WHAT A FEW WEEKS :-)

Sorry, sometimes it takes me awhile to sit down and write the update. This one is particularly hard, so it took longer than I thought!

For a few weeks, end of April and through mid-day, it felt like we were making “little” progress….but it was progress. Zachary still wasn’t gaining weight, but he was maintaining weight. His body was continuing to handle the more dense calorie packed formula. This was great; since Zachary really has a problem with volume this was allowing him to get more calories in with still the same volume. He was getting (though his g-tube) around 600ml which was (900 calories) with his central line (TPN) he was getting another 400 calories and 450 in volume! We were finally reaching our goal of actually getting in his body the volume that we needed. It really didn’t matter to Adam and I that it was through a central line and his g-tube …he was getting it in and maintaining his weight  We had worked out a wonderful plan with his GI specialist and nutritionist to slowly (since everything takes A LONG TIME) increase the volume from 30ml an hour to two more the next week, and so on! We had it figured out that IF his body could handle that we would get the central line and dependency on TPN finished by September! Things were finally at a steady and we were able to breathe, a little!

Then, May 27th started a new part of the rollercoaster. Zachary spiked a very high fever and the doctors wanted us to draw blood and get cultures from his lines. Which we did and watched his fever. The next day the fever got worse and he wasn’t tolerating any of his feeds, he was throwing them up! By 10pm that Thursday night his fever was 105.3, so we took him to Walnut Creek Kaiser. They decided to admit him because he had pneumonia, a possible line infection, and was started to get dehydrated. OH WHAT FUN! Zachary continued to have the high fever and bad cough for six days. The doctors were concerned that it was a viral infection, and his body would have to fight it on its own. We were able to rule out that it wasn’t a line infection and then we were waiting to see what happened. That Wednesday morning June 2nd his fever was down and things were looking better ---ha ha ha. I was getting ready to run home shower and check in on my class when I noticed that Zachary had a mass on his neck. It was huge! I called in the nurses and I felt like I was in an episode of Grey’s Anatomy. There were labs being drawn, pressure apply, the transport team was called, it was crazy. Once things settled down for a bit, it was clear that Zachary’s line had “slipped” and what was suppose to be going in through his veins was actually going into the tissue in his neck.

So, we were transported to Santa Clara Kaiser ICU to assess the situation further. His swelling went down and he became more comfortable. The only problem was that his surgeon was out of town in Africa, and the other “on-call” doctors didn’t want to touch him. The intern was able to remove the busted line, and he was so excited. He looked up at Adam and I and said, “Yeah, no tubes. All done tubes. No more.” I burst into tears. The plan at that point was to keep him hydrated through and IV and try to resume his g-tube feeds and see if he could tolerate them. He was able to tolerate his feeds and his hydration was improving. He was feeling fine and going NUTS being in the hospital again. We decided that we could keep him hydrated enough until his surgeon returned on Monday, and we would follow up with our home doctor. We went home on Friday the 4th. Zachary was thrilled to be home “tubeless!” He played with his brothers, didn’t have to stay inside while they were outside, he went on errands with us. Come to find out that his surgeon wouldn’t be back until the following Monday, so we had to try and keep him hydrated at home. It was a great week. He was able to stay hydrated, but the nutrition was dropping. We knew though that he was getting smaller and weaker. On Friday the 11th we went in to his pediatrician and realized that he lost over four pounds in one week, and we needed to head to Santa Clara….oh and by the way…..his surgeon was back today!

I rushed in the car and waiting all day to see his surgeon. Zach was hooked up to another IV (four pokes to get it in) and we waited. Finally, after seeing TONS of doctors, specialists, and his surgeon we had an answer, “NO MORE SURGICALLY PLACED CENTRAL LINES!” The news was upsetting, but also I was pleased for an honest answer. The basic reasoning was that he keeps going through lines, and once they are placed surgically in a deeper vein we lose access to that vein. And, his stomach should work (DUH!! IT SHOULD WORK, BUT IT DOESN’T) and that we are only doing short term solutions for a long term problem. So, we went back and forth with ideas and discussions. Adam and I made it very clear to the doctors that he was not going to LIVE in the hospital, so with that in mind we all made an agreement. He would have a PICC line placed (he had two before) they are a type of central line, but you don’t lose veins each time you use one. Then we would go home and resume or normal plan that we had set up in April/May with his regular GI doctor. We have no problem staying in the hospital if he NEEDS to be there, but staying there to work on his feeds (which we have been working on since day one) in the hospital when we can do it at home was insane.

I just can’t express my frustration that I had through those three days. It seemed that all of a sudden it he was a critical child that had to be fixed at that moment. The ideas and suggestions that the doctors made were nothing new, but the same procedures/tubes/feeding ideas that we have done his whole life. More than anything I was appalled that one doctor told me that we would just have to start over, and try everything again----we were pissed. Zachary is not a guinea pig, a pin cushion, or a case study! He is our child and he will not be put through everything again, when it didn’t work the first time. Once the “on call and floor doctors” decided to look through is extensive file, they agreed that we should get the PICC line and continue with our regular plan. The only frustration that I have now is, what if the PICC fails, clogs or gets infected?? How many PICC lines will they put in and will we have to argue again! I know that if I am beyond sick of Kaiser, than Zachary must be a million times more sick of it than me 

All in all---it was one heck of a month! We are home and he has his PICC line getting his TPN nightly, and his regular g-tube feeds. Which he is already up to 35ml an hour  Slow but steady improvement. I will keep everyone posted.