We were recently told that Owen may need to be on TPN for a while. This news is two fold for me. 1 - devastating. a step backwards. 2 - makes me realize how blessed we are to have Owen here with us. and also thankful for the advances in medicine - which has enabled Owen to sustain life and enrich our lives each and every day.
Before I go on, let me first explain what TPN is, why Owen needs it, and how this change will effect our everyday living.
Disclaimer: I, in no way, am an expert on TPN or how it will work at home. My limited knowledge comes from the time Owen spent on TPN in the NICU, conversations with the doctors, conversations with parents who have TPN dependant children, and my research done online.
(TPN - the yellow stuff)
What is TPN?
Total Parenteral Nutrition, or TPN for short, is nutrition that is delivered directly into the blood stream. It is delivered through the blood stream because the GI tract is unable to absorb enough water, vitamins, and/or nutrients from breast milk or formula.
Positives of TPN:
TPN will give Owen the chance to grow stronger and give his gut a rest when it needs one. He will be getting all the nutrition he needs for sure. It could be the jump start he needs to grow stronger and to simply grow so his gut can grown with him. Another positive: he would not necessarily have to go straight to the hospital when his gut decides it needs a brake. We may be able to simply increase the amount of TPN he gets throughout the week until we can get him back up to full feeds. This would mean that we wouldn't be coming to the hospital and staying for weeks at a time because he is dehydrated. This could potentially give him more time at home and less time in the hospital.
Negatives of TPN:
TPN is given through a central line. TPN cannot go through peripheral veins (which regular IV's use) because it is so concentrated; the vein just can't take it for very long. A central line is an intravenous catheter, or IV, placed into a large vein. Because these veins are larger, they can handle the concentration of TPN. A central line is a little more tricky to do than a regular IV. Central lines are usually surgically implanted, as Owen's will be. Central lines present their own set of negatives. The negative I am most concerned with is line infection. Line infections with a baby on TPN are almost always a way of life. It's not 'if' it will happen, its 'when' it will happen. Being careful and clean is so incredibly important with a central line. Along with worrying about how the TPN is administered, we will also need to worry about what the TPN is doing to his body. Although it does give him the nutrition he will need, it also bypasses the liver. This can result in fatty liver and liver failure. Many patients on TPN long term develop a fatty liver and may end up needing a liver transplant or will die from this complication. (Owen developed an enlarged liver during his stay in the NICU due to TPN and his liver still isn't back to normal size).
I must say that I am extremely nervous to enter this new stage of Owen's health. TPN is not completely foreign to me because Owen was on TPN in the NICU and I was told that he probably would go home on it because he just wasn't able to handle his full feeds. However, in the end, he didn't go home on it and we were blessed with a baby who was able to grow and continue his feedings through his NG/Mic-key tubes. So, to have it re-introduced to us is extremely crazy.
With TPN we will have to have a place in the house which stays sterile. Owen will, most likely, get TPN 3 nights a week. So, the good news, he will not have to be hooked up to TPN all day and all night. However, the central line will be in place at all times.
Central Lines
The doctors have told me that there are two types of central lines they are considering. 1. Broviac 2. Port
1. Broviac: Broviacs are placed directly into a central vein, usually in the neck, upper chest or groin. The catheter proceeds to a position just above the heart. In general, a broviac is tunneled under the
skin and brought out on the chest or thigh away from the site where it enters the vein. Theoretically, this prevents bacteria from gaining access to the central portion of the catheter. Finally, broviacs contain a "cuff" which is buried under the skin. Your child's tissues will grow into this "cuff" and allow the catheter to become more stable, which will reduce the chance of it becoming pulled out. Complications: infection, movement that takes the catheter out of the proper position, and damage to the catheter.
Owen had a broviac while in the NICU and it worked very well. However, because of this central line and the fact that it was in his thigh, he never had a real bath. Broviacs are not allowed to get wet. Because a broviac comes out of the skin and is yet another tube coming out, I am worried that Owen (and Isaiah) may pull on it repeatedly. It is a chore to keep them from pulling on his mic-key tube.
2. Port: a small medical appliance that is installed beneath the skin. The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patients hands free. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick". Complications: infection, blood clot developing in the device, mechanical failure (the device could brake), child's body growth could move it away from the appropriate place needed to work.
The port would have a less risk of infection, however, a worse result if it does get infected. Also, the port needs to be accessed with a needle each time you need to use it. This would have to be done by heath or I which we are not sure we are comfortable with. It would allow Owen to possibly be free from tubes/lines on days/nights he does not need to be hooked up. Would require less maintenance on a regular, day to day, basis.
There are many things to think about. Please pray Heath and I make the right decisions for Owen and his situation. Pray that Owen makes it through all these changes ok. If they decide he does need to be on TPN, both of these central lines will need to be surgically implanted which means anesthesia and recovery. Recovery has been a big hurdle for Owen and his gut motility in the past so we pray he comes through everything with his body working correctly so he doesn't have to be in the hospital for a long period of time.
