26-6-2008 - Week 5

My mood while writing this blog: Ok

3 May

So they took the cat out and said they will take they will take the IV out when they get blood before we go outpatient. They even had trouble taking the blood from the IV later in the night when we begged them to because it seemed to hurt Trystian to move that leg and foot now. They got the blood but refused to take the IV out still. Another night of vitals. Paperwork was being done for us to leave.

2 May

We were happy to hear that the results were in. We were told that there was no UPJ and that the reflux was just there, no other reason. Trystian has to be on antibiotics daily to be sure he doenst get a UTI or other infection. Also he will need to be seen biannually by a Ped Urologist and Nephrologist-kidney doc. He will need constant watch on his kidneys with an ultrasound every 3 months and a VCUG yearly. This beeing said, we have to be enrolled in the EFMP program. This also means unfortunatley we wont be staying at Yokota more than likely.

1 May

Mag 3 Scan day. Early monring Trystian was taken to see the anestesiologist to get an IV. He gave us the option to sedate Trystian now or to let them try once. If they couldnt get the IV done after the first try then they were going to have to sedate him anyways. We were told to leave the room so that they could do the sedation, IV and catheter in place again. After it was done Trystian was in the recovery room being monitored and when he woke up it was horrible!!!!!! he woke up and was screaming!!! there was absolutly nothing I could do to calm him down. He was kicking and screaming and just all around mad!! his cry sounded like he was in pain. I so wanted not to be there in a way. It was so painful to watch and listen. He quieted down 2 hours later when he cried himself to sleep. The Mag 3 scan was started. an hour and half later after it was done, we headed back up to the Ped ward and they stopped his IV but didnt take it out. They also kept the cat in. It's so hard seeing your baby hooked up and taped up! It's also hard cuz you really dont know how to hold them to comfort them, and what to do... We had another night of vitals every 2 hours!

30 April

They let us rest a bit today for they need one more day of rest before they want to do the Mag 3 scan. Oh and did I mention that the Cat came out like 4 hours after they put it in. I knew it wouldnt stay in...

29 April

The ultrasound was today. I let the Peds and urologists take him and do it without me. I've been up every 2 hours with him and really got NO sleep, so for Trystians sake I let him go with the docs so that I could get some sleep so that I could take care of him better. Again the docs in every 2 hours after he came back from the ultrasound tho.

28 April

Today they let us rest a little bit. The Ped urologist came in and talked to us on what she thought. She said that the VCUG at Yokota showed them that there were not valves!! so no surgery on that!!! She did say that there might be a UPJ or blockage somewhere that could require surgery. She explained the Reflux that he has and the Hydronephrosis. He has grade 5 reflux in the right kidney and grade 4 reflux in the left kidney. Reflux is just that when he pees it doenst all go out the pee pee hole, some of it travels back up to the kidney. His reflux is extreme and there is surgery to fix it, but she said that it can usually go away on it's own in years. In the meantime tho, they were going to do an ultrasound and a Mag 3 scan to see the functionality of the kidneys.

27 April

We packed and packed and headed in at 1300. We got orders and were escorted to the pax terminal where we sat and waited to get on the plane. It's a C-17 so it was going to be a very long trip!!! very uncomfy!!! not to mention flying with a baby.

We got to Hawaii earlier in the day of the 27th then we had left. Gotta love time changes. We did as we were instructed... we got our billiting and then grabbed a taxi to the Tripler Hospital. We got to the ER and signed in. There was a full waiting room. We took our seats, and as soon as we took our seats we were called back into the room. Everyone gave us the dirtiest looks!!! We got back and weighed and looked at. We explained that we were to be seen by the Ped Urologist and the ER staff seemed not to know what to do. They left and did some searching and came back to escort us to the Ped Ward where we were to be admitted. We met the doc of the ward and were told they wanted bloodwork done. I went with Trystian into the room they do the bloodwork and they stuck him 3 times. No veins gave blood. We went back to our room so that they could find someone else to try. We were back and forth all day for 15 hours getting pricked to get blood. He was black and blue from head to toe!! They finally got his blood tho. Tony and I were told that only 1 parent can stay in the room during the night and that one of us had to go back to the hotel. They also gave Trystian a catheder that night. We tried to get some sleep but the docs were in every 2 hours getting vitals.