THE Test, Cook's Stay #2

THE Test

12/11/13

3:00 we arrive at the hospital and wait to get registered. We finally go up to the third floor.

Same floor we were on the first time but different room. One thing you can not say about cooks is that they have no Holiday spirit.... Lots and lots of Christmas stuff and spirit. There is a 'jingle mingle' in the lobby with lots of food and music. Sadly there is a sign that says "employees only" before you walk in. The aroma catches me even up on the third floor.

We get to room 3111 and it is HUGE. At least twice the size of our old room. Very nice luxury to have when you have so many visitors like we usually do (which is nice).

3:30 128/66 pulse 131

15.2 lbs, quite the change from last time we were here.

Ben is our nurse, he was very attentive with him last time... Asks Nolan if he remembers him... Surely right ?

4:18 Nolan eats has his first diaper on the hospital... Wow, what have you been eating?  Follows that up with a big spit up... Just like home.

5:39 dinner and relaxing

8:06 we go over the schedule... Fasting starts at 3am, checking vitals at 11 and 3 so we can get some "sleep"... Whatever that means in here. Nolan is in good spirits but I think that is because he is wearing his 'born in the USA' onesie... He loves the boss. Not sure how long this will last but it seems like it is well planned out. They will have to draw blood when his blood sugar level gets below 60 and then again at 50.

They test blood sugar in the room and then draw blood and send it off. Only problem was last time they would check and send off to the lab and it wasn't low enough... Time and again... Let's hope that doesn't happen this time.

10:25 Way past his bed time and he isn't happy. He can tell we aren't at home and not on his routine.

They are supposed to come at 11 to test blood sugar, eat, and get an IV all at the same time. Hopefully that can be accomplished.

11:12 the come and get the IV with very little problems, quite different than our IV's last time.

11:33 we are just laying down to rest and in pops the doctor. Doesn't really tell us much but stays 20 min. Nolan sleeps through it all and doesn't wake with any poking and prodding. The doctor is funny though. Starts talking about blood sugar and saying what they need to watch and why. In doing so he talks about how when you get low blood sugar it can lead to some major problems.

Us - how low is too low
Dr - a very logical question. It is like asking how many concussions are too many? Well you never know about who the quarterback is, it could be Ed McMann or Bart Starr... It is different for the quarterback.

I bet Ed McMann was a hell of a quarterback in his days long before he was on Johnny's couch.

Maybe we will be able to sleep a couple of hours.

 

12/12/13

3am fasting starts.  I don't know why but I expect some sort of trumpet sound or flag waving, sadly the nurse just says "ok it's started."

8:02 the night was better than expected... Nolan slept which was a really great thing. I think the noise maker app in my phone worked... He likes the heavy rain.

Dr Thornton (our endocrinologist) comes by and talks with us. We really like him, very practical. Always asks the questions "why are we doing this" and "how is this going to help him for treatment."

Good doctor, seems like he is really intelligent. All doctors are I'm sure at this place but he seems like a level above.

9:27 Dr Bassinger comes by just for a personal visit. She is great, takes a lot of interest in Nolan it seems.

11:12 lab can't stick him so we are trying from the heel.

11:35 a whirlwind of doctors and nurses coming by... All hoping his blood sugar maintains. Only problem is he gets fussy.

2:12 Nolan cried most of the morning but has been good since NiNi got here.

Labs have came back and he is finally at 47 (11 hours). This is good for us because he didn't go down quickly but on the flip side he can eat soon. They will have to draw more blood first and give him glucagon. Then they have to give him the glucagon challenge that lasts 40 min. He has to be tested at 10,20, and 40 min to see where his blood sugar is at. So although the fast is over... It ends with quite the challenge.

2:32 challenge started!!! It didn't come easy though... Trying to get blood was painful for him and us. He is about wore out.

3:24 we made it through and it wasn't easy for him. He is really tired. He is struggling to eat after we gave him a bottle. He ate at 2:30 this morning  so it has been 13 hours, you wouldn't think he would care what he was eating.

4:26 vitals are good and we are just waiting around. Nurse says there is a possibility we get to go home.

I don't really buy it, bet we are here till morning.


4:37 Nolan's cousins Noah and Harper are here... Which makes him happy.

5:05 our nurse misty is here (she had been great by the way) and she
Is informing us that we will be here till tomorrow morning at the least. (Wah wah Debbie downer) sug was not happy with this news.


6:30 Tony and Lisa arrive and it really raises our spirits... They also bring taco casa which is great.

8:26 Nolan gets hungry so we test his sugar, 56... Which isn't good but we aren't worried yet because of the fasting.  Should be better later. We are going to have to test blood sugar after he eats now... Nolan's poor little heal.

8:54 he ate and it is at 78, which is good.

12/13/13

9:23 Dr Thornton is here and talks really quickly and is from Ireland (I believe) so it is tough to understand him.

Blood sugar low - should be 70-110 his are in the 60s

He went down after 7 hours, should have been 18 ... Something is up.


Needs more sugar... Keytones are low because the body needs more sugar and uses keytones instead

Needs fatty acids levels

He has too much insulin or something isn't working right. These tests are trying to figure that out.

Growth hormone might be low

Once diagnose we need to find a treatment ... That is what we are doing these test for.

He says it will be a relaxing couple of days feeding him and checking his blood. I want to ask him if he knows what relaxing means.

His liver isn't inflamed like last time, which is good.

This is not the news you want to hear but it is at least the knowledge that he is getting treatment and we will find out more about what to do.

This does not change his cdg 1a diagnosis or anything about that, this only tells us what part or parts are being affected by it most. There is no cure or treatment to take it away... But there are treatments that can help, and that is what we are looking for.

Still tough to get news that he is crashing and isn't maintaining at near the level he needs to.

On the positive note he is the happiest baby one could ask for.


12:45 Mae Mae comes by and boosts his spirits.

4:15 Nolan is eating every three hours and we are testing sugar before and after if the before was below 60. This past time was at 64, our first plus 60 before eating all day. His poor heel.

7:09 Dr Dan and Dr Debbie come by and it is a breath of fresh air... Nolan is excited.

9:57 his blood sugar has went up and down this evening. They are still checking it pretty closely.

12/14/13

Grandpa jones birthday
State championship reunion

8:03 Nolan has been sleeping better and keeping sugar up.

9:37 Dr Thornton comes up to visit. He goes a little slower and it helps. He says that Nolan suffers from hyperinsulinism and we just have to figure out how to maintain that. We are going to start taking diazoxide twice a day. This will keep his insulin down so that his blood sugar level will stay up. We are going to have to try this for 3-5 days (at least) and then he will have another fasting studying. In that study if his level will stay above the 60s for 6 hours then we can go home. So it looks like we will be here for a while longer but he and we are encouraged about this and know that it is getting better.

This is just leading to how we are going to treat Nolan more than anything. We are happy to have a possible solution to the problem that doesn’t involve putting in a “G button” (a feeding tube that goes straight into his belly) so that he can be put on continuous feeds overnight.

9:28 pm a day full of eating and visiting with friends.

Jim
Noah
Staley
Nini
Lovey and papa
Kristen, Ellie Kate, and Margie

Great day... Especially because the diazoxide is working and keeping blood sugar high and insulin down. His blood sugars are better than they have ever been.

Also nini filled us with Holliday spirit by bringing a tree and Christmas decorations. Sug loves Christmas, and so does Nolan.

12/15/13

8:47 Dr Thornton comes by, no changes, everything is looking good. He is responding to the treatment well.

12:10 NoKo and JoKo watching some football.


4:21 Lovey comes and stays with Nolan, always a fun time for both. The hospital is a zoo though. It is Santa day in the lobby and you wouldn't believe the amount of people coming to see Santa. The line wraps around the entire lobby and the lobby is huge. I run into a friend from Alvarado and he says they waited for two hours last year and didn't even get to see Santa... No thanks, we will stay in room 3111. It is supposed to be for employees and kids in the hospital... Maybe seeing an elf would do.

They finish with a huge fireworks show. It is pretty awesome, and I am not the biggest of fireworks guys.

12/16/13

2:30 am the night nurse asks if she can feed Nolan... It is the most glorious question we have ever been asked.

7:15 it is probably the best night sleep we have gotten since being here. Sug is still asleep and I don't blame her. She is great about getting up all the time.

Nolan has been keeping his blood sugar up and the medicine seems to be working. They said it tastes awful and be ready for the kid to have some stomach issues but so far (knock on wood) Nolan hasn't been any different.

3:53 pm today has been crazy. We look out our windows, and guess who was at the hospital - the Dallas cowboys... Not all of them but a good amount, around 20, of them were and there was a big star in dez Bryant. Beasley, Fredrick, smith, hatcher, scandrick were some of the others. Interesting stuff. Ben Bass and Tyrone Crawford came to our room and got our picture with Nolan. Really cool guys and really good deal they are doing, really cool.

We also participated in 'SPAtacular' which was a free massage and haircut for parents in here. It was very relaxing and thoughtful.

6:12 Dr Starr comes by to visit... Great words of wisdom.

9:43 Nolan has a big couple of days, he will be testing to see if he is producing enough growth hormones tomorrow. It is common in these kids and is something his tests have leaned towards the last few days. Not sure how that will be treated but Dr Thornton will know the trick. We like him more everyday.

12/17/13

4:30 am lab comes to get some blood!!! They don't find any after 15 min... Frustrating because they are putting an iv in at 10 this morning and can get the blood.

Rain (the best person from lab) is about the only person who has been successful with Nolan. Many MANY others have not been.

9:25 Nolan gets done with his workout and we are ready for the 10am slate of testing. It is testing his growth hormone and I am not sure how that will be done... We will figure it out together. My largest concern is getting the IV. Hopefully, it goes smooth. Usually it is not easy.

12:45 getting iv and blood drawn for the last 4 hours was the worst thing ever...

Nolan sleeps for the rest of the day


12/18/13

10:02 after yesterday was such a tough day everyone is a little wore out today. We are fasting again, which started at 6 am. Sara is our nurse and she was the same as our first admit to this hospital some months ago. All we want today is for Nolan’s blood sugar to stay above 6o for at least 6 hours.

2:00 Nolan’s blood sugar after 9 hours is still in the 80s, fast is over, no lab work needs to be drawn, Nolan gets to eat

Dr. Thornton comes in, says Nolan did great with test, and we get to go home! We are all so excited. No one is more excited than Nolan to get the IV out of his hand,  he is amazed that under all that tape his hand is still there (his favorite “toy” these days).

4:30 After a long and tiring week in the hospital, we are happy to be heading home. Most importantly, we are happy to have some answers and a solution to keep Nolan’s blood sugar up. PLUS we are so excited that we no longer have to wake him up every 3 hours at night to eat. 

So happy to have his hand back and be heading home