The Maxsons

Jon was released from the Intensive Care Unit at Phoenix Children’s Hospital today. He went home, made it up the stairs without trouble, and rested. It’s been hard for him to get sleep at the hospital with the constant beeping and poking, so he’s happy to be resting peacefully! His lungs are still very tight and he’s undergoing respiratory therapy to help them gain strength. In the next couple of weeks he’ll meet with his primary cardiologist and the surgeon that performed the surgery as follow-up. Perhaps tomorrow he’ll be up to writing his own post so you won’t have to just take my word for it that he’s ok! Thanks again for all of the prayers, thoughts, and comments to the blog. I’ve passed them all on to Jon throughout his days at the hospital and he appreciates the support from all of you! Take care!

Jon is doing well. He was up again for a little while today, but he tires easily. His current complaint is the shortness of breath. Both of his lungs were collapsed during surgery, and it will take some time to re-inflate them. He was given exercises to do to increase his lung capacity, but his chest is tight and sore, so it’s not all that much fun, but he does them without complaining. He might be released from the ICU as early as tomorrow or Saturday. The doctors need to be sure that his lungs are operating enough to keep him healthy, but other than that he can rest at home better than at the hospital. I’ll let you know as soon as he is released. He is able to communicate a little better now that he’s not so groggy, so he wanted me to thank you all for your prayers and concerns. He is blessed to have friends and family like you.

Jon’s chest tube and heart defibrillators were removed today (Thin wires laid on top of the heart that extend out the chest wall so his heart could be jumped like a car battery if necessary). Without all of the tubes he was able to walk a lap around the ICU with our mom, which was very exciting. He felt a lot better after walking and he is hoping to take another short stroll this evening. He’s going to try to only have morphine at bedtime, and take vicodin during the day so he’ll be less groggy. Tricia might sleep at home tonight if Jon doesn’t need her, which is good since she hasn’t gotten much sleep the past few days. Seth, I passed on your suggestion for Jon to watch Lost tonight. He hasn’t been alert enough to watch anything yet, but hopefully he’ll start staying awake more with his medicaions being less sedating. Thank you all for the continued support and prayers. Jon and our whole family really appreciate it.

Good evening, everybody! Jon’s breathing tube was removed late last night, which is of great comfort to him. His arterial line was also removed, so he’s just left with a chest tube (for drainage), a central line (for medications) and an IV (for basic fluids). He ate a little applesauce this afternoon and has been sitting up for 30-60 minutes at a time. His blood pressure is good and the doctors are very pleased with his progress. Tricia has been with him 24/7 since the surgery, so she’s pretty tired, but we all know Jon appreciates her company. The doctors are hoping to be able to remove his other tubes within the next couple of days (the longer they stay in the higher the risk of infection). He is pretty heavily medicated, and he gets frustrated that there isn’t a pain medication that won’t make him so drowsy, but he needs the pain meds, at least for now. Jon sends his love and appreciation of your prayers. I’ll keep you updated as he progresses.

Thank you for your prayers! Keep up the good work!

Jonathan came out of surgery about 3:30, about 7 hours after they first started, and he’s doing ok! Dr. Teodori was not able to repair the valves, but he was able to remove an enlarged portion of the aorta so it is now normal sized, he moved Jon’s pulmonary valve to replace the faulty aortic one, and he used a cadaver transplant valve to replace Jon’s old pulmonary valve. In plain English, the surgery seems to be a success! Jon’s heart started right up after they took him off of the bypass machine. He is starting to wake up and seems mostly frustrated with the respirator tube that is down his throat. The doctors are considering removing it tonight, but might wait until tomorrow depending on his oxygen levels. He is able to nod his head and squeeze our hands, and seems to be tolerating recovery like a champ! If all goes well, he will be released from the Pediatric Intensive Care Unit Friday or Saturday. Please continue to pray for a rapid recovery. Your thoughts and prayers mean a lot to Jon and our whole family. I will update you all as things progress,
Melissa

This is Melissa, Jon’s sister, and I will be updating his blog while he’s in the hospital. Not much news as of yet, He was taken into surgery about 8:30am. The surgeon spoke with the family beforehand and said he will send someone out to do updates 4 times throughout the surgery. I’ll update this blog again tonight once Jon is out of surgery and in recovery. Keep saying your prayers!

We met with the heart surgeon on Tuesday afternoon for the first time. When we’d gone previously (a couple months ago), we met with a nurse since he had been called into emergency surgery. We couldn’t really complain about that excuse!

Anyway, he went over the options and discussed outcomes with us. There are two good options for each problem (the valve and the aneurysm). For the valve, he could either replace it with a mechanical valve or perform the Ross Procedure to move my pulmonary valve to the aortic position and place a homograft (cadaver) valve into the pulmonary spot. The mechanical valves are touted as having a good chance of lasting a lifetime, as opposed to pig or cow valves, which only last about 10 years. Their downside, however, is the continuing need for blood thinning drugs to prevent possible clots on the mechanical part. The drugs can require frequent adjustment in dosage and make it more troublesome for blood to clot when you cut yourself or bruise. The Ross Procedure, then, appears to be the best choice for me. It offers an outcome with few restrictions on activity, no long-term medication, and similar risk (both during the operation and for possible re-operation at a future point).

Regarding the aneurysm, the choices are to either remove a section of the aorta and replace it with a Dacron graft or to simply cut out the weakened side of the wall and narrow the aorta manually by sewing it back together in a smaller width. The surgeon felt these options were also essentially identical in most respects. The chance that the manual aorta narrowing might require future re-operation is about the same as the Dacron graft requiring repair or causing infection at some point. What tipped the scale in favor of the manual repair option for me is that he mentioned that the Dacron doesn’t flex like normal blood vessels, tending to make the rest of the heart work a bit harder.

So, that’s the plan! I have to go in to do some lab work on Friday, and then just show up on Monday. I’ll have someone post an update or two here while I’m in the hospital next week. Tricia will be taking a week off work when I get out of the hospital, so that will be invaluable. Thanks for your support!

On Monday, September 25, I’ll be having open-heart bypass surgery at Phoenix Children’s Hospital to correct a congenital defect called a thoracic aortic aneurysm as well as a bicuspid aortic valve. The aneurysm is a fancy name for saying that the wall of the aorta is weakened and would eventually burst if it gets large enough without being corrected. With a bicuspid aortic valve, imagine a Mercedes symbol or a peace sign with three segments. That’s what a normal aortic valve looks like, with three “leaflets” that open and close as blood passes through. A bicuspid valve only has two leaflets, thus not closing properly after the blood goes through.

The actual procedure the surgeon will perform may not be decided until he gets inside and sees what should be done. He can either repair (if possible) or replace the aortic valve, and could support the aneurysm with an artificial stent inside the aorta, reducing the pressure on that wall. If the aortic valve must be replaced, he may perform the Ross Procedure, where my aortic valve is removed, my (healthy) pulmonary valve is moved over to the aortic position, and a homograft (cadaver) valve is inserted in the pulmonary spot. The Ross Procedure, though more complicated than a mechanical or biological (pig) valve replacement, offers the benefit of avoiding anti-coagulation medication necessary with mechanical valves and the re-operation likely required to replace a biological valve when its lifespan ends in 10-15 years.

I’ve known about this heart condition and have been monitored for it annually for the last 10 years or so. We’ve known that surgery might be necessary, and are glad to be doing it now with good health insurance and before our baby arrives in January. It’s about a 4-5 day hospital stay and 6-week first-stage recovery period. I’m hoping to only take 2 weeks off work and then probably work from home for a couple weeks. We meet with the surgeon on the 19th to go over more details and finalize arrangements. I’ll update things on this blog as we find out more, as well as after the surgery. Thanks for your support and thoughts in advance!

You’ve stumbled upon Jon’s new blog! Although the timing is purposeful (more on that in another post), it’s probably overdue. I enjoy writing and am looking forward to sharing thoughts about whatever comes to mind and the goings-on of the family and friends.

See more about me and some family photos using the links above. Try some other interesting sites with the links below. Suggest some that you like. Have your own site or blog? Let me know! Thanks for visiting!