Saturday, January 30, 2010
Ok. This is a warning. This will be really long and full of detail. I have a hard time shortening things when I have it in my head what I want to say. If you know me well, you know that I talk like this too! Yes, John just loves this about me. If you want the short scoop...Jerry is fine as far as we know, next echo is February 17th, weight and growth problems being further assessed. Now you can proceed to the pictures and videos! The rest is for friends interested in the details of the last month and for my own journaling.
Last post, we were praying that JJ would not get the fever and virus that Isaac had when we first got to Cleveland for Christmas. We were fortunate enough to get through Christmas Day, but JJ was sick at night the day after Christmas. His fever reached 104 at least and he was pretty sick. We took him to the ER to make sure he did not have pneumonia. It is so hard in these situations because I want to be cautious and not take any chances but I am always so optimistic (or in denial!) and just don't want to put him through any procedures that are not necessary. I was just thinking..."his heart is doing better, it's just a fever, Isaac got better quickly and so will JJ." We were able to get his fevers down when we followed advice to give him a little extra motrin. His x-ray showed no pneumonia but showed hyperinflation, which gave the doctor concern that he was having trouble breathing. He was having some trouble breathing with the high fevers, but it was hard to tell how worried to be. His nose was very congested so it is hard to differentiate and in between feeling awful, he was running around playing a little. There was discussion about giving him a breathing treatment but we decided against it. I explained that he seemed to be breathing fine at the time and he probably would not be if I forced a mask over his face for 10 minutes. The kind doc agreed and we were allowed to leave with instruction to return with any breathing problems or decrease in fluid intake. After another day he started having longer breaks in between fevers but did decrease drinking. We just wanted to go home. John was scheduled to work the Monday following Christmas but we could not think about the drive until Jerry was doing better. When his fever started getting better we were not sure we could drive as sleep deprived as we were. It was a toss up as to whether or not he needed IV hydration. I (optimistic!) figured his fever was getting better and now he would drink better. We finally made the trip home and it WAS rough. Jerry was verry uncomfortable and was crying a lot and batting at his head and ears a lot. I got him in the our pediatrician the next day (New Years Eve). He was barely hydrated and had ear infections. The pediatrician being positive like me, must have figured that he would start drinking once the antibiotic kicked in. Of course all of this time I am worried about his heart but know that nothing except an echo would ease my fears. So Augmentin was the drug of choice for the ear infections. I gasped as the doctor told me this but held back saying anything...unfortunately. I knew this was the one that gives most kids horrible diarrhea. Sure enough JJ had it nonstop for 2 days and had a very painful diaper rash. I called my friend Terri (our Nurse Practitioner) on a Sunday twice trying to figure out what to do. We got the antibiotic changed and used some left over prescription cream we had for his rash. Another rough couple days worrying about JJ losing hydration and weight. After that he began eating and drinking pretty well again and I think we just skimmed by going to the hospital again. On one hand I am glad we did not push more for IV hydration because he got through it and did not need another scary hospital experience. On the other hand, deydration is one of the biggest risk factors for his heart regressing and he has the double risk because of having multiple blood clotting disorders. I since emailed with his hematologist and found out that he really should be hydrated sooner than another child because of the risk of blood clots. I am still worried a bit that the illness caused some problem with his heart. Since then, he sounds congestion at night when sleeping and his breathing is odd at night, when he first wakes up, and a few other times. On the contrary, he is doing laps around the house with his brother "run, run, I-I" run run with Isaac.
A fun side note in the realm of stress...In the ER Jerry sang through his tears and sniffles and got oohs and aahs from all the nurses. He sings some of the words to popular nursery rhyme songs. He always manages to say goodbye to the nurses while crying after his monthly shots too!
Weight and growth continue to be a concern. He is eating much better then he used but not usually a normal amount. He throws up often when he is upset. We were at the GI doc yesterday and will try another method of 30 cal formula (carnation IB with whole milk) and Mirilax in case part of the problem is constipation. He is pretty stuck on the yucky taste of formula and does not go for the flavored stuff so this is a tough hurdle. We will go back to GI in 3 weeks. I guess if things are not better we are looking at celiac's disease (we love bread and grains in our house so that CAN"T possibly be it!!) or maybe an endoscopy to see if anything else is wrong. We will see a nutritionist in the mean time to really add up about how many calories he is getting. I guess I will take a picture of what food I give him and a picture afterward of what is chewed and spit out, what is on the floor, what it is in his hair and she'll figure it out from there! ha ha. I was so proud of JJ at Dr. Kagalwalla's (GI). He became anxious entering the hospital (I think he just knows the look..and the elevators give him a clue) but then calmed down and played in the waiting room while I undressed him for weighing. Entering the clinic room put him over the edge and he threw up several times (I'm getting better, I got it all in the sink!). After he was weighed and the nurse brought some toys in for him, he was so happy and let the doctor do a short exam without any crying or fussing, he was smiling and liked trying to say "Kagalwalla." His weight was 18 pounds and 14 ounces (a pound less than 2 or so weeks ago). Scales can vary, but he wasn't gaining I guess. I was kind of surprised since I thought he was eating pretty well. All of the thyroid tests we did came back normal.
We had a 5 day visit in Cleveland from Sat the 23rd until this past Wed. It was great! No one got sick!! I think that is a first. We had bought these tickets when Southwest was having a great sale...$25 each way with JJ still being free! We will be looking for another deal like this so that Daddy can take the boys and give MOMMY the break!! To be home alone......ahhhh. I do love visiting and especially love having the kids see family and friends. The hardest thing about being here away from family is not really having anyone to share joy about the kids and all the "exciting" things they do. We have great friends here but everyone is busy with their own and it is just not the same. So visiting Cleveland always gives me a taste of that closeness that I miss. When we saw Gigi's (my mom) van pull up to get us, JJ and Isaac were both so excited! JJ clapped and yelled "Gigi Yea!!" The closeness I feel to my dad when I am there is bittersweet. I just can't be there without spending some time in his office in the basement. I love seeing his last writing in notes and all of his certificates of accomplishment. Next visit to Cleveland, I have to find a way to see some friends. I always think we will, but time goes by so fast with family and trying to keep a nap schedule.
One of the best Christmas gifts I got was from John, but hidden in a family white elephant exchange. It was planned that I would be last to pick the one package left. I thought it was just a package brought for the exchange so I was quite shocked to find a Carnival brochure and itinerary. I was thinking "who could afford to throw this in our $20 exchange and we can't go on a cruise, we have 2 kids." Anyways, I soon realized mine and John's pictures were pasted into the (very outdated) photo. I was perplexed for several minutes while I also noticed the kids pictures pasted on. When I realized the we were going on a cruise WITH the kids I asked if anyone wanted to trade.....after all, it was a white elephant! Surprisingly, no one took me up on it. Actually I was very appreciative of John's thoughtfulness and ability to keep a surprise. I think he would admit, now, that his thoughtfulness was more "impulsiveness" as he found some incredibly good deals. We are all excited, but a bit apprehensive about all the travel with our two active and fragile boys. Since John is taking all of these vacation days, hopefully we will not run into any situations this year where we need him home. We will be gone 8 or 9 days as we will spend a few days on each side with my brother in Tampa. We will get to see cousin Dougy and the new baby cousin Brady!! All of the travel and various sleeping arrangements could prove very stressful but we are determined to have realistic expectations and a fun time. There will be plenty of activities for Isaac but nothing for JJ...he's hanging with mom and dad unless we can find a babysitter on board. Any advice from seasoned cruisers would be greatly appreciated!! The boys have been excellent on the plane rides we have done to Cleveland so if they can just extend that a little longer we should be good.
Well, I have had the luxury of being at Panera typing away on this post. Very therapeutic I must say. Being away seems to be the only way I can focus on this when there is much to say. I will try to select a few pictures and videos to add. Thanks to all of you for continuing to think of us and for the emails to check on us!!