Health Update - Week 5

February 8, 2005: The physical interventions (elevating the head of her bed and giving her feeds over an hour) the doctors tried to help Theresa's reflux haven't helped, so they reduced her feeding amount today. They are also going to give her a feeding tube through her nose into her duodenum (intestine) instead of from her mouth to her stomach to bypass her stomach and help prevent the reflux. This will allow her to still get the nutrition from the milk, but she will still eventually have to tolerate some small feedings from a bottle into her stomach. If this doesn't work, there are medications or a surgical intervention they can do, but both have their own set of risks.

She is doing well on the morphine weaning, so they will probably discontinue the morphine entirely in a couple of days.

She had a 4 hour pressure support trial today, and they are going to continue the trials daily so they can see how she is doing and will make decisions each day as to whether or not she can be placed on just pressure support.

She is so alert and cute, though she frustrates the nurses (and mommy!) when she grabs at her wires and tubes and tangles her fingers up in them. She has quite a strong grip when she is determined to hold on! She has also started lifting her head a little and turning it on her own.

February 9, 2005: She had her second run at a 4 hour pressure support trial today. In the middle of it, the doctors rounded on her, and determined that since she did so well yesterday during the 4 hour trial, and was doing well during this one, they would extend this one to 8 hours!

She still had some reflux last night, and the center that is in charge of putting in the new feeding tube is closed on Wednesdays (and didn't have time to put it in yesterday) so we are stuck waiting on that until tomorrow.

All in all, it was the shortest amount of time rounding on Theresa so far (a positive sign since that means there aren't any problems for them to ponder at her bedside).

February 10, 2005: Since she had such a great run with her 8 hour pressure support trial yesterday, they extended this one to 12 hours! Theresa's sats were 100/100 almost all day today and that included when she was awake and asleep (when she was awake she was very alert, batting at her teddy bear, sucking on her special pacifier, etc.) Hopefully, they will continue to test her for longer periods at a time.

She had an appointment to get her ND tube put in, but there were several emergencies with other babies that arrived, and she was pushed back to tomorrow to get this done. In the meantime, they had taken her other feeding tube out, so she got pretty much a diet of IV fluids for the day and will until they put in her new tube.

Her surgeon came by to check on her today, and Dr. Cass was impressed with how well she is breathing on her own (against all odds and statistics). He didn't seem overly concerned about her reflux, and told us of some options (a surgically implanted gastric tube directly into her stomach was one) which could help. We'll see how she does with her ND tube, and go from there.

Feburary 11, 2005: Theresa turned 1 month old today! As in the tradition with Nathaniel, I took her photo (since we couldn't take her to the photography studio) with the nurse's help (she is holding up her head under a blanket). A bib, bow, and booties are all that she could "wear" but its better than nothing! (the bib is from my sister, the bow is from a friend at MOPS, and the booties were Nathaniels)

Theresa passesd yesterday's 12 hour trial, and so we are going for 18 hours! If she does well with this, she'll be on 24 hours over the weekend with a plan in place to begin weaning the pressure support over the next week (with hopes to extubate then if all goes well).

The doctors discontinued her morphine, so she is not on any narcotics anymore.

They FINALLY got her on the schedule for the placement of the ND tube, and she was the absolute last person for the day (if she hadn't gotten it then, she would have had to wait over the weekend) Because she had to fast before getting it, they upped her TPN/Lipids (IV nutrition), so she wasn't very energetic today and a bit cranky from having an empty stomach. They invited me to watch them place the tube (done while taking a series of x-rays). It wasn't easy to watch them do it, because she was very upset (more so by being held in place and strapped down) and her heart rate soared but her oxygen sats stayed good overall. Unfortunately, she threw up gastric juices in the radiology room and after getting her back into her bed. The radiologist had a somewhat more difficult time getting the tube in than he had predicted, and thought that part of this was due to the fact that her stomach was very large and distended. I don't know what causes that, and plan on talking to the doctors about it tomorrow, but he thinks that might be causing her to reflux instead of her stomach emptying properly.

It is important to get this taken care of so that she can get on full feeds and get her central line removed once she no longer needs the IV nutrition. Then, she won't have any lines (other than those monitoring her vitals) and I can hold her more often.

February 12, 2005: Tim went to the hospital again for the weekend. He says that the doctors are pretty concerned about her reflux (she had more during the night) and predicted that she had a bowel obstruction, so they ordered an x-ray. It came back fine, but they had already replaced her OG tube (the one in her mouth) so now she has 2 tubes in her mouth, and 1 in her nose. Not a lot of room left to breathe, but she is doing fine with her 24 hour trial (essentially she is breathing on her own since the pressure of the machine is counteracted by the pressure of breathing against the tubes.) They are trying to shunt the air in her stomach with the OG tube, but she is still having reflux (mostly gastric juices and mucous, since the food is being sent past the stomach) Of course, the ND tube is also holding open her valves and could be causing some of this as well (as the surgeon predicted that it might). Right now, the breathing issue is not a problem (which it was supposed to be, but she is really defying the odds) but the eating/digestion is causing us some stress.

They also restarted her on morphine (a lower dose than before they discontinued it) because she was agitated last night after refluxing (who wouldn't be?)

As a mom, I just want them to remove ALL the tubes and let her eat and then be burped (who feeds a baby lying down and doesn't burp them without expecting some reflux?), but I'm not an expert.

February 13, 2005: She continues to do fine with her 24 hour pressure support trials (now entering the 2nd continuous day on just pressure support), so I am hopeful they will continue to wean her tomorrow as planned.

They had apparently decreased her feeding amount after her reflux episode yesterday, so they increased it back to where they started. No additional changes have been made.

February 14, 2005: Happy Valentines Day to all of our loved ones!

Theresa did very well over the weekend with her ventilator trial, so the doctors took a somewhat larger step and ordered a 4 hour ET CPAP trial (basically, they leave her ventilator on, but they don't give her the extra pressure support, so she is breathing through a "straw" for 4 hours with all her other tubes in her nose and mouth - not an easy task) She did well, and her sats didn't drop much, but she struggled and worked hard to breathe the entire time. I don't know if they will consider it a "pass" and allow her to try for 8 hours or repeat the 4 hour trial tomorrow. We'll have to wait and see.

They did increase her feeding amount, so she is almost at half of what a baby her age would receive, and they decreased her IV fluids. So far, she hasn't had any major episodes of reflux, since they are shunting her gastric juices and the air that collects in her stomach, but she did gag several times today.

To ensure that when she does come off the IV fluids and is finally allowed to try to feed by mouth (once she gets some of this reflux under control), the doctors also ordered that occupational therapy work with her on "non-nutritive sucking" every 4 hours. This essentially means they give her a special pacifier to suck on so she doesn't lose the sucking reflex. Her mouth looks so full with all the tubes and the pacifier in it, I don't know how she can breathe, but she manages to anyway. :)