Josiah had a pretty decent day today with temperature sitting around 100- 100.8, funny that we feel pretty happy about a temp like that. His O2 sats were good all day. We came back to the hospital tonight and found out that his temperature, unfortunately, spiked to 103. Bummer! Also, his nurse pulled back on his G-tube to see what was in his tummy (one of the bonuses to a G-tube, you just put big syringe on the end of it and pull and out comes whatever is hanging around in his belly). When she did this she pulled out what appears to be old dried blood. Not good. The Md's came and checked it out and think that he has an erosion of his stomach lining (an ulcer, I guess). He said that this happens a lot with chronically sick kids. So he got put on three new medicines tonight, Reglan, Zantac, and and IV Nexium. All of these are suppose to inhibit acid in his GI tract. I can't believe that Josiah just got put on 3 new medications. I don't think I like that very much.
Josiah turned 8 months old yesterday and today marks one year on this journey with Josiah and HLHS. It was a year ago today that we got Josiah's diagnosis of HLHS and our lives changed forever. I was 21 weeks pregnant, having a completely normal and easy pregnancy. That day we were thrown into a world that we never knew existed, I don't think I was ever even aware of the term congenital heart disease or what a pediatric cardiologist did. I can't even describe the feelings we experienced at that time, but we remained hopeful and as always optimistic. Over the next couple of weeks we began getting more and more bad news about Josiah's condition and his prognosis, yet we were hopeful that Josiah would beat the odds. With every time line they gave us we assumed that things would go as smoothly as possible for our baby. I remember still thinking in May, when I resigned from my job, "I'm overreacting, we'll probably just be home in a month." It amazes me everyday I sit beside Josiah at MUSC that this journey has been so long and so difficult. Yet we still remain hopeful. We have so much to be grateful for this year.
Josiah has been running a high temp, again, all day today. It got as high as 104.3 at one point today. We were able to get it down fairly quickly when that happened by putting cold wash clothes all over him. His temp has stayed above 101 all day. We are trying out a new plan today. The pharmacist seems to think that Josiah may be experiencing these fevers as of late as a result of some drug interactions. So we are taking him off the antibiotics he's been on and hoping that his fevers come down. I am a little nervous that we are stopping antibiotics on a day when Josiah's fever was as high 104.3, but at the same time there doesn't seem to be any other indications for infection. Josiah is acting fine and his white blood count is normal. Hopefully getting rid of these antibiotics will help his fever to come down.
Here is a video of Josiah getting his nightly chest physical therapy. Miss Yevette decided to try a new method tonight. For all of you who have think Josiah has some chubby cheeks, this proves it!
In unrelated news, Josiah is doing fine. His swelling has come down since his cath, but his lungs are still pretty wet. So we are again tinkering with his ventilator support and his diuretics (the meds that make him pee!). The past two days Josiah's heart rate has been elevated. We are not sure at this point if it is due to infection or if something else is going on, perhaps a side effect of some of the new medications he is on. I am still waiting to have some more serious conversations with our cardiologists and surgeons about our next steps with Josiah. It has been very busy around here the past couple of days and several of the Md's are on vacation for the long weekend. Here is a picture of Josiah from last night, still enjoying his fingers!
-A heart that holds onSo I know that we have left many people hanging, wondering about Josiah's cath results. It was not our intention but we didn't receive the best of news and it has taken Milo and I some time to talk and process things ourselves. We certainly don't have things figured out yet but we can at least share news with you now.
Got another update. Cath is done, Josiah will be back in PCICU in an hour. Just when you think it's going to be several more hours they surprise you!
Just got another update. They are finished getting pictures and pressures (don't know what the pressures are yet). His coractation of the aorta has been confirmed and so they are going to do the procedure to ballon it open. We were told yesterday that if they had to do that they were going to need to get to the heart from another location. So I am assuming that they are going to have to spend some time getting restarted.
Just received word that they have just begun the cath procedure. They took him back at 7:30am and have just now gotten the access to the arteries they needed. We were told it would be about 4 hours from this point. Thanks for praying.
Josiah's heart cath is scheduled for tomorrow morning. He is the first case, so he will be taken to the cath lab around 8am. The procedure will be around 4- 5 hours long. While this isn't surgery it is still a very invasive procedure as they are sending wires and tubing directly into his heart. The goal of this cath is to determine where Josiah is in regards to becoming a candidate for his next open heart surgery, the Glenn. Josiah has already passed the normal age range for this surgery but his lungs have proven to be a complication in him becoming a candidate for this surgery. So tomorrow they will take measurements and check on the pressures in both his heart and lungs. They will also be able to get a good glimpse of Josiah's heart function. The other main thing they will be doing is determining if there is in fact a coarctation (or narrowing) of his aorta. The Md's think that they are seeing one by echo and so if there is a coarctation they will have to balloon it open.
Josiah's been doing well since we got back to MUSC. I think he just loves it here and who wouldn't! He was looking a little rough when he arrived at MUSC, we think mostly from the transport. After a couple hours here he perked back up and began acting like himself again. We were certainly reassured to know that the MD's here think he's doing well. He is still having issues with dehydration and the Md's are tinkering with his diuretics (the medicines that helps him to urinate off extra fluid). They are going up on one and getting rid of another now. It truly is a balancing act. Josiah continues to spike temps every once in a while, but all the cultures come back negative. We continue to pray that he would quit messing with us!
The decision was made this morning to go back to MUSC. We are comfortable with this decision and it's what Milo and I felt was the right call last night before things got under way. We are grateful that we didn't have to push anyone into that this morning, but rather everyone agreed that today was the day. Thanks for your prayers in this situation.
