9:00 pm - More progress since the afternoon update! The biggest of which is that Hayes is slowly being weaned off the vent. In order to make this transition, the respiratory therapists are coming in regularly, assessing his stats, and adjusting the vent settings. I could start rattling off numbers and jargon, but few of you would know what I was talking about...and I would probably get half of it wrong anyways. So, we will just leave it at that! Along with the ventilator changes, part of the weaning process is the lowering of his calming medication too. This is so bittersweet for me. The wonderful thing is that he is much more awake and alert, and he is even starting to get some of his Hayes-isms back - playing with his feet, checking out all of the lights around him, and looking at the pictures in his books as I read. The sad part is that he seems very upset and confused, and he has yet to even crack anything close to a smile. I sure do miss his sweet smile. Enough of that boo-hooing, let's get back to the progress though. Remember how I mentioned in my last update that Hayes had begun tooting? Well, those toots have transformed into something a little more solid. Three somethings to be exact. And you know what...I was not even the one who had to change those foul diapers. Double yay! Oh, and I realized that I never gave an update after the catheter was removed this morning. Good news there too - he has been filling up diapers like a champ! Praying that tomorrow holds just as much progress as today.
Seeing more and more of those beautiful baby blues!
2:00 pm - Wow, what an eventful morning...and Hayes slept through most of it! Horrible storms came barreling through Houston with tornadoes and hail in tow. All of the hospital staff responded amazingly - emergency kits were brought out, a nurse was by his side with a manual breathing bag in case the power went out suddenly, and Hayes was moved as far away from the window as possible. (That was quite a sight to see as ALL of his machines were shuffled across the floor!) Once the eye of the storm had passed, we thought things would calm down...but boy, were we wrong. And in a very good way! As all of us were standing around Hayes's bedside watching him sleep and discussing his care, we heard a little rumbling sound followed by a very stinky smell. It took a few seconds, but we quickly realized that Hayes had let out some toots! His noisy booty was music to our ears because it meant that his digestive tract was functioning again. Hooray, toots! Shortly after that, the x-ray technician came in to check out our little guy's lungs. This is the moment we had all been waiting for. We thought the results would take awhile to come back, but our attending doctor came strolling into the room within just a few minutes. Without a word, he pulled up the x-ray on the room's computer screen. And this is what we saw...
...an inflated and clear left lung! (Your right on this picture if you are looking for it. Oh, and don't mind the heart that is in the way of the visual too.) Next step - working towards extubation!!
6:00 am - Well, no real resolutions to report from last night. His left lung is still collapsed and they have decided to discontinue the aggressive breathing treatment...and start an even more aggressive approach. Everyone is continuously reassuring us that it is no cause for panic. We just need to find what works. And once we do, his lung will reinflate quickly, and we will be back on track. Oh, how I want to be back on track. In the midst of all of the lung drama, his catheter once again quit working late last night too. They replaced it, and it worked for a bit. However, it has stopped working yet again. All of the nurses have been begging to just discontinue the catheter all together, and since beginning this post (an hour ago!), the pediatric surgery team made their rounds and finally agreed that we could. Hoping this solves our ongoing problems with urination and swelling. What a blessing that would be! Okay, okay...so I know this has not been the most uplifting of updates, and I really want to leave you all with a smile on your face. So, let's see if this does the trick...
You might be a redneck...if you have two stuffed white-tail deer in your PICU bed.
6 comments:
Cutest redneck ever! Constant love and support coming your way.
Praying for you guys!!
Hooray for Hayes! Great news about his inflated lung...and the toots!
Great news!!!. Praying for another wonderful day today!
I just saw the news article mentioning your blog, and I was so happy to see someone talking about this issue. My husband was born with an omphalocele back in 1964 when survival was not typical. He acually has Beckwith-Wiedemann syndrome which includes gigantism, macroglossia, and the typical heart defects. We have no pictures of him with the omphalocele because the treatment was immediate surgery. I wish you well, and I am glad to be able to follow your postings now. I am glad to see your son has the head shaping helmet, too. My son was born with a head shape similar to your son in the pictures, but in 1999 they offered us only invasive surgery to correct it, which we rejected.
My 12 yrs old daughter saw the article about your son this morning and was really excited to share it with us. She was born with an omphalocele too, plus few other birth defects that led to 8 surgeries, months in the NICU and PICU, and lot's of hard work/efforts on our part, her part and the medical team. Today she is a healthy and wise young girl who looks at her experiences as the part of her life that makes her stronger and more unique. After she read your story, she told me she wants to write her autobiography so more people can read about her experience. Thank you for inspiring her to want to do this.
As a mother who's been through what you're experiencing, I can tell you the fight never ends, the believe that you can overcome any challenge, as difficult as at seems at times, is your biggest weapon.
Having faith in my child's ability to be a true fighter and survivor is what kept me going. I always envisioned my daughter having a beautiful life that she can navigate through and feel fulfilled. I've made a real point, to raise her believing that she has the ability to do anything she wants and follow her dreams as big as they might be.
We are not in the medical field, and becoming informed and educated about all the different options or outcomes from each procedure, asking constantly questions, at times even challenging the doctors to look at their approach differently, was the best thing we could do to delegate for our child, making sure she receives the best possible treatment and that her rights were always met and respected.
Reading your blog made me look at the pain I had to endure as a mom, but also made me realize that all I did and sacrificed in terms of my own career, delayed college degree, etc. in the name of giving my child the opportunity to grow up healthy and strong, was all so worth it! Talking to my daughter about your son this morning on her way to school was priceless. Being able to discuss what we went through with her and know that she understands the depth of it was so amazing.
So good luck with everything and thanks for sharing your story with the world!
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