Ups and Downs

I’ve spent the better part of the last week in the hospital with my son so Daily Mom Style would be more like Hospital Mom Style if I were to post what I’ve been wearing lately. And trust me, if I had photographic evidence, which I sure as heck don’t, you wouldn’t want to see that.

So I thought I’d write an update for those who have been following along.

Surgery went pretty well on Friday, although the surgeon didn’t find what he expected when he got in there, which made the surgery a bit more of a challenge. But that wasn’t supposed to alter the predicted recovery time or protocol, so we were happy as we settled into our sunny little room on the surgical floor at CHOP.

Unfortunately we got sent home too soon. We debated most of Saturday afternoon if he was ready to go home or not, and while the doctor told me it was ultimately up to us to decide, he thought we would be fine at home. Against my better judgement, I agreed to the release, and I will never forgive myself for not following my instincts. WHEN will I learn?

Once we were home, my son was not getting better. He  couldn’t keep food or even medicine down, and he was in an incredible amount of pain. I talked to the urologist on call several times over the weekend, and finally on Monday morning we decided to bring him back in.

Now here is where you get a lesson in life and hospital care. DO NOT EVER let the hospital release you until you are SURE you are ready to go home and be on your own. Because once you leave, it takes an act of Congress to get back in. If we had simply stayed put on Saturday, we would have saved my son an incredible amount of pain and agony, to say nothing of the stressful day of ambulance rides and ER visits and false alarms. But I’m getting ahead of myself.

I could have driven him to the Children’s Hospital on Monday morning, but he was in too much pain to be moved. So I called an ambulance.

The ambulance could not take us into Philly because we live so far out, so they took us to the closest suburban hospital where they had to administer all their typical protocol. On the plus side, they were able to give him medicine to manage his pain, which he was desperate for at that point.

When they confirmed that my son needed to be moved to CHOP, they called an ambulance, we waited, we took ANOTHER ride, and we landed in the ER there, where again, they administered all of their protocol and ordered an ultrasound.

Finally, 8 hours, 2 ambulance rides, 2 ER visits and countless signed documents later, we got re-admitted and placed in a room on the surgical floor. This time the room was more of a dungeon. Reason #2847 that I wish we had never left on Saturday.

Here’s my bed. Doesn’t it look comfy?

my bed at Children’s Hospital . . . cushy!

At one point, we were told my baby might have to have another surgery, and I have to admit that I freaked out a bit at that point. But the false alarm was due to the ER doctors not understanding the effects of this type of surgery.

Once we saw the urologist, he explained what was happening and how to treat it, and while we were not thrilled with everything we need to do to get through this, the prognosis is MUCH more palatable than it was earlier in the day. That was Monday.

Today things are looking much better. My son has shown dramatic improvement in the last 48 hours. He’s like a different kid. We are still at CHOP, but we hope to go home later today if all systems are go.

All of your emails and messages and prayers and offers for meals and assistance are so appreciated. I haven’t been able to reply to everyone, but please know that I’ve read them all and am overwhelmed by the love and support.

I think we’re on the mend.

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28 Responses

  1. I’m so glad he’s on the mend. Can’t imagine how hard it was to see him in such pain. Sending prayers for your family and everyone taking care of your son.

  2. I was wondering how you guys were doing !!! I am so glad his pain is better now and he is improved. Do not beat yourself up about the discharge..it can be really so hard to to decide. I will say in my own personal experience (entirely leaving my NP hat in the closet!) that sometimes surgeons VASTLY under estimate recovery times and post op pain..even the really good ones!! I wish I knew why this was!

  3. Keeping you and your family in my thoughts and prayers —- I’ve been in your shoes and now what a scary helpful feeling you can have — hope all goes well once you’re home again.

  4. Praying for his full recovery. Glad to hear he’s doing a bit better. Thanks for updating us. Give him an extra hug from all your bloggy friends who are thinking of him and praying for him. And, don’t forget to take care of yourself too.

  5. SO sorry you’ve all been through so much, and very glad you boy’s feeling a bit better. Praying for lots of healing and rest–for him and for you. Hang in there, mama!

  6. I’ve been praying all week. So sorry for all the struggles that all of you have faced. Seeing your child hurting is so difficult! Praying for a smooth transfer home and rest for everyone!

  7. I’m so sorry you have to go through this! I’ve been praying for your family. I wish I lived closer so that I could bring you some dinner! It’s so strange because after a very serendipitous path of lab tests, ER visits and a 3 day hospital stay, we found out that my 9 month old has a ureterocele, which is a blockage between the ureter and bladder. She had a UTI and I didn’t know it. It could have presented itself later in her life with symptoms like your son was experiencing or a kidney infection. I actually was torn about the lab tests–I knew they weren’t accurate, but my gut told me that we should just take her to the ER at VCU in Richmond anyway. I was right about the initial tests being wrong, but so glad we ended up in the Pediatric ER because that’s where everything took a complete turn and we discovered what’s really going on with her. It’s so very difficult to be your own advocate and trust your gut when you are exhausted and just want your baby home and you’re tired of eating at the hospital cafeteria and don’t want to watch another episode of “Real Housewives of New Jersey,” (I totally forgot my bag and was left without my reading materials!!!) and you just want a real shower, etc. Glad everything is getting better. Praying for a speedy recovery and no further complications!!

    1. Ha. You nailed it. That is EXACTLY how I felt when they told us we could go, I just thought we’d be more comfy at home.

      How is your daughter doing? It sounds very much like what my son has had.

      1. I’m hoping that her UTI has cleared with the antibiotics, but I don’t know for sure because she’s just a baby and has no visible symptoms! She has to have an outpatient procedure at the end of this month that basically “pops” the ureterocele. Once the fluid is gone, then the blockage should be gone as well. We go for a follow-up a month later. My biggest issue now is that she has to be on a low dosage of antibiotics for at least two months. If, at the follow up, they determine that there is reflux into the kidney, then she’ll have to be on them for 4-5 YEARS. Ugh!! I’ve done enough reading to know how awful that is on anyone’s system, much less a young child. So, I’m praying for a successful surgery with no reflux!

        1. Oh so it is a bit different than this. I will join you in praying that it goes well and there is no reflux. I have a friend whose daughter has the reflux into kidney issue and I know how hard that is to live with. (((hugs)))

  8. You’ve been in my thoughts and prayers too. I’m sorry that you had to go through this and I’m glad things are turning around. Wish I could bring you dinner as well! Please take care!

    1. You would think, right? I mean, on the one hand, I am glad they give the parents some say. I definitely want my opinion to be considered. But they should have never sent him home. They couldn’t predict the complication that resulted, but at that point he was not in any condition to go home. It’s hard as a parent, cuz I don’t know what is normal. I have never had surgery. Anyway, what’s done is done. Thanks for your well wishes. 🙂

  9. I have been thinking about you all from your last post. I am glad he is on the mend and hope it continues without glitches. Take good care of yourself, as well.

  10. I’m so sorry you all had to go through that. It’s bad enough when you have to plan the hospital stay, I can only imagine the stress you were experiencing watching your son in that much pain and just trying to get him back to CHOP. We’ve been in a children’s hospital (A.I. DuPont, actually) multiple times and it always amazes me how much is put in the parents hands. Children often get better more quickly at home but not when they aren’t ready to leave in the first place. I’m sorry they let you down like that. Prayers that your son continues healing quickly!

  11. I’m so sorry to hear about what you’ve had to endure the last several days. It is so hard when our kids are sick, etc. We will keep your family in our prayers for sure 🙂

  12. I always tell my kids “instinct” is God telling you what is right. I wish my mom would have told me that! Might have saved me a multitude of bad choices. I hope it has saved my kids from a few!

    God bless your little boy and you and your family as you journey through this ordeal. Have faith He is with you at every step.

  13. Oh girl, I recognized that bed right away! We were discharged from CHOP yesterday, and I was calling them today fearful that we left too early and sick in my stomach thinking about going back there!! God bless you!!!!

  14. I’ve missed your “presence” this week and then remembered you’ve been tending to way more important things. Here’s to hoping your little man is over the hump and healing continues smoothly now! You’re a good mom! Live and learn!

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