Tuesday, July 8th - Searching for Answers

We arrive early today so we could see Kinley right after the morning shift change. George (Georgianna - Kinley's night nurse) was still here giving her update to Katie (Kinley's day nurse). Kinley's "episode" occured last night between 2:00 am and 2:30 am, soon after George had given Kinley her dose of methadone. Kinley was very agitated and her heart rate and blood oxygen saturation dropped very rapidly. They had to "bag" Kinley and give her another treatment of vaporized epinephrine to get her oxygen saturation back up. Even after all of that they were considered re-intubating her and putting her back on a ventilator, but thankfully it didn't have to come to that. After about 30 to 45 minutes Kinley was back to her normal heart rate and blood oxygen saturation, but her nasal cannula oxygen had to be turned up to 70%. Kinley's methadone doses and feedings have been placed on hold until they can get a better idea of what happened. She has been pretty stable this morning, but a majority of that could be from how exhausted she is from her "episode."

Soon after we arrived Delores (Kinley's nurse practitioner) stopped by to talk with us about Kinley and what might have caused her "episode" last night. She has three different ideas.

1) Sepsis - an infection in Kinley's blood.
2) Airway Constriction - babies that have been intubated for a long time tend to have "floppy" airways due to the main airway being held open by tubes and those airways can contract and constrict if they become too irritated, cutting off air flow entirely.
3) Drug Interaction/Withdrawals - a possible negative reaction to her methadone dose or a severe withdrawal reaction to being taken off of versed.

Delores also talked with us about Kinley's current status. She has seen Kinley's morning chest x-ray and she lets us know that it looks really good. Kinley's blood gases are good now also. They are going to re-start the methadone doses every six hours because Kinley had been on methadone for days before this and had not had a negative reaction. Plus, they do not want Kinley to start having withdrawals from being off of methadone because if she were to get too agitated she might have another "episode." Kinley's ativan doses will continue to be given every 6 hours, but the dosage will be increased slightly in case her "episode" was from versed (sedative) withdrawals. Another vaporized epinephrine treatment has been ordered. The vaporized epinephrine will help with any inflammation in Kinley's upper airways. Blood will be drawn to check for sepsis and, finally, an ENT (ear, nose & throat) doctor has been asked to come up and examine Kinley. The ENT doctor will run a scope up Kinley's nose and down her throat to get a better idea if her "episode" was caused by airway constriction.

When Katie went to draw blood for Kinley's labs she found that the PICC line would no longer draw. This is not a huge concern because the PICC line is still functional for giving fluids, it simply can't draw blood anymore. This means that Kinley will have to go back to being stuck in the foot each time they need blood. When Katie poked Kinley's foot Kinley didn't even flinch. In fact, she didn't cry throughout the entire blood drawing process. This worried me that something was wrong, but Katie reassured me that Kinley is simply exhausted from her "episode" last night. I had not thought about how much energy someone, especially a baby, would use up if their body had to fight to keep up its heart rate and oxygen levels, but I am sure that it would be almost all that that person had.

Today is our second day with Dr. C as Kinley's attending doctor and this time we are here for rounds. Delores begins rounds by updating Dr. C on all of Kinley's general information, like current meds and dosage, urine output, feeding status etc. During Delores' update the ENT doctor, Dr. W, arrives with her team to examine Kinley. Dr. W is the same ENT doctor who did Kinley's bronchoscopy while she was on ECMO. The entire scope procedure does not take long and Kinley handled it pretty well for having scope up her nose and down her throat. Dr. W says that Kinley's main airway looks really good and it does not show any signs that it contracted last night. Dr. W's scope cannot go down this far, but she is guessing that the constriction happened down in Kinley's lungs. After Dr. W and her team have left we continue rounds. Dr. C agrees with all of the changes that were made earlier in the day, but she would like to make one more. Dr. C puts in orders to re-start Kinley's feedings, but this time they will be continual feedings. Continual feedings push milk consistently (3.5 ccs per hour) into Kinley's stomach, through her NG tube, over a 4 hour period. Kinley's feedings before put 5 ccs directly into her stomach over a 5 to 10 minute period and she was fed every 3 hours. The continual feedings, while more food, should allow Kinley's stomach to remain less full.

Kathy, the surgery nurse practitioner, returned today to examine and remove the remainder of the sutures left over from Kinley's diaphragm repair surgery. Kinley handled all of this amazingly well considering she was wide awake for the whole thing. She never cried, but that was probably because we made sure that her binky/pacifier was always in her mouth. Both Katie and Kathy feel that Kinley's surgical site is healing very well.


The hole above the surgery site is where Kinley's chest tube went in and the line about that is where the surgeon had to make an extra incision so he could push her spleen out of the way.


Kinley's first round of continual feeding is over. Katie checks the residual to see how much of the 14 ccs (3.5 ccs per hour for 4 hours) of milk is still in Kinley's stomach. Uh oh. The residual that Katie pulled back was 14 ccs. Once again, it is not all milk, but a combination of milk and saliva. Katie called Delores with the results and Delores says to put all 14 ccs back in Kinley's stomach and check it again after one hour.

The final results from Kinley's blood labs are back. Kinley does not have sepsis. This is great news because it means that Kinley does not have an infection in her blood. The only problem is that we do not have a definite answer on what caused Kinley's "episode" last night. The best guess that we have so far is that it was caused by airway constrictions down in Kinley's lungs. If this is correct we will simply need to try and keep Kinley from getting too agitated and that will give her time to grow out of the risk factor of closing those airways again.

For some fun news, Kinley got to put on her first full outfit today. We could not get her left arm in due to all of her IVs, but other than that she is fully dressed.