Fourth of July (Saturday)

Kade totally rocked the MRI!! He was such a good boy by lying still and keeping good stats during the whole process. I was able to sit in the room during the MRI. The neurological radiologist is on today, so we may have the results later this
afternoon.


**Saturday Night**

Results of the MRI showed some abnormalities in areas of the brain that control fine motor skills. These abnormalities are the result of a couple mini strokes suffered in the begining of this whole ordeal. There is no way to tell at this point how it may or may not affect Kade in the future. We are encouraged since he is so young, and his brain still has a lot of developing to do that this can be overcome. The neurology team will be doing more assesment test this week to determine more details from the MRI scan.

Hope everyone is enjoying the holiday. The view from Kade's room is beautiful even on this cloudy night.

Fourth of July (Saturday)

Happy Fourth of July to everyone!

The nurses helped me dress Kade today in his 4th of July outfit, enjoy the picture!!We tried to watch the fireworks last night, but after the rain, the skies were too overcast. As long as the weather holds out, tonight should be a good show.

Kade had a good night, and is calm this morning. He has been off of the Versed, a sedation/pain drug, for about 12 hours now and shows a little more agitation, but is otherwise clam. He has vomited twice in that 12 hours time span, this could be from withdrawal or he has also been coughing a lot also. The Drs stopped his feeds for an hour each time, and then restarted. We will just watch him to see how he responds. To deal with withdrawal, they will be going back up on the Methadone. This whole process of weaning and withdrawal will take a while since he was on the drips for so long.

Kade's breathing has improved each day. His lungs are clear, but he just needs to get the junk out of his throat. He coughs good, but he just needs a little extra "umph" to get his throat cleared out. He continues to get breathing treatments every 4 hours, and the percussion treatment every 8.

We may get the MRI today if schedules allow. There is no rush for it, but he is pretty stable, and they will need to sedate him more for the procedure. We may as well get it while he is already a little sedated. Troy and I are not too concerned about what it may show. If it shows that there are areas of his brain that have been affected by all of this, we will deal with it when the time comes. We will not love him any less, and we will get him the treatment he needs if necessary.

Friday (07-03)

Kade has been very sleepy today. The MRI for today was canceled. As it turns out you can't do an MRI with metal still attached to your body. Surgery stopped by this afternoon and removed the 3 staples that were placed after his last surgery. Monday will probably be the next chance for the MRI, we are in no hurry to complete the scan, it is more to prepare for the future if needed.

Kade got a big bump in his "feeds" today. So far, he has been handling it so well they have bumped him up to 10ml an hour and adding another ml every 4 hours. We can now hear his tummy working with the stethoscope.

The doctors are planning to start slowing down on the drugs that are keeping Kade so sleepy. This is the first step in the slow weening process.

To pass the time on this rainy day, Allison and I put together some of our favorite pictures of Kade and the family together along with one of our favorite songs. Hope you enjoy it.

Thursday Night (7-2)

The day went well for Kade. He had a good day of rest and was much more at ease. While he still gets fussy, moans, and cries a little when the nurses have to complete the daily duties, a loving hand from can usually calm him in just a few minutes. Kade is going to have another first tomorrow. To error on the side of caution the Doctors have scheduled an MRI. They will be looking at his brain to see if there is anything is out of the normal. Kade's organs were under a great deal of stress during the first few weeks and they want to make sure that everything is well above the shoulders.

Kade has been getting a small amount of formula in his tummy over the last day. Kade was no small boy to begin with before this all started. He loved to eat and in fact he preferred to feed himself. Cheerios, bananas, peaches, or pretty much anything you would put in front of him he would eat. So finally getting something in his belly again must feel good for him. They are up to feeding him 6 ml over an hour. It takes 30 ml to equal 1 oz, and Kade would have a 6 oz bottle every morning at 6:30 in Daddy's arms just for breakfast. So he is starting very slowly and gets another ml added every 8 hours.

Hanna got to come up and see Kade today. It was great to have everyone in the same room again. It's also been a blessing to have one of us be with her at night and get her ready for the day. She does mention to both of us the she just wants to have Mommy, Daddy, and Kade all home together. So we pray with her at night for God to heal Kade and bring us back under one roof soon. Grandma Ruth was down today to check on her little man, she was so happy to see him look so well. Hanna headed back to spend the 4th of July with Grandma in GI. It's always hard to let her go even for a few days. Prayers do get answered, not always the way we want them to, and not always as fast as we would like. He hears our prayers and knows what we need, he holds us all in his arms and gives us the strength to carry through.

Thursday Morning (7-2)

Kade is doing better today. Getting him back on the medication has really helped him out. He still gets agitated easily, but calming him down seems to take a lot less time. Being able to watch him rest peacefully for a few hours at a time has calmed our nerves as well. He made it a point to let us know at 5am that he is not happy about the tubes on his face. He pulled out his feeding tube and the oxygen tube, but the nurse was able to get them back into place.

The whole surgery staff stopped by this morning to check on Kade. They are pleased to see forward progress and assured us that the withdrawal issues are treatable. Instead of the cold turkey + methadone treatment plan we will be starting a slow wean process. From what we understand it can take 2 - 3 months to get him totally off the drugs. They have also decided that we will not be leaving the ICU in the normal progression method like most children. Since Kade has had such a long and hard road this far they are planning to keep him here until they are for sure he won't have a chance of coming back down. We had hoped that he would make it to the next step and get to a recovery floor by the end of this week. However, staying here in the ICU does gives us a very peacefully feeling like we will gladly continue.

Wednesday Afternoon (6-30)

Kade is getting the rest he needs now. In order to do so the Doctors have decided to put him back on some of the medications. We were all hoping that he would be able to go without them and be able to get by on just the methadone treatment. Methadone is used for treatment of narcotic withdrawal and dependence. He fought a good fight, but Kade is in the drivers seat and his body is just not ready to go without them. They plan to maybe try to slowly wean him down in 12 hours or so at a very slow pace. He continues to need breathing treatments which take a lot of strength out of him.

Kade will be getting a new IV-Line in sometime today. The nurses are starting to have issues with getting good blood samples. The new line gets inserted into the old line and then when it in place in the artery the old one is removed. We were hoping to avoid this by getting the PIC-Line early this week but his veins are to small and to deep to try. Today was a step back, but not totally uncommon from the sounds of things. Were praying that he finds the strength to fight through the next round.

Wednesday Morning (6-30)

It was a very tough night for Kade and Mommy. Kade is now going through a very bad case of withdrawals. His little body is having a hard time coping with the loss of all the medications that he required to get him this far. They did warn us that he can be very hard to watch and that is now a proven fact. His body shakes, becomes feverish, and even though he hasn't eating anything he has vomited quite a few times. He is having a few issues with breathing at the moment which is requiring them to do more breathing treatments. He becomes very agitated and his pulse rate gets pretty high. We just want rest for our little guy, but the treatments are necessary to help his lungs heal and get him the oxygen he needs.