I don't know about the rest of you (well I'm pretty sure you'll agree) but the absolute worst thing anyone could ever do is to question my parenting or my intentions as a mom. That's the best way I can explain why this incident has bothered me so much for so long---I feel like this person did exactly that or tried to. This happened while Lauren was in the hospital last year. Now, this is going to be long................grab a snack and go pee before you get to comfortable :)
First some background info......now remember, we had already had a 2-month stay at children's right after Lauren was born. During that time and after we brought her home, I tried to learn as much as I could about her heart defects, etc. I talked to many different people. And, I learned what was/wasn't appropriate with the many different doctors/nurses/surgeons. Prior to her 2nd surgery last summer, we had already been through her first cath where they told us they found another defect that she couldn't live with--surgery, transplant, nothing would help her--and we only had a few months left with her. After discovering it wasn't as bad as they thought--we lived through many months on the transplant list, all of the pre-listing testing, her surgeon committing suicide--the list just goes on. So--in summary--we had been through a lot more than most heart patients--and we had learned a lot.
Now--I met every kind of parent you can imagine while sitting in that waiting room. I met the parent(s) that only called to check on their child--never visited (this is from talking to nurses); I met the parents that actually enjoyed the waiting room--the living conditions were probably 100% better than what they had at home--just a big party; I met the parents who cried for their sick baby but after having been in the hospital for weeks couldn't tell me their child's heart defect(s); and then there is me and my husband and more like us that cry for their child but also want to know everything they can--these are the families that I bonded with. But, I can clearly see the type of people these doctors/surgeons etc. deal with on a daily basis.
Now--here is how I dealt with doctors, etc. The CVICU is a scary, highly stressful environment. These babies are just about as sick as you can get. The doctors are almost always stretched to the limit. I learned very quickly and not by force that if you want/need to speak to the doctor--wait until they approach you because they almost always will or tell your child's nurse that you would like to speak to them when they get the chance. I treated them all with the upmost respect and all except for this one I was treated the exact same way. These people were saving my child's life or at least trying everything in their power to do so---they deserved to be treated as such. And, I did---I'm not trying to brag-I'm honestly trying to just set the stage-I'll just forever be in debt to all these people...and I let them know it. If one came up with a good idea, etc. I let them know how much I appreciated them.
Now--a little more background but I'm getting there. A routine echo/checkup in February last year showed much improved heart function. Lauren's cardiologist came into the room actually "giddy" and I would never use that word for this woman---all business :) She wanted to try another heart cath and see if Lauren was finally ready for the 2nd stage that she should've had months earlier. Finally get it done in April---the whole cardio staff was certain she was ready for it. So, she became inactive on the transplant list and the surgery date was scheduled. Went in on May 26th for preop and had the surgery the 27th. She did great---much better than my husband and I expected. The next couple of days she was doing pretty good---her sats weren't too great but they hoped they would increase with time. On the 1st she started going downhill and her cardiologist which happened to be the doctor on the unit for the week felt that she needed to be put back on the vent. They decided that afternoon to take her back for a cath to see why she wasn't responding well to the surgery. Nothing showed up---she was getting sicker. Took her back again on Friday to put in a stent in her pulmonary artery--thought this would help--it didn't. For the next 2 weeks, Lauren was intubated and completely paralyzed. They had her on a drug so that she didn't wake up or even flinch. Her numbers were still bad---several times her numbers would bottom out and her room would be swarming with doctors. After about a week and a half of being so sick, she bottomed out one day and her surgeon, Dr. Imamura, decided to take her back and completely undo the surgery. If it had been 5 minutes later she would've had that surgery, but they had to wait on the previous or patient to come out. Her numbers went back up and everyone backed off. That afternoon, they met and decided she needed a heart. Her surgeon and cardiologist came into her room and said she'd just been up'd to a status 1A--in the hospital on the vent. She stayed this way for about a week....now each week a new cardiologist or intensivist (intensive care doctor) would come in--they have a staff of about 10 that works this unit. So, Dr. Buddha came in one Monday---it was his week---knew him well. He decided to start trying different vent settings, rolling her over, etc. Everything he would come up with-worked-we kept seeing improvement. By the end of his week, he took her off the paralytic drug and let her wake up--she was still intubated. After waking up good, she showed her dad and I itsy bitsy spider---we were crying and laughing--it was wonderful--we had no idea how her mind would be--even the docs weren't sure. The next day she was extabated and on the road to recovery. We spent two more weeks in cvicu--they were messing with different meds, oxygen intake, her feeds, etc. I never once asked anyone when we were going home. Never...I knew how sick she had been...at one point her surgeon and another doc came in her room while she was so sick and told me that they had never had one this sick come out of it on their own. So, even though I'd only been home once in about 30-35 days, I wasn't going to hurry them. Our last week in cvicu went like this: Dr. D (his name is super long) came in for his week. Knew him-liked him very much.........I would happen to be back there (well I usually was constantly now that she was awake and the nurses didn't mind b/c I was who she wanted) when he would make his rounds so on Monday morning, after examining her, he came over to me and said "All we like is getting her feeds back up to where they need to be and deciding whether or not she needs to go home on oxygen." Ok great! He adds "I think she'll be ready to go home this week." Ok--someone has said go home---now I'm getting antsy--I won't lie about that. Tuesday morning, he comes in and says let's take her off oxygen today and see how she does. I walked her around the hospital all day. She did great.
Ok gonna post this one, I'm afraid I'll lose it.
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