Finally, by the end of this post we will be up to date with Owen's progress! After two days in the NICU at Good Sam, Owen was transfered by ambulance to Cincy Childrens. This was a pretty difficult time as Tyler was separated from Owen for 2 days as she "rested" from delivery at Good Sam. I, on the other hand, had the difficult task of traveling between hospitals to help care for the two people I loved the most. Tyler was finally discharged that Thursday and we were fortunate enough to be admitted to the Ronald McDonald house that same evening. Now, I can't speak for anyone but myself, but I really thought the RMH would resemble something like a summer camp dorm. I figured the residents would sleep on cots or bunk beds and the house would come equipped with community showers and no air conditioning. I was completely wrong. The RMH is amazing, as we liken the stay to being much like a hotel with the exception that it is much cheaper ($25 a night) and you get fed 1-2 hot meals a day. Plus it is literally one street over from the hospital itself. If you have time, check out the RMH site
http://www.rmhcincinnati.org/ .If you are looking for a charity to donate money/time to, this is a fantasic one to get involved with. We can only begin to speak on the comfort that RMH provides for us during this stressful time.
As one might expect, Owen has already received a bit more medical attention than most babies, but to be honest he has probably had more medical procedures than most adults will ever see as well. Here is a generalized recap of how August has gone for him:
1)Intubations: to this point Owen has been placed on the ventilator 4 times. The first time was obviously with delivery (which was accompianed with his chest tube), the following two were from his two surgeries and and the most recent was due to being fluid overloaded. For first three times, Owen was extubated (tube taken out) within a day or so, but for the most recent time, Owen was forced for be on the ventilator for over 5 days. One of the consequences of renal failure is the inability to move fluid out (via urine), so the excess fluid in the blood stream has to have somewhere to go. The fluid starts out by going to different tissues which was what was responsible for Owen looking so puffy or as Tyler likes to call him, the "Michelin baby". The lungs are also considered fair game for fluid to move into, and as a consequence it dampens Owen's ability to breathe. Eventually Owen began to increase his breathing rate to compensate and he was wearing himself out. So he was put on the ventilator (to help do the work of breathing for him) this past week and was just extubated on Saturday (Aug 28).
Quick tangent, is there a notable resemblance?
2)Surgeries: At this point, Owen has had 2 real trips to the OR, and they were both during his first week of life. The first one came the day after he arrived at Children's. This was called a bilateral nephrostomy, which essentially involves taking a tube a placing it in each kidney through his back.
This had to be done due to Owen's urinary tract anatomy. His ureters, (you know, the things that connect the kidneys to the bladder), were badly damaged thus preventing drainage to the bladder. A nephrostomy allows the urine to directly drain directly from the kidney into a drainage bag. So as the kidneys are allowed to recapture some lost function, the ureters are also allowed to repair themselves to a degree as well. We are thankful to report that this particular surgery did its job! Do to the pressure release, the kidneys have picked up their urine production and they are able to drain into his bladder. The nephrostomy tubes were eventually removed two weeks after surgery. (NOTE: even though Owen is getting to the point where he is making as much urine as a regular newborn, it isn't considered "good" urine. He can't filter the bad stuff nor reabsorb the good stuff, but the fact that his kidneys can sufficently get rid of fluid is GREAT news and will help prevent him from getting more fluid overloaded. Unfortunately, his need for dialysis won't be avoided unless his kidneys begin to filter which at this point is about 15% or so of normal)
This leads us to the second surgery that Owen had: Peritoneal Dialysis (PD) Catheter placement:
THe left diagram is how the catheter goes into the peritoneum (abdominal cavity) and the right picture depicts what the PD catheter looks like externally (NOTE: the right photo is
NOT of Owen)
PD dialysis is a bit harder concept to explain. You should first understand some basic chemistry. Water tends to travel to compartments (in the body or outside) that have less water. Or in other words, fluid always moves from a area of less concentration (more water) to an area of higher concentration (less water). Why does water do this? Unfortunately I woudn't be the person to ask, but we are thankful it does as this is the basis for the treatment. Check
http://en.wikipedia.org/wiki/Peritoneal_dialysis if you really want a better explanation. Basically highly concentrated fluid is placed in Owen's PD catheter and allowed to dwell for an hour or so. Water kept in Owens small intestines and other organs is attracted to the high concentration and the resulting infilitrate drains out the same catheter at the end of the dwelling time. The bad stuff in Owen's blood that the kidneys would usually excrete also tends to the flow down the same gradient and drains on the outside as well. The objective of PD is to remove more fluid from Owen than is put in. This process is occuring 20-22
times per day and it is very grueling to all parties involved (Owen, us, doctors and nursing staff). Eventually, Owen will be placed on a cycler which performs dialysis over a 12 hour period which can be done from home (thankfully). It won't be until then that Owen can physically arrive at our home in Lexington and we are basically still 2-3 months away from this point. Part of the delay is the fact that PD catheter has yet to heal completely. We have tried to start PD 4 times currently, and each time the PD had to be stopped within 24 hours to leaking from the site. We just started again yesterday, and to this point, the catheter appears to be doing its job with very little leakage!
This has been a fairly simplified explanation of the last 3 weeks in terms of major procedures. At one point, Owen had 8 tubes sticking out of him! (2 nephrostomy tubes, PD catheter, Foley/urethral catheter, IV line, PIC line, Intubation tube, NG tube). Thankfully he has since lost the nephrostomy tubes, IV and intubation tube. At this point, Owen is doing great and is already developing quite a strong personality. Our hope is that all the major surgeries and interventions are over for the near future, but unfortunately there are often several complications needing surgery in PUV babys leading up to transplantation.
We are glad to finally be up to date on the blog and can't wait to share our experiences with you guys as they occur!
