever. That’s how we celebrated 1/1/10. Test results for RSV and the Flu came back negative, his chest x-ray was clear and we didn’t hear anything about the blood work they took which is supposed to mean good news.

We made an annual follow-up visit to the Nephrologist yesterday and was told all was improving and that they did not need to see us again unless something came up. Yippee!!! One doctor crossed off the list.

Logan’s scar from his surgery in November is healing nicely. He is starting to try to stand on his own and has even been seen taking a step. We’re on our way to walking soon I think. He has taken to eating some finger foods on his own. So far I think one of his favorites is hotdogs.

Hope all of you had a great holiday season. Enjoy our pics.

Logan had his surgery on 11/24 to close the feeding tube site. Everything went well other than the fact that we found out 5 min. before surgery that he would need to stay overnight. Every conversation up to that point had been that it would be an outpatient surgery. The biggest reason for keeping him was his past heart issues. The other reason was that he wasn’t allowed anything by mouth for 6-8 hours after the surgery. Then it was clear liquids till the next morning. So along with Logan, I spent the night. Logan slept pretty well. Me, not so much. There’s so much activity going on at all hours. He was discharged around 11:00. Watching him, you’d never know he had surgery or that he still has stitches. He’s just as active as before. His discharge papers said to have quiet time and limited activity for 2 weeks. You tell that to a 17 month old.

Since I’ve last posted we have removed Logan’s feeding tube (on 10/17/09). He is gaining weight although at a slow pace, but none-the-less gaining. Normally when these tubes are removed they close up from the inside out and there are no problems however in a small percentage of people they don’t always close and heal smoothly. Well meet….Logan “Small Percentage” Eisenhard. Seems his site has continued to leak and not heal. We’ve done a few weeks of different suggested attempts to get it on the right track and they haven’t worked. He is scheduled for surgery on 11/24 to have it surgically closed. As anxious as I am to get him sealed up and on the right track, I’m also not excited to have him go through a surgery. Please keep us in your thoughts and prayers as we go through this bump in the road.

On an up note, Logan has decided it is time to finally be interested in trying to walk. He has started to push and walk behind one of his push toys. The next step of freedom is just around the corner.

Hope all is well with all of you and that everyone has a great Thanksgiving Holiday. I’ll do my best to get a quick report on how his surgery goes posted.

Video: On our feet and moving forward

I really haven’t had a lot to report in the last couple months. Recently, in the past couple weeks, we’ve had some things going on. The biggest news would be that Logan hasn’t used the feeding tube for the past 10 weeks. We made a visit to the GI Dr in August and started talking about being able to take the tube out. He gave us 4 weeks to show a respectable gain of weight. The Dr is looking for 10 grams a day at this age. Within that 4 weeks Logan and I made a vacation trip to North Carolina to see family. My only worry was that he might not eat the same as being at home. Little did I know that not only did he maybe not eat the same but we both came back with a sinus cold. So the cold also had an effect on his eating. Not too bad though. We went back to the Dr this past Wednesday and unfortunately learned he had not gained enough to make the Dr comfortable in removing the tube. Our follow-up is now planned for November. I’m sure he can accomplish the task this time.

Our vacation to North Carolina went well and we enjoyed seeing family we don’t get to see often enough. My little sister, Christy, and her daughter, MacKenzie, also joined us driving down from Virginia. Lots of laughing and even more eating went on (Logan obviously didn’t overindulge like the adults did). Returning with a cold wasn’t what I had in mind but we have both recovered. This was Logan’s first time being sick which is a worry for us given his compromised immune system, but he has pulled through fine.

That’s it for now. Enjoy our pics.

Logan’s party was a success. From what I counted, there were 26 in attendance, including Logan. He got lots of new toys and swam in the pool with Mimi (Bill’s mom). He wasn’t much interested in the cake. Maybe next year.

Bill’s parents and a niece and nephew came down to celebrate with us. They arrived on Thursday, the 25th and stayed till Tuesday, the 30th. They visited Gwiz in Sarasota while here and we took Logan along to Mote Marine on Monday.

Enjoy the pics and videos.

So we went to our first play date today. It went very well. Logan seemed to have a great time. (Thank you ladies for making it an easy experience for us.) I was a little nervous since we have kept Logan away from other kids trying to keep him as healthy as possible. An opportunity opened to get together with a couple other moms, two of which were in my lamaze class. They all played together very well. We hope to do it again.

Other than that not much has been going on. We are planning a birthday party for Logan and Bill’s parents and Logan’s two cousins will be here shortly to help celebrate.

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We made a visit to the ENT Dr and the GI Dr for Logan’s test results. The ENT found nothing wrong in his CT Scan so there’s no apparent reason for why they couldn’t get the NG tube down his nostrils for the earlier test. Just a bad day to put tubes down his nose but then what day would be a good day for that? The GI Dr said the MRI just showed a slight impression from his right aortic arch which is normal for kids with that abnormalty. The impression didn’t appear to be causing any function issues with the esophagus. So YEAH, everything turned out good. During this same week I had a follow-up colonoscopy. My last one was 2 1/2 yrs ago. I’ve been feeling great and my Dr and I had reduced my dosage of meds but he would go further till he looked to see what was going on inside. The results….I’m in remission. Other than the prep day for my colonoscopy, this week was looking great. THEN….to top it all off, we started seeing the results of the government COBRA help. We couldn’t have asked for a better week.

A month or so ago my mom mentioned that when her slow season came she’d be willing to watch Logan for a weekend so Bill and I could get away. We ended up planning a fishing get away to northern Georgia. I had never fly fished and had always wanted to learn. Bill was raised fly fishing in PA. We took our trip this past weekend and had a great time. It was a little bit of a long drive but we managed a couple days of rest. Bill and I both caught fish. We hired a guide to take us out Saturday morning and then did some fishing on our own Sunday. The cabin we rented was right on a stream. I caught a little sucker fish but that was about it. I ended up with the “one that got away” story although I have a witness. Bill did see it. I hooked a large trout, we’re guessing 20-24 in, but it broke the line.

As Logan’s first birthday rounds the corner we are puting thoughts together about a modest party. Bill’s parents and niece and nephew will be down. I can’t believe a year has almost passed. What a year it’s been.

Logan is just about 10 months now. Can you believe it??

Logan had his MRI and CT Scan this past Wednesday. We don’t have results yet. We have appts with the GI & ENT Drs. this next week. Hopefully no big problems will be found. He did well during the tests. They sedated him so he would be still for them but they did not have to intubate him (thank goodness). Aside from that we have been working on drinking from a sippy cup. He’s doing well with it. Not enough yet to take him completely away from the feeding tube but we’re working on it.

Today was our first trip down to the pool. Trying to gear up for summer time. He seemed to enjoy it. It was way too cool for me but Logan didn’t seem to mind and dad got in with him. I became the photographer.

We’ll keep ya posted on the results of Logan’s tests.

Click on the links below for new videos…

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So you’d think being unemployed I’d have all the time in the world to update this blog however, there always seems to be something else to do. Here goes…

January -(1) We went to our follow-up appt at the Shriner’s Hospital for Logan’s club feet. We received the ok at this appt for him to only wear his brace at naps and at night. Yeah!! He’s so much easier to cudle without it on 24/7.(2) Bill’s parents came down to visit speading 10 days with Logan. (3)Our appts to the cardiologist went very well. Everything looks great. Logan has a valve that is leaking but nothing should have to be done about that for a while. Eventually a valve replacement will need to be done. Our follow-up appt was moved out to 4 months. (4) Our appt with the immunologist went well. They requested some blood work to be done and a couple things came back low but we are just monitoring those things for now since Logan hasn’t had any infection or sickness issues. (5) Lastly, on 1/30 we had our follow-up swallow study done. I’m happy to say this went very well. Logan is no longer showing signs of aspirating while swallowing and this means we can now work with him to drink liquids (one small step to eating on his own and getting off the feeding tube).

February – (1) We’ve been following up with the GI Dr. because we did see some foods coming back up the esophagus during the swallow study. We were scheduled to have an esophagram done. During the esophagram they were to use an NG tube (a tube down the nose to the stomach) to coat the esophagus with barium however, they couldn’t get the tube down either nostril so this has now raised the question to the GI Dr..Why …Is there a blockage?? Hence…more tests and a new Dr. (Ear, Nose, Throat Dr.). We are now scheduled for a chest MRI (to look at the esophagus) and a CT scan of the nasal area to see why they couldn’t get an NG tube down. That is all scheduled for April 22nd (soonest they could get us scheduled…love that!) Prayers for that day please as Logan will need to be sedated for both and a small chance of needing to be intubated. (2) All has been well with the Pediatrician. He goes for a monthly shot to help prevent RSV (a common respiratory virus kids get) and usually gets at least one vaccine while he’s there. Last visit he weighed 16.8 lbs. and was 27 in long. His weight has kinda leveled off at the moment due to us trying to get him to eat more by mouth. We’ve rearranged and reduced some of his feedings to make him more hungry. He probably has never really felt what hunger feels like since we’ve always just pumped his food every few hours. (3) We have started to work with a speech therapist (oral motor skills, includes feeding therapy). She comes every Tuesday. Logan has been doing great eating from the spoon and recently we’ve been playing with some different textures. Looks like he will skip right over the bottle and into a sippy cup. After 3 months of no bottle allowed, he has no interest in it. He likes the cup but still thinks it’s just fun to chew on the spout more than actually drink from it. Baby steps though, we’re working on that.

March – is quiet actually. Other than our therapist on every other Monday, speech every Tuesday and the monthly Pediatrician appt…I don’t think we have anything scheduled. Logan is working on crawling. He’s been up on his knees and rocking for weeks now. He also is sitting up on his own (there’s a video of that. Kinda interesting technique he has. Not sure the therapist will approve but it works for him.) He’s good at pushing backwards but there hasn’t been any forward motion yet. I’m sure it won’t be long.

Enjoy the pics and videos… They will be in a new post.

Logan seemed to be in a good mood during his last Dr appt.

Make sure your sound is on for the video below.

Video

Hello all! Just thought I’d post a hello and let you know not much new has happened. Logan is still not able to take a bottle. We’re looking to have the follow-up swallow study done in January. Hopefully he grows out of this issue. We’ll see. 

Otherwise we’ve just been hanging out at home and going to a few doctor appointments here and there. Logan has made a successful transition to his crib so he is in his own room at night now and sleeps through the night. Yeah!!

Here’s some new recent pictures.

or so to speak. For those of you who don’t know, we’ve had some trouble getting Logan to take his bottles over the last few weeks. Today we had an appointment for a swallow study. They take some barium powder, add it to his formula and feed it to him while a live x-ray is being done. This shows his swallowing and where the formula is going. Today’s results showed he is aspirating while drinking. Meaning some fluid is going down the wrong pipe which isn’t good. He now is not allowed to have any feedings by bottle. This is a big disappointment to me but we do still have the feeding tube which is a means of feeding him and allowing him to grow. The therapist that conducted the study said this is common in kids with DiGeorge Syndrome. We are however allowed to feed him some small portions of baby food such as cereal. During the test he seemed to do ok with it. Seems when he has just one swallow to focus on and then can follow it with some “dry” swallows he does ok rather than a continual flow of liquid to keep up with. The plan is to follow up with another swallow study in 3 months and see if there’s an improvement in his swallowing. When we asked the therapist why at one point he seemed to take bottles fine and now doesn’t, she said that an infant’s mouth and esophagus structure goes through a huge growth and change during the first year of life and around 3 months or so of age seems to be a period of change.

Today Logan had his casts removed. Below are the pics of his shoes & brace that he needs to wear for the next 3 months.

Video – for those of you that like to see Logan in action.

…even though nobody can understand him.

Check out this video – He seems to of found a friend in the character on my shirt. Logan shares some of his thoughts on the world with the guy.

On Wednesday Logan had the procedure done where they snip the tendon in his heel and had his casts put on. These will be on for 3 weeks then we will have them removed and switch to the shoes with the bar between them to continue treatment of his club feet. The nurse told me the procedure went well ( I was not allowed in the room while it was going on ).  Below is a picture of the new casts.

I also included a video and picture of something else Logan has been going through. The struggle for dominance over one of his toys. I think eventually he will take control of the situation but right now it is not going in his favor.

We have been bad about getting pictures & video of Logan up here for eveyone to see.

So here is your Logan fix…

Video – his first rollover…not sure if it was intentional.

Video – head lifts & neck exercises.

We are home again. Logan’s echo went well this morning and we were released and out of there by 11:15. 

And I have to say that my 10 hours of sleep was wonderful.

Today’s heart cath procedure went well for Logan. They were able to use a balloon to stretch his valve and reduce the high pressures in his heart. For now that will mean no open heart surgery. We will have to monitor the valve to see if it grows with him. He is spending one night at All Children’s for observation and should be released tomorrow after having another echo done to check up on everything. As difficult as it is to leave him behind for even just one night, I’m looking forward to a full night of sleep. Going back to the same ICU unit was like seeing a bunch of friends; although we told them it was just for a night. No extended stays this time. Everyone was excited to see Logan and was happy to see how much he’d grown. 

So I have one expensive babysitter for the night…zzzzzzzzzzzzzzzzzzzzzzzz

We just got a call from the hospital saying the needed to reschedule Logan’s procedure. So now it is scheduled for this Fri at 9am.

Today we went and had a sedated echo done to do a double check on the blockage that was seen on Tues. The result is the blockage was not as bad when he was sedated. This means it probably looked worse if he was moving or upset. However it is still bad enough that they would like to do something about sooner rather than later…sooner just happens to be next Friday. 

So the bad news we are not going to be able to wait 3-4 months like we were hoping. The good news is the procedure they will be doing is a heart catheterization (instead of actual surgery) to do an actual measurement of the pressures in his heart and then they will balloon open the valve & scar tissue. If everything goes well and his problem valve grows with him over the next several months there may not need to be another surgery.

Right now the heart catheterization is scheduled for next Fri at 9am. If everything goes as planned he will be in the hospital for 1 night for observation and released on Sat.

Yesterday at the weekly cardiologist appt…they found some of his numbers were higher than they should be during the echo. We are not sure exactly what those numbers represent at this time but plan to find out more tomorrow because they want to do a sedated echo to see if he was not agitated and causing the numbers to be higher than normal. If the numbers are still high during the sedated echo then he will be admitted to the hospital and will have another heart catheterization. That procedure will give definitive info on whether or not they need to operate on his heart now or if we can wait. The heart surgery would probably be just a matter of clearing away some scar tissue that is partially blocking the small valve. We were expecting to have to have this done within the next 6 months but the doctors and us were hoping to wait at least 3 months before having to do it to give him time to grow.

We will give you more info as we get it.

Here is the video Kim took of Logan playing in his gym.

Gym Video

The last couple weeks have been pretty good. We found out that a tropical storm will keep the doctors away. Two of our appointments got cancelled due to the storm last week. It made it a great week. No running around. I even stayed in my PJ’s a couple days. 

We’re on our third set of casts to correct the club feet. All seems to be going well with that. Yesterday we visited Logan’s GI doctor. We are working towards getting away from using the G-tube. Slowly we will start to feed him by mouth during the day. What he doesn’t take by bottle, we will finish giving to him by the feeding pump. At night he will stay on continual feeds (more for the sake of our sleeping). The visits to the pediatrician continue. As of Tuesday, 26th, Logan weighs 10 lbs. Next week we visit the Cardiologist. 

Logan received a floor gym from his Uncle Dave and Jackie. He seems to really like it. 

I’d attach pictures and the video I have but it doesn’t seem to be working for me. Bill will have to help me when he’s back in town. 

Till next time…Kim

We have the pleasure of seeing 3 doctors each week for various follow up appoinments. These include the following:

• The pediatrician – located in Bradenton, he monitors Logan’s size, eating and other general baby growth stuff and answers general “what to do” questions we come up with.
• The cardiologist – located in St Pete, they do an echo & ekg on him each week to monitor the heart valve issue to make sure we can continue to hold off on his next procedure for a few months.
• The feet people – located in Tampa at the Shriner’s Hospital, they will strech his feet a little and put on a new cast each week. 

There are various doctor follow-ups at All Children’s hospital in St Pete for different departments that saw him while he was staying there. None of them are on a regular basis…just follow ups.

We have to be careful when it comes to tummy time since there is the feeding tube button attached to his belly and sticking out about 3/4″.  So we took and a foam pad and cut a hole into it to support him and keep pressure off the button.

The first attempt at tummy time did not go well, he started getting mad within 30 seconds. The second attempt he slept in that position for about 30 minutes. And the other times we have tried it he has been successful and just lifts his head to look around. He can only hold it up for a few seconds but he is improving. I’m sure it is a nice change from laying around on his back all day & night.

Tummy Time

We apologize for the lack of updates since we have been home. We have been very busy enjoying Logan at home, going to dr. appointments and trying to get into a routine with him. For the first week he seemed pretty content except for some rough spots that seemed to be gas related. We had our first visit to his pediatrician and his first cardiologist checkup. Nothing new from either dr but they are going to keep a close eye on things since we will be visiting each of them once a week of a while.

On Wed we went to the Shriner’s hospital in Tampa to talk about getting his club feet fixed. After waiting 2 hours to seem them we talked to someone, then had x-rays taken, then had casts put on. We were a little shocked since we were just expecting a consult but both figured it was better to start this process sooner than later. So now we get to vivst them each week too. Each week they will stretch his feet a little further and put on new casts. After 5-6 weeks his feet should be straight but probably point too far down. Then they will do a little procedure involving cutting heel tendon which will let his foot sit in the correct position. Then they will cast some more while that heals. We get 3 more weeks of the casts then 3 months of wearing a brace 24/7 that can only be remove for baths. Once the 3 months is up then the brace must only be worn during bedtime & naps for 3 years.

The casts have added another level of frustration for all of us. It makes Logan more difficult to hold & change diapers. It also makes him really mad since he cannot move his legs like he was. This has caused some rough nights where he lets us no how unhappy he is every 20 minutes. Hopefully he will learn to accept them and calm down soon.

Casts to correct club feet

Tuesday afternoon Logan finally made it home. We are so happy!!! He does have to have his feeding tube & feeding pump (which is on an IV pole) attached to him all the time so it is a little challenging moving him around, but I’m sure we will get used to that in a few days. It is a lot less stuff than he had on him at the hospital. They sent us home with a heart rate & oxygen % monitor too but we only use that when we cannot keep an eye on him like during naps & at night.

He made it through his first night home without any problems. One of the benefits of having the continuous feed on him is that he never wakes up because he is hungry. Instead we are woke up by the feeding pump alarm telling us it is empty every 3 hours, but that is better than a crying baby. He had his first bath at home last night. Kim wanted to get the hospital smell off him asap. I think it went pretty well. It is probably not going to be one of his favorite things to do but it was nothing compared to some of the other stuff he had to endure at the hospital.

Yesterday’s procedure went fine. Logan was taken off the breathing tube (he had just for the surgery) before they put him back in his room. He was a little fussy at first but then his after surgery pain med kicked in and he slept for a few hours. By later afternoon he was awake and content again.

Based on the heart catheterization they think that they may be able to to wait a little while 1-6 months before having to do the 2nd heart surgery on him. They are still reviewing the pictures they took and plan to have a meeting with his heart surgeon on Monday night to make a final decision on the timing of his surgery. So Tues morning we will have a better idea of what the plan is for him.

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.

Kim is recovering nicely from the C section which went very smoothly. They expect to release her from Lakewood Ranch tomorrow.

Logan just came out of surgery and the Dr said everything went very well. They accomplished everything they were hoping to for the heart repair process. He still needs to make his way through the recovery part of this procedure so he is still in a critical stage (and will be for a couple days) but he has made it through the procedure and is currently in stable condition. As stable as you can be right after having heart surgery anyway. I will get to see him in a little while after they have him setup in the ICU .

Here is what the issue is…Tetralogy of Fallot. The link below explains it very well.
http://www.pted.org/?id=tetralogyfallot1

This morning he was not improving so the dr recommended that we either put in a temp fix (a shunt…basically an added valve to get the blood flowing where it should be) or we do repair surgery to close the VSD (the hole) and to increase the size of the outgoing valve that is too small. With the temp option they would have to operate again in 3-4 months and the risks with either option were about the same.

The dr recommended the repair procedure. He said since the risks were the same he would rather go in and fix some of the problems now.

So Logan in in surgery now. They said they will keep me updated during the procedure and it could take a while 6 or more hours which includes preping him and setting up the equipment needed.

Kim had Logan Paul Eisenhard (7 lbs, 7 oz, 19″) this morning at 9:29.
The C section procedure went fine. Kim is recovering.
Logan looked fine & healthy however when he got to the nursery they realized he was not crying like he should.
They first thought maybe they was some stuff still in his lungs so they cleared it and did and x-ray and found nothing.
The main problem was the lack of oxygen in his blood.
After ruling out some common things they got a little more serious…more dr’s.
They ended up not being able to stabilize the oxygen issue and decided he needed to be shipped to All Childrens (AC) in St Pete for further diagnosis.
They had a feeling the heart was not getting the oxygen into the blood.
The echo reading from AC confirmed there are 1 or 2 problems with the way his heart and lungs are interacting but they cannot tell exactly what the problem is from that.
They are doing a procedure now called heart cathordization. Basically putting some liquid into his heart and seeing where it goes or doesn’t go.
Once they are done with that they will have a better idea of what the real problems are and then we can talk about the next step.

Even worse…Kim is stuck at LWR recovering and has only been able to see Logan for a total of about 5 minutes. Neither of us have had a chance to hold him yet.
Hopefully she will be well enough tomorrow to come see him, but their orginal estimate was she would be able to leave on Tues.