Isaac is still being his smiley self, even though he's probably been accessed a dozen times on his port-a-cath.
The Doctor wants so many labs done due to his dehydration issues lately and the tendency to go critically low on his Potassium levels. Even on a very high dose of Potassium, his levels have been low. The port has been such a blessing since he's had it (3 years now). It's a device underneath his skin on his chest that's used for lab draws or IV medication. Normally chemo patients have it, but many kids with chronic health issues have it too. Isaac was a good candidate for it since he spent so much time in the hospital his first year of life. We apply lidocane (numbing cream) to the area before the nurse comes out to access it. Before we know it it's over! No veins, no pain, no suffering! The good news is that I just got the final results for Isaac's C.diff and it's negative! YAY! Thank goodness!Today is the big brown dog's 6th birthday. On Friday I have to take her into the vet for X-rays because she's been limping a lot and acting like she's in pain. Poor girl! Hopefully everything is OK:(
Happy Birthday Brownie!
Since coming home from the hospital, Isaac has been struggling with the C.diff he got from the IV antibiotics. He was also sent home on a load of oral antibiotics to make sure that we killed the tracheal infection, which I'm pretty sure didn't help. Luckily he's done taking those.Last Monday Isaac was appearing dehydrated and lethargic to me. I can deal with the respiratory stuff and it doesn't phase me that much anymore, but this scared me. I thought I was going to have to take him back to the hospital. I called one of the clinical supervisors from the nursing agency and she came out to do skin pinch test. His skin was discolored for 7 seconds, which meant he was very dehydrated. Since then we've been giving him more water and pedialite to hydrate him and he looks WAY better. 
I'm adding a couple of good probitotics to hopefully give him some good gut flora. He had this 2 years ago and I thought it would never end, but it did eventually. Hopefully the GI doc has some good suggestions too when I call tomorrow.
Isaac came home yesterday afternoon. He was on room air at 96 percent when we left the hospital, which is a major improvement from when he was admitted last week! He's pulling all kinds of tricks for the nurses since he came home, such as decannulating himself and not sleeping because his schedule is all messed up. He's being a rascal by rolling around and wrapping himself up in his tubes. Little turkey! So glad to have him home so that now we can be back to our crazy normal!Please pray for this family who lost their precious Caleb recently. His blog and sweet face touched my heart in many ways. Life is fragile, embrace each and every moment.
Well today I had Isaac's room all ready to go, the nurse was on her way, and then the hospital called. They said that his lab work isn't good and is showing that he's dehydrated from losing lots of fluid due to the C.diff. When I went to see him last night he was in a good mood and looked like he had good color. He still had a low grade fever though, which is a mystery. From a breathing standpoint he's doing fantastic. I don't think they could possibly give him any more antibiotics at this point, so as soon as they resolve the dehydration issue he's coming home!It's been a rough week. Big sister has been struggling with Gastrointestinal issues lately. She missed 2 days of school and I had to take her into the Dr. twice to figure out what was going on! You can imagine my stress level trying to balance taking care of that and also feeling like I'm neglecting Isaac while he's up at the hospital. We finally got the issue somewhat resolved with her and she should be feeling much better soon! Yesterday was one of those survival days where I just had to pray that I had the strength to carry on. A Mama can only deal with so much!
Next weekend I'm looking forward to dating my husband for an entire weekend! A much needed break for us. Our anniversary is on Valentines Day....13 years.
Don't ask me why I took a picture of the hospital hallway. I thought it was strange too, but then I thought I would blog about it.
Long, long ago I remember walking down this hallway with my daughter and looking up at the ceiling with wonder. She would jumped up and down with delight and run up and down it. She would try to grab the butterflies. I was amazed at the beautiful colors. It was a happy place!
Then Isaac spent 4 months in the NICU and we walked down this hall at least 365 thousand times (at least it seemed like it).
When we thought we were done walking the hall, he was admitted to the hospital several times.
I cried here, I prayed here, I made very hard phone calls here. I remember putting up a wall here to prepare myself for a very difficult care conference.
Still, it's a place of solace. A place where I can catch my breath before my next endeavor. It's a safe place where I'm not conversing with Doctors and I can just be an ordinary person walking a hall for just a moment.
Now when I see someone walk down it with delight I begin to snicker at them. I want to roll my eyes. I begin to feel somewhat resentful that they don't walk down this hall like I do with a ton of bricks weighing them down. I wonder if they would appreciate it as much if they had walked down it as many times as I have. It's a feeling I don't like to have, but it's real.
It's hard walking many of the halls in the hospital. Each one brings me back to memory lane where we began the journey.
Then I turn down the other hall and see some familiar smiling faces who welcome us and get excited at how big little man is getting. They know me as Isaac's Mama. I see people who have made it possible for him to be here 4 years. I don't want to be here, but somehow there is comfort in the familiar faces who have been through the ups and downs of this hospital life with us.
It's bittersweet.
Lately it's been easier to post updates on facebook, but I know that some still like to be updated on the blog. I thought I would share what's going on with the boy. 
Yesterday Isaac looked pretty good, except he had TONS of snot coming out of his nose (with the bi pap on) in the evening. His poor little face is really chapped. His 02 requirements were good when I was there until he fell asleep and then I had to get the RT to adjust the settings. The Pulmonologist suggesting adjusting the pressure settings to see if that would help. So far he's testing negative for viruses such as RSV, but grew out Serratia in the trach culture. He's being treated with tobramycin nebs and IV antibiotics. The intensivist called and said that he would be done with IV by Wednesday and would possibly come home then. It's been rather difficult because I'm touching base with a Pulmonolgist who isn't familiar with him and has ideas with the bi pap and his co2 levels that I don't totally agree with. Luckily we have an appointment soon with his main Pulm to discuss those things further. In the meantime, little miss has some kind of virus and is achy all over so she's home from school today. I'm feeling torn between seeing Isaac and taking care of my girl. I should be able to go up later tonight though after hubster gets home. As Isaac gets older and more aware, I've noticed it's MUCH MUCH harder for me to leave him or not be there with him. I know he feels more stressed when he's not with his peeps and it makes me feel anxious not being there. We have been doing this cool thing called "facetime" so that Autumn can talk to her brother and see him at the same time. It was so neat to see him smile when she sang to him and he was waving "Hi" to her. Modern technology is really amazing!
As many know through facebook, little man was admitted to the hospital today. Yesterday he had a high heart rate and was coughing yellow junk. Then last night he had a really hard time with his oxygen needs and a fever. This morning I called the Pulmonologists office and they finally have a new Dr. who got us in today at 10. After a chest xray etc. she suggested an admit. It appears that he probably has an infection. The good news is that it was a direct admit, which means that we didn't have to spend any time in the ER. (I would rather get my teeth pulled out). Sister is sad because they have a rule that kids under 18 are not allowed to visit during cold and flu season. Hopefully it won't be long before she can snuggle with him again.
The Doctor wants so many labs done due to his dehydration issues lately and the tendency to go critically low on his Potassium levels. Even on a very high dose of Potassium, his levels have been low. The port has been such a blessing since he's had it (3 years now). It's a device underneath his skin on his chest that's used for lab draws or IV medication. Normally chemo patients have it, but many kids with chronic health issues have it too. Isaac was a good candidate for it since he spent so much time in the hospital his first year of life. We apply lidocane (numbing cream) to the area before the nurse comes out to access it. Before we know it it's over! No veins, no pain, no suffering! The good news is that I just got the final results for Isaac's C.diff and it's negative! YAY! Thank goodness!
