NICU follow up/Kidney Clinic

On May 29 Ben had his NICU follow up and Kidney clinic. Well, Joe and I both thought it was a good idea to get both over with to minimize times going downtown. Yeah. it saved us gas. But, not frustration. Ben was not a happy camper by about 12:30. His NICU follow up was at 10:30. I dropped the girls off at school at 8:30 and he slept the whole 2 hours until we got there. Well, it was about an hour and 45 minutes until we got there, then another 10 minutes to actually park and get in to the hospital.

I gave him a snack inside and the nurse weighed him and measured him. 9.74 kg or 21.42 lbs and 31 and a half inches. This is important to note, because when we went to kidney clinic later, they weighed him again. The NICU follow up is basically the same as his annual assessment through EI. There was an occupational therapist, a Speech therapist, a Physical therapist and a doctor ( a doctor does not come out through EI).

The OT went first and he performed best for her. He was talking to her a little bit. Well, as much talking as he does. Telling her hi, no no, bye bye, more. She wanted him to get a duck out of a clear box that was only open on one side. The open side was right in front of him. Ben kept trying to use brute force to get it out. trying to lift it up, o push her hands off, or bang it. Finally, he figured it out and got the duck. She had him do some other tasks like pretending to feed a baby. He had to also stack some very small blocks, which he stacked 8 of (his age should be able to do 3-4). She also had him try to draw with a crayon, he made a few marks on the paper and that was that. He wasn't very interested. Possibly because every time he gets a crayon, his sisters yank it away and say "no, no crayons for you! You'll eat them!" Might need to work on that...  Overall, he performed very well for her. Then the speech therapist came in and he would not talk for her at all. She tried engaging him, but he would not say a word. Of course. SO, she did everything via parent report. After her, the dr and the PT came in together. The PT wanted to see him walk, but Ben was not having any of that. Every time I would put him on the floor, Ben would scream and tell me "up up! mama! no no!" Oh sure, talk when the SLP is gone, and then you won't walk when the PT is here! The PT did see him standing and measured his legs, and a few other things, however they do that. Then she left and he told her "bye bye!" The dr stayed, and we were talking about his recent admissions and such. And OF COURSE, Ben sees blueberries in the stroller and WALKS right over to them and gets them and brings them over to me! Of course, the PT was gone for this! The dr just laughed and said, "don't worry, I'll tell her."

So, after all of that, Ben was exhausted! That took about 90 minutes. They came back and gave me the results. Everything came back in the average to above average range. Except speech. He is in the low-average range for speech and they just want to keep an eye on his speech. If at 2 years old he still doesn't say 2-word phrases or doesn't follow 2-part directions and doesn't have at least 50 words, they want EI to evaluate him again. They also are glad PT is still following him. His walk looks good, but it's always good to keep up with PT. So, our next appt with NICU is in December. I am going to make sure there are no other appt's following it. That is too much for him. Especially with missing a nap.

After that, we went and got some lunch. Ben had had quite a few snacks during the NICU visit, but was still hungry. He had some yogurt with bananas in it and some bread. But, he was also getting very tired. He started just randomly throwing any food I would give him and screaming. When we were done with lunch we went back to Kidney. That was a much shorter visit. But, Ben screamed pretty much through the whole thing. The nurse weighed him for that one and he weighed 10.12 kg. or 22.26 lbs. Somehow he gained almost a lb. Probably because she didn't make me strip him since he was a screaming flailing about baby. :D She also took his blood pressure and it was 140/100. Higher than mine even is! She wrote in the notes "Patient is crying and extremely fussy. Mom reports he is tired." Yeah, that is not his normal BP. Never could get one. He wouldn't settle down. His norm is like 85/50 or so. So, we went to see the dr and they said he is looking really good kidney wise. His levels are really stable except when he gets a GI bug. Then his Bicytra levels dip down. They are going to repeat labs at the same time he has labs for cardiology. Depending on those levels they will determine whether they can lower his cytra he is on. or possibly take him off it except when he has a GI bug. AND, he only needs to see kidney once a year now! Hooray! One less appt to deal with. Yay!

So, all in all good news for the day. We were done there by 2. Got our discharge papers and left. By the time I put him in the car at 2:20, he was about to fall asleep. So, I gave Ben his meds 10 minutes early and he was out. Crashed completely and did not wake up until 4:30 when Joe picked him up from me. Like I said, it was a long exhausting day!

Having a snack before the OT came in

Practice day at school

So, this past Thursday, May 16th, Ben got to have a practice day at Montessori. They wanted him to have a little time in the classroom to test it out and see how he would react. Just to get him used to the idea of being in a classroom and around other kids. Well, he did fabulously! In fact, he walked in like he owned the place. Abby and Klara walked him in to his classroom because they were afraid he would be scared and they wanted to help him. Well, Ben walked in to the class, slapped his hand on a table and said "HI!" to the entire class." When no one really responded, he screamed a little louder, "HIIIIII!!!" Then a few kids came over, and the lead teacher came and introduced him to them. Ben grabbed a toy and sat down and got started playing. It's like he had been there all along.Then he looked at the  teacher, waved and said "bye bye!"

The teacher and I observed him. Ben would look back at me every so often to make sure I was there, say "mom?" and go back to what he was doing. He explored a few different toys, spent a few minutes in the gym (he didn't like the gym very much. Which is ok. Some kids don't like it.) and "talked" to some of the other kids. The teacher and I also talked over their procedures and how they sanitize everything. She mentioned that if a child mouths any toy, they immediately take it away when the child is done with it and put it away for sanitizing later. So, there is little chance Ben will get germs that way. There are 3-4 teachers in the class at any given time, depending on numbers. They also sanitize the toys at least once a day. And the whole class is up to date on their vaccinations. The director will be sending out a note at the beginning of the year, stating that there is an immunocompromised child in the class and that if their child comes down with anything more serious than a cold, they are to call her immediately. Even on the weekend. This way, we can call the transplant team for advice.

We only stayed for an hour on Thursday, though I am sure Ben would have stayed the whole day if I would have let him. We planned that his first 2 days will only be until 11:30. That way he gets used to it in smaller doses. Then Monday June 10, will be his first full day. With naps. On a nap cot. That should be interesting. I did mention that he still sleeps in a crib and the teacher said they would work with him. They have other kids that start out not really wanting to sleep, but give in to the peer pressure. Here are a few pictures of his first practice run

Playing with stacking rings 

Putting coins in the fish

Watching the ball go down

Ups and downs the last few weeks

So, Ben has had some ups and downs over the last couple of weeks. He started off about 3 or 4 weeks ago with a cold. We knew what we were in for, as he never gets over those quickly. We prepared fo at least 2 weeks of him having a cold with the usual symptoms of nasal drainage and coughing and sneezing. I think it may have been made a bit worse because the pollen count was so high as well during this time. Well, he never got over it. It just kept going on and on. And then eventually he got so phlegmy that he was vomiting because of having phlegm in his throat all night long. Finally I took him in to his pediatrician who also diagnosed a GI infection as well as a cold. She wasn't sure if he had a GI infection, but gave him zofran anyways. It seemed to help. Meanwhile, he had his neverending GI issues that are due to his medicines he takes.

So, we started him on zofran. It seemed to help. He really only needed it in the morning, when he was most phelgmy from the cold. All seemed to be getting slightly better. He even seemed to be eating slightly better and resting a little better at night. Then last week we had a really exciting week. Not in a good way. Monday was when our pediatrician saw him and put him on Zofran. Then later that day, his sister was pushing him in the stroller and accidentally pushed him over a bump and he went down flat on his face, the stroller went on top of him, and she went on top of the stroller. There was blood everywhere. Bruises and cuts all over his face and arms and I could not tell if he had a concussion or injury to his teeth. So, off to the ER we went. All 3 kids and me. Joe met us there shortly after we arrived. We were there for maybe an hour, if that. The dr informed us that his biggest worry was if he had impacted a front tooth. The front of the skull is the hardest part, they worry more when they injure the side where it is softer. So that was good. No major injuries and he has healed up nicely from that.

Thursday, back to the dr because he was sounding yucky again and he had a fever as well the night before. The dr wanted to run some labs because his lungs sounded a bit junky, plus him having a fever was concerning. But it sounded junky higher up, not in his lungs, so she was not concerned about pneumonia. We did those labs at the hospital, so we went to the hospital after school. That was a mess. We decided to come back after gymnastics. Joe met us there later. Apparently it took 3 sticks and 2 different techs to get the blood from him.

The next day,  Friday, I had to take Klara for an ear recheck, so I asked about Ben's labs and they said everything was clear. He looked great on paper work. So, we headed home and ran some errands. I always pack Ben's meds in the morning because I have to give them at 2:30 and I pick the girls up (or on Mon and Fri it's just Abby) at 2:30. So, I had the meds in my bag to give him at 2:30. At 2:30, we were waiting in car line when I got out to give Ben his meds. Klara was asking me some stuff, so I wasn't really paying attention. I gave him his prograf like I always do, and then his cytra. After I gave him his cytra, I looked at it and thought, "that looked a little cloudy." Then thought" SHIIIITTTT! I think I just overdosed him on prograf!!" I immediately called Joe freaking out because I wasn't positive I overdosed him, but I was pretty sure. I mean there was no way to be positive. He said I should go home and check the other syringes. That made sense because I always draw up all 4 cytra syringes at a time. I got home really quickly. And yep, Craaaaapppp!! There was 1 syringe in there that looked like 9 ml of prograf and 2 that looked like 9 ml of cytra. So, I had just given our son 11 ml of prograf when he only gets 2.4ml. OMG is not enough! I was crying and freaking out and ready to head to the ER, again. For the second time that week. So, Joe got the job of calling transplant. I gathered up a bag and Ben's meds, fully prepared to have to stay and detox him. He called me back less than 5 minutes later and said "turn around, go home. You don't need to go to the ER. Just don't give him his 10:30 meds and he will be fine. He will have lots of diarrhea, and keep him extra hydrated this weekend, but he will be ok. Just don't do it again." So, that weekend, he had the WORST diapers I have seen. He was insanely crabby, and very awake from around 2-5 in the morning, wanting to play. But, other than that, he is ok. And he is back to his old self today. We even went to the Celebrate Life Transplant picnic on Saturday which is where the picture to the right was taken. He felt pretty good while we were there too.

So, he has had quite the exciting couple of weeks! We would now like some calm down time and for some illness free months ahead. I don't think that is too much to ask :)