How Are Things Going?

How are things going? I am having so much fun! And to top it off, if Jason continues doing as well as he is, he is schedule for release on SUNDAY!!! YIPPEE!!

Shawn has said screw you to the schedule the NICU placed him on--he would eat every three hours there and often had to be woke up to eat. Here, he has decided to want to eat every two hours. The delima is that he will eat no more than two and half ounces no matter how long he waits between feeds. That means that I have to feed him more often so he'll get all the calories he needs for the day! That leaves me like this...

He is still having trouble eating, too. That leaves me like this...

In case you can't tell, I have purple sweat pants on, a blue t-shirt, a grey sweatshirt, and blue slippers. This was all I had left after Shawn projectiled (thankfully only once) onto my last clean pair of good sweats. My hair is in disarray and hadn't been combed yet--at 3:00 pm.

And you know what? I LOVE IT!!! I still can't wait for Jason to come home!

Good news. Jason is off of his oxygen and feeding tube (again). He is back up to taking his feeds on demand again, too. Yeah. They have taken him off of all of his medications except his antibiotic for his bladder infection (gento.mycin) and his anti-seizure medication (kepp.ra). He has now gone two days without an apnea (A's) or bradycardia (B's) alarm. Double yeah.

Tomorrow is day seven of the stupid antibiotics for his bladder infection. His course of antibiotics will take from 7-14 days, with the expectation of around 10 days being enough. That puts us to Friday for the repeat urine culture.

The apnea/brady alarms will probably mean around another 5 days from today, assuming he has no other alarms. He has to be alarm free for a week. They have said that the A's and B's were directly related to the medication he had been given and wasn't something that he would do had he not had all of that. I am not sure if that makes a difference. That would mean we would have to wait until Saturday. Sigh.

At that point, they will again evaluate whether he can come home. All clear urine culture + no A's and B's may mean homecoming on Saturday/Sunday.

Keep everything crossed that this week goes by smoothly and very quickly.

Here are a few pictures to commemorate Shawn's big day...

Putting on his going home outfit.

Proud daddy and his little boy.

Mommy, daddy, and Shawn.

Mommy (notice that I am already tired here--it was a long night and morning) and Shawn.

Here we are again...Shawn was tired of the pictures at this point.

Putting on his jacket...almost done!

Shawn saying "See ya, suckers! Let's get outta here!"

We are having so much fun. Things are going well so far--I hope I didn't just jinx myself with that. I think we could spend hours just looking at him (our own little Shawn-o-vision).

We can't wait for Jason to join us!

Jason update:

Things are looking better and better today for Jason. He is back to bottle feedings, to his delight. He is having some apnea episodes, but the doctor feels this is just his body dealing with the anti-seizure medication (which can take anywhere from 40-200 hours to leave his system) and the sedation medication he was given.

It is challenging going to see him, though, because Shawn cannot go back in the NICU. Isaac and I are taking turns staying with Shawn and visiting Jason. I really can't complain, though, as long as he continues to improve and progress toward his own homecoming!

He's home. Shawn is home. I am sitting here staring at my beautiful little boy. It is bittersweet that Jason isn't here and is sick, but he will get here, too.

Sigh. I am in love.

The call we got this morning was scary. I know the nurse who called was scared. It was clear in her voice while we talked. Both of us were preparing ourselves for whatever was ahead of us. It sounded bad.

We got to the hospital at about 8:00. By that time, Jason had already taken it upon himself to expedite his extubation and pulled it out himself. His breathing had improved, so they left him off of the ventilator and put him on an oxygen cannula instead. He is still being supported by cannula right now, and I suspect that he will be for a few more days.

Jason had a head ultrasound, a complete blood work-up, an EEG, and various other tests to try to figure out what happened. Fortunately (or maybe unfortunately, not sure which yet), they haven't found anything that may have caused him to have seizures.

The theory right now is that Jason was traumatized by several things late yesterday, that led to his body reacting in this way.

Here is a run down of what is thought to have led to the seizures.

• Jason is on an IV for his antibiotics. I told you that the line was placed in his head. Well, the IV had to be replaced yesterday because it was no longer allowing his antibiotics through it. They sedated him with a drug (a slightly higher dose than he has had before) so they could start a new IV. The seizures started about an hour after this drug was given.
• He had started to "twitch", so they gave him another drug, ati.van, to help him calm the twitches. This caused him to twitch even more. I informed the doctor that Jason has already had a reaction to ati.van after his hernia surgery. (not sure why this was news to them. will ask the nurse that had him the day of the surgery if she recorded the twitches on his chart.)
• They tried to re-insert an IV in his head, which didn't work. They moved to his arm, which didn't work, and ended placing an IV in his foot. He was repeatedly poked, of course, and lost blood from each of these IV locations. He had also lost some blood from his original IV in his head. In total, he lost enough blood to lower his hemoglobin level to 6. The NICU doesn't want the number below 10.
• He is also on an antibiotic that I had a severe reaction to.
• His immune system is still developing and fragile, and was dealing with his bladder infection.
• He is at a higher risk of seizures because of the shunt itself. (hmm...struggling with this being included here because I feel like this shouldn't have happened in the first place, and it irritates me that they like to include the shunt in their list of possibilities. but, they included this in their theory, so I'll include it too)

The thought is that all of these factors led to a sort of overload for him.

To help keep him stable, the doctor will keep him on the anti seizure medication for 3-4 months before slowly weaning him off of it. This will let his system stabilize more and prevent anything else like this from happening while he continues to get bigger and stronger.

What does this mean? Well, it means that we just progress as we have been doing. First was to stop the cycle that had started with the seizures by giving him the medication. Second, he will have a blood transfussion to bring up his hemo levels. Third is to continue to fight the bladder infection with antibiotics. Fourth, is to get him stable and strong enough to come home. Potentially, even with all that has happened, he could still come home when his course of antibiotics is done.

When we left the hospital a little while ago, we were feeling much better about how he was doing. He wasn't as pale as he had been, the seizing had stopped, and they were going to start him back on formula (which will make him VERY happy).

He is definitely our little healer/warrior.

I think I lost 10 - 15 years off of my life with this little scare!

Both of us are off to take a nap now. We are beyond exhausted, as you can probably understand. I'll update with more information as it comes in...

In other news, Shawn will come home today. I signed him out already, but they are holding the paperwork so we could come home and get some rest before we bring him home. They offered to keep him one more day, but I don't want to tempt fate. Wonder why it would make me nervous for him to stay one extra day?

Updated at the bottom...

Ahh, what would life be without yet another twist? Jason's picc line stopped working (why is still unclear) so they had to put in another IV. They sedated him so they could start working on a new IV, and Jason starting twitching. They gave him another sedative (ati.van) to see if that would stop the twitching and it didn't. So...

The thought was that this was a seizure. So they gave him an anti-seizure medication. An EEG is scheduled for tomorrow and they ordered a complete blood work-up.

He has no fever, no fussiness, no indications of illness (except the bladder infection that caused no symptoms).

The doctor called me a little while ago to tell me what happened. I asked if the sedative could have been the cause of the twitching.

The answer is yes it could and that is what he thought at first, but usually ati.van stops the twitching if that was the cause. I told him that Jason had already had "ati.van twitching" after his hernia surgery. When he learned that Jason has already had a reaction to ati.van, he said that would explain why it didn't help when he gave it to him. (duh) He said the info I provided made him lean a little more toward this being a reaction to the medication.

They are still proceeding with the further testing to reassure everyone that it isn't actually seizures, but a reaction to the sedation drugs instead.

This may be naive of me, but I don't think that we'll find this was a seizure. Maybe my radar is just overloaded and not working properly. It just doesn't feel like it to me. It is not like I have a medical degree or anything, but I just think this was a reaction to the sedatives.

Hopefully we'll know more tomorrow.

On another note, Shawn may come home tomorrow. Again, I'll believe it when there is a baby in the car, but I suppose it is a possibility.

Update:

After seeing Jason, I don't know what to think. Whatever he is doing (twitching or seizing) continued for awhile after the doctor called me. They gave him the anti seizure meds while I was there, and it did stop whatever he was doing and sedated him. I have several theories that I am pushing on the doctor, of which all are plausible.

1. Reaction to the antibiotic. This is the same antibiotic that I had a severe reaction to while I was in the hospital. (the one that made me so sick that they quarantined my room and assigned the infectious diseases doctor to me only to later find that I am allergic to this stuff) A side effect of said drug is muscle twitching. Dr. seems to think that if he was having a reaction to the antibiotic, he would have reacted yesterday, right after his first dose. Of course, I countered that with the fact that it took me two weeks before I reacted to it, and I was getting doses of it every 6 hours. So, this theory remains for me.
2. Reaction to sedation medication. Also known side effect is muscle twitching/seizures (according to the med journal the charge nurse looked the med up in tonight)
3. Ati.van - the second sedation medication given to stop the twitching that started after first sedation meds. We already know that he had pretty severe twitching after the use of this drug.
4. A combo of both sedation medications worked a number on his poor system.
5. The picc line in Jason's head was no longer working, so they were replacing it. The first picc line bled, of course. I am told quite a bit. So, they had played with his head, and he lost blood. They tried to reinsert the picc line two more times (back in his head--don't get me started on this one because it just boils me and makes me get ugly) each being unsuccessful and causing further blood loss from his head. They ultimately put a regular IV in his foot, so that was the third IV attempt at the time. In other words, they traumatized him.
6. Any/all combination of the above working together.

All of these scenarios piss me off because I truly believe none of this would have happened had I taken him home on Sunday. They redid his blood work, and wouldn't you know that Jason has absolutely zero signs of having any infections. zero. Granted, they did not do a culture on his urine again, but he was in mid range for his cbc readings.

Yes, my friends, I think they erred on the side of caution and then made him sick. I do believe that because literally, this happened within a few minutes. He was fine, and then they wanted to start his antibiotic and do his picc line, and then he was sick. It is not a coincidence that this picc line and the medications are in the center of everything.

I am surprisingly calm about all of this. Angry and on fire, but calm. I made my points with all involved. Thankfully, whatever he was doing had stopped, and I pray it doesn't return, so now we are left with figuring out what happened. He will still have his EEG done in the morning, but I will bet that it shows no seizure activity.

I am working on questions that I'll talk to the Dr about tomorrow. If you have any suggestions, please let me know.

And Shawn just might come home tomorrow. I know I already said that, but I think it needs repeating. He gained weight, and that was the condition fav. doctor gave me on the phone tonight. Even asked specifically about a certain amount of weight, and he said just a gain--said he'd do better at gaining at home anyway (oh really?). So, I still will believe it when I see it, but it could happen.

Updated at 6:29 am 1/25/08 - Jason is back on the ventilator. Don't know what is going on. Still waiting for tests and results to be finished. Has what appears to be another seizure at 5:19 in which he was "close" to coding. Scared shitless. Pray for him.

You're probably wondering about Shawn. I really have no idea when they'll release Shawn. The only hurdle he has is his bottle feedings. It is a struggle to get him to eat by bottle, and he fusses a lot of the time, especially in the beginning. He will take it, and he wants it, but you must have patience and persistence to get him to finish. I attribute this difficulty to acid reflux. When he eats, a little of the formula and stomach acid slips back up into his esophagus. It burns, and it is painful--hence the fussing.

The problem is that the nurses don't always have the time (or patience) to work Shawn through his entire bottle. Once he starts to fuss, the nurses tend to go for his feeding tube to gavage the rest of his food. So, on paper, Shawn doesn't finish a lot of his bottles. He can (and does when Isaac and I are there to feed him), but he doesn't because when he starts to fuss, they give up on him. It is a vicious cycle. (I do want to say that not all of the nurses are like this, but there are enough of them.)

I have talked to the doctor about this issue, and he doesn't think that his acid reflux is any worse than that of other babies. I beg to differ, but I can't seem to get them to agree. There is medication to help Shawn deal with this, but again, the doctors are leery of giving it to him.

I finally got them to remove Shawn's feeding tube late yesterday. I am hoping that this will end the temptation to give up while the nurses are feeding him. I don't want to jinx anything, but Isaac had a good night with him last night (with only minor fussing), so maybe things are resolving themselves slowly but surely. There is a catch, though. When Shawn bottles his entire feeding, he burns more calories. This translates into weight loss. He lost an ounce last night. This wasn't unexpected, but he definitely can't come home if he continues to lose weight. And for someone (me) who never had to give calories a second thought, all of this calorie/weight stuff is challenging (and depressing). Sigh.

They placed Jason's IV line in his head. Thankfully, they didn't shave his head before they put the IV in, which would have made me blow a gasket. He doesn't have that much hair to begin with and he already is bald on the back of his head from his surgery, so shaving his head would have killed me. I do have to say that it is odd to see him with the IV there. He doesn't seem to mind, so I guess that is all that matters. It does tether him back to the IV pole, which is sad. We had just got him disconnected from the major monitor only to add that. It will be extremely nice to hold the babies without a bunch of wires connected to them!

Isaac pushed the doctor into doing the same tests on Shawn that were done on Jason. Hopefully they won't find anything, but if they do, we want to get it treated now and not wait until he is ready to go home. Neither Isaac or I want to go through the same situation with Shawn that we went through with Jason. You better bet that the next time they say I can take one of the boys home, there will be a baby in the car before they know what hit them.

I am still not in a good place, but I am doing what needs to be done. It isn't like I can't. Somehow, we all have to find a way to go forward and get things done, even when we would rather dig a hole and bury ourselves in it. The light is at the end of the tunnel (although I swear it is on a major dimmer switch right now), so I am trying to focus on that and not on my misery at the moment. Ten days. I can do ten days. Now we are at 9 days. See things are already a little better than they were yesterday. (believe that?)

My resilience is almost at its end, though. I am finding it harder and harder to pick myself up to move on to the next hurdle. There have just been so many without any breaks. It has gone on for so long. I am tired.

I also have to admit that it is VERY hard for me to go to the hospital, and I have to resist the urge to turn around at every corner. But once I am there, it is usually okay. Hard, but okay. I have never been especially fond of hospitals in the first place. My experiences while I was there didn't help matters much. Add to that all of the mess at the other hospital and the delays and setbacks we get from this one, and it equals some pretty strong emotions. Again, I am trying to push that stuff to the side for now and focus on getting the boys home. To say it has been rough is the understatement of the year.

Thank you for listening to me vent about all of this stuff. I realize that it must be hard to read. I have been negative and fearful, but you stayed by me. Your kindness and support have got me through many tough days and nights, and for that I will be forever grateful.

I can't wait to be complaining about the sweetness of sleepless nights and spit-up. I can't wait to post pictures of my beautiful babies at home, smiling at the camera. I can't wait for it. I know it will come. It will. It is just hard to remember that sometimes. Thanks again for sticking with me, hopefully until I can do all of this stuff and more.

Hmm...with the two blogs combined, this is my 200th post. At my 100th post, I was dealing with the other hospital. Now with the 200th post, I am dealing with a delay to the boys' homecoming. I sure hope the 300th post brings much brighter news!