More Addisyn

bryantem · #1 02-05-2009, 08:18 PM

It seems like there are getting to be so many people involved in her care. I was pretty annoyed when people started to come into her room to do tests on her that I wasn't even aware of and that had nothing to do with her tracheomalacia. The Dr ordered a head ultrasound, echo and broncoscopy. I knew the bronc was a possibility with the pulminologist because they want to get a sample from her lungs and get a good look and her bronchus. The other tests caught me completely off guard. According to the PICU Dr, she should not be having destats ever. No dipping at all because her corrected age is full term. My question is, why would they discharge her from the NICU if they thought she was having other issues? She is in the PICU for her pneumonia not for issues that the Dr hasn't even seen. I basically was bothered that they are ordering all of these tests, that have already been done in another hospital without consulting with me first. It is starting to feel like the early days in the NICU where I had no control or say over anything. If this continues, we will be going to Phoenix Children's as I am not impressed with this hospital one bit. In the future, I am considering using a different hospital for her care.

Anyways, after the bronch, the dr is going to start weaning her off the paralytic in prep to wean her off the vent. There is a possibility that she may need a vent or cpap at home- I don't think she will need a vent, but cpap is a possibility. Also the upsize in the trach might have helped. I guess we will see what happens. I don't see why she would need additional support if she didn't before- but whatever.
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Hope · #2 02-05-2009, 08:24 PM

It's frustrating to feel out-of-control and even out-of-the-loop in regards to your own child's care. It shouldn't be that way. Maybe there's one doctor (whose her "main" doc -- ENT or pulm?) that you can talk to so you can get a better feeling for what's going on. I think sometimes doctors "assume the worst" about us -- that as parents we're either not all that informed or even don't *want* to be. Make sure they understand that you want to be included. Good luck -

Hope

KJKK8437 · #3 02-05-2009, 08:40 PM

Quote:

Originally Posted by bryantem

According to the PICU Dr, she should not be having destats ever. No dipping at all because her corrected age is full term.

Um, gee. Is prematurity the only reason for desats? Is that why Addysin was trached? NO!

Sorry for my sarcasm. but your message makes me so pissed off for you. I spent a large part of yesterday talking about this very issue with our local children's hospital. IMO, there is no excuse for this kind of behavior by the doctors.

Good grief. You don't need this.

Ann · #4 02-05-2009, 08:52 PM

I agree, the comment that Addisyn should have no desats ever makes no sense. Otherwise perfectly healthy people can desat if they are sick or injured. Kind of a stupid comment. I'd be upset too about all the tests that are being done without your knowledge or input.

I hope Addisyn recovers soon and you can bail from the hospital.

bryantem · #5 02-05-2009, 09:10 PM

That's what I thought too. He was trying to tell me that she was going to have brain damage because she has desat episodes. I asked what classifies a desat episode and he said 88 and below. Umm- no, if that were the case, the perameters in the NICU wouldn't be 83-93 in some infants, and some Dr's are adamant that they stay that low. They are doing all of these tests because she gets irritable when they change her diaper and mess with her and because she couldnt maintain her body temp. First of all, if you were nearly 4 months old and spent the majority of that time in the NICU getting poked with needles and having a trach, you would be a little pissed when people changed your diaper and tried to start an IV too. Second of all, she is a former 28-weeker, it is perfectly common to drop your body temp when you are sick...did I mention she is on so many sedatives that her blood pressure dropped? The bottom line was that all of these tests were done, both tests done 2 times. I have even given him the Dr's names that know the most about her. Both practice at that hospital. She has tracheomalacia and BPD. She desats, pops down into the 80's and pops right back up. I have asked numerous drs and nurses about this because I was concerned it was harmful. Her pediatrician said that with babies, they recover pretty easily from desat episodes because they were developing quickly. I was also told by nurses and drs that it takes 3 minutes before a desat negatively affects the brain. Developmentally, she is on track for a 1 month old. Do you reeomend I talk to her pediatrician? What do I do if they start to push things that I don't think is needed? I almost feel like they are trying to squeeze everything they can from my insurance company? Can I transfer her for a second opinion before I commit to anything? She went to the hospital because she was sick. I didn't request nor approve for them to do a battery of tests that are not related to her current illness. That was what the 3 month NICU stay was for and this can be done outpatient since we already have the appointments set up for this. She is not a baby guinea pig. Thanks for letting me rant. I was not a happy camper today.
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Ann · #6 02-05-2009, 09:19 PM

Beth - if you have a good pediatrician, get him or her to step in and be part of all decision making (along with you, of course). Right now, there are too many chiefs and not enough indians (which used to drive me nuts during Jack's six months in the hospital). I'm not sure switching hospitals will solve the problem unless the people at the other hospital know Addisyn. Although, I've been at the hospital you are at with Jack - once - and I too threatened to transfer him to PCH. I understand your frustration, but just take deep breaths and see if you can recruit your pediatrician to help you regain control of the situation. The other thing you can do is demand a care conference and make your concerns known.

bryantem · #7 02-05-2009, 09:27 PM

Thanks. Everyone has their idea of what she should be. The only dept in this hospital that really knows her is the NICU, which makes it even more frustrating. You would think they would start requesting some information before reordering tests that have already been done. The same tests that I have already told them what the results are and they are in her discharge summary. They are trying to fix something where there may not be anything to fix. He said he "knows" neonatology because he trained there, but does he really know it? Of all of the Drs following her in the NICU and none of them felt compelled that her desats were causing problems- one of which said the pulseox was a innacurate piece of crap. Even though she is at 6 weeks corrected age, she is still a preemie and can't be compared to a full term infant and she does have the trach. She has had 2 apneic episodes, which has proven to be because of illness. If they would let her grow and become stronger, I am sure she will outgrow it. We are not morons. We can handle her.
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alizesmom · #8 02-06-2009, 07:29 AM

The hospital should have a patient advocate. Find him/her to help. Maybe push for an official care conference where a plan of care can be made that all of the staff will adhere to. Karen

KJKK8437 · #9 02-06-2009, 08:21 AM

All I can do is validate your feelings, for what it is worth. You have every right to be royally ticked off. Unfortunately, anger isn't a productive emotion and it often puts people off from wanting to help (as I have learned first hand). Ann and Karen have good suggestions, and I sure hope one of them works for you and quickly.

kshell · #10 02-06-2009, 01:46 PM

I am not agreeing with the doc by any stretch......just thinking what we went through and what they were looking for in our situation. The only thing I'm thinking is that they may be looking for pulmonary hypertension. Once these ex preemies get bigger (even when they are tiny) there is a risk....Natalie's parameters had always been low at her birth hosptial.. They like to keep them low due to the risk of ROP. When they hit their birth age they want the parameters like that of a "normal" baby. Natalie was transfered to CHOP 4 days after her due date. Her sats could easily fall to 85 and that had been ok with the nicu. Once to CHOP at her due date that was not acceptable. She needed to be at first 88 or higher, than 90 or higher. Once pulmonary got invovled it was 92 and then 94 or higher. She has "unexplained" desats but no other real symptom of pulmonary hypertension. So .......my only thought is maybe this is what they are looking at or not....just thinking....
All this being said I would ask to have a meeting and explain your feelings. Go over the tests and ask specifically what they are looking for.

Good luck and I hope you are on your way back home soon.
Karen