The Next Longest Night

We left the hospital at 9:00 last night. I was in the shower at 9:20 when Jarrad opened the curtain and handed me the phone. I knew that there was only one phone call that couldn't wait until I was dry. I ended up hearing straight from the doctor. He said they had just finished doing their "round" on Seven when they moved on and then heard the alarms going off. They came back in the room to find Seven's heart rate at 49. His heart rate should be above 80. Seven was still breathing but they lightly "bagged" him, and his heart rate went up. They weren't sure why this had happened. He had been struggling with an unusually large amount of secretions and maybe it became too much for him to deal with. The doctor informed me he didn't want to take the chance of Seven's heart rate dropping like that again so he was going to reintibate. Jarrad and I were disappointed to say the least. The most discouraging part was that we didn't expect this and didn't know why. We decided to go back to the hospital. On our way back, the nurse called and said they were heading over to radiology to get a CT scan of his head. The doctor wanted to make sure there wasn't an acute problem that caused this. Jarrad and I arrived just before the start of the CT. Seven's heart rate was still lingering in the sixties, low seventies when we got there. I was so nervous. What else could they do if he kept dropping his heart rate again? And isn't it just like me to ask? I did. If it dropped below 50 again, the nurse would have to do chest compressions. Jarrad and I held our breath for a few hours after that. In a very sad way we just stared at the numbers on the monitor. We watched the heart rate slowly dance around the fifties and sixties. Up and down. Up and down. The doctor came around and talked to us during a quiet time in the pod. The CT didn't show any sign of trouble that could have instigated Seven's episode. It compared very similarly to a previous MRI Seven had. The CT gave us no answers. The doctor was just as flabbergasted at why Seven just went sideways on us as we were. He was just acting in a fashion that no one could predict. The only place we could look for answers was the brain and we planned an MRI for the next day or so. Jarrad and I, over time, realized Seven was stabilizing a bit. Jarrad lied down for some sleep on the sofa in the room and I tried to curl up in the horribly uncomfortable chair in the corner. I ended up in a small sitting room between two ICU pods in the early hours of the morning sprawled across a chair with Jarrad's hat over my eyes. I vaguely remember someone closing some blinds in one of the windows for me. I didn't end up getting much sleep. I remember waking up from a dream so similar to reality I wasn't sure which was which for a while. The day didn't provide much excitement or answers, both fortunately and unfortunately. Seven's heart rate raised to fairly normal levels and his blood pressure lowered to completely normal levels. All of his electrolyte levels and blood levels were perfect. Due to the excess secretions we decided it was prudent to swab the throat to search for virus. It wouldn't provide any change to his care no matter what the outcome. I think I would sigh a little just knowing my seeing "sickness" in his eyes had a reason. I rest a little easy tonight knowing he is stable for now, but ultimately I just want my family all home together. Jarrad and I are used to hospital stays and random medical issues and that makes things a little easier for us. But I have now realized that it only buys us a buffer of time and we have reached our limit. I now feel just as sad and scared as all the other first timers. I'm ready to return to normalcy. I wish Seven was, too.

Second Monday

This is Seven massively irritated.

That is how he spent the whole day.

He was like this for a minute.

But that was his only restful nap of the day. We have no explanation so far for the cause of this. But our post ventilation days have been full of agitation, copious amounts of secretions, and high blood pressure.

The secretions were so thick it was hard to suction them out. We tried using gravity to aid in the extractions. It helped a little.

But then he did this. Does that look comfortable?

We'll get an MRI and talk to nephrology about the high blood pressure.

But until then, this is the Seven we have on our hands...

Second Sunday

Apparently Seven wanted to rid himself of the ventilator on his terms. He decided 2:30 in the morning was a good time. During bath time Seven coughed up the tube. The nurse said she sat him up, checked his vitals, and gave him racemic epinephrine for possible stridor. I don't have any more information on it other than that because I wasn't contacted until around 5:30. When Jarrad and I arrived at the hospital Seven had a nasal cannula on with just a little bit of oxygen. It was exciting to see Seven without the ventilator, however Seven was spitting mad when we saw him. I was able to pick him up and hold him. He kept flailing around and jerking backwards. I guess the nurses were hoping when I arrived I would be able to calm him down. I failed miserably. We decided to try some Ativan. That and me holding him again did work. I think that made my little boy seem like my little boy again. I had missed him for so long. I finally feel like he recognized me. Pretty soon we took him off the oxygen to see how he would do. It didn't change a thing so we just kept him off. He spent the rest of the day sleeping and then waking up and generating some agitation. Seven couldn't have a normal day so to throw us a curve ball he lowered his heart rate to the 70s (that's down about half.) He also raised his blood pressure up to about a 108 mean (that's up about double too!) We tried brainstorming about why and of course that went nowhere. Seven isn't really into explaining. It might be a few days until he is stable enough to go home, although the ventilator was a huge hurtle we seemed to have cleared. I'd love to sigh a collective phew with all of you but I feel its bad luck. With Seven, it seems just as soon as I think I have things under control, he hands me something new... or back tracks. You sigh, I'll hold my breath for a little bit. We'll be visiting with a few doctors tomorrow about the details. Thanks for all the well wishes... it looks like it's working!

Seven with Gigi.

I call this "Mommy Medicine."

Second Saturday

Blog Post Note: I'm tired (emotionally and physically) and therefore a little more sassy than usual. You'll have to bear with me...

We expected today to be a lot like "Second Thursday," with him resting and sprinting (as much sense as that can make.) We came in this morning and saw Seven just relaxing. They hadn't started the sprint yet. Jarrad and I decided to visit my parents (and score a free breakfast.) We then picked up Ocean and brought her back to the hospital to spend the day coloring and watching movies. When we got back to the hospital we found Seven telling a different tale. Seven was agitated and had developed a fever. His breathing was faster and heavier. The nurse told us Seven's behavior added on top of his hematacrite and red blood levels being low made the doctor decide to transfuse again. Jarrad and I decided Ocean shouldn't stay so we walked her to the front to get picked up. When we got back to the room there were several nurses trying to calm Seven down. They suctioned, rearranged his position, and even took the air mattress off the bed. Nothing was really working. Ultimately it took a dose of Ativan to get him relaxed. That, and sprinting. Surprisingly he was more calm when he was doing more of the work breathing. Dr. Tellaz came up with that one. It seems Seven is a bit of a control freak. He didn't like getting pushed around by the machine. Hey, Seven. Who the heck does?

Mickey Mouse came by for a visit later on. Seven, yet again, did not notice. Notice Mickey? He doesn't even notice the giant ice packs laying on his body. He's practically in the tundra right now. He started rousing again so he ended up getting another dose of Ativan. That one seemed to do the trick for a while.The blood came for his transfusion. We gave him a larger dose than last time. The blood is hanging in the upper right hand corner of the photo. Try not to vomit a little bit in your mouth. This is standard operating procedure.

Because of the fever, the doctor decided to pull the femoral line. Because of its location, it has a high risk for infection. Before we do this, a PICC line needs to be inserted. This is where a central line is made from an IV in the arm. We tried this the first day we were here and it failed miserably. The team tried again and again over several hours. It was miserable to watch. I decided to settle in for a nap. The scale of this hospital visit has been wearing on me and I've been just tired all the time. I am lucky Jarrad is here with me and can make decisions without me. Several hours later... Jarrad said they used an ultrasound to put the PICC line in. It was still extremely difficult and took several nurses to help. It also took a few more doses of Ativan. He ended up getting 4 total for the day.

I loved this face Seven was making much later. His tongue was kind of sticking out. Its a good depiction of the attitude he seemed to be oozing all day. Leave it to Seven to throw a wrench in our plans. He definitely doesn't like to be typical in any way. Jarrad and I remained a little edgy into the evening. While Seven seemed very settled and much pinker after a nice yummy bag of blood, his heart rate was so much lower than we had seen this visit. Earlier today he was up in the 180s and then we were looking at 80s. The nurse insisted this was because of the Ativan. He did look much better than this morning. And his blood pressure was very good.

He eventually settled down completely and we propped him up into a very adorable position. Several nurses had to pop in to get a better look. From the hall he seemed to be a very tiny person watching TV. They ended up finding a very tiny person sleeping. It would have been funnier if he was watching TV.

Second Friday

I had such high hopes for today. We sprinted over the last two days. He did wonderfully. Seven was awake for much of the night while he was supposed to be resting. (Maybe he didn't get the memo.) Around 10:00am we extubated. At first he looked happy to be free of the tube. Then we heard stridor. Seven's airway was swollen from the tube. He was having to work too hard to get enough oxygen.The nurses propped him up and he was put on helium. Yep. Helium. He was breathing in the same stuff you suck out of balloons at birthday parties for kicks. Helium carries more oxygen. Seven was still working just too hard to keep it up. Alas he was reintubated. Seven was given steroid treatments to reduce the swelling. Several more will be given over the next couple of days. The goal is to try extubating again on Sunday.Even this morning before all the hubbub Seven's eyes didn't look right to me. I don't know why but he did get a little bit of a fever this evening. There seems to be more questions than answers today and I'm tired. I miss my silly Seven.

Second Thursday

Seven's six hour sprint went flawlessly in the night. Apparently he had a room clearing diaper that caused one nurse to exclaim to the other, "I am never helping you again!" She said the horrid smell was wafting out of the room and into the hall.

Seven spent the day doing a 12 hour sprint. He did remarkably well. He slept through a lot of it, which is a great sign that he wasn't working super hard. We had the endocrinology team come by to investigate the low calcium, magnesium, Vitamin D and phosphorus. They ordered x-rays of his wrists and hands to be performed tomorrow morning. That area of the body holds evidence of bone issues. We'll see tomorrow how that plays out.

Tomorrow will be a more news worthy day. The plan is to rest him tonight and extubate tomorrow morning. We will closely monitor his reaction and hopefully will NOT have to reintubate. But you never know.

Second Wednesday

Seven had a good night. He did have to be restrained because he was trying to grab the tubes. Fortunately he wasn't wild and crazy enough to have to be sedated. We really don't want any more drugs in him. We haven't seen his eyes very much and hope to soon. And then...Look at me! I'm awake! He spent a good part of the day with his eyes open. He had the appearance of being drugged and mad as heck. This is to be expected. At one point he was resting so well that he slept with his mouth open like he does at home. The sprinting was leaving him pretty well zonked. He still did a great job tolerating the sprints through the day. The plan is to do longer sprints by a few hours at a time until we get to a twelve hour sprint. If he tolerates the twelve hour sprint well, then we will let him rest overnight and try to extubate by Friday or Saturday. Buzz Lightyear and Woody from Toy Story stopped by for a visit. Seven slept through it, but at least we got proof. One day we'll have all these photos to show him of all the fun he had no idea he was having. Seven has a low calcium count that we can't account for. It's causing a few other electrolyte anomalies that we are able to temporarily correct. This doesn't affect his ability to leave the PICU. It just is something we need to try to figure out later.

The Second Tuesday

Today was "Decorate Your Room Day" at the hospital. Not really for the hospital, but just for us.
Jenn, Seven's feeding therapist and close personal friend, brought craft supplies by and demanded we decorate. I can't do half a job on anything (except cleaning) so we went all out.
I really wanted to hang a disco ball, but don't have one. I had to settle on Seven's metallic pom-pom, his favorite toy. We hung photos of Seven and some family photos all over the room. Seven definitely has the coolest room in the pod.

Ocean visited again. Jarrad picked her up so we were able to have several hours of alone time with her. The Child Life Counselor here visited also. She brought Ocean a little care package with a coloring book, crayons, bubbles, and a finger puppet.The counselor asked Ocean about why Seven was here. She answered questions appropriately, and we were assured she has a good understanding of Seven's hospital stay. Seven spent yesterday resting. Today we wanted to start working toward weaning off the ventilator. Our strategy is to "sprint" him. This involves taking the ventilator down at intervals during the day. When the ventilator works less, Seven has to work more. We let him rest, then sprint him again. It's a lot like training for a marathon. Seven is "out of shape" and needs to build up more of the muscle tone required for breathing on his own. Our goal is to try and extubate Thursday morning, but this is really dependent on how Seven reacts.

Seven's platelet count jumped up big time today. It looks like he doesn't need my platelets after all and they will hopefully be used to help someone else.

Big News!! Seven opened his eyes on his own for the first time in a week! Sorry, I didn't get a photo. I was too excited to think. I spoke loud words of encouragement. He looked really annoyed!

Monday

Today was amazingly, a fairly uneventful day from a medical stand point. Seven just needs to get more well and stronger before we take off the ventilator again. Seven's stats remained pretty much the same aside from the platelet levels which have been steadily decreasing every day. We briefly discussed with the doctors the fact that if the trend continues tomorrow, we might go ahead and give Seven the platelets I donated a few days ago. (My blood is clean. No diseases. Yay!) I don't know if everyone knows this, but blood has an expiration date. Apparently mold starts growing after just a few days. I guess it's because I eat really well and I'm not all full up on preservatives.
The only big excitement today was going to get a VCUG. We had to wheel on down to the radiology department for it. This is actually quite a big production. When one is on a ventilator and has to travel it is with an entourage. A respiratory therapist has to unhook the machine and use a bag to help him breathe. To me, this looks very precarious and not very scientific or safe. But that's just me. A VCUG is a test that propels a dye into the bladder. An x-ray can then see if it goes into the ureter (kidney reflux.) We did surgery earlier this year to correct this, and now was a good time to check and make sure it worked. It did! The test went very well.

Ocean came to visit me today. I had a great time with her. She took my picture. I hate it and love it at the same time. I hate it because I look as tired as I feel. I love it because I look at it and think this is exactly how Ocean sees me. I look terrible, yet happy. That's what she can do for me.

I also love this picture. I think this is an accurate depiction of Ocean and I most of the time. Me smiling, and Ocean not still. I miss her but am still making time for her. She is happy, playing and not missing Jarrad and I too much. I hope to get my family all back together at home soon.

Who is Seven?

Doctors call this a "baseline." They want to know what a child is like when he/she is well. I thought maybe some new users might want to get to see the same thing.Seven is a happy, laid back child. He hardly cries and is very peaceful. He is extremely charismatic. Doctors, therapists, family and friends tend to be drawn to him. He seems to soothe those he is around. I think this is his super power. I'm convinced Seven is a super hero. Instead of a cape he sports a natural mohawk. On the crown of his head are two hair swirls that turn in to each other. This makes the hair just pop up in a shape that resembles a cresting wave.
Seven is a little over 2 years old, but developmentally he is about 9 months old. Seven has low muscle tone and hasn't grown in height in about a year. We are all set to start growth hormone when he is well. Seven loves to make raspberry sounds, smack his lips, and says "ba ba" and "ma ma."

Seven can sit for a while on his own. He will even play with toys while he is sitting. He also has really taken to water and likes to "smell" the water off his top lip when he is wet!

He can't hear or see very well so he especially likes tactile stimulation. He interacts with others by placing his hand on your face or neck to "listen" to you talk. He will also just rub his hands and feet all over you when you hold him.
Seven loves to be jostled. He laughs when he is tickled, thrown in the air, or just abruptly moved. His smile and laugh don't appear to be such in front of strangers. It looks and sounds like torture! His scrunches up his nose and squeezes his eyes shut.
Seven used to not like anything in his mouth except his binky. He has loosened up a little with that rule and now we'll even catch him sucking his thumb sometimes!

This is Seven falling asleep in his Bumbo in September 2007. (He was just a little guy!) It's just too funny not to post.