X hit 8lbs yesterday.They removed the last of the stitches since they were causing more irritation than them helping. They are putting a 2x2 gauze in between his skin and the button, since they are now thinking all the swelling and irritation are actually caused by the button itself since the cultures they took are not growing anything. What the surgeon assumed was that since he is putting on more fat is that there is no room between the button and his skin, and it is kind of pressing into his skin. He said at the check up, he will put in a larger size button, but cant do it yet, because if it comes out before scar tissue has formed, he will have to do the whole procedure all over again. At least we have no infection, as of yet.

Infection

So X ran a low grade fever last night. They immediately did blood tests and put him on antibiotics. No L.P. this time. The surgeon came in to remove the extra stitches around the button. The dr said he was glad antibiotics were started as he thinks it is infected. It is oozy and swollen around the incision site. The only stitches remaining are one on each side to keep the button from moving around too much. X still has a tiny incision under the belly button where they put in the camera, and that looks really good. This puts us back about a week probably, but what is another week?

Light at the end of our tunnel

We got a phone call this morning that we needed to hurry up and get X into DEERS and put him on our insurance if we wanted to take him home on wednesday. We were both in shock. He took to his feeds well and is back up to his full 60ml, some by mouth, some by tube. I am in love with his Mic-Key button (feeding tube), i just clip in the tube and insert his feed, then after it is all in, i just un-clip the tube and we are all done!!!! The surgeon, apparently, did not do some fundo thing where it makes it so they cannot spit up/ throw up. THis would have been nice so that we could do contiouous feedings at night. Oah well, looks like i have to wake up every three hours still :) Our social worker is setting up delivery of all the medical supplies so that they show up on a schedule to our door. We are still working on getting the breast milk fortifying formula, as it is expensive.

A just loves playing at the childcare normally, and asks to play with her "frens". Today she threw a HUGE fit today and took quite a bit of distraction to settle down.

Had a wonderful time at the zoo with my mom and dave at the zoo. Allison had alot of fun. We then went to Joes crab shack for food, andrew had a few drinks. I went to the NICU to learn how to use the gtube and got back at 9:30. Andrew had passed out drunk and allison was screaming in the dark. This appears to be a really shitty night.

Yesterdays surgery went great. He was in a good bit of pain post op, and was given fentanyl. He was quite comfortable after that. He was able to get a button, luckily. Today he is being given just tylenol, and is doing well. He is already getting pedialyte. THey should start him on breastmilk later this evening. THey hope to slowly up his feeds and expect him to be on 50ml by tomorrow pm. After that we learn how to use the gtube, and get his meds adjusted well. They estimate him being home NEXT WEEK.

Surgery #1

Xander goes in for his g tube surgery this afternoon. He had bloodwork and an iv put in at 11 pm last night and poor guy took like an hour no lie. We found out about the surgery yesterday afternoon.

Lemon Drop

So i went out with my dear friend for a do over of our last visit. Went for snacks and drinks at a lovely pub in downtown. I am amazed at how energized i feel now after having some good quality me time. No new updates today on x from me. Andrew is still at the nicu for a feeding. Allison is doing ok, still horrible with the Terrible Twos. No punishment you can throw at her will even phase her. I am so ready for her to move on from this.

Ronald McDonald house

We moved into the new rmh yesterday. It is nice, like a hotel. Three cooked meals a day most days. We are much further from the hospital than before, which is the pits, cant go to many feedings, but it will be monday when X gets his upper gi to make sure he is ok to get the gtube surgery later this week. He is still on antibiotics but no positive cultures have come back. When the drs stopped pushing him to take all his feeds, he gained weight instead of loosing. This is a surefire sign that his heart is working too hard and he needs the gtube.

Spinal Tap, part 2

So X had his second spinal tap, he was running a fever of 102.1 and lethargic. He continued the fever all day, and had to get his second spinal tap, this time they also swabbed him for swine flu, as ther has been some cases here at the hospital. They did not do his upper GI because he was so unwell. He took a few feeds,but was mostly tubefed so he could het some rest. PT/OT consult is hopefully tomorrow.

Mental Health Day

Andrew, A, and I went to Mission beach and relaxed most of the day. I had fun in the freezing water, snuggled allison, made a "toddler sandcastle" (big piles of sand), and found a huge hole a clam was making. Andrew and Nate dug up the clam for 45 minuites, it was VERY stuck in the sand and HUGE. Nate, and his wife and son came to the beach with us. Nate has Lymphoma and is staying at the fisher house as well. When i saw x today, i found out the nurse had not specified at ALL weather or not x finished his bottle or not all night. I am still fuming, as that is important for us and the Dr.s to know. Long day, but we also bought x bouncy seat.

Weight

Forgot to add that x is now over 7lbs now!!! This is a huge step in the right direction for him. Since he is improving he has a bit more time before we put in a g tube.
We are going to be homeless on friday if the ronald mcdonald house is full. Scary thought for us.

So, X took a few whole bottles today, we are so very proud of him!!!!!! His feeding tube was almost out, and some nurse just taped it on, halfway out, without even checking it. This sounds unimportant, but this is EXTREMELY serious, expecially with his already fluid filled lungs, as he can drown on his own feed. I was the one who noticed. The nurses gave me the hope that he could go on a walk around the nicu, and possibly even outside, only to tell me that they are afraid to take him off the monitors because of his Heart failure. He has not had a desat in weeks.