Home again.

Tucker came home yesterday and we haven't stopped since. Between picking up new prescriptions and Christmas, there hasn't been many free moments.

Tuckers cardiologist has added a new drug to his regimen that works with the Lasix to help keep the fluid out of his lungs, let's hope that this keeps us out of the hospital now. He is still retracting when he feeds, but Its better than it was.

We have also run into quite the roadblock for Tuckers special formula. Our insurance company has approved the Nutramigen, however the Polycose additive still hasn't been approved. I was on the phone all day trying to obtain the right approval, wish me luck again for tomorrow!

Tuckers vaccinations are tomorrow....more to come....

Day 2 at Childrens

We had the greatest RN named Michelle last night. (Must be the name). She took Tucker out to feed him and let me sleep all night. (very much needed). Tucker was lucky enough to be the first patient for MD rounds today. Good thing I showered early! The team told me that Tucker was doing well on the double dose of Lasix from the day before and that we were going to continue that for today and then taper him down to a double dose in the morning and at night. Let's hope that this fixes his struggle to eat. So far today, it hasn't gotten much better. He took less than an ounce and fell asleep and got all sweaty as well. He has a long road ahead of him for us to get discharged before Christmas. Sometimes random things happen so you can put your own life into perspective. The last 2 times we were on 8 east we saw what appears to be a healthy boy walking the unit all day into the night always accompanied by a RN. Today I saw him and spoke to him, "hi, i remember you from before...looking like you'll need new sneakers soon.". We both laughed and he continued to walk another lap around the floor. Later on I mentioned how sad it is to come to the floor and see the same folks from when we were here in October, I mentioned the boy and she told me that he has been on the floor for a long time, he is waiting for a heart. I completely believe that is what I needed to hear as I was feeling selfish that we might be here for Christmas. Not feeling that anymore.

Retracting again!

Last night at Tucker's 3am feed, he started flaring his nostrils and retracting when he fed. I waited until his next feed in the morning and there was no change so I called his cardiologist. He told me to give him an extra dose of Lasix, that he could have just had some extra fluid, and that he would be calling me back in the afternoon to check on his status. His VNA RN Bonnie was going to be coming out for his weekly visit. She noticed that he was retracting as well so she had to report it to the cardiologist. We called The cardiologist and he told me to drive right to Children's ER. We were in the emergency room from 3-10pm. X-rays an EKG and a failed attempt at an IV line. We finally got assigned a room on 8 east Tucker ate 70 ml and is still retracting, now we are going to bed. More to come in the morning.

Tucker Update.

Went to the cardiologist yesterday, another EKG and Echocardiogram, the stints are still where they should be. However, Tucker hasn't gained much weight since he left the hospital less than 2 weeks ago. He lost quite a bit while he was there so they are increasing his formula to 26 calories and adding Polycose Powder as well. He needs to put on as much weight as possible before his open heart surgery. If he doesn't gain a significant amount of weight over the next two weeks he will have to get an NG tube.

I was concerned that his O2 numbers have been creeping a little down, apparently when a baby sleeps his HR goes down, and so do his stats. So no more testing Tucker while he sleeps.

Dr. Porras said to plan for his Glenn Procedure to be sometime in the middle to the end of February.

A friend asked me what I needed the other day, my response: "a hotel room for a night with no TV, Internet or Phone so I can get some much needed sleep. ". Her response: "Just one night?". Me: "Yup, anything more and I wouldn't come home!". It might be time to call in some backup to give Gary and I a little break, these last few months have been a roller coaster of emotions.

On another note, Spencer had a good day at school today but had a difficult time taking his medicine tonight. He has an ear infection, i swear, its always a battle somewhere.

Here we go again.

Last Tuesday night, after feeding Tucker he coughed 3 times. It was a strained cough, and it sounded like it hurt him to cough. I thought about it and choose not to call his VNA RN because it was so late, and he had an appointment with his PCP first thing in the morning.

That night he slept for six hours straight, I was a little alarmed as he was not taking much by mouth, so off to the pediatrician we went. We were seen right away and our MD took a lot of time with him, we checked his O2 level and it was in the low 80's not as high as usual, but when I was there Tucker started to fuss and I fed him a little and he started to retract. (working extra hard to breathe). His nostrils started to flare so his PCP called his cardiologist Dr. Porras. He told me to go directly to the Emergency room at Children's Hospital. We arrived at 11am, and we were taken into the triage area for just a moment and wisked away within moments to a trama room.

They tried several times to obtain an IV line (8 to be exact) without success. So they placed an NG tube and gave him hydration. It wasn't long that we were shipped off to X-ray. Sadly there was fluid in his lungs, so we were admitted. After 6 hours in the ER, we were given a room on the pediatric cardiology floor (8 east). Pam packed my stuff and Kevin brought it to Gary at work, so I could have some clean clothes at the hospital.

Over the next few days Tucker was seen by many MD's and it was determined that they could not tell if he was fighting a cold or if his fluid was built up in his chest from discontinuing his Lasix. So he was restarted on it while in the hospital. During his stay they didnt have his formula in the hospital so it was the perfect time to switch it since the Pediatritian was suspecting a milk allergy, so he was switched to Nutramigen.

On Friday Gary came into Boston and let me go home to spend time with Spencer and so I got to sleep in our bed. The bed at the hospital is terrible! It's actually a plastic fold out pad. They should print an add for a chiropractor right on it.

Saturday morning I brought Spencer into Childrens to see Tucker. He was so happy to see him. Around noon we got the word that Tucker was doing fine and that we would be discharged shortly. Yay...Finally!

Saturday night there was a mix up giving Tucker his new medication doses, I gave him five times the amount that I should have given him of his Plavix. I panicked and called 8 east while I started packing an overnight bag. The NP had the cardiologist on call return my call. After consulting with the pharmacy they told me that the overdose would be ok. Whew...I have learned a valuable lesson here!

So Tucker is now home resting and getting a little bit better everyday. We have an appointment for Tuckers second dose of Cynergist on Thursday.