How We're Doing Now

Hanging in there. That's how we're doing. Seven is not quite the little boy he used to be. When I lay him down in bed at night, or on the floor to change his diaper, he arches and flexes his whole body. He gets all tight and turns his little hands into fists. Not only does it make changing him very difficult, its upsetting to see because it doesn't seem natural.

We've had several follow up doctor appointments and have several more planned in the next few weeks. There is a urological rearrangement surgery we have been planning for a year or more. We were waiting for the right time, and as he keeps having so many bladder infections, it seems now is the time. In September we are going to take care of that, get another MRI, and get a CT scan of his kidney. We had an ultrasound a few days ago and it appears his left kidney is collecting stones like they are discontinued beanie babies. A CT scan will give us a better idea of what they are made of. If its calcium, then we might be able to shock them to break them up. We have no idea why his kidney is acting up. It has no good reason to. We're trying to find a kidney interpreter but to no avail.

In feeding therapy, Jenn noticed Seven isn't swallowing anymore. This is most likely because of the brain injury Seven sustained. One thing we learned while in the hospital is that Seven has a new diagnosis of Central Pontine Myelinolysis because of the hypernatremia. Since leaving the hospital I've learned that there isn't a lot of information on this disease. It occurs most often in alcoholics. It is almost never seen in someone as young as Seven, and therefore, I will likely not find any literature on a case like his. A rapid sodium shift in the brain is another way one would acquire this diagnosis, as the case is with Seven. When researching this diagnosis I've found swallowing problems often occur. Other things presented are confusion and delirium, double vision, muscle spasms, speech difficulties, and weakness. There is a high mortality rate with CPM. We are trying to stay positive but there is a lot we don't know. A lot of problems might crop up over time because of Seven's latest incident.

We started growth hormone. We had planned on doing this for a long time now. Results really wouldn't be shown for another 3 months at the earliest. I am glad we are on the path, though. At our last office visit we found Seven is 74cm now. That's two more cm than the last time we were there. Maybe his body has decided to grow a little on his own. That, or the nurse didn't do an accurate measurement. Both possible. Seven tends to do what he wants, when he wants. Funny... Ocean and Jarrad are like that, too.

Thanks again to all of the emotional support we have received over this difficult time. We really appreciate it.

28 Days

We're home!! We checked out of our Presidential Suite at the Phoenix Childrens Hotel, and made it back to real life yesterday. It's been a long hard road for Seven. He's out of the woods now, but unfortunately I'm now in the thick of it! I haven't been responsible for Seven's care for a month now, and I've forgotten everything. I miss my nurses!! They were so wonderful, and for those of you reading, thank you thank you thank you! I've never met a group of ladies (and one fabulous gentleman) with so much knowledge, experience, love and dedication. I always felt Seven was in great hands. For now, I'm still exhausted after not getting enough sleep for so long. I have more medications to give Seven, a weaning schedule to figure out, a mountain of laundry and a dirty house to take care of. And to boot, I have the Energizer Bunny of all toddlers added back in the mix. Boy did I have it good when she was being watched 24/7 by capable others. I still have help offerings so I'll make it just fine. And how can I really complain? Right now I'm looking at my super sweet Seven smile and coo at me from the comfort of his own chair. Whether it is from the happiness of being home and feeling better, or from a Methadone enduced euphoria, only time will tell. We have many pediatrician follow up visits, several specialists and several tests to get done in the next 6 weeks so it isn't over. I also thought I'd tally up the highlights of our stay for you...

28 days in the Pediatric Intesive Care Unit

1 MRI

2 CT Scans

1 EEG

20ish chest X-rays

1 PICC line

1 femoral line

4 intubations

4 extubations

1 bag platelets

2 bags blood

1 collapsed lung

2 bladder infections

1 lung infection

9 lbs water weight gain

11 lbs lost (for a 2 lb total loss)

6 new daily medications

Fourth Saturday

Today was a good day. His lungs looked good. There aren't many symptoms of withdrawal, so the weaning is working. He is laughing easily and even giggling on his own. I don't want to say anything so as not to jinx it, but we might be able to leave soon...

Fourth Friday

Seven did great today. His lung looks a lot better. He perked up and giggled a few times for me. He also started making his infamous raspberry sounds towards the end of the night. He is weaning off meds. We went down by half today. He occasionally gets enlarged pupils and cool sweats, but its to be expected. He weaned completely off the Vapotherm gradually through the day. He is currently on 4 liters of oxygen via the nasal cannula (think old people at a casino with a cigarette dangling from their mouth at a slot machine.)

We noticed Seven's skin peeling on a few places, like his wrists in this photo. We think it is from all the swelling a few weeks ago. That, or he was bit by a radioactive snake and is now taking on strange powers like Peter Parker in Spiderman.

Star Wars At PCH

George Lucas got it all wrong. I witnessed the truth today. The Rebel Army descended upon the hospital. Apparently they thought Seven was the hope of the galaxy and they tried to steal him! Thank goodness for Jarrad. Not one to back down from a fight, he grabbed a gun and started shooting down the enemy. A storm trooper helped spot for him. Seven, meanwhile, cheered his daddy on from the sidelines.

After the ruckus died down, we explained Seven's plight. Chewbacca tried to use his Wookie powers to help Seven. I didn't see any physical changes, but maybe it takes a little time.

There was some more posing for photos. The storm trooper thinks Seven looks like a good specimen for the army in the future. I agree; Seven does look dashing in white.

Jarrad and I ran in to Darth Vader in the hallway, too. He took his opportunity at the hospital to get looked at by Pulminology. It turns out he has some sort of throat condition he's had since childhood that gave him that horrible sound. He's really just very misunderstood. He's a sweet guy.

Fourth Thursday

When we came in this morning we found Seven sounding very coarse, "fish mouthing" and nasal flaring. We requested an X-ray and it came back showing his right lung completely whited out. We weren't sure if this was fluid retention or atelectasis (collapsed lung) so we ordered an ultrasound. At the same time, his previously ordered CBC had come back with a white blood count of 33. Last night's WBC was 15. Normal is 5-10. Seven is already on a pretty tough and broad spectrum antibiotic but it's possible something else could be simmering under the surface. Blood and urine were taken for culture. We'll keep our eye out for that... Meanwhile, back at the ranch, the ultrasound didn't show any fluid retention, which left us with atelectasis.

"What happened," you ask? The most likely scenario was a combination of excessive sedation and maybe a mucus plug that blocked the airway. What we did about it was to put him on a machine call Vapotherm. This uses a lot of pressure to push air into Seven's lungs to help them open back up. We put him on a higher setting of pressure to be a little aggressive with it. Basically we wanted to do everything in our power to avoid reintubating. I think everyone would agree that it would just be greedy to do that again. Seven shouldn't be hogging the ventilator all the time. He needs to learn to share.

Seven learned a new parlor trick. With the amount of pressure pushing into his nose through the cannula, there was bound to be overflow. When he yawned it sounded like a leaf blower. The most amazing feat was when I noticed bubbles blowing out of his tear ducts. It was like a teeny tiny little hot tub in his eye. Oh yes, I caught a photo...

The noon X-ray showed great improvement in the lung. It was almost completely opened back up. It should continue in this manner. We're still just waiting and watching...

Fourth Wednesday

Seven was agitated all through the night and needed quite a bit of medication to be sedated. Everything given during the day and night finally caught up to him by the time we arrived at the hospital around 6. Seven was so "snowed" he started having episodes of bradycardia followed by a sudden onset of tachycardia and respiratory distress. They didn't last long and were quickly recovered by masked oxygen. It seemed that the medication had made him so sedated that he had trouble controlling the secretions again. He had a total of three episodes during the day.

We started "cough assist" treatments where a respiratory technician beats on Seven's chest with an air-filled pillow covered mask. It sounds horrible but Seven loves it. I compare it to a spa treatment. I made a video (my new favorite thing)...

After he gets sufficiently beaten, the respiratory tech uses a Cough Assist machine on him. It alternates pushing air in and then creating a vacuum to encourage Seven to cough. This technique breaks up any secretions in his lungs and airway and pushes it up.

Seven seemed to perk up quite a bit during the day. I was able to get him to smile several times. It seems we might have his medication needs understood now and can keep him at the correct consciousness level.

Fourth Tuesday

Due to his rapid arm movements , Seven needed to be "shirted" in the night. The corners on part of his IV on his arm were scratching his skin. He looks less sick with clothes on, I think.

The EEG was scheduled today. While Seven was asleep (which is optimal conditions for an EEG to be performed) the nurse called them down. This is the machine. The light looking thing at the top is a camera to record what the patient is doing during the recording.

Electrodes are placed all over the head to record electrical activity in the brain for a certain allotment of time.



Just in case Seven gets "handsy," his head is all wrapped up. Seven promptly woke right up and started flailing around during the test. He only seemed to settle down during the strobe light part. That seems to be the opposite of what usually happens...





He seemed rather agitated for the majority of the rest of the day. Doctors are trying to attribute it to withdrawals from the medications he has been on over the past few weeks. Jarrad and I aren't so sure, but we are willing to wait and see how he does when they set up a weaning schedule.




Jenn, Seven's feeding/speech therapist came by to help him with his "jonesing." She brought jingle bells, vibrating fish and a rain stick. We all took turns holding him, trying to placate him as best we could. Jenn's combination of vibration with the rain stick and banging the jingle bell in a specific pattern on his pillow seemed to work for the largest allotment of time. Nothing really worked long term though. Seven was sweating excessively, had enlarged pupils, rubbed at his eyes, flailed his arms, and had some diarrhea. These can all be attributed to withdrawals.

We spent the day trying to get Seven up to a certain comfort level of comfort by adjusting the pain/anxiety drugs. Once that level is met, a schedule is creating for appropriately weaning down. If Seven is still having these symptoms while weaning, than we are going to have to reevaluate what we could attribute this too.

The neurologist took a look at the EEG and noticed a couple of things. The first thing was that Seven's normal brain waves seem to have a lower frequency than what is typical for his age. Seven being on pain/anxiety meds could possibly be skewing the results. There were also a few spikes of activity in the brain waves at random times. During these spikes, Seven's physical activity did not change. The neurologist wanted us to watch him over the next few days and note if we see him do some small movements that seem strange to us like flexing or shaking one or more limbs. This could be a sign of some new seizure activity. Another question in the air is if Seven is going to be different from now on, due to the change in the brain from the illness. And again, as with all things, we just have to wait and see.

Third Monday

This is how we left Seven last night.

Seven did great all night and great all day. We took him off the low flow and put him on a cannula with oxygen (without the pressure.) His oxygenated blood level remained the same. Jarrad and I think he'll do just fine without the oxygen at all, but we want to go slowly with Seven. The big excitement for me was that I got him to giggle! And then I got sad for a second thinking about how it had been 3 weeks since he giggled. That's just not right. I didn't even know it was humanly possible for anyone to go without smiling and laughing for that long. Better late than never though! We are still on IV antibiotics and still doing breathing treatments. We have an EEG planned for tomorrow. We're looking good... Thanks again everyone for your prayers and happy thoughts. It seems to be working!

Right after I took this picture, he closed his eyes and went to sleep. Daddy does it to him every time.

I have to call our day nurse out on something. I'm not going to name names, but Daniella put a special kind of tape on Seven's face to hold down his nasal cannula. To give her a little credit, the tape is made to save his sensitive little face from all the wear and tear. However, the top of the tape has little black lines on it that were right in his line of vision. We now know Seven can see at least a little. He was apparently displeased. It was a strange mix of pathetically sad and yet still funny. I had to make a video of it. See how it plays out...

The Fourth Extubation

I don't really have anything interesting to say about the 4th of July in regards to Seven. We kept him sedated so he had lots of energy for our planned extubation on Sunday. When we came in this morning Seven was rested, off the sedation, and looking strong and ready to be extubated. The doctor gave him a once over, wrote orders, and gave us the word to get started.

We pulled the tube, gave him some breathing treatments, put him on Low Flow (it has a nasal cannula with warm humidified air pushing in) and watched and waiting.

He acted mildly irritated, flailing his arms around and grabbing at tubes, which is an expected but good sign. He eventually settled down thanks to Jarrad having just the right touch.

The neurologist was here yesterday looking to get a glimpse of Seven's movements in his new state. When he came by Seven was completely zonked from sedation. We told him about Seven's active periods and he wanted to see them for himself. We made an "appointment" for him to come by this morning when Seven would be off the sedatives. Unfortunately, he missed the commotion and came in 45 minutes later while Seven was resting comfortably, with his body extremely relaxed. He was pleasantly surprised that Seven wasn't demonstrating some muscle tension that is typically seen with white matter on the brain stem, though. He will continue to follow Seven during his visit.

Seven had considerably less secretions today than in previous days. And as that was what we were worried about holding Seven back, we are extremely excited. He was awake off and on, and was suctioned every hour or so. He started whipping out some cute moves from home like sleeping with his arm up next to his head and with his binky hanging out of his mouth. The nurses came by to ooh and ahh at him. It's nice to hear his voice again. He complained a little and then even let out a little sigh. We're going home now for the evening and hoping for the best. He seems like a different kid than the last time we did this, but with Seven you never really know what he has planned. Lets all cross our fingers!

Third Thursday and Friday

This is music time with Daddy. If you look close you can see the cord from the ipod. Seven sat completely still when the music was on! I know what you're thinking, "Of course he looks completely still. He could be all wiggly and I wouldn't know because it's a photo and that's what photos look like. Still. She could be saying anything untrue. Why am I even reading this?" But I don't lie. He was still. Case closed. And don't question me again.

I'm sorry. I'm awful tired and have to condense two days. But I gave you an extra one yesterday so I want to hear no complaints! Yesterday was a little rough. Seven was acting very ill. He spiked a fever in the morning but ditched it during the day. He had trouble emptying his bladder. We had to massage his lower tummy to help. He seemed to be in a good deal of pain. It took quite a bit of Ativan, Morphine, and Chloral Hydrate (his personal favorite.) We met with a new neurologist. The old neurologist was on her last day of rotation when we met. The new neurologist offered a differing opinion from the old one. The new one said he had no idea what could happen. He also said it was possible the white matter could change. He had no other information for us, had never seen a child this young with this type of change, and had also never seen a sodium level of 202. Basically no one knows what Seven will be like because no one has ever seen a case like this before. He pretty much said we are just going to have to wait and see. I politely told him, "Thanks for nothing." (I swear I said it in a nice way.) Wait and see is the theme of this visit.

Ocean visited Seven on Thursday. The Child Life Specialist (who is a child psychologist) brought a craft for us to do together. We made 4th of July hats out of pipe cleaners, paper, confetti, tape and glue. Ocean loved it. The Child Life Specialist also brought me the mother load of all scrapbooking supplies and guided me along the path of making a book for Ocean. I titled it "Ocean's Seven" and it talks all about where we've been and how we've been helping Seven. Every page has a picture on it and the book ends with lots of photos of her extended family. We had the book laminated and bound. It was a great idea (thanks Jennifer!) and I think it turned out beautifully.

Jennifer also brought by several wonderful books and Ocean and I enjoyed some reading time.

Ocean wasn't stoked about the paparazzi.

Seven was much more comfortable on Friday and looked a lot better. Its hard to tell beneath the tape on his face but we swear he is smiling at us when we get close to his face and talk. We still kept him sedated so he could "rest up." We found out that pseudomonas is growing in Seven's lungs and bladder. This is a very common bacteria found in the hospital. Seven switched antibiotics to one that covers this and he should be eradicated of it soon. During rounds we decided that we will try to extubate as early as Sunday but only dependent on how Seven is doing. We started Pulmicort, a steroid delivered via nebulizer, twice a day to strengthen him. We also decided to do another round of IV antibiotics about 24 hours out from a planned extubation. The EEG is now scheduled for Tuesday. An EEG will show the best results if Seven has a very low amount of sedative in his system.

And through it all, we still retain our sense of humor.

How I See Seven

I have a theory about why Seven was given to me. It helps that I have mad organizational skills. And the fact that I have the IQ level to be able to understand the medical terms and concepts that are thrown at me on a daily basis. But there are a great number of people that can do that just as well as I can. No, the important quality I believe I possess that leaves me best equipped to handle Seven is the way I see Seven. On paper, Seven looks terrible. There are all sorts of malformations and defects that paint the picture of a terribly abnormal child. I have the ability to read the charts and files to help care for him medically, but then I can set it aside. When I look at Seven I see Seven as Seven. The boy I know is sweet and peaceful. He is gentle and quiet, silly and tough. Seven has an unmatched charisma, even in comparison to Ocean (and that in itself is amazing!) The Seven I know melts hearts without action or words. He oozes a feeling of zen. I haven't met anyone that sees Seven quite the way I do (except for one--and I'm not telling who!) I can always see in other's eyes the little hesitation or sadness they feel when they speak of him in regards to his condition. Don't feel sorry for me or Seven. Feel envious. Because I can hear words like "brain damage" or "congenital malformation" and just file it in his binder. It doesn't affect how I see Seven. I'll wait and see. You see, I know that what goes on around me is medical "practice." Seven has never compared to anyone. He hasn't been written about or seen before. He certainly doesn't follow the crowd. He is as unpredictable and capricious as I am. He laughs in the face of a sodium level deemed to be "not compatible with life." I won't let an MRI tell me what my son is going to be like. HE will tell me what he is going to be like. And knowing Seven, it will be on his terms!

Third Wednesday

Seven was agitated all night. Morphine and Ativan were not helping. The nurse offered that it was especially worse when his diaper was wet. That information, added with the "sick" that we were seeing in his eyes, sounded like a bladder infection to Jarrad. The nurse took a preliminary urine analysis and it was "suspicious." To know for sure, we have to wait for the bacteria to grow, which can take a few days. But so far it looks like Jarrad was right. Hopefully this explains why Seven has looked ill to me for several days. We saw our Urologist and made some plans for future tests to see why he keeps getting these.

We got our MRI today. I'll start with the good news. Compared to the MRI Seven had when he was just a few days old, Seven's optic nerve hypoplasia has improved! That is the condition that affects his sight. The bad news is that the MRI shows some damage to the brain stem. The neurologist explained that this is the type of problem associated with hypernatremia. This probably has nothing to do with why we had to intubate again yesterday. However, this could explain some of the blood pressure fluctuations and temperature changes. It's possible that Seven's secretion control could be compromised as well. We just have to see how Seven does over the next few days. The brain stem damage can't be fixed and won't change from what it is now. It also won't get any worse. What it is now is what it is going to be. I was actually a little relieved because the damaged area isn't the part that controls personality. I should be able to get my Seven back. [insert smiley face icon here]

We are currently still on the ventilator, but plan on extubating tomorrow if possible. Seven should be able to breathe on his own if he can handle his secretions.

We are also planning an EEG for tomorrow to check if Seven is having some small seizure activity that we can't see to the naked eye.

As of this evening Seven's heart rate is back up in the normal range and so is his blood pressure.