Wednesday 12 May Kyle Update... Lots of good news!

Today has been spent slowly disconnecting Kyle from the myriad of tubes and wires he is connected to. The most obvious is his face...
This is him yesterday and then tonight...

No oxygen up his nose and the O2 sensor on his forehead is gone. You can also in these two photos see the difference of before and after morphine. The bottom picture his eyes still have a slight hysterical tinge to them because of the pain before the morphine completely takes hold. Today he also lost his catheter that collects urine and the thermometer probe that he probably doesn't want me to announce where it has been this week. He lost his arterial line in his left wrist and the nurse is while I'm typing taking him off of his IV nutrients drip... he will be wholly fed on breast milk. As you can see there is no new NG tube. The goal is to get him to eat enough nursing and using a bottle so he doesn't need to use it.

Now for the best news ever... I GOT TO HOLD HIM TODAY AND NURSE HIM!!!! Life didn't get much better. I was allowed to nurse him for 10 minute increments. The tricky part was to wait until he was enough off the morphine to be able to latch on effectively with the desire to eat while not waiting so long that it had completely worn off and he was too hysterical to eat. I ended up holding him once for 2 hours before he was able to get his 10 minutes in. He is going longer between needing the pain reliever shots... from 2-3 hours last night to every 4 hours this morning and down to 6 hours between this evening.

Tomorrow he will get his chest drainage tubes removed and I'm pretty sure the line that goes in his neck, into his vein and has a sensor sitting on top of his heart. He will still have the IV line in his left hand and in his right foot and I'm not sure if they will be removing the pacing wires that hook up to his heart yet or not. They were put in place in case there were complications and his heart didn't beat correctly so he could be quickly hooked up to a pace maker. He has had no indication of any problems so they will come out soon, just not sure if tomorrow will be the day. After he gets these removed it will be much easier for me to hold him, right now it takes three people to get him situated on my lap and then I'm stuck like that until the nurse can come back in to help him back on his bed. I didn't mind though, I held him for at least 6 hours today. I was so sore when he finally went to bed that I went out to the parking garage and walked up and down the stairs several times to get the cramps out of my legs from being so still all day.

His lungs continue to be clear. He is taking his heart medicine via mouth instead of IV. Tomorrow will be another big day with lots of new changes. I'm so proud of him and how hard he is working.

We still have not heard back from AHCCCS. Please include this in your prayers for him that his insurance will go through with no more setbacks.

Another fun program the PICU participates in is "Beads of Courage". Every time Kyle has some sort of procedure done he gets a special bead that represents that. Like he has a bead with a big red heart that indicates heart surgery. He gets a yellow bead for each day he spends in the hospital (we have several of those). He got a "MOM" bead for spending Mothers Day in the hospital. He has an anchor to indicate the support of his family. He gets a rainbow bead each day that respiratory therapists come. It is a really neat physical reminder of the memories of his stay. He also gets a bead every time he gets a tube removed so tomorrow we should get several of those. Another one I like is a bead for each blood transfusion he got, that is how I found out he had three transfusions while in the OR.

I am much happier down in the PICU. Even though technically there is less privacy since one wall is a window for the nurses to see through, it feels more private because we have more personal space to move around it. I also have access to the water and ice and fridge and supplies that I had to ask the other nurses every time I needed a drink of water. I also love that we are no longer in a small space with other sick kids. This whole "pod" is just for cardiac patients. There is also a large shower bathroom with a counter and a washer and drier so Kevin no longer has to cart my laundry back and forth.

We have now been here 2 weeks. We came into the ER two weeks ago on Wednesday the 28th of April. Kyle is now 7 1/2 months old! His weight has stabilized, he actually gained a bit after surgery with all the fluids he took in and is now about 11 lbs 2 oz. He'll get weighed again tonight, after his bath. He is a healthy pink color and he turns bright red when he cries... both good things! His throat feels better today. He's talked to me a couple of times. I even got a half of a smile from him today. I am excited because every day we are getting closer to the day we get to go home. His healing has been so swift it is amazing. Tomorrow will be a big telling of how he eats. He's proven that he can hold down food and that he can nurse (oh, and he no longer sweats... even a little... while nursing. I was so happy!) Now he just needs to prove that he can eat regularly enough to continue gaining weight.

Visitors are still welcome. There is a great family waiting area we can go into. The rule is only 2 people in his room at a time but I have yet to see another family actually obey that rule. I think it is only enforced if they are being disruptive or the patient is troubled.