Wednesday, March 30, 2011

Feeling Better

Jerry is feeling much better now. Always on guard for the next one. I think the cabin fever really got to me and I signed Jerry up for a little sports class that I do with him. He's going to love it and I feel better about the fact that I can be right with him and purell accordingly...instead of water breaks we will have purell breaks! And if anyone coughs we will probably run for the door quick! I think we will all being feeling less crazy with a just a few nice days here and there to get outside too.

Friday, March 25, 2011

My Ears Are Making Farting Noises!

This is actually Bubbles the Clown from November but Bubbles has made a reappearance. Isn't he cute? Don't ya just want to kiss him?

The cold mentioned in the last post pretty much turned into this. We went to the dr early...probably too early...and it was dx as a cold. I agreed at that time it was but knew that it would almost for sure go into a sinus and ear infection. I was mostly worried about the fact that he wasn't eating or drinking anything (for real...for 2 days he had a total of 12 ounces) and waking so much at night. He did start eating and drinking better so it must have been a sore throat in the beginning but low grade fever and congestion continued. Yesterday was about 10 days into it and he was breathing hard and a little clingy. Still, pretty happy and maybe less tired than me! He was pulling on his ears but saying they didn't hurt. So then he comes up to me "Mommy, you hear that?" I say, "Noooo, I don't hear anything. What?" "THAT'S MY EARS MAKING THOSE FARTING NOISES!" I guess the swallowing popping thing??? He was so proud! ANYWAY, a med center trip yesterday, a pretty bad ear infection and sinus infection. Now, we can look forward to better sleep in a few days and better eating.

I wish I had more to say heart-wise. Still just waiting to get this phone consultation with Dr. Towbin. I really think Jerry's increase in medication has helped him. But I feel I can never be sure what is going on inside. It a common conversation among heart moms that their children had few or no symptoms when they were in heart failure and their life compromised. I don't really think anything will happen to Jerry anytime soon and I do think I know what signs to watch for. Today he shocked me how much he ran around the house and kept up with Isaac and did not seem to be having too much trouble. But later he came up the stairs and was really out of breath and kind of sprawled out on the floor for a minute. Hard to tell. Looking forward to some time when no one in the house is sick and to warmer weather!

Wednesday, March 16, 2011

Just another cold...we hope!

Jerry started his cold last night. He is a little lower on energy but really seems fine. He just will hardly drink or eat anything. So far today he has had bites of a "raman noodle sandwich (the dry noodles left intact right out of the package!)," 3 mini Popsicles, a sip of juice and 2 ounces of formula. I don't know how he has the energy he does have! I ended up having a pretty bad bronchitis and I am so glad he does not have that!

My favorite brother picture.

Monday, March 14, 2011

whew...seems fine today

Jerry seems OK today. He woke up a lot last night but just to drink formula. When John was with him when he woke crying the time I spoke of below, he was very sweaty. I checked his heart rate before I went to bed and it was really low. The sweating and the low heart rate could be a concern or could be nothing so I will probably just check in with the card today. He seems great today so far though. UPDATE: Cardiology nurse said those heart rates are ok for him although the low rate with the fever and crying last week is a little odd but since everything else seems fine it is ok.

Sunday, March 13, 2011

Couped Up for Nothing!

Jerry had a great day today with activity level and eating. Until dinner, when he refused to eat anything and suddenly got pretty fussy. He went to sleep quickly before 7 (even with the time adjustment) so I was a little worried. As I was just getting out of the shower I heard him crying and John was with him. He's quiet now. I am thinking he is going to get this chest cold thing that I have that has been seeming a little worse today. Isaac has been coughing more again but doesn't seem sick. I have laryngitis and am pretty out of breath and tired. I have tried to be careful in how close I get to him but now I am so afraid that he is getting it. He would have been better off this weekend having a weekend out and about! It may turn out to not be a big deal and I am hoping that we see him get through a few illnesses without too much weight loss or impact on his heart. Hopefully he will sleep through the night (except for his usual wake to drink formula) and he is not getting anything!

Wednesday, March 9, 2011

little updates...or should I say long?

My little guy seems to be doing great now after a recent virus and then a cold with ear infections.
Isaac had the virus first of just a fever for 2 to 3 days with no other symptoms. Just when I thought it been long enough and Jerry was in the clear, he woke up one morning breathing really hard and crying a lot. He did not have a fever but kept breathing hard for 3 hours and threw up a few times. Then he got the fever which he had on and off for 2 or so days. He really didn't breath hard the rest of the time with a fever but looked very pale and no energy. Of course not eating at all. After a day or 2 with no fever he woke from a nap crying that his ears hurt and felt warm.
He had double ear infections and started antibiotics.
He is doing great now. I have this chest cold thing that I
hope is something that I can't pass on to him!

It has been hard being couped up trying to avoid germs.
But we had a good 2 months with not even a cold so it is worth it. As you can see in the picture above, we can do swimming because of the chlorine killing germs. The Vaughn Center not too far from our house has a great indoor water park area that never has more than a few families.
The hours are a little tricky so we only did that once. Can't wait for spring so we can get out more.

Jerry seems to be picking up his eating pretty well after this last virus but we continue to have ups and downs. Every bite of food is a big deal and "How did eating go?" is always the discussion at the end of the day. He has not taken to ice cream as much as I would like but during this one visit to McDonalds he did pretty well!
The picture of him feeding his apple to the bear; I tried to get it on video as Jerry was doing some feeding play therapy. He was "feeding" the bear and saying "you can swallow" and "I'm so proud of you, I love you." It was so sweet. If you see the doll in the background...Yes that IS Jerry's. A gift from brother for Christmas that Daddy is more than unhappy about! I encouraged it because of the opportunity for play therapy in the feeding realm. He does feed the baby and talk about the baby "spit it out because it might hurt her belly....She's too full." It is a great gateway to communicate with him and encourage him about his eating.

Jerry and I have made some new friends in Canada. Tracey is the mom of Avery, a 4 year old girl with ALCAPA. Like Jerry, she was diagnosed and repaired late. She is in the same boat as us knowing that a heart transplant is almost for sure in the future. We email very often and it is amazing the similarities with eating, response to illnesses, and heart condition. Tracey has been an amazing blessing to me and I pray for her and her family. Avery has a sister a few years older than her. Jerry and Avery are two of a very, very rare kind.

Dr. Towbin's (cardiomyopathy guru) office in Cincinnati has arranged to have all of Jerry's records sent to him. His office will arrange for a phone consultation once they have gotten them. I am so nervous about this phone call. I want to be calm so I can hear and remember everything he says and I have a million questions as well. I have a feeling we will be traveling there at some point to see him.

The other pictures (I never know how they will turn out in the saved and posted version of what I write)...crazy hair returns (a hair cut is much in need but we seem unable to fit it in our schedule); Jerry is so sweet...even his temper tantrums are kind of funny and sweet. In the one mad face picture, he was mad that I had put his block tower away and told me "that makes me so mad, that's not fair!" A few minutes (the happy picture) later he said "that's OK, I will build a better one now."

Jerry "looks good" right now and does seem much better since his enalapril increase. I hope and pray that something can still change with his heart so that we can put heart transplant out of the picture of his life. If you see him, you would maybe think "what is there to worry about, he looks fine?" Only if you live with this or you talk to lots of other parents of children with heart disease do you know the fear we live with every day. That fear is mostly hidden too, behind the scenes of everyday life and feeling positive about successes. Crazy nervous parent feelings? Some might think so but when you talk to people who have had the clear check up only to have there child become very sick quickly or die from an unexpected cardiac arrest, the worry doesn't seem so silly. I figure it is healthy as long as it keeps us vigilant without ruining the happiness we can find in raising our boys.

Recently, I sat rocking Jerry in his room at night (he is still so much my little baby) I was tearing up a bit thinking about all he's been through and all the unknown of his future. He seemed to be almost asleep on me but then sat up and started talking. He said, "Mommy, you have to be strong like this (showing me his muscles). You have to be strong to hold on for the ride. Hold on to the horsey on the merry go round like this."

And now my little baby interrupts me to "put Playhouse Disney games on this computer."