The learning process

Hi everyone,

Yesterday (Monday) was a big day with firsts for all of us. For Michel and me, it was our first trach change. We have to take Peter's trach tube out and put a new one in every two weeks. As IKEA furniture assembly instructions used to say, you have to be two people for that. One person takes the old trach out and the other slips the new one in, lickety split! It was easier than we thought it would be, and Peter did not get upset. Our trach instructor was there with us, which gave our confidence a boost.

Later that day, Peter had his first close encounter with a bottle. The occupational therapist introduced him to a bottle filled with his special non-fat milk. We have been practicing sucking with him all along, but learning how to suck and swallow is a whole new thing. He practiced again today and is beginning to get the hang of it. Soon we look forward to being able to bottle-feed Peter ourselves!

Daniel spent the day with his friend Arielle. On the way home afterwards, he said he wanted to marry her. We said he had to wait till he finished school, but after that it would be fine with us.

Tracheostomy class

Hi everyone,

We should mention that the pictures in the previous post were taken when Peter pulled out his feeding tube. That's why he's looking so pleased with himself! Didn't I mention the nurses are good-humored? They took the cute pictures for us, then stuck the tube back in.

Today Michel and I attended a one-on-one trach class to learn how to take care of Peter's tracheostomy when he comes home. The class covered inserting and removing the trach tube, suctioning, cleaning, and emergency procedures. We got to practice on a baby doll. The class lasted about 5 hours (not including lunch break) and by the end of it, we were experiencing information overload. Fortunately we now get some on-the-job training, helping the nurses with Peter's trach each day to get ready for going solo at home. Chances are Peter will have to keep his tracheostomy until March, as the hospital does not like to remove them during flu season. One other trach-related concern we had was laid to rest today: the tracheostomy information booklet had spoken in very disparaging terms about pet hair, and one of the nurses had indicated that pets and trachs were incompatible. We simply did not know what we would do with our three dear cats! But the instructor said that it would not be a problem.

We have also started hearing some tentative time frames for Peter's recovery. He is receiving milk at a gradually increasing rate, and will soon reach the point when we can try bottle feeding. He is expected to have kicked the methadone and ativan habit in a week or two. At about the same point he will graduate to the third floor recovery unit and will no longer be in intensive care--that's a big deal! The doctors have ventured to say he might be discharged in six to eight weeks. By October, if all goes well, fats can be gradually re-introduced into his diet until he is able to have my milk. No one can say whether he can be taught to nurse at that point, or whether he will only bottle feed.

When Peter is discharged, it will be a joyful day. For now he has some more recovering to do, and we must become proficient in trach care. We must also make arrangements for in-home nursing which involves finding agencies covered by our insurance and interviewing them. It will be a lot better in a lot of ways if Peter is able to get off the ventilator. That means he will just breathe through the trach tube, but without being constantly attached to, and dependent on, the machine. The doctors are certainly hoping to get him off the ventilator before he is discharged--please pray that this will be so.

Slow Progress

No news is good news. This has definitely been our motto this week. We have been extraordinarily busy with all sorts of things (including my swearing-in ceremony as a U.S. citizen this past Wednesday). Peter is doing well. The doctors are keeping an eye on his chest X-rays as there is some fluid retention visible in the lungs. Dr. Baker said that he is not too worried about it because he shows no other signs of breathing difficulties and it does not indicate the return of the chylothorax because these are not pockets of fluid buildup.

Here are the two pictures of Peter without any tubes in his face (taken by a nurse and now finally scanned).

And here's some video

Hello all,

Not much to report, really, since yesterday. Peter is doing quite well, even in the opinion of Dr. Overman. There's a long way to go yet, but things are definitely looking up. He has been taken off Dopamine and Milrinone completely (both are heart medications but he was receiving them primarily to boost kidney function) and they're working on the methadone. This is not an easy task because it is a habit-forming drug. Apparently, they were weaning it a little too quickly and found he was suffering from withdrawal, so they eased up on the schedule. Octreotide, the medication that he was receiving to fight the chylothorax is being weaned over five days and he should be off of it by Friday (though the doctors believe this medication has had no effect on Peter whatsoever).

So, Peter is still a little bit of a junkie, but he is making progress. He was apparently so eager to get rid of tubes that he yanked his feeding tube out of his nose this morning. An enterprising nurse quickly took a picture of Peter without any tube whatsoever on his face and printed a copy for us (sorry, no digital version available). The tube had to go back in, though...

Here's some video of Peter from last Sunday (sorry, had some trouble uploading it):

Two Months of Peter

Hi everyone,

Today the nurses planned a "birthday" party for Peter, who was two months old today. The hit of the party (as far as Peter was concerned) was a shiny red balloon tied to the foot of his bed. He couldn't keep his eyes off it as long as he was awake.

Peter has been happy and active the past few days. He even smiled at Daniel, to his great delight. The only exception to Peter's good mood comes when he runs short of methadone. The doctors have started weaning him off this addictive painkiller now. The soft neoprene splints on Peter's hands in some of the photos are to help his thumbs stretch into a normal position; they have a tendency to fold in towards his palms. Another change is that Peter is now in a hospital crib instead of a full-sized bed.

No More Chest Tubes

For the first time since his surgery on May 15, Peter is now without any chest tubes! After several days of no drainage, and the X-ray confirming that there was no hidden buildup in his chest, the surgeon today decided to remove the remaining chest tube. Betsy was able to hold him without any tube and we also took the opportunity to dress him in a suit.


Peter is finally starting to do better. We remain cautious but optimistic about his progress this week. This also goes for the doctors. Peter's cardiologist, Dr. Baker, approved an order to stop his antibiotics (which he had to take as long as the chest tubes were in). That also means that soon they can start tests again for MRSA so they can eventually give the all clear. (For those who missed this detail: Peter tested positive for MRSA early on and had numerous negative tests afterwards, but they could not lift the MRSA restrictions while he was on antibiotics.) The weaning process for the methadone has also started and soon, we were told, they will carefully start weaning him off other medications too.

We are of course overjoyed. Please pray that this progress may continue.

N.B. The photo above was taken with another camera--sorry about the lower quality. All photos I took today can be viewed on the Picasa website (click on link in the right column next to this blog).

And then there was none...

Hi everyone,

Just a brief update with good news. Peter's chyle output continues to reduce--it went from 30 ml for the day on Wednesday, to today's grand total of 0 as of this afternoon. He could be on his way to losing the other chest tube soon!

Peter also started getting food again through his nose tube today (this had been discontinued during the weekend edema crisis). This time, he's getting the real McCoy, special fat-free milk from the Denver breast milk bank at 2 ml an hour. To ensure that he gets enough calories, he is still getting IV feeding too. This regimen will continue, with the volume of milk being increased until it is enough to start bottle feeding.

Peter looks and feels increasingly comfortable as he loses the excess fluids in his body. He spent some time in my arms and in his bouncy seat, and was very happy and smiley.

Less Chyle

Just a brief posting today to give the encouraging news that Peter is putting out less chyle. On Sunday, it was about 380 ml; on Monday, he produced about 300 ml. When we left today, he was on track to drain less than 200 ml. This is very good news: the gradual slowing down of the chylothorax, which should give his body time to adjust to a new economy of fluids in his body. Both Dr. Overman (the surgeon) and Dr. Baker (the cardiologist) were optimistic about this state of affairs. And since the left chest tube was not draining anything anymore, they decided to take it out today. So, we're down to one again. Praise be to God.

Improvement

It is perhaps a little counter-intuitive but we are happy to report that the chyle leak has started up again, this time on the right. We consider this good news because it means an immediate improvement in Peter's health as the fluids are no longer building up in his body. After two turbulent days during which there was temporarily no drainage, the chyle leak shifted over to the right (the side where the drainage tube had been removed last week but which has been replaced, of course), leaving the left side at a complete standstill. At the moment, drainage is about at half the speed (ca. 400 ml a day) from last week. This is still a substantial amount of fluid loss but quite an improvement from before.

Of course, Peter remains a sick little boy. His kidneys are not functioning exactly like they should, though Peter is reacting well to the change in diuretics. Today, he was losing about the same amount of fluids as he was taking in. Hopefully he will be losing the extra fluids soon.

Perhaps this is the way the chyle leak will stop: bit by bit. Please continue to pray for Peter that the leak might stop soon but that it might not be too abruptly.

Two tubes again, but for how long?

Hello everyone,

Time for another update. Peter spent four contented days with only one chest tube. The occupational therapists even brought him a bouncy seat, which he loves. What a nice break from lying in a bed all day and all night! I also got to hold him several times over the past few days.

On Thursday night, however, the chyle leak on the left side suddenly stopped. While this sounds like a good thing--a wonderful thing--it was not altogether comfortable for Peter. The fluids began to build up in his body, his heart rate soared (200 beats per minute as opposed to the healthy range of 130s and 140s), and his breathing became labored. The doctor replaced his left chest tube yesterday morning and when we left the hospital it was draining as usual.

By this morning, however, the chyle had stopped again. A chest and abdomen X-ray and an ultrasound showed only one smallish pocket of fluid on his right--the rest of the chyle is building up in his tissues as edema. Thus, the doctor reinserted the right chest tube to drain out that pocket of fluid, but does not expect the drainage to continue for long. Getting rid of that fluid helped Peter's breathing and heart return to normal rhythms. His torso is still extremely puffy, though his head, arms and legs are not affected.

Peter has been put on a new diuretic since his body has become unresponsive to the one he had been receiving. The doctor tells us that sudden stoppage of a chyle leak does sometimes happen, in rare cases (well, what would we expect from Peter by now?). His body now has to find a way to get rid of this excess fluid ASAP. The fluid buildup puts pressure on all his organs, but his kidneys are at the most risk. When we left the hospital today Peter was heavily sedated but trying his very best to stay awake and look at us. Nothing keeps him down for long! Please pray for Peter to get rid of the excess fluid in his body and for his kidneys to remain healthy. In short: pray for pee, and lots of it.