I just want to start off by saying that I don't hate clinic. I was just so frustrated that day and needed to vent. I think Dr. Lemons talked with them though because when we went in today we were taken right back into a room as soon as we walked in the door. The staff was also really nice. I was such a different person because of this. The panic and anxiety feeling that I normally feel was hardly there. I really appreciated the extra effort they took to make me feel comfortable and I'm grateful to Dr. Lemons for doing that for me.
We had two very exciting things happen for Skyler this week. First off, Skyler finally was able to get a REAL bed! He has had a hospital bed that's made for pressure sores since he has been home, so to finally be able to sleep in a regular bed is huge. Its been 7 months since he has been able to sleep in a real bed. He was so excited. The look on his face was priceless when he saw his bed for the first time. He kept saying "This bed is the coolest, its so much better than the hospital bed!" I was so happy for him. This is one step closer to feeling "normal" again. His one reservation about getting a new bed though was that it wouldn't have railings on it. He has gotten used to having railings on his hospital beds, so to not have them scared him. I was able to find some at Target to put on the new bed so that made him feel more comfortable. The next morning after sleeping in his bed for the first time (he slept thru the night for the first time by the way) he said "Wow I really like this cool bed" That put a smile on my face.
For the second exciting thing, Skyler doesn't have a feeding tube anymore!! Yesterday for some reason his tube got clogged. I tried everything but it would not unclog. They told me to have him take the rest of his meds by mouth last night and then when we came to clinic today they would try to get in unclogged. If they couldn't he would have to go down to flouro and get a new tube placed. I knew they wouldn't be able to get it working because I had already tried everything, so I was certain he was getting a new one. Skyler struggled taking all his meds by mouth last night, but eventually he got them all down and didn't throw them up. He has a lot of them so I was really proud of him. Today when I told him that we had to go down to get a new tube he got really upset. Of all the hard things he has to do, this one tops this list of the scariest. He hates having the tape ripped off his face and also hates the tube going down his nose. After a couple minutes he calmed down and said he had the "bestest" idea. He told me that he promised that he would take every med by mouth everyday so they wouldn't have to put the tube in. Normally I would have said no, but he was really excited about it and said he would be so proud of himself for doing it. Since he has also been eating really well these last couple of weeks I'm not too concerned about him not being on feeds so I decided we could give it a shot. We will try no tube at all this weekend and see how it goes. We go back on Tuesday for more chemo so we will decide then whether or not he can keep it out. I really hope he does well taking his meds my mouth and that he doesn't lose weight. It would be amazing if he could keep this out for good. It has also been 7 months since he hasn't had a feeding tube. This is also another big step for him to feel more normal. He actually said that to me today after I pulled it out. "I feel so normal now" It was really cute and kind of sad at the same time. He was so proud of himself today and so was the PA, nurses and especially momma. They even gave him a shirt that says I'm Tubeless. Way to go Skyler!
Skyler has done well with this new phase so far. I know its only been a couple of days, but so far he has only been nauseous and has had red cheeks. For the first two days his cheeks were bright red and warm so I for sure thought we would end up in the ER with a fever, but so far so good. He did receive his PEG shots today though and those usually make him really nauseous so we will see how he does.
Now for some sad news. Heaven got a new angel last night. Kim, one of the girls in our little cancer community passed away from relapsed AML Leukemia. Even though I didn't know her personally, I could tell from just reading her blog how amazing she was. My heart aches for her family. Please pray for them. Even though I know she is in a better place now free from pain, its still hard to take in.
Skyler's new bed!