Another Infection

We really need to get ourselves out of hospital. Noah has picked up yet another infection. On tuesday he started spiking fevers again. Another blood culture was drawn and he now has a different bacteria in his blood called pseudomonous. No one knows exactly how he picked up this one, but unfortunately the hospital just has too many bugs floating around. So he is on four different IV antibiotics now, but has still been spiking fevers. He will need at least 2 more weeks of IV antibiotics before he can come home. We may have to put in another central line because the antibiotics are so hard on his tiny veins and Noah keeps losing his IVs almost daily.
Feeding is going well though despite all the infections and Noah is still gaining! The GJ tube seems to be the answer we've been looking for and he's made it over the 10lb mark!!! So things are moving in the right direction.

Central Line Infection

Noah has had a setback. We were hoping to be home by now, but on Friday Noah spiked a fever. He was very sick friday and saturday. His blood cultures came back positive, showing a staph infection in his blood from his central line, as well as a bladder infection. The doctor pulled out his central line on Saturday evening once his final TPN was done and he was started on IV antibiotics. Yesterday he spiked a fever again, so they have changed his antibiotics and he had a good night last night. Needless to say, no more passes for us, so we are once again stuck at the hospital. He will need at least 10 more days of IV antibiotics in hospital.

Hospital Week 7

We are still in hospital but Noah is doing really well and we hope to be home soon. We still get passes each day but it is so difficult to go back at night and sleep at the hospital. Noah is up to 24cc/hr for his feeds, so in the next couple of days we should get up to full feeds!! Not much refluxing either which is great. His TPN is slowly being tapered off, but right now he is still getting lots of extra calories from it, so his weight gain has been excellent! He is 9lbs 10oz now! We praise God that the GJ-tube is working!!

Hospital Week 6

Yes, yet another hospital post! We are still here, but we are now able to be home from 1-9pm each day. It is so wonderful to be able to come home and spend time with the family. Kailyn & Joshua are quite thrilled about this. It makes our time at the hospital much more bearable. Noah is doing quite well. We had to increase his TPN calories again because he wasn't gaining weight. So now with all the extra calories on board, he is porking out again at a whopping 9lbs 3oz!!! We are at 20ml/hr with his feeds, although we have had lots of refluxing today. Looks like it will be another week or two before we are out of there completely.

Noah is full of energy and joy and he is looking so good. His smiles and giggles have won the hearts of many at the hospital. It seems that many of our health care providers have come across this blog in their search for information on 12q deletion. It has been neat to share more of Noah with these people who have become like family over the past weeks. I've posted a few pictures of our hospital days, including Noah in his halloween bumblebee costume. He was the cutest patient! (Okay, so perhaps I'm a bit biased!)

Hospital Week 5

Noah is doing very well and things are going better this time around with the gj tube. We are up to about 15cc/hr with his feeds, and the TPN is slowly being decreased. He now only has to be on 18hrs of TPN, so we have 6 hours off each day where we can leave the hospital. It's wonderful to be able to get home, even if it is just for the evening!! Noah is still refluxing a bit, so we are increasing his feeds very very slowly. It will likely take close to another 2 weeks to get him completely off the TPN and on to his full feeds (25cc/hr) and out of the hospital. The bile is once again backing up into his stomach, but the new stomach tube we have is keeping it drained better. We are also hooking him up to the Gomco (low suction) at night so that his stomach is constantly being sucked clean. Thank you to all of you for the prayers, meals, cards, babysitting and goodies! We really appreciate all of the help!!