Friday, August 21, 2009

Mask On and UPDATE

We had a good day, Tucker got up and was in a good mood from having the mask off all night. His xray was a little wet, but the doctors weren't to worried about it. I did notice that every time he drank or ate something by mouth, he would get really junky. So, around 2:30 or 3 in the afternoon, I returned from lunch and observed him sitting really still and a little pale. When I left he was asleep and oxygen saturation's in the 97 to 100 range. When I returned, his oxygen saturation's were hovering around 88 sometimes down to 83. I also noticed he was very agitated. Dr. Marx came by and he also commented on how agitated he looked.

After several doctors came by and did their routine stethoscope check, the decision was made to put him back on the mask for a little while. I must admit, this really busted my bubble. What I didn't realize was the plan was to put him back on anyway, just not this early. It was clear that he was just not ready to solo without the mask. Once the mask was back on, his saturation's returned to the high 90's and his color returned. The plan is to do the same as before, sprints off while he is awake and on while he is asleep. I was reassured several times by the staff that this was expected and we will still probably go to the floor early next week, so don't look at it as we are going backwards. It was hard for me as a parent to accept that, but like Karen and I have always said, we are on "Tucker Time"!!

After the mask was put back on, the decision was made to replace the NJ feeding tube so we can feed him without the worry of him aspirating liquid into his lungs causing them to get wet. As we know from the operations as a baby, until he gets stronger, sometime he swallows wrong and some of the liquid can go into his lungs. The plan is to have a swallow study done, of course it won't be until Monday, and Tucker can't have anything by mouth until after it is done.

Update:

After the mask was put back on, I felt as if my heart was broken. We were going so good and things were looking up, doctors talking about transferring us to the floor and now this!! I felt like the wind was knocked out of me. At about 8:30 pm, guess what, we took the mask off, put him into his stroller and strolled around the ICU again with just the oxygen in his nose. Saturation's were 100 percent!! That is just what I needed to put the wind back into my sails. That little boy just needed a little rest, he needed a little "Tucker Time"!! He amazes me each and every day. I used to wonder, when we found out he was Downs and had heart problems, what I did so bad for God to punish me with a child like Tucker, now I wonder what I have done for God to bless me with a child like him. If you have ever watched the movie "Radio", where Cuba Gooding JR., plays the handicapped kid that the football coach helps out, the coach has a great line, "If we treated each other half the time like Radio does all the time!!" That's the truth, what a wonderful world this would be. Tucker doesn't know a stranger, he shows love no matter who you are.

No Mask, and Tunes 08/21/09

Tucker went the whole night without the bipap mask and did great. He was up a few times coughing, but that is to be expected. He has to clear all the junk in his lungs from wearing the mask and being on the ventilator. He can clear it o.k., but how do you tell a 3 year old to spit it out? So, his xray was a little wet, but the doctors were not to worried. They said to do lots of chest physical therapy and suctioning to get rid of all that junk. If he is still wet tonight, we may have to wear the mask again.

Beth is our nurse again today, so she really knows and likes Tucker. She has been really working hard to get that chest junk loose and out.

Physical Therapy came by and we worked on walking, sitting on the edge of the bed and kicking and standing up from a sitting position. He is still weak in the legs, but he did really well. I think they underestimate him because of the downs. When he does everything I ask him to, they were really impressed. Tucker is such an amazing boy, he will be back to his self before you know it. He will be running me all around the place with his oxygen saturation's at 100 percent instead of 75 to 80.

After Physical Therapy left, Brian came by and played music on his guitar and sang a few songs. Tucker loves music and was wanting to strum Brian's guitar. He let him strum a few chords while he was singing. Tucker just watched him and even started singing the "Itsy Bitsy Spider".

video

Thursday, August 20, 2009

Update, 08/20/09

Tucker had another great night of sleep, so that means I had a good night of sleep, as good as I can in the room anyway. All the bells and whistles keep me up until I just crash. His strength is coming back each day and he is becoming the little man I know. When he wakes up, he always wants to be held, so I picked him up and somehow, his feeding tube was pulled out. That's o.k. cause we were stopping the feeds anyway and he had already received his morning meds. After all that, we got dressed and went for a walk in the garden again this morning. We love our little outings.

The doctors just rounded and were talking about his going to the floor. They want to fine tune a few things before sending us. I totally agree. Why push when were not quite ready. I would rather stay here an extra day than try to push him when he is not ready. Since the xray and blood gases looked great, they said "NO MASK" tonight. Woohoo, all day and night without any mask!! The also agreed to leave the feeding tube out and let him eat, dring and be merry all on his own. He is taking the meds by mouth with no problem. Just before the doctors arrived, optimalogy came and looked at his little left eye. Said it was looking good, just a little dry and to keep up the drops.

Things are starting to come together. His strength, his appetite and his breathing are all getting better by the day. We are so excited about how he has been progressing.

The picture I have attached is of Tucker and Miss Beth, one of his favorite nurses, in the garden this morning.

Tuesday, August 18, 2009

A Wave Hello

Tucker had a great night of sleep, (so did dad). He fell asleep around 7:30 p.m. last night and I thought he might wake up in the wee hours of the night, but he didn't. He would move around a bit to get comfortable, but he slept from 7:30 to about 4:30 this morning. Nine hours, wow!!! I was able to get a few more hours of sleep than usually. I have been sleeping in the room with him and all the alarms keep me awake, so good sound sleep hasn't happened in a while. Once we woke up, we got dressed and around 9 we went for a walk to the garden. Made a couple of laps around it and came back inside. It was starting to get hot and humid so we didn't want to risk anything. We came back up to our floor and made a few laps around the ICU and said our "Hi's" to everyone. He has really been full of energy this morning. Must be a sign we are getting better. We are now in the room and Tucker is getting settled in for a nap.

Just finished speaking with the Doctors. They are very happy with his progress. The plan is to keep him of of the bipap mask all day, including naps, and only put it on at night when he goes to sleep for the evening. We are also weening down on the amount of oxygen and on the adivan from 7 to 2.6 milligrams. Progress!!

The video shows him sitting in his bed watching his t.v.. Watch his left hand and he waves hi to everyone.

Monday, August 17, 2009

Closer to normal...

Tucker is getting stronger all the time and is starting to get back to some of his normal routines. He is beginning to read his books again and play with his cars. He is also loving his music. I played some for him off of the computer and he began to dance while he was in his bed.




video

Sunday, August 16, 2009

I "M" Tucker

I've been super busy with numerous things the past week or so, and I've just found a moment to stop over and update.

In short, TUCKER IS DOING FANTASTIC!



Mommy and Sis have come home to KC for a few days to get things in order, after all, it's been 2 months since they've been home to check on things. Daddy is in Boston with Tucker and they are rocking out with tons of progress.

Tucker is no longer on ANY IV meds and is taking everything by ingestion through the NG.

He's up and out of his bed, taking strolls in the gardens and bouncing balls in the room.



Today, he took his first steps since June 25th. YAY! He's growing stronger by the day and oh so pink!

video


He's even pulling himself up in bed, up went the rails. lol! Our little Superman is doing great and his parents have done fantastic about encouraging him and giving him the opportunity to show those docs what he can do.


Tucker is only on oxygen through the day and the CPAP mask at night if needed. He seems to be weaning from the mask so very quickly and fabulously! There are two meds left that his body still needs to detox from. With the amount of time he's been on these meds, it will likely take Tucker several months to be off of those. But, we all know Tucker and how awesome he is. He may very well detox himself much earlier than expected.

So yeah, everything is going so well. Mommy misses her boys but she will be back in Boston in a few days. Daddy is taking very good care of the little man and has even began posting the updates to their family blog. We have another Daddy Blogger on our hands. lol! Be sure to stop over and check him out!