March 8, 2005:  Nothing much to report.  She does throw up often, and since she doesn't have enough lungs to manage if she accidentally aspirates on the vomit (which often consists of gastric juices or lots of saliva), her surgeon wants to schedule a swallow-function test.  Tim emailed him regarding the reflux (since it was pretty bad a couple of times and even came out her nose).  This test will let us know how well she can swallow, and the amount of risk for her to aspirate on it.

 

March 9, 2005:  Theresa had an afternoon with her grandmother, while Christin, Jill, Caleb, Josh, Nathaniel and I went to the Houston Zoo.  It was a beautiful day, and the boys loved seeing each other again.  I feel so bad for Nathaniel since he is being quarantined as well, so he won't get ill and bring it back in the house.

 

March 10, 2005:  I took her for Theresa for her weekly weight check at Dr. Ingraham's office today.  Jill was watching Nathaniel, so it wasn't overly difficult, but it still took a lot of planning just for a 5-minute office visit.

The results were good:  4.35 Kg (approximately 9lb 8 oz!)  She is continuing to gain well.  Still no word on the syringe pump that the doctors requested when she was discharged. 

 

March 11, 2005:  Theresa turned 2 months today.  It is so great, having her at home!  I never imagined we would be celebrating her 2 month birthday at home, and only had hoped we be celebrating her 3 month birthday here instead of at the hospital. 

 

Well, I would love to say that her first 2 weeks at home were uneventful, but tonight changed it all!!!  At around 9:30 p.m., her pump's "occlusion alarm" went off, and we couldn't figure out what was wrong.  We changed out the bag and the med-port tubing with no luck.  We called the home health care agency, and ONE HOUR later, they called back, and basically told us to do everything we had just done, and then when that didn't work the 2nd time, they told us to go to Texas Children's ER, figuring the tube was kinked inside of her and would need to be replaced.  So, we arrived there shortly before midnight. Luckily, we ran into one of Theresa's surgeons, Dr. Miniati, who after getting over the initial shock of seeing us in the ER (we assured him it wasn't for anything overly serious, just the feeding tube), mentioned something about trying Coke to get it unclogged.  We though that "coke" stood for some high-tech medication, until he told us that he meant coca-cola, and that the carbonation or something would work on the clog, if there was one.

So, after a couple of hours of waiting for a doctor, we told them that we carried our own replacement ND tube, we just needed a doctor to do it.  Eventually the resident surgeon on-call came down and thought about either replacing it himself or admitting us so that it could be done under x-ray as it had when it was first put it.  We mentioned Dr. Miniati's theory, he called him at home (sorry Doug for having to wake you up) and brought us some syringes.  We bought a Sprite (I didn't want her having the caffiene) and Tim worked on it for a couple of  hours.  It worked!  (just as they were going to start an IV on her, Tim loosened a plug of build-up on the inside of her tube) we were home and back in bed by 7 a.m. - tired, but relieved that Theresa didn't have to undergo any stressful procedures or be admitted.  She was none the wiser, as she slept through the entire thing!

Nothing too traumatic - just a few hours, an ER bill, a 75 cent Sprite and a valuable lesson learned.

 

March 12, 2005:  We pretty much spent the day sleeping in and recovering from the night before.  Thankfully, Christin watched Nathaniel for most of the day for us.  Theresa is doing fine (she didn't seem to be affected by the hours of not being able to be fed), and now we know what to do in the future if her pump's tubing gets clogged again.

 

March 13, 2005:  A real adventure - we took Nathaniel and Theresa to get their photos taken.  When we get them back, I'll post the best ones on the website, and mail out others to family and friends.  We got the first appointment of the day, so that there weren't as many people there to expose her to, and both she and Nathaniel cooperated wonderfully.  Tim jokes that it took me more time to pick out the ones I wanted than it did to take them in the first place!

 

March 14, 2005:  We finally decided to switch our home health care agency to a different one in hopes of getting better customer service, and getting some progress on the syringe pump.  Theresa has been gaining weight just fine, but we think that the additional fat from the pump will help her.  Her reflux is bad, and we know that eventually we will have to have a fundoplication and a g-tube inserted, so we want her strong for when it happens. 

 

She will have an "open" fundo rather than a laproscopic one.  Her incision will be cut perpendicular to her hernia repair incision site.  Since she has never had anything by mouth, she will have a tube surgically implanted in her stomach (on the left side) to put food directly into, while she is retrained on how to take food orally.  Also, she is not able to physically take enough food in, plus the energy she uses to eat will discount the amount of calories she is getting when she eats, so in the meantime, this will help.