Oh today was a dreadfully long day! I left early for his appointment because my ped (whose out of town this week) ordered some labs. She wanted me to get them before his appointment and then cardiology could check them while we were there. Lets just say it was a good thing I left early! While I was driving something just didn't feel right. Then I noticed it was coming from my back, right tire. So I pulled over into a gas station and low and behold, a huge bolt was in my tire! There was no way I could drive and risk blowing my tire on the freeway with just me and Jax. So I ran to Discount tire and told the guy I was in a huge hurry to get to a doctors appointment. After the car sat without being pulled in for 10 mins, I asked the manager if it was faster to fix the tire or replace it. He said cheaper is always better, and I said not when I have an appointment I have to get to! So he made sure my tire was done. I owe those guys some donuts, we were only 5 mins late to our appointment! Although the labs didn't get drawn.
Jax was asleep when I got there but woke as soon as the echo started. And for some reason, he was super cranky. He just cried and cried the whole time! And he cried at our doctors appointment as well.
The results.. his pressures are still up, a little higher than his last echo. But as my dear friend Tammy so eloquently put it, our cardiologist is like Eeyore, slow and indecisive! He doesn't want to do anything right now, but he gave me options of things he could do. The cath lab being one of those. But he can't say exactly what the cath lab would do. Tell us more accurate pressures is all. I don't think he knows what to try next. My plan now is to go back to pulmo and get her advice on all this. Do we treat the PH with another med, or is other lung disease getting worse as well? Cardiology agreed that most patients don't drop their sats with PH unless it gets really bad, so PH is probably not making his sats worse. I just don't know what we are going to do with those lungs of his, they are just so sick! 4 years of torture. 4 years of PH, aspirating, and high pressure support from ventilators takes its toll!
We went for the labs after our appointment. IV team had to come draw him because of his horrible veins. I didn't leave the hospital until 5:30.
So it was quite a long day and I'm exhausted! Here's a couple of pictures I snapped in between his bouts of crying. The quality is horrible!
A couple of people have asked about the yard sale. It will be the 14th of August. If you live in the Salt Lake area and have stuff to donate, or just want to come help out, please email me!
1 month ago
19 comments:
Despite the long crappy day, crying and all...he has such a beautiful little face! I love his cuteness!
Sorry it was such a long day! I was hoping you'd have gotten some more answers from the appt...
Oh, Lacey, sounds like a long, difficult day. Will be praying for some rest and some good decisions coming up for Jax. Sending you a cyber hug.
you should have called again! I wasn't doing anything that important I would have come up and visited with you while yo waited
Sorry for the long day my friend and I REALLY want you to get down here to get to Children's and Dr.Bedran.
Hope you all get some rest tonight.Tomorrow is a new day.
At least it's over - sorry you still don't have answers. See you tomorrow at 1:00-ish.
Despite the rough day, Jax is BEAUTIFUL!! I wish there were more answers, this unsurity must be awful. I do hope you guys get to california soon, as things seem to be better there! Hugs to Jax and to you too
So sorry you had such a long and frustruating day! And, so sorry that you didn't get better news too!
Praying your Pulmo will have a better plan and Jax's lungs can begin the healing process.
I know that I've said this before.....but, Gavin's lungs were once a total mess as well. He was on his way to being trached before we went to our 2nd Pulmo doc. He made a world of difference in Gavin's and our life!
After he started Gavin on a obscene amount of daily nebulizers.....something most Pulmos don't do.....Gavin's PH became normal and he was able to get off O2 and spend a whole lot less time in the hospital.
Like I said, our Pulmo said that most doctors would look at Gavin's list of nebs and say that is way too much, but he knew that this is what was needed to heal his lungs.
Just 2 weeks ago we were told that Gavin could just go down to one maintenance neb per day, because his lungs are looking and sounding so good. And, Gavin still has a moderate leak in his heart, so this is amazing!
I would ask that Jax be put on some serious nebs....the treatment doesn't happen at once....it can take a LONG while for healing, but it CAN happen!
Gavin was on Zopenex and Atrovent 3 times a day and Pulmicort once daily, for over a year....gradually going down on them as his lungs healed. It's a pain to do the nebs so often, but it has been SO WORTH it in the end!
Praying for you and Jax! Love and Hugs!!
Ive been following your blog for awhile. Got a sweet pea of my own! He is the youngest of our five.
Any way, Im commenting because Im a firm believer (now) that when a dr says they are not sure what to do next, it is time for a second opinion.
A second opinion saved my son's life.
Do your reserch...where is the best? Boston, Philly are the best childrens cardio programs, also the grapevine says Stanford specialized in ped PH.
It easy to get that 2,3,4th opinion...just go to the hospital you are interested in website, get the drs email and and send them email, ask them to review Jaxons records, call your local hospital med records and tell them to send them...its all free to you. I have never heard of any dr turning down a parent asking for a 2nd opnion.
There is no cost until you actually take Jaxon somewhere, and insurance will cover 2nd opinions (although there may be red tape and/or higher copay rates)
many prayers, Kim kknipp@kc.rr.com
Sorry to hear about your long day. Can't believe it started with a flat tire!!! UGH, that's the worst! The pictures are sweet. Sorry he was so upset through much of it. Hugs to you both.
Lacey, what a day! I am glad the tire guy was able to get you in and out and off to your appointment. I hope that the pulmo has some good ideas for Jaxson.
Regardless of the quality of photos, Jaxson shines in all of them! :)
Girl....your strength amazes me. I would have just given up if my tire went flat. Sorry that you have nothing but lame answers from the cardiologist. Is Boston still in the picture?
So sorry for such a long day with a flat tire on top of it. I hope you get some answers that help that sweet boy out soon.
his eyes look like he had been crying poor little boy hoping you guys have a relaxing day.
what a day. as if hospital days aren't long enough...wow
I loved the pics of Jax, though, he looks so sweet...even if he had been crying.
seriously- a bolt in your tire? so happy you realized it before you guys got on the highway! also happy the manager realized you needed your tire fixed very quickly!!! sorry the cardiologist appt didn't really give you any answers - i hope your pulmonologist can take the info gathered from this appt and figure something out for jaxson!
I'm tired after reading all of that. You must be exhausted! Are you still considering a port for lab draws?
Can I just say he is so cute!!!! I am sorry that you guys had such a crappy day. I will never understand why people have to go through so much. I know it is all part of a plan and a trial, but sometimes I wish it did not have to be so. I cannot wait to hear about his make-a-wish!!! My sister went to Disneyworld with her little niece and family and man did they have a blast!!!
Wow that is a long day. So great that you got to your appointment with the tire being a bust. So crazy how that always happens. Hope you get some answers or that someone has a plan for you. Maybe if the doc is unsure and takes his time...it's time for a new doctor? Or second opinion. Unsure sounds like he has no clue what to do. Anyways love the pics.
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