Friday, July 10, 2009

What a horrible July!!!

July 3rd and 4th


I was so excited to go to our cabin for the 4th of July holiday, my sister and her husband were going to join us and we always have so much fun together. They drove up late on the 3rd.


It was about midnight on the 3rd when we started to get phone calls from Kiera's home. The staff told us that Kiera had vomited a few times that day, and that her feeding tube (j mic-key) was giving them problems. The staff tried to change it out thinking that maybe it was just a bad tube. When they took it out, 3 cups of Kiera's formula came poring out. The staff then noticed that Kiera was cold to the touch, she also begain showing a temp of 95.1, her pulse was at 157, resp 54, blood pressure 98/70, and O2 sats at 99%.

The staff attempted to give her a water flush and her scheduled medications, this was unsucsessful, the feeding kept backing up into the syringe. Kiera was pale by then and her blood glucose read 136.

911 was called, she was taken to the hospital around 1:45 AM.


Kiera arrived at the hospital around 2:45AM with a LPN from her home. Her vitals upon arrival were; Temp-99.3, pulse-165, resp- 32, blood pressure-126/63, and still her O2 was at 100%.

Kiera was breathing rapidly.


It was the 3rd of July and that is always a very busy time for hospitals. The medical staff did make a comment that they were getting tons of casualties coming in at that time. Kiera must have not looked critical to the Doctors so they just had a iv for fluids placed, hooked her up to a heart monitor and had labs drawn.


It was about 5:00 AM when they started to prep her for a cat scan and abdominal x-rays. It is still not clear to me as to what really happened (all the notes say something a bit different) but apparently they gave Kiera the contrast that you get before a scan on the intestines. I still don't know what type of contrast that they used either, one is water souluble and the other would be toxic if it got into your lungs. They must have given it to her through her G mic-key, this is the feeding tube that goes right into the stomach, the J mic-key goes directly into the lower (small) intestines, so right after getting the contrast, Kiera vomited and then aspirated contrast right into her lungs!


Kiera's O2 droped to the low 70's, the Doctors tried suctioning and nothing was helping. Kiera was then placed on 10 Lt of oxygen and started her on a non-rebreather mask, O2 sats remained in the upper 70's.

Doctor stated that her blood gasses were all out of normal range. Kiera was then moved to a critical care room, sedated, intubated and placed on a ventilator.

All of this happened before she even had the cat scan.



By this time it was about 8:45 in the morning. The Doctors then took her in for the X-ray. The next thing I know is i'm getting a call on my cell, the Doctor on the other end was asking for my verbal permision to do emergency surgery. The Abdominal CT scan revealed a vuvulus, a twisting in the intestinal tract. She told me what had happened with the contrast and after that I dont think I heard much more of what she was saying. I wanted to just blink my eyes and then be with my daughter at this point.


The Doctor said that they saw fluid in the stomach cavity as well, I know that that that alone can be a very bad situation. The scan also showed a section of the intestines was noted to have been herniated.

I must have not said much to the Doctor on the phone because as she was explaning this surgery and all the risks to me, she paused and then said "...or we could do nothing, and that would end in death" I was taken back a bit from this comment and it probably got my attention then, so I said "Yes you have my consent, of course you do, Kiera is full code"

Kiera was a very sick girl and now was critical. I thought the first time she was intabated 2+ years ago was horrible, this was much worse.



Our three hour drive home was the longest and quietist drive I have had. We were both very scared that Kiera was not going to make it through this, and we were not going to get there in time.


By the time we arrived at the hospital it was 3 1/2 hour later, we had our dog with us and had to drop him off at home first. Right when we pulled up at home, I got an update call from the staff that was with Kiera, this was nice to get because I was so worried about her. The staff said that she did well with the surgery, she was still in recovery and the staff had not seen her yet.

One of the risk of after this kind of surgery is some people end up needing a colosomy bag, thank God Kiera didn't.

There was one foot of damaged bowel that the Doctors had to resection (remove). The twist was located right at the J mic-key site, so they had to stitch it closed and make a NEW J feeding site.

Kiera was then brought to the PICU. The nurses told us that we could go see her. I was stoped at the door to the PICU by a nurse who also works at the clinic that we use. She was working the PICU nursing station for the weekend and must have heard that Kiera came in and what for.

As she was talking to me, she gave me a hug and I could then see into the PICU. This hospital only has curtains around the beds, and most the time they are left open. So this is kind of funny... as I was done talking with this nurse, I was the first one to go through the door, then my husband and after him was the house staff. Well, in the 3rd bed from the door was a girl with dark curly hair, on a vent and asleep. I started to walk up to her and then see a man sitting in a chair that was facing the bed, this man was asleep and obviously a visitor... he has a plaid shirt on and a grimmy old hat. My first thought was 'Who is this man? why is he that close to my daughter?' I even, actually took one step around his chair to get to my daughter! This is when I see the nurses a few beds down waving their hands and pointing to the bed that Kiera WAS in! I just hope that man did not wake up and see what I did!!


I finally got to Kiera, she was so out of it. She was still on the ventilator because her lungs were so comprimized at this point. She was on continous NG suctioning for increased gastric secretions. Before surgery, they could not find a good vein to place a central line so they ended up using the femral vein, not a typical 1st chioce of the Doctors. Kiera was placed on Propofol for pain, antibiotics for aspiration and sepsis. There was an order for TPN feedings to be started due to her intolerance to feeding.



The Doctors that assisted with the surgery came up to talk with us, they told us that the fluid that they saw on the scan was just her formula, that was good news. They told us how the surgery went and said that it went beter than even they expected. This a bit strange to hear a Doctor say.



After talking with the Doctors we all realized now with the new J-tube, there is now no way to give Kiera her medication untel the new J was healed more. Kiera, by now has not recieved any of her seizure meds. All the rest of her medication could wait but the seizure meds were importaint to get as soon as possible. One of her seizure meds does come in IV form (lyrica) so we could give her that one saftley. later that day we gave her the other 2 seizure medications via her G mic-key, this was a bit scary because we don't give Kiera anything in her G, because of the risk of aspiration, we mainly use it for venting. But things did go well, and given the fact that she was on the ventilator she was not able to throw up, so we were okay doing this.

later that day, Kiera started to get very puffy, mostly in her upper exremities, so much so that her ID and Allergy wristbands were constricting at her wrists.



July 5th



Respitory Therapy was orderd every 4 hours around the clock. Kiera's lungs sounded coarse bilaterally. Kiera was still having problems with tachycardia (high heart rate). Her temp was still up despite the acetaminphen, so ice packs were used to help cool her down. Kiera had more labs drawn and results showed low K+ levels (2.6), the day before that level was 3.4, so it continued to drop. The Doctors then started an IV medication to suppliment the low levels. Kiera remained on the ventilator with 30% oxygen via vent.



July 6th


Kiera was getting the Propofol throughout the night to keep her sedated, she was also taking morphine for pain. Her temp was still up but what I found strange was a comment from one of the nurses, she said that the sudation medications will be weaned as they may be taking out the vent today... The IV in her arm was removed, the Propofol was also stoped. Kiera slowly wakes from sudation a bit before noon. The Doctor came by and said that she will be moved to the adolescent floor soon.

I could not even imagine that she was ready to move from the PICU, her vitals were not stable and she wa a very sick girl.

She continued to need Lasix for the edema. She was still getting the Neb treatments along with a vest treatment every 4 hours, and now she started to have seizures. Kiera was not ready to be moved!


Another Doctor came by and told us that they will not attempt to take the vent out today due to the exsessive sleepiness. The Respitory staff reported lower left lobe was still diminished.


July 7th



At 1:15 AM, Kiera was still getting Morphine for pain and her temp is up even higher that the day prior (101.2) Ice packs and cold washclothes were again used in attempt to cool her body down. At 5:00AM her temp was still going up (101.3) and again cold packs were being used.

The Respitory staff came in at 9:00AM and turned vent to C-PAP, Kiera was now breathing on her own. The IV fluid rate was decreased as the tube feeding rate increased.

The vent tube was pulled and the NG tube discontinued. Her O2 was at 98% while on 4 LT of Oxygen via naisal cannual.


The Doctor reported that the latest chest x-ray looked a "touch worse than yesterday" so he suggested more vest treatments may be helpful. Kiera was still on IV antibiotics as well as Lasix. The blood labs again were drawn and things were out of range still, her K+ was now at 2.1.


July 8th


Kiera was still in pain so she was getting Morphine and over night her temp started to rise again (100.3) and her lung sounds still diminished. Labs now show low HGB of 7.4, and all other labs abnormal. The Chest x-ray showed fliud in both lungs and her respirations are increasing. The attending Doctor was conserned with this because of the risk of her hyperventilating. She has been breathing so fast for so long now and was still kind of out of it.


Kiera needed 2 bags of blood transfutions due to the low HGB and her respirations still remained elevated. Kiera was still requiering 4 LT of Oxygen. The central line that was placed before surgery was now looking like it was getting infected so that was taken out and a PICC line was then inserted. Her temp was still up there and her breathing was still elevated, staff turned up O2 to 6 LT and had to use a AMBI bag to force O2 due to her oxygen droping down to the mid 80's. Her oxygen then went to 96%, but then dropped again to the mid 80's. The AMBI bag was used for the second time. A bit later a Hi-flow naisal cannual was then started due to Kiera's increased breathing and low oxygen readings. Around 11:00pm, Kiera was assesed and found to be slightly hypoactive, they did deep suctioning 2 times.



July 9th


Respitory treatments with vest treatments continue to be needed every 4 hours along with oral and nasal suctioning. Temp is being monitored and cool washcloths placed on her forehead and under her arms. She still reamins hypoactive. Today the chest x-ray shows the left lobe was looking beter but her right is is looking worse now. Kiera will remain in the PICU.


The Doctor wanted to remove the O2 to see how fast Kiera's oxygen levels would drop, they remained around 94-96 on room air, then later that morning they dropped to the low 90's so O2 was used again starting at 1 Lt. throughout the day. The O2 was continuously adjusted according to O2 sats and oral/nasal suctioning as needed to increase saturations.


The Doctor discussed the need for CPAP/BI PAP or possibly re-intabating Kiera for the fluctuating O2 sats. What a horrible thing to hear but I was not surprised at all to hear this. We all talked about how the tube may have been taken out too soon, we agreed that it was.


We then got the results from some cultures that were done eairler within the stay, it showed E coli. At 2:00pm a BI PAP was needed for increased resps and continued drops in Oxygen levels. Later that night the Doctor was paged due to continued increase with her respitory and after talking with the Doctor it ws thought that Kiera's blood PH might be low therefore causing the increase. More blood labs were drawn.


July 10


Oral/nasal suctioning as needed for drops in oxygen levels and to produce a productive cough. Kiera is still on the BI PAP at 3 Lt.O2. Kiera is now being tested for C-diff because of the antibiotics she has been getting and there is a concern over the high heart rate especially during suctioning.


More blood labs were done, all were within normal limits except for CO2. Kiera recieved a IV medication to help with this.


July 11


Kiera was still having trouble with her oxygen levels even on the BI PAP, (83-90%) deep suctioning was again needed. It was noted that Kiera was having several periods of apnea, they lasted anywhere from 4 seconds to 20 seconds in duration.


While Kiera was moved into her wheelchair the BI PAP was removed for a short time. The respitory thearpist stated that they wanted to begin the weaning process of 4 hours off and 2 hours on through the night