Update...Will we make it to the sunshine?

So, Isaac had one more day of a high fever and now just has the cough and the big time crabbies! I think he needs to get out of the house. I hate to send him to school because I am afraid he will get something new. Jerry started his cough Friday night but never got a fever...strange...but so good! I did bring him in today because his cough seemed pretty bad and we ARE leaving for the cruise on Friday! Turns out he had an ear infection. I was pretty surprised as he really seems very happy, just congested and coughing. It is good that he is on an antibiotic and that gives me less to worry about with him. I am so worried that we might not make it to Tampa. Isaac will be crushed as will all of us.

We started the periactin (appetite stimulant) on Saturday night (it's 2x/day). We noticed right away that it made him calm and sleepy. He only woke once that night to eat. We may have found a new use for this drug! He has taken naps without any waking and is just altogether calmer about going to sleep. A 2 hour uninterrupted nap should NOT be underestimated! Not like he's druged or anything...just comfortable and not edgy....can't quite find the perfect description..but anyway, it's all good.

As for the eating, he has been eating and drinking faster than usual and asking for food by name more often. He had a really good day of eating on Sunday but then threw up twice. He threw up once when he had a little coughing spell and then again when he wouldn't quit playing with the dishwasher door (he knows how to unlock it) and pulled it down on his head!! It hurt so he cried and threw up. I cried too. I just stood there in tears as all of his calories went down the drain. Now his cold has been pretty bad today and he is not eating well...still drinking formula faster than usual. I am still hopeful. Also, this seems impossible but, He has been weighing 18.6 or 18.4 on our scale...tonight....20 pounds!!! I am not really sure how or why but I think I can turn the poor kid's car seat around!! This week he goes to get synegis shots so we will get a weight at the doctors office then and it usually matches mine. He's been doing better at check ups and now shots again, ugh! I guess I am a little skeptical of the weight or else it would have been it's own entry. I called the surgeon's office today and they will call me back with an appointment time to start the process for the G-tube...but I am not giving up yet.

JJ's hair. I guess it's a mom thing. I know it's messy and moppy but to me there is something so cute about his messy baby look. I just have not wanted to cut it. I cut Isaac's at about this age but his was a little thicker, a few curls, and nicer looking. So last week I was really ready to take him but with Isaac sick we never got out. Today his bangs were in his eyes and bugging him really bad so I did a quick "trim" on the them. Oops! I wish he were old enough that I could say he did it himself. I knew I had limited time for him to be still so ...oh well. Now he will look like a dork in all of our cruise photos.

Pictures: HOW MOMMY GETS PACKING DONE

video: Friend Trish helped find this perfect shirt for JJ. Notice...nothing said about a G-tube!!

In this video, he does this eye rolling back thing...I don't know if what he could have been looking at...look strange to anyone else? Never saw him do it before.

Time has run out....G-Tube

The GI doc yesterday said that JJ needs to have a G-tube put in. This is a surgically placed tube into his stomach that will allow him to get special formula feedings while still eating as much as he wants by mouth. There. Now that I have accepted that (NOT!) I can tell you that I still have hope of avoiding it. We are going to try an appetite stimulant called periactin while we begin the process of contacting the surgeon for the G tube. I am praying that this is what my little guy needs. He has weighed the same for just about 3 months. He is far past the point at which most children would start a tube. I understand the necessity of it but wish there were more answers or a more clear picture of the problem. The best explanation so far is that it is a problem caused by his painful eating experience prior to his heart function improving and that he is having trouble changing these habits. Makes some sense and I guess the psyche is never easily understood, but it is confusing to me that he has days of eating more normally in between the spurts of not eating. He ate a better lunch yesterday than Isaac ever ate at his age. He ate a whole hot dog dipped in Catalina dressing, a whole gogurt, and a few apple slices.

So we will do what we have to do but I have my concerns that there is some other issue not yet identified. Hopefully, if there is anything else, the pretesting before the surgery will find it.

Isaac is still coughing pretty bad and had a fever of 102.2 yesterday. Doc said if there is a fever today he should get a chest x-ray. So far only a low grade one today. JJ was coughing a horrible barking cough last night but is clear of any other symptoms and seems fine today!! If he is going to get sick we hope he does it now and gets over it....we leave for our cruise on Friday!!

The eating rollercoaster

JJ started eating really well on Friday and continued until today when he was back to his old habits. I really thought this time it was going to stick! A mom I talked to a while back who had a child with ALCAPA said it took her daughter over a year to consistently eat normal after her surgery. She had the same ups and downs that JJ does but she did have a feeding tube.

video and pic: Jerry loves to sit "on I lap" for stories. ISaac loves to read to him but hopes JJ will soon know how to play big boy games!

Celebrate!

Pictures: JJ at appt , fun w water. I guess I should worry about Isaac's weight too! The other day I had his and Jerry's clothes laid out. He got dressed in JJ's pants!!! He calls to me that he thinks the pants i got out for him are too small! I cannot believe he had those buttoned!

And Yes, JJ will soon have a hair cut. I know it is a mommy thing...I just hate to cut his baby hair. Daddy wants it cut badly, but I think he's just jealous of all of JJ's hair!!

Jerry's heart function is still in the normal range..the same as last time. That leaves a little mystery regarding the strange breathing episodes but all I needed to hear is that he is fine. Of course his heart is still not normal but functioning normal.

The bad news is he may have lost a few ounces and we will probably soon end up with the feeding tube that we have barely avoided for so long. It is sad to think that we just can't get our little guy to do the most normal thing...eat! Doc thinks when he is having periods of not eating well that it is due to memory of painful eating experiences when he was in such bad shape with his heart. The stomach shuts down with heart failure and then there is great discomfort and chest pain. Seems strange to me that it is so up and down. We will follow up with GI.

Our appointment went really well in that JJ was pretty happy most of the time and did not cry as much as usual for exams and echo. Actually, he hardly cried at all and didn't even throw up! He verbalized everything about going to his appointment and I think that helps him. He says the docs name, makes noises for heart echo and talks about watching Barney during his heart pictures. Oh, and talks about the water fountains and the fish in the tank down the hall.

Another Hurdle

JJ is sick with a bad cold. Isaac has a bad cough but JJ's is more nasal congestion. He is kind of miserable, not eating, and drinking a little. Probably normal for a cold...I just don't know how much he can afford to lose since he had not been eating or drinking much for the week before this. He seems ok for now.

Picture: JJ has taken a liking to being swaddled like a newborn. It is quite funny actually. It started at my mom's when he was his usual restless self and I was thinking that a weighted blanket would feel good to him. So I tried this and he was out so quick. It is now a regular thing and he will request it and have me redo it if it is too loose and he can wiggle his hand out. For anyone that understands, he has a few sensory things going on. He loves this certain method of sensory input...deep pressure on his joints (an OT may understand). He loves for Isaac to massage his cheeks and will go from crazy boy to trance like instantly. Comes in handy on the airplane!

worries

Still hardly eating or drinking. Although I must say that we were so excited today when he ate almost an entire serving of Pringles (loaded baked potato flavor). He ate 5 and 6 is a serving. He did not eat much else. As usual, he was running around playing, very happy and active, and still very ornery. He just beams and giggles when he is opening the dishwasher or standing on the couch. I don't know where his energy is coming from. He has been on Mirilax for constipation for a week. Pooping great but hasn't changed his eating. Cardiology appointment is on Wed. and we just can't wait to hear the news that everything is ok. Isaac has a bad cold. Hoping JJ doesn't get it. Feeling very vulnerable right now like we should just stay home and be really careful about germs.

Seems ok with breathing

Picture

Early January JJ LOVES snow and sled riding with Isaac!

The boots were hysterical....size 5 on his size 3 feet!

Strangely, we really haven't seen any episodes of the difficult breathing since we went to see Terri (Thanks Terri, I knew you would make him better!). Maybe once or twice I wondered if he was breathing funny and took a closer look but he seemed ok. However, He is hardly eating at all the last 4 days. This is the worst eating I have seen since a few weeks after his surgery. He is just not interested. It is one bite of this a taste of that and toss it on the floor...stuff he usually never refuses. That is concerning since he has not gained weight in 2 months...now he might be losing. His formula intake isn't great either...today so far at 9 pm, he has had 12 ounces.

We tried a 30 cal mix from whole milk and Carnation IB. The only flavor I could find is chocolate. I think ...IT HAS CAFFEINE! The two days that we were giving him a good amount of it (we were mixing it with regular formula) he was up all night. So, today we went back to regular formula and hope to get some sleep tonight.

Getting checked for the intermittent labored breathing

Jerry's breathing is concerning us more over the last few days. He has been kind of breathing odd at times since his virus after Christmas. It is subtle and then he runs around playing like nothing is wrong. Tomorrow (Tuesday) we will go see our friend/nurse practitioner Terri and see if she can identify anything to be worried about. If there is reason, we will get a chest x-ray. Terri and a few other friends were so helpful on the phone today as I pondered what could be wrong and let my mind wander back to unexpected hospital stays with minimal symptoms. presenting. Eating is not great the last few days but here is a video from a fairly good meal gone bad(caught the end of it). See, he really does know HOW to eat!

problem with posting the above and the video

Tuesday pm
Anyways, JJ checked out ok at the pediatrician. We did leave with an order for an x-ray to be done if we feel worried. It is like a broken record playing in my head (and in everyone’s ears)...Jerry was in bad shape a few times with little or no symptoms. When we went to the cardiologist when he was 3 weeks old, the cardiologist said he looked so comfortable, lungs sounded clear, EKG was ok, and that we could wait a few weeks to have the echo if we wanted. I requested to do it then...mostly because arranging care for Isaac was challenging. From the echo we went straight to PICU. He wasn't as good as he looked. Of course, now, his real significant original problem is fixed so likelihood of heart failure is so much less. So we will watch and wait to see. He seemed better this morning than other mornings so maybe we won't see it anymore.