Health Update - Week 3

January 25, 2005: Theresa is continuing to do well after being removed from ECMO. The doctors seemed very pleased with her progress, and are encouraged by her oxygen saturation levels even on the lower ventilator settings. They have increased her nutrition intake, much to the relief of the nutritionists. (all of them sat around and started doing the math calcuations to figure out what percentage of this and that they could include into her new diet - very interesting math formulae!) After her hernia repair surgery, if all goes well, they will introduce milk into her diet via tubefeeding. (they don't want to do it now, because her bowel is still up inside of her chest and if it gets distended, it can delay her repair surgery).

Last night they put an arterial line into her arm, which is how they draw the for her tests.

They also washed her hair off somewhat, and since she won't be having the daily head ultrasounds, she no longer has white goop in her hair, and it actually looks fluffier and fuller! :) I am now allowed to put socks on her (her first item of clothing), so I will be doing that as well. Her bed has been lowered, so I can talk to her more and she responds sometimes by opening her eyes.

The are also trying to wean her off her morphine level (they have her off of Pavulon, the paralyzing drug completely), but they have to do this slowly, since she has already built up quite a high tolerance, and they don't want her to go into withdrawls.

Her hernia repair surgery is still scheduled for Thursday (morning). There are 3 basic plans in place for repair, depending on how severe the hernia is (they won't know until they can see it for themselves) One is to use the actual diapgrahm muscle (if there is enough) and just stitch it closed (doubtful that there is enough, but this is the best because it will grow with the child). The next is to use part of her abdominal muscle and fold it over to use (again, it grows with the child). The third is to use a patch (made from a pig intestine!) - which has a chance of recurrence and may need a further surgery once she is a little older since it won't grow with her.

Also, if there isn't enough room in her abdomen for the liver, gall bladder, and bowel to be placed back, they may have to use an external patch on her belly and create more room (basically cutting a hole and using the patch to make her belly bigger)

They will also take a look at her right lung to see how much is there, and what it looks like (Dr. Cass is very hopeful that we will be pleasantly surprised at the amount there)

Because of the stress of the operation and the fact that the now very full abdomen will start to push up on the newly closed diaphragm, Theresa (and all babies with this condition) go through a critical period after the surgery where they get much worse. Her right lung will have lots more room, but isn't large enough to sustain her, so her ventilator settings will be increased, and she will be monitored very carefully. This is to be expected, so don't panic if her health updates look like they aren't as good as the last couple of days.

January 26, 2005: When I arrived this morning to enter the NICU, they told me that they had moved Thersea to bed number A-13! This is a bed out on the floor, and has one nurse for two patients. Although the idea that she is stable enough to be moved is good, it is very noisy on the floor, and we miss our one-on-one care. (we are somewhat spoiled to it, but Thersa also seems to get agitated whenever her cubicle mate cries, people are talking too loud, or alarms from other babies are going off)

The doctors say she is still on schedule and looking good for tomorrow's surgery, so we are holding our breaths that nothing will happen to change that. It is looking like it will be around lunchtime instead of the morning, but Dr. Cass is requesting anestheseologists and others that he is comfortable with, so we would rather have a good "team" of people than do it earlier in the day.

We had her baptized this morning. It was a small ceremony (Tim, Theresa, the hospital's priest, and I). Her neonatologist, Dr. Adcock stood in as a witness, since her godmother, Jill Brown wasn't able to make it at the only time the priest could baptize her (Jill did come later and spend some time with her.)

Also, since she is stable right now, they let me hold her!!!! It was a HUGE production of unhooking her from all of her machines, monitors, etc. Also, they had to tape the ventilator tubing to me, and then rewire everything back. That was a little stressful, but I held her for 2 hours! I didn't want to agitate her, so I tried hard not to move, and my arms fell asleep! Luckily, Tim came and helped move her back (he was given the chance to hold her, but declined, because it made him too nervous) I have to admit it was very nerve-wracking when they suctioned her in my arms, or when an alarm would sound, and I couldn't see which monitor it was. Overall, she seemed content, and it made me very happy, so it was worth the effort! :)

January 27, 2005: Hernia Repair Day! All the consent forms are signed, the risks have been told to us multiple times, and both Dr. Cass and Dr. Miniati have gone into all the possibilities of what could possibly occur once they see what they are dealing with. So, now it is just a matter of getting her in the operating room, and doing the actual surgery.

We were told noon or 1 p.m. for the start time, but they didn't actually come get her until almost 2 p.m. It was approximated at 2-6 hours, and they asked us to sit in the O.R. waiting room so that they could update us occassionally. When 2-3 hours had passed with no update, we were starting to get scared, but after 3 1/2 hours, Dr. Cass came and told us it was all over!

He did say that the amount of liver in her chest was the most he had ever seen before, and that it wasn't too simple getting the amount of organs that had been developing in her chest back into her abdominal cavity, but it was done with minimal blood loss and no major trauma to any of the organs, so for that we are grateful! She was able to have some of her own diaphragm stitched together, they had to use her abdominal muscle for some of the repair, and they did end up using a patch for the larger hernia, so Theresa essentially got all three treatments!

Her right lung is approximately 1/6 the size of a "normal" lung, but not bad considering it didn't have much room to develop. It was pink, they said, so it should grow somewhat over the next few weeks, months, and years, though it will never be the full size of a normal lung.

Her saturations are looking good, she hasn't gone into respiratory distress or anything they were worried about, so we just have to wait for the next couple of days to pass with good results.

(The doctors took photos while doing the surgery, and are going to email them to us. We will post them on the website whenever we get them.)

They did move Theresa back into the ECMO room "just in case" she needs to go back on it. Of course, we pray and hope that she won't, but it is nice being back in our old room with individual care and the quiet for her to rest and recover in.

January 28, 2005: Her belly actually looks like a typical baby's belly now - it is nice and round, instead of sunken in. She isn't too puffy, but that may change as well, as her organs react to being squished into a new space.

When the neonatologists met for rounds this morning, it was one of the quickest and most boring set of rounds we had had in the past 18 days! This is good thing, as it means that there isn't much to report on, other than the fact that things are looking good considering that she is less than 24 hours post-op.

Later this morning, we did receive a phone call (we had just left) that her ventilator tube had gone into her right bronchi (the smaller lung) instead of down the center where it belongs, which dropped some of her blood gasses. They fixed it, so a crisis was averted, but it caused some excitement and scares among all of us. Her oxygen saturations never dropped too low, so she handled it well. So far, so good.

January 29, 2005: Things are still looking very good for Theresa. The doctor on for this weekend (Dr. Speer) suggested making several ventilator setting changes over the course of the day to "test" her and see if she was ready to come down on her oxygen concentration (she was at 50%, but got to 25% by the end of the day - room air is 21%) Remember, that too much oxygen over a long period of time can cause blindness and other problems, so the sooner she is able to come down, the better.

They also reduced the heart medication, Milrinone, that she was on to half, and plan on discontinuing it after 48 hours. Her heart function is much improved, so they don't see a reason to keep her on it.

She did so well in fact with her new settings, that they moved her out of her room and onto the floor. She is now in C-53, among many other babies (and some empty spots, as their census is low this week, but will soon probably fill up) Her nurse has 1 other patient, but this time her space is in a quieter section of the nursery, so she isn't being disturbed too much. She is still VERY sensitive to being moved, touched, etc.

January 30, 2005: Theresa continues to do well. She is out of her "critical" period post-op, and surprisingly did not require as much support as she could have, or was predicted that she might have. Both neonatologists and surgeons are pleased, which means that we are extremely pleased!!! She has had 2 post-op bowel movements, and more bowel sounds, but they still think it is too early to begin feeding her, so we will have to wait until later in the week.

She is still a little sore from her decannulation surgery, so she wants to keep her head in the position it was in all throughout ECMO. The nurses are supposed to rotate her head every 6 hours to the middle and more to the right, but she HATES it. This morning, she cried so hard that we could actually hear her faintly, and the ventilator usually keeps her from making noise. Tears were coming out of her eyes, and there wasn't anything I could do that comforted her. It really broke our hearts, because we can't pick her up, and tell her that everything is all right. She gets upset when ANYONE touches her (including us) because so far most of the time she is touched it is to be poked, prodded, moved, stuck, etc. They gave her medicine to calm her down, and it did, but she still looked sad.

Tomorrow, her attending physician and team of residents and fellows will change. Dr. Adcock will move on to other aspects of being on the faculty, and we will receive a new attending team. More names and faces to learn! More new people for Tim to discuss Theresa's treatment with! :)

January 31, 2005: Our new attending neonatologist is Dr. Weissman, who happens to be one of the chiefs of neonatology (THE chief, according to some of the nurses). He was very welcoming and invited me to join rounds about Theresa, so thus far he has made a good impression.

He seemed impressed about her progress, and anything that makes the doctors happy, makes us happy. Unfortunately, there is not too much they can do right now to get her to progress any faster. She is doing a good job on her own, all things considered, but we just have to have patience, as she heals, and her lungs grow. This is very frustrating for Tim and I, who have essentially reached the end of our "expertise" and don't have any research to go on, magic numbers to achieve, etc. "Wait and see" is the hardest thing to do!!!

One thing they are concerned about is the fact that she won't allow her head to be turned from the position it was in while she was on ECMO for those 2 weeks. She wants to look to the left side, and so they have ordered for it to be turned to the midline and right side every 6 hours. Each time the nurse does this, Thersea will fight them and turn it back, or if they force it (by holding it there with rolls of washcloths, etc) her oxygen sats will drop as she tries to fight it. Usually, they have to end up giving her medication to calm her down.

So, today, the doctors put in an order for Occupational Therapy to come work with her, and perhaps design her a special pillow. They are going to evaluate her tomorrow. The nurse did work with her all day, and got her to move her head and keep it there without having to require too much medication, so I do think it is getting somewhat easier. It is also less painful as her decannulation sites heal. Her incisions (from both the cannulas and the repair surgery) are looking very good. I am impressed on how small the repair incision is considering how much manipulation of her internal organs they had to do.

I also got to hold her again! About an hour, this time, but well worth it. In the meantime, they used the opportunity to change her bed, readjust her mattress, etc. so that she will be more comfortable.

She did have to receive another blood transfusion (not much) because of all the blood they draw out from her when they test her blood gasses, electrolytes, etc. This is common, and the first one she has had to have since her surgery day.

We are very grateful that she has made it through this far, and now await the many steps (however tiny they may be) she will have to achieve to get her extubated (off the ventilator), eating, and finally home.