Chugging Along

POSITIVES: Kiera is coming along. She has ups and downs. She seems to be beating the c-diff infection and is very active and alert. Her vent settings are coming down and we are getting closer to trying her out on a "home" style ventilator (in hospital) to see how she does. Kiera's formula feedings through her new g-j tube into her intestine are going fine. It will be at least a month before we get to try breast milk and potentially two months before we can try G-tube (stomach) feedings. We have a Care Meeting with ALL her doctors scheduled for May 8.

CHALLENGES (this week): Kiera had a bronchoscopy today to view her airway, and her trach tube may be causing a "pocket" of scar tissue to develop in her airway that may be the cause of some intermittent episodes of dropping her heart rate. She's had 5 in the last week and a half and they seem to be increasingly worse. She has a new, longer, tube ordered that will hopefully be here by the weekend. This tube will bypass the scar pocket and allow it to heal. Then we'll see if this corrects the heart episodes. The cardiologists are also considering that her beta blocker may be causing the trouble. Hopefully, they will be doing another echocardiogram and reviewing her dosage. A relatively minor development has come up with her eyes. Her opthalmologist says her gaze is exotropic--she has 2 lazy eyes caused by the muscles actually letting them set too wide which is common in neonates. It is not interferring with her vision or development, but will need to be corrected by surgery after she is discharged from the hospital, or at least once she is able to be on a home vent to visit his office.

ON A LIGHTER NOTE: She's cuter every day. I took her swing to the hospital which puts her right to sleep. She loves watching her mobile and toys in her bed. Her favorite toy, besides the long time favorite mobile, is a heart shaped toy called a "Whoozit" that was a shower gift from my friend Shannon Olfers in Arizona. It is an absolutely crazy looking toy, and she is enthralled by it. :) She also likes to hold on to her alphabet links that I hang over her head. She's maintained her weight while growing a little longer so the nutritionist now thinks she ranks in the 10th percentile for her adjusted age of 5 months and her length and height are more appropriate for eachother. Previously, she was a bit fat for her length from the steroids and pumped up calories in the NICU. She was also ranking in the 3rd percentile before. I guess that sums it up for the week.

Love,
Tree

Kiera's getting fed again!

Kiera had a new G-J tube put in this morning, and everything went well. It turns out that the one she had was far too long, and this is a much better fit. She was still groggy today from the sedatives for the procedure. Her stomach acids are looking a better color too, so I think the treatment for the c-diff is having a good effect. She's back on conservative feedings and hanging loose. We'll see how the week goes. She was 8 months old yesterday.

Tree

New and Improved Complications

Well, Kiera was diagnosed with a collostridium difficile imbalance....basically a gastro-intestinal infection resulting from an overuse of antibiotics. So she has been receiving treatment for that for the last few days. She also received another blood transfusion yesterday. I think that makes 7 total since birth.

She has also managed to pick up a colony of MRSA (methacillin resistent staph) in her trach which she will have for a long time. This is generally safe for healthy people but can be a problem for immuno-compromised people. We will all have to gown and wear gloves when we visit her until she comes home in order to keep from spreading it to other patients in the hospital.

Finally, her jejunal feeding tube(the one that enters her small intestine) seems to have possibly broken from the external tube and drifted down into her rectum, making feedings temporarily impossible. This is a VERY RARE event that has many of the doctors stumped. She is scheduled to have a new j-tube put in tomorrow morning so that we might resume feedings. They will do this in interventional radiology under sedation and will be able to decide then what the procedure will be to remove the detached piece of tube. She may just have to pass it on her own. Leave it to Kiera to find something to get that no one gets.

Despite all this, she and I spent a wonderful evening together tonight. She was alert the entire 5 hours I was there (give or take a few brief cat naps). She watched me the whole time. Her fevers are down and she has only spit up a few times here and there. Hopefully, she will be back to feedings tomorrow after the new j-tube goes in.

That's all for now!
Therese

Happy Easter!

As it goes, Kiera has up and down days. She was running a fever between 101 and 103.2 yesterday, but still managed to be pretty animated even though she wasn't feeling well. They are running labs and trying to figure out what's causing her fever but so far don't know.

She's getting more active with her mouth and likes CHOMPING on fingers. That girl definitely has a bite! We are working along with the speech therapists to get her suck back, which she lost when she was in her coma, and to draw her tongue forward.

Dr. Glasser, the pulmonologist, has given me his best guess conservative estimate, that Kiera will probably be in the hospital 6 more months---just in case you were about to ask me when she's coming home. We are getting road weary. I'm glad I went to stations of the cross Friday. I just try to remember that we are all given crosses to bear and that there will be a homecoming day.

I've attached a few Easter Sunday pics of Kiera in her Easter dress and the family in our home away from home. Enjoy!



Love,
Therese

Kiera is having a good week

Kiera is successfully weaned off one of her narcotics, fentanyl. She is still on Methadone and Ativan. She has been alert and focused this week and seems to be progressing, slowly. Her lung x-rays continue to look better. She is still working on feeding issues. Maybe this week will bring some success in that area. They will be doing a nuclear study to see how fast her stomach is procesing food and then make some decisions regarding how to progress. Currently, she is getting fed 2/3 formula feedings through a tube into her intestine with the other 1/3rd coming from I.V. fluids.

The major theme in her care right now is SLOW and Steady. There may not be much news to report for a while. We're trying to SLOWLY wean her hospital ventilator enough to try her out on a home model ventilator while in the hospital. This will be a lengthy process.

I am planning to take her baby swing to the hospital this week and see if she likes it when we're not there. She gets occupational therapy almost every day and has a bouncy chair to sit in. She's chronologically almost 8 months old, but should be developmentally like a 5 month old. It's tricky trying to keep her up developmentally when she lies down most of the day connected to her ventilator. We have to THINK about things that usually come naturally in daily baby care. Today, Daddy and I played patty cake with her and rocked her. I bounced her a little on my lap. She's pretty stingy with her smiles, but she seemed to enjoy the interaction. She crashed in Daddy's arms and was so cute!