Better day for my baby girl today. She slept really well last night. We have encountered a few bumps in the road with the ICU doctors-but are hoping to continue to improve their communication with us through a daily plan that is written on a large post it note on the door. This is an idea put forth by the ICU social worker to keep us informed as to what is being medically done for Kalyn. We are excited because this will offer us an opportunity to hold persons accountable for not sticking to the plan without discussing it with us as her parents. I have felt that I have had to force my suggestions on these doctors way too much-especially considering that all of my concerns have been valid and resulted in treatment that is needed. I insisted last night that they run labs on Kalyn and weigh her. She has been in the ICU for 22 days and has not been reweighed since 3 days prior to admission- even though she has not been allowed to eat for 16 days. She has been receiving all of her nutrition through a tube in her nose. How do we know that she is getting all that she needs? Apparently she wasn't. She has lost about 5 pounds. Add this to the 3-4 pounds that she lost just prior to admission from her stomach bug and you have a very significant weight loss. SURPRISE!!! Mom was right-she is losing too much weight. Magically this afternoon her feeding was increased and extra protein has been added.
I also requested labs to check her blood counts and electrolytes. We were told in a conference yesterday by the ICU attending herself that Kalyn's electrolytes are being checked daily. I then asked the nurse when they were last checked and was told that it was on the 16th!!! In whose book is that daily. Not only that but her potassium was 3.5 on the 16th-this is the lowest of the "normal" range. This would not be an issue except for the fact that they started her on Lasix last week to help her rid her body of fluid that she had been retaining from lying down so much. For those of you who don't know-Lasix is potassium depleting!!! This means you should be checking that level more frequently than WEEKLY. Especially if you are telling the parents that it is being checked daily. DUH!!! Our level of trust with this doctor has been completely destroyed. She will now do more than answer our questions. She will prove that the answers she is providing are accurate and not just off of the top of her head. She is responsible for my child's well being while she is in the ICU-if she didn't know what labs were being done then just say "I don't know". That would have been much better than lying. Or at least come in and say that you were mistaken about when the labs were being done-don't just add one for the next day and not address this with us. Well her potassium was 3.1- which isn't dangerously low but combined with some other levels should be addressed. So now Kalyn is getting potassium twice daily through her feeding tube.
None of these things is dangerous emergently in themselves. However, all of them combined with previous oversights show a general lack of attention to detail with Kalyn's care. I pray that this does not happen to other patient whose families may not know what to question. I also pray that after Kalyn receives her trach (this Friday) that we will progress quickly and be able to go to another floor. I look forward to Dr. Birknes working on her spine after her lungs are straight. I have much more confidence in him-along with a very high level of trust-than I do in this current ICU attending. The good news is that we get a new ICU attending each week-so we only have 2 more days with this one.
Now that I have complained I have to praise. We have had some pretty phenomenal nurses in the ICU. Karen, Jackie, Amanda,Blanca, Agina, Natalie, and Michelle were wonderful. We are thankful for their skill and caring. Today Kalyn was up in the wheelchair and fingerpainting!! She was so excited to be up-but could barely keep her eyes open after that 90 minute workout. But I'm sure that Dr. Birknes will be happy as he has told us all along that mobility will be the key to recovery-and I trust him and his words completely.
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