We have been passing around a cold through the house lately. The kids have been congested with headaches and sore throats for the past few days. Yesterday John caught it and had a fever, aches, headache, congestion, and sore throat. Today John's starting to feel better, but I definitely caught it now. The kids still aren't feeling good, but hopefully we can all turn a corner soon! I've been Lysoling everything in the house constantly - even though it doesn't seem to be working yet! :( Even with Ethan not feeling well, his lungs didn't sound junky today! :) Definitely a huge blessing! Hopefully we can keep them clear and none of his congestion travels into them!
Upon listening to his heart, the doctors noted that his murmur has increased. It was listed as Stage 3 on the chart and now it's Stage 4. His heartbeat is very visible on his chest just by watching it - I've noticed it's become much more obvious these past few weeks. I brought it up to Dr. G, but I also don't know if I've only just noticed it or if it's gotten worse lately.
We also brought up the iron topic again. Nothing happened with it during our last discussions because we never came up with a solution for the liquid/adult pill being split for his correct dose. Today we decided that he'll start taking a multivitamin with iron to start. We'll see how things look at his next appointment in 3 months. If I remember correctly, his hemoglobin is around 13 and for his anatomy he should be around 18. Hopefully the iron will help increase this count. If the vitamin iron doesn't do the trick, we'll look into figuring out a regular iron for him to take instead.
Basically, we're happy with how Ethan looks right now. We have no plans to change anything (other than iron) or to do any intervention soon. The next step will be the open heart surgery to replace his conduit. We are just going to continue watching and waiting to see when that will happen. We are looking to wait until his saturations are in the low to mid-60s. That will tell us that he definitely is needing the surgery. Hopefully that can wait a LONG time and we don't have to worry about it anytime soon. We'll continue our every three month appointments, at home monitoring, and just watching to see what he needs.
On the way out of the hospital (after our obligatory Starbucks stop of course) a policeman stopped us in the lobby. Now Ethan had been slightly anxious about the cops all over the place - for some reason there were tons of police outside as well as inside today. Ethan LOVES police but still gets nervous when he sees them for some reason. This officer stopped us and asked me if he could give Ethan something. He asked Ethan what his name was. He then pulled out a little badge and told Ethan he was now an official police helper at the Clinic! He pinned the badge on him and told him that we can now count on him! Ethan felt so special and I was so happy that this policeman took a few minutes out of his day to do that for him! Even something that might seem like a little gesture to him just really made Ethan so incredibly happy - especially after hours of appointments! :) I wish I would have gotten a picture of the two of them together!
That pretty much wraps up the medical stuff.
Ethan's class is planning a field trip to the zoo in the beginning of May. I signed up to be a parent volunteer since obviously he wouldn't be able to go roaming the zoo without me there! Each parent is supposed to be assigned three children to be in charge of. I contacted Ethan's teacher today to make sure that him using a stroller to get around the zoo wouldn't cause a problem. He'd never be able to walk around there, and my back would break if I had to carry him! She said a stroller would be no problem and she also let me know that I was only assigned him with no other kids to watch. I was a little surprised, but she probably just wanted to make sure that if Ethan needed to rest, other kids weren't being held up because of him. It's probably a good idea.
I spoke with another heart mom about a stroller she uses for her son. He's close to Ethan's age, so I figured she might be able to recommend a good one. She said she absolutely loves the one she uses and it goes up to 75 pounds, so she gave me the info on it and we'll be looking to get that soon. I have to get it off Amazon or something since our regular stores only carry strollers that hold up to 50 pounds. Thankfully the one she recommended is only $400 whereas most of the other 75 pound strollers were closer to $800! Still crazy expensive for a stroller, but at least it'll let us get around much more easily! It also has a basket thing underneath to hold oxygen if necessary, so that's great. :)
Another thing we were able to do was go to my friend's son's 1st birthday party! He is absolutely adorable and we had a great time at the party! There were lots of kids for Callie and Ethan to play with, great food, and fun goody bags for the kids to enjoy! :) Even Fiona got in on the fun when the balloons came home! ;)
Callie has another spelling bee to attend tomorrow night (Thursday). She won her class round, so now all the class winners are going to compete in this round two competition. The winner of this goes on to the county spelling bee! Unfortunately, Callie has not put forth much effort (or any at all) in studying her words, so we'll see how well she does tomorrow! I'm still pretty excited that she's involved in this! Hopefully she feels better so she can concentrate!
Other than that, we're just keeping busy with school, work, girl scouts, soccer, and softball. Our school has decided to make each school day a half hour longer from April 7-May 30. This will make up 4 of the snow days we used. The fifth snow day to make up will be done with a "blizzard bag". This is apparently a bag of work that the kids will have to complete over spring break. That should be interesting. Ethan asked to play soccer and baseball this spring. Unfortunately, I had to say no since he's not allowed due to his heart. :( He was sad, so instead he's going to sign up for the S.N.A.G program (starting new at golf). He also expressed interest in returning to karate. I told him to start with the golf since now's the season for it. In the fall if he's still interested, we can look into doing karate again. It'd be good for him, but I just don't know if I can handle four separate activities at once! And that's not even including my own work and school!
I forgot to add in pictures of the kids riding their quads. The weather finally warmed up enough for them to get out and ride a few times! They absolutely love it and have such a great time riding around!
Please keep us in your prayers for health and sleep. Ethan is definitely struggling in the sleep area again! Also please keep our heart friends that are sick right now (one in particular is waiting for a new heart) as well as those who have recently earned their angel wings. It has definitely been a rough few weeks in the heart community, but I pray for some peace and good news for a while! Thank you all for your love and support!
No comments:
Post a Comment