9/3/05

I'm writing from home before I go in to the hospital. Sorry there was no post yesterday, it was a hectic and long day.

Some very good changes to report: He made several attempts to suck and nurse yesterday at his feeding time! And he took a bottle of breastmilk for a short time. He had "failed" two suck tests when the speech pathologist came to see him on two separate occasions--both times when I wasn't there. Apparently, the test is some touching and feeling of his jaw and throat and mouth and then trying to get him to suck on a pacifier or a bottle nipple. They won't even give the barium swallow test until he passes the suck test. I told them 20 times "He won't take a pacifier--he will not suck one--he doesn't like them" and I told them, "He is really, really particular about the nipples on his bottles". He will only use the original nipples that came with the Enfamil ready-formula bottles they had in the hospital when he was born and some gerber ones that I bought that are a little bigger than the normal ones and which I can't find anymore, anyplace--so we have about 6 nipples that he will use. I brought some in after he "failed" the suck test the first time and they didn't use them again the second time either. I was at work both times they came in to the test. They don't ever make appointments for anything in there, we just have to hope we're there when things happen. Sometimes we know there is a two or three hour window in which things may (or may not) happen, like the doctors coming by or speech people or whomever.
The nurses are the most reliable people in the hospital.

Anyway--so yesterday they were talking about wanting to put in a GI tube--a feeding tube inserted directly into his stomach--based on these two "failed" tests. And we said no. I wanted to try myself. They told me I could but a nurse had to be present in case he aspirated (and to be sure I wasn't just saying that he was sucking when he wasn't). We waited till his next scheduled feed time so he would be hungry. I held him and put him to my breast. I had to put my nipple into his lips wchih just by itself seemed to give him a lot of comfort, but I kept talking to him and moving it around his mouth and he finally started to respond, suckign a little bit, moving his mouth around. It was like he was trying to remember how to nurse and he almost latched on but he definitely made the effort to suck several times. We put some breastmilk into a bottle with one of his nipples from home and he sucked more vigorously and swallowed about 5 ml of the milk. I think hi sthroat is still really sore from 9 days of intubation and it is hard to swallow. The nurse wrote everything in her notes. This was a great thing for him--and for me. IT was such a good feeling to see him sucking and feeding.
So, no way is he getting a tube put into his stomach.
We will try again each feeding time that I am there. He eats at 8:00 a.m., 12:00 noon, 4:00p.m., 8:00p.m., 12 midnight and then again at 4:00 a.m. I will try each day time and evening feeding.

In other news, he was moved from the PICU to the regular pediatric hall--same floor. Visitors, instead of going to the left when you get to the security table, take a right and go down the hall to the nurses station. You still have to check in with the guard. We are now in room 7-316. I don't have the phone number with me--so if you want to call the room, call the hospital and ask for the pediatric floor nurses station and then ask them for the room. I will miss our great nurses on the PICU and it will take some getting used to a new, smaller room--we have been in room 608 on the PICU for two weeks.

He is responding to us much more and knows when we're there. Jamie now has the magical ability to calm him when he cries, by somehow rubbing his forehead and temples--it works immediately and no one else can seem to do like his Daddy. He responds to other people too--my mother and my grandmother came in town yesterday and he knows the sound of my mom's voice, he calms down and stops to listen to her. He always stops crying and fussing when I hold him. You should see how peaceful and contented he looks when he is in my arms, he is just beautiful.

He still can't seem to see us, but I think he is trying to focus and doing so, more than he was. The opthamologists came in and tested his eyes and they say the eyes are fine, the pupils, cornea and "beautiful baby retina" are working as they are supposed to and responding to light and stimuli appropriately. There may be some problem with the occipital lobe that will correct itself eventually, due to the swelling and general trauma of the surgery. They are planning to do a test next week where they hook up EEG type leads to the occipital area of his head to see what the brain is doing when the stimulus comes in to the eyes. Some of the nurses seem to think he is seeing more light and shadow differential as well.

I talked to the St. Jude Children's Hospital people yesterday and they told me that I must have our doctor here call them and send all of Theo's information and x-rays, CTs, MRIs, etc. I told Dr. Dunn of the Heemonks yesterday that I wanted that done as soon as possible and she agreed. I will mention it again to whichever one of the oncologists we see next. I will make sure he gets whatever he needs. Most likely they will contact St. Jude on Tuesday, due to the holiday Monday. Either way though, he is scheduled to have the procedure to insert the catheter tubing into his artery (near the heart) on Tuesday to receive the chemo. No matter where he goes for treatment, he will have to have chemotherapy so it makes sense to go ahead and get the tubes put in. We hope he will get the under-the-skin port, which is way more convenient and easier to take care of and I think more comfortable emotionally for us and physically for him, but he may end up with the tubes that remain on the outside and which need to be flushed daily, dressings changed, etc. It just depends on what the surgeon sees when he or she gets in there. It all depends on his arteries and which kind of catheter his little body can best support.

Please continue prayers and meditations, chanting and dedications, singing, sending, focusing, loving, postive energies, to our boy and to us.

Thank you all for your continuous love and prayer and support.

I will let you know each thing that happens and I will keep you updated on the situation with St. Jude.

YAY! He's sucking!!

Love,
Karla
xoxoxo