April 12, 2005:  No new news, just getting everything ready for her surgery and for Nathaniel's caretakers to stay with him.

 

 

April 13, 2005:  Theresa had her 2nd physical therapy session with Joyce (and the last one until she is recovered from her surgery).  She did very well, and seems to be getting stronger.  She still tends to "protect herself" by pulling her arms and legs in and tenses her shoulders up.  We are going to have to massage her more, and try to get her to relax those muscles (she loves the massages!)  Once she is allowed to feed orally, we will work more on those skills as well.  As far as holding her head up, she can when she concentrates hard, though not for too long.  She can also turn her head when held upright to follow a moving object, though it is a struggle for her.  These are just some things she will have to work on. 

We are hoping that she won't develop an oral aversion after being reintubated and extubated for her surgery.  So far, she doesn't seem to have any aversion to her pacifier, or her mouth massages at all.

 

April 14, 2005:  The visit from the Home Healthcare Nurse revealed that Theresa is still gaining weight!  She is up to 5.48 Kg (a little over 12 pounds!)  It is evening out more now, and she is doing great.

 

Tomorrow is the big day.  We will try to keep the website updated periodically as we get the chance, and let you know where we will end up staying (private room versus Pediatric ICU).  Keep praying for a swift recovery.

 

April 15, 2005:  Today is the big day!!!  When we arrived for the 7 am check-in time (after a restless night's sleep), we were told that we had been "bumped" to a later time because the OR was busy with an emergency case.  Finally, at around 10 am, we carried her as far as they allowed us, and began the slow wait.  We were told 2-2 1/2 hours due to the fact they were going to use an epidural for anesthesia to minimize the chances of not being extubated (since the anesthesia would be administered slowly over time and therefore not as much as once which keeps the airway from working)  At around 12:30, they called us to tell us it would take a little longer since the epidural took awhile to work, but that Theresa was doing fine, and that her vital signs looked good and had stayed stable.

At 1 pm, Dr. Cass came to the waiting room to tell us that it was over, and that Theresa had done very well.  Her vital signs were good, and she was able to be extubated as soon as it was over! 

They kept her in the recovery area for a couple of hours, then moved her to the 11th floor in a private room.

Once we got to her room, the nurses seemed a bit taken aback that a baby who had been on ECMO and had Theresa's history wasn't in the NICU Level 2 (we couldn't go back to Level 3 since we had already been home), but luckily, our nurse had been a former NICU nurse and was okay with taking care of Theresa.  (though the 5:1 patient/nurse ratio takes some getting use to as we are spoiled to the more individual care of the NICU, but we are glad that she doesn't require such intense care.)

The length of time we are in the hospital depends on how her G-tube site heals.  They aren't going to introduce any foods via stomach for a couple of days, then start with Pedialyte, then milk, so it will be awhile before any kind of prediction can be made.  For now, she is comfortable, and the epidural is still in to allow pain meds to be administered.  She has an IV in her arm for nutrition and other medication.

She also hasn't peed since before her surgery, so they gave her a bollous of saline to try and get her to urinate.  She is very puffy, and the skin around her eyes are swollen. 

 

April 16, 2005:  Last night was a very rough night!!!  Theresa woke up crying and in pain (we know her cries and how they differ, plus her heart rate would go up indicating distress).  Of course, it's easier to convey pain if you can speak, so we had to speak for her.  The anestheseology resident on call gave her a bollous dose of pain medication through her epidural and turned the continual rate of flow up on it.   Since she still hadn't urinated, they had to catheterize her (and got a LOT of urine that way, so I guess her bladder hadn't "woken up" yet.)  After awhile, the drugs seemed to work, but just as she started to settle down, her IV site plugged up, and they had to move the IV to her foot.  Not much sleep for anyone, but she is doing well now, and resting peacefully.  Our night nurse was great, and really earned her pay since she had to devote so much time and energy to Theresa. 

 

We have same day nurse as yesterday (which is good since she is experienced with Theresa and is comfortable with her care.)  Hopefully, we'll keep her comfort level up and she will continue to rest most of the day.  It is a fine line between keeping her comfortable, but not overdrugged so that her respiratory and heart rates are still good.  She is still a bit puffy, but not too bad, though they will probably restart her Lasix to help her urine output continue.

 

Her surgeon, Dr. Cass, came up to check on her (it is his day off!) and has ordered that the pain management group reassess her, and perhaps pull the epidural and give her a pump of pain meds through her IV that we (and her nurses) have control over to push whenever she is in pain.  It will monitor the amount given, so we can't give too much, but will reduce the wait associated with asking for the medication, ordering it, the nurse signing it out, and administering the narcotic.  They don't seem to know or agree on whether or not Theresa's prior high doses of narcotics has reduced the efficiency of her current pain management, but will carefully monitor her to make sure she is not in too much pain today.

 

April 17, 2005:  She did end up getting the IV narcotics with the control doseage button, and it really seems to have made a difference!  At first, it took awhile to get it to work (they gave her a low-dose, so it took a couple of doses initially), but I only had to dose her a couple of times during the night, and she was very comfortable.  In fact, a lot of her cheerful personality came shining through around 3 am, since she felt so great, and she "talked" to me non-stop for nearly an hour (I'd rather be up hearing her coo than cry!) :)

 

Today, around 2 pm, they will give her about 1 oz of Pedialyte as her first "trial" through her stomach tube.  Her stomach has shrunken, and is smaller than normal (this was observed first-hand by Dr. Cass when he performed the surgery), so we'll see how she tolerates it.  They will repeat this every 3 hours, and then tomorrow if all goes well we can start milk.  She is getting IV Zantac to control the stomach acid and help the tissue around the G-tube heal (stomach acid leaks out of the hole the tube is in and irritates the surgical site, so the Zantac should help minimize this as well.) 

 

Tim went home last night, and returned this morning with her mobile.  We attached it to her crib, and she LOVES it!  That, along with her blankets from home, seem to help soothe her.  Nathaniel came and visited (Jill is watching him today, so she brought him) and he was more interested in playing with the phone and remote control, but it was good to have him visit (unlike the NICU, all siblings can visit regardless of age.) 

 

We haven't had to give her too many doses of morphine today, and some of the times we considered it, we changed her diaper, rocked her, turned on her mobile, etc and she stopped whimpering and began to smile.  Dr. Olutoye, the pedisurgeon on call, stopped by and said she looked good.  She seems to feel better now that she's not throwing up at all!  She's a lot happier even though she's still recovering than she was pre-op at home continually refluxing.  Though it is still hard to see her go through another surgery, if it helps it will be worthwhile.