In the hospital again

[jo-sephysmom]

We rushed Joey to the Ped office on friday and was sent to Childrens right away for an xray, they thought he may have pmonia. He had a temp of 104 and not eating. He is still in the hospital with what they now think started as an gastro virus that turned into a bronc virus. He is beat, not wanting to po feed so they are putting the NG back in again. I am so mad and frustrated, we worked so hard to get it out and I know he is sick, he has been coughing like crazy, 20 minute episodes he has to be to sore and tired to eat, I just wish they would give him a break. So they are wanting him to have this in, plus he now needs oxygen and nebulizer treatments every 4 hours, boulus feeds every 2 and suctioning in between. I guess my question is how many of you have had return visits to the hospital after leaving the first time? I guess I thought, probably naively, that we would not be back until surgeries where to be performed. Please let me know we are not alone, and that I did all I could to keep him healthy, we didn't go anywhere, we washed and washed and washed. I feel so frustrated and mad. They had 3 of them trying to put an IV in him with turneqettes on 2 legs and an arm poking at him and I said stop right now that is enough he is just a baby. Find a good vein and then try. I have had it. ugggggg

[indiemum]

OHHHHHHHHHHHHH it's tough sometimes. Mike and I decided after one hospital stay in Sept that unless it was very serious we would keep her at home. We got o2 in home and a nebulizer and we would watch her round the clock. We were told when we left hospital that we could expect A LOT of hospital stays. I am proud to say knock on wood that we have managed for 6 months at home (and there has been TONS of infections). I was so tired sometimes but it was better than visiting in hospital. We looked at all of the things that they did in hospital and there wasn't anything that we couldn't do, we even put Indie on continuous feeds for a while. Here is a list of the most important antihospital tools that we needed.
1. Oxygen
2.Nebulizer
3.Pulmicort and Ventalin
3.Tylenol Supps or Oral
4.Oxymeter
I bet you could manage at home just fine (as long as it isn't super serious) Let us know how it turns out, I swear sometimes we know more than "they" do. Also my oldest started "germ city" or preschool as it is traditionally known and we still kept Indie home and she was sick for 2 weeks a month all winter...........Not fun. Let us know. I'll be thinking of you.

Kelly
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[J&Jsmomee]

Yes! I've definitely been there and I'm sure its nothing your doing (even though I posted about a similar topic wanting to know what I'm doing wrong) We managed to keep Joel sickness free until Thankgiving- about 7 months. Since then he's been in the hospital 3 times sick. Twice, I was surprised that they admitted him. They are so cautious with him for good reason, but it makes me crazy too! The IV and blood draws are the worst. Just yesterday Joel was in the ER and they failed to start an IV after several tries. I said "You're done! He's not here for dehydration, so an IV isn't necessary. Give him any med's by mouth or shot, but no more digging!!!!!"
I think you're doing a great job! I would recommend what Kelly said and try to treat him at home whenever possible.

[cariaad]

When we left NICU aftrer 5 months, they said expect to be back a lot as well. Fortunately, in the 2 intervening years we have had only 2 extended stays (both involved getting surgeries while we were there). Otherwise, we have had 2 overnight stays for pH studies and only outpatient stuff. It CAN be done, its sure hard tho. The long stays were 14 and 17 days about 6 months apart, and could've been avoided if we hadnt tried to stay in network with a GI doc and been seen by someone who knew what he was doing (dont gwet me going&#33http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/wink.gif Anyway, I think a few stays are going to be "expected" so dont get too bent up about them. Do try to let them treat anything you can at home, tho, its so much better! Good luck, deb

[Ben&Erin]

We ended up in the hospital 5 times this winter. We too did not want to be there and did everything within reason to stay out of there.... the last time was the hardest. We were told on our 2nd return trip that this was what it would be like for the first couple years, Anna would have to go in periodically for a "tune-up". We have accepted it. We have stopped taking her to the local ER. The first couple times there, they didn't even know what to do. I had to run out to our car to get suction catheters! Now if our pediatrician recommends an ER visit we drive further to the bigger hospital where Anna was born. It saves us hours of waiting. Because once we were in the local ER we had to wait for a Pediatric Transport Team and ambulance to show up. We have found that we typically know best for Anna. We are looking for a break as the weather warms up!! Keep strong!

[Jack's mom]

You're not alone. After 8 months in the hospital we finally were able to take Jack home and on the third day of being home we had to take him back. I think he caught something before we left. It's been about 2 and a half years and he's been hospitalized for illness 2 other times. The rest were scheduled procedures. As long as you have the tools to treat your child, by all means do it at home. Our pulmonologist gave us guidelines of when to treat at home and when it was time to come to the hospital. (we had a pulse oximeter to monitor his sats and oxygen to help keep them at a certain level and breathing treatments) Maybe you could ask one of your docs to do the same. Our docs feel that as long as we know what to do at home, and they're not going to do anything differently in the hospital so let them be comfortable at home and why expose them to further germs.

Hope this helps,
Jill

[christyw]

I'm so sorry that Joey is sick. I know this is hard, and you somehow instinctively want to find fault in whatever you did or didn't do. There is just no way to gaurantee that your child won't get sick, and with some of our kids, any sickness can really get serious, meaning a hospitalization and all. Gaithy came home from the NICU after five months. She wasn't trached at that time and was only on supplemental O2 of about 1/4 lpm. Still, she had SEVERE BPD (resp disease) and she was SO small (only four pounds at this point) and we knew she was walking a fine line. We took her nowhere, of course except for the drs offices - the WORST place it seems, and her first pulm clinic visit, with a two-hour wait, ended with a fever the next day! I was devastated, because a fever meant infection and I wasn't sure she could handle any infection at home. We always policed our visitors well. Clean, to the point of attempted sterile, was the way of life!! Still, she had to return a few weeks later to the hosp...with a list of issues that lead to the trach and some terrible moments in the hospital. I thought, WE WERE SO CLOSE - meaning so close to her not having to have the trach, the long term ventilator - she was going to make it, be all right, etc.... but it just didn't work that way. Luckily Gaithy hasn't been so sick to need the hosp since she came home the second time in Sept 2002 (at age 1) but we've been fortunate. Also, Gaithy was older by the time she came home from the hosp (and had been sick a few times during the year IN the hosp, building her immunity I guess) - hopefully Joey will only get stronger and stronger and stronger as he gets a little older. And from my experiences I would say you will eventually reach a place where there is a little more relief and where Joey has much more reserve. I wish you the best and a QUICK recovery.

christy