I am so tired of Jonah being in respiratory limbo. He had started a little cough on Tuesday, I really paid no attention hoping that it would pass. On Thanksgiving he was sounding a little worse but it was Thanksgiving and I really didn't want to bother his pulmonary doctor, so I began treatments timing 3-4 hours apart. We made it through our Thanksgiving feast (that I cooked, I might add) and when we got home Jonah was just a hot mess! He was sating low, playing magical tricks with his lips...one minute they're pink the next they're blue...AHHH! I just worry so much about him. Yes I should have brought him to the Er last night but I didn't in hopes that with time he would do a U-turn. Today has been hard. So hard in fact I cried real tears when I heard him waking up from his trazadone induced nap.
He is sick. I took him to the insta care in hopes they would throw some magical fairy dust on him and send us home. No. Didn't happen quite like that. I brought him in. We sat in the completely empty waiting room and waited and waited (no one else was even in the building...just us and the staff) I think the doc was out for lunch...he must have been because we ended up with a PA... normally I wouldn't care but I knew this poor PA was way over his head once he saw Jonah's sat levels... He was kind enough to give me the option to drive J myself or he could call me an ambulance. NO AMBULANCE! I drove him. On my way up to PCMC (children's Hosp) i called his pulmonary doc to let her know I was going up to the hospital, and to get her on my side because I knew the Dr's there would want to admit him.
Okay so long story short we were there in the ER for close to 5 hours. Jonah was using 4X the amount of O2 he is usually on. He was not impressing anyone with his mighty ability to be breathing so hard we could count his ribs. We did the usual: Chest X-ray, deep suctioning, respiratory panel and then his nice 45 min nebulizing cocktail.
The Attending Doc came in told me he thinks J should stay for observation, but that I was free to go if I chose to because He talked with the pumonoloist and she feels that J would be fine, knowing of all the equipment I have here at home. (seriously I have a mini respiratory/feeding clinic going on here) So I left with 2 prescriptions in hand...You guessed it the kid is back on steroids. What do you do. You roll with the punches and have a whole lotta trust and lot more brain power to question what may need to be questioned.
may tomorrow be better, good night.
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Oh no jess! this is so sad! so now jonah's home? how's he doing?is pred helping him? poor little boy... you're all in my prayers...
ReplyDeleteI am so sorry you had such a rough night. Poor Jonah! I hope he starts to turn the corner and you can avoid an admit. I know you don't want to go that route, so I hope he can do it at home. I am sure you are so exhausted from this and I wish you could get some rest. I sure hope things work out well.
ReplyDeleteWho's your pulmonologist? I'm glad your home. Its so much better when you have everything. Keep them home so they don't catch other buggies.
ReplyDeleteI wish J well in this latest round of illness. I love the pictures of his new walker! How fun for him and liberating for you! What a gift!
ReplyDeleteHE MADE IT THROUGH AGAIN.....AND SO DID YOU......MIRACLE OF MIRACLES.....
ReplyDeleteMY HEART IS WITH YOU....XXOO
LOVE, GRAMMY
Hey Jessica, sounds like you had quite a night. did they think what he has is viral? were his white blood cell levels elevated (which would indicate a bacterial infection) ?
ReplyDeleteI'm glad you were able to take him home, make sure you get some rest, too!
here's to hoping tomorrow is a much easier day.
Sarah
I wondered if it was Dr. Pfeffer. Thats who we have too. She has been a lifesaver with the trach. I couldn't decide to get it or not, so I called her one last time to get her opinion. We talked for an hour and after we were done I was so much more confident. Plus she feels the same as me about PCMC. That they suck big time!!
ReplyDeleteI went a few days without checking in and a whirlwind of good and bad news and events goes by! You're perfect. I love the photos of Jonah walking. You are going to think I'm nuts, but I thought the "results" were very encouraging. As long as Jonah is progressing, I'm thrilled. The walker will help a lot. May this round of illness pass as soon as possible. Love you guys and keep blogging!
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