Virus defeated

So my computer virus issue is finally resolved, so i can add updates again. Allison is working on getting on a better schedule. Its been HARD, as she was going to bed at like 5am.
I have been cleaning the house getting ready to move at the beginning of the year. Shampooing the carpets and scrubbing the walls were some of the tedious and time consuming tasks i took on this week. Of course allison "helped".
Xander has been doing ok. At his post op appointment, we discovered he was developing granulos tissue around his gtube, so we have to burn it off with these cool little swabs that look like matchsticks. The dr put in a new tube, which was definitely an experience. It has caused less irritation, and is more comfortable for him. When we first arrived, his fever was at 105.8 and everyone was shocked.
At the cardio appointment the dr did an EKG and a few other tests. The ultrasound showed he had alot more fluid around his heart and proceeded to order an xray. When his assistant asked if it was the pre op xray and he said yes, i was floored. He told me he would be getting the surgery in december. Apparently he is putting on ok weight, but with his crazy fevers and rapid breathing tell us he is ready to get it fixed as he just doesnt have the strength anymore. The appointment has been made for dec 30th, and we have to be at the hospital on the 29th for an NPO order. We will yet again be staying at the ronald mcdonald house. The surgery is at rady childrens hospital in san diego and they expect him being in the hospital about 10 days, and his chest will not be fully healed until a few months post op. I look forward to seeing the difference in my little guy.
Andrew is on leave that he got for reupping. He got 21days of leave that end on the 24th. After that he is on holiday leave, and that directly leads into xanders hospital time. So he will have 39 days of consecutive leave and then we will be out of here pretty soon after that. We all look forward to miramar. Closer to family and the hospital, and better weather.

6 hours of driving to go to a dr?

X was at 9 lbs 2 oz after drinking a bottle, so the kid is still not putting on weight. I have an appointment at 8 30am in san diego, so i am about to head out to drive x and i out there, it is 4 30am now. I dont see how there is no one here that can save me from having to drive 3 hours one way for a hearing test and an ENT appointment. X ran another 102 fever today, and instead of calling the dr, i just gave him some tylenol and waited to see if it would come back, and it never did.

Sickies

X apparently lost weight between his nicu stay and the first peds appointment. He is now back to 9 lbs which is good. He had his peds appt last week, and got 3 shots and the rotavirus drops. He took them well, but puked up the drops. Yesterday x ran a fever of 102.2, and was irritable, but is doing just fine now. A has a cold, as do i , we had a humidifier party all day today. Allison is such a riot, constantly keeping me on my toes.

Meet the Dr.

Met X's pediatrician. I like him for peds but i think i am going to find another dr for cardiology since he wants to leave it all up to balboa instead of adjusting his meds. Hit a tree on the way to the appt, ill never live this one down. X was choking on his own vomit, and instead of hitting the breaks, i turned around to see if he was ok. Oah and i neglected to wake andrew up for work this morning. I am so tired all the time, its just taking a bit more time to get all these wake ups down. I wake up every three hours for 45 mins to an hour, so i only get 2 hour blocks of sleep starting at around 3 am.

Make it stop!!!!!!!

The insanity that is :)
Went to a WIC appointment from hell with an overtired toddler and a colicy (sp?) infant. Two hours after my appointment time, i was freed from that torture chamber.
Xander weighs 8lbs 14oz, holy moses, the milk shakes must be working. Allison weighs 28 lbs, poor thing is a beanpole.
Went to walmart with my dearest miranda, and she darn near did the whole wic thing for me. Checkout must have taken a good 30 mins. After all this, i ask myself, "self, is this really worth it?" Answer is still unknown.
not sleeping like i should, hell, im running on empty 24/7. Which just might be why you might sense a touch of insanity in my "tone", hee hee.
I want a "nap nanny" so bad. Saw it online, i have a feeling i will be saving pennies next paycheck. It looks awesome to use for g-tube feeding.

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.

Reglan

The Reglan is making me really loopy. X woke early and had already finished 39 of his 50 ml when I got there at 11pm, and he was tired out. Andrew had been gone all day in Yuma so i was looking forward to feeding him. I ended up staying up until the 2 am feeding so we could have some time together. He refused to nurse completely, but took 30 ml of his bottle. Apparently, they are doing construction next door to his room, so he was awake for quite a bit. His blood pressure is a little low, which is a common side effect of the Captopril that they started yesterday. He has until Monday still,before they tell the surgeon to book the g-tube surgery for Thursday. In a way, i look forward to it either way, i just want my baby to come home.

So the dr put X on captopril. It is to treat his heart failure in another way.He has until Monday to improve his feeds, all the way up to 40 ml. If he doesn't, they are talking about putting in the g-tube. I am on a new medication for breastmilk production, and it is working wel.

Address

We have be asked multiple times for our address, so i figured i would post it here
The Zachary and Elizabeth Fisher house
Naval Medical Center, Building 46
34800 Bob Wilson Drive
San Diego, CA 92134-5000
Andrew Bailey, Room 4

X is doing well, he is now up to 6lbs 11oz. He nursed for a good 8 minutes today, which made my day today.Allison is having a tough day today, she has screamed alot, for no apparent reason. Xander slept through his 11pm feeding, so she just put it in the tube. I am having some serious supply issues with pumping, and its really hard on me :(