"Thank you for touching my life, my heart, and my soul." ~ my Granny J
A few weeks ago we took our perfectly healthy Mason in for surgery. He had both of his tear ducts reconstructed and it was a pretty intense process. I'll spare those gory details here! He had a hard time coming out of the anesthesia and so they admitted him for what we were thinking would be 24 hours. Ya right.
One week ago today Ezra had his 2nd surgery for his multilobular malformatic lymphatic cystic hygroma on his neck. (Say that 5X fast!!) We are still choosing the less invasive approach to sclerose it rather than cut. We are hopeful that we will have good results eventually. The interventional radiologist Dr. that is treating him thinks we will have a few rounds of surgery before we can hope it will disappear permanently. He is scheduled to go back in 6 weeks anyway.
Ez is such a sweet, good baby. It seems so unfair to put him through this. The entire staff that worked with him from the nurses that checked him in, to the Dr. and the staff in the room for the procedure, to the RTU recovery room all fell head over heals for him!
I don't think I've mentioned that Mason taught Ez his first words/phrase. He says, "go away" clear as ever! It is adorable and funny! Who would have guessed that Mase was the one to teach speech!! The Dr.'s said that he kept saying that over and over while he was under. Adorable!
He was treated with a medication they use to treat Lymphoma and is still having side-effects (mild ones) from it. Poor little dude!
his Dr. finally said he would be OK to try school again. He hasn't been since mid-January. He was so happy when he came home every day! He was able to make it for 3 days this week. On Thursday his voice started to sound hoarse so after deliberating what to do while he napped, he woke up with a 102.4 fever. After hours looked like our decision! Naturally he was admitted for a full work up and IV fluids to rehydrate him. We were there until Saturday this time. He was positive for a few viral infections on his tests, but that seemed to be all.
Now he is having these laughing episodes that last for hours. Like 6 hours! Turns out they are a type of seizure. Great. Now it's back to the Neurologist to adjust meds. What's next!~
In the pediatric wing of the hospital they do this really cool thing. It's called Pet Therapy. There are two families who volunteer and come several times a week to visit the sick kids stuck in bed. One sweet older man brings his super chubby bull-dog named Sapphire. She is super spoiled and very sweet. Mason loves to hold her on his lap and rest his head on her. Last time they were licking each other. Priceless and gross! This time he got to see Jett and Jarro again. I wish I knew what kind of dogs they are but they too are so sweet and friendly with the kids. They are incredibly trained and extremely gorgeous!
I wish I would have taken a picture of them playing with Mason, but I was too involved playing myself to remember pictures! 
On Monday (our vacation day) we had a pretty normal day to start. On Friday I had an emergency surgery done so I've been taking it pretty easy this weekend. Spen and Ethan took care of me all Saturday so they went to Sundance to ski for a few hours. Mase hasn't been sleeping so well but he napped like a champ that day. Ezra's birth mother came to visit today. We were having such a great time visiting that I didn't really notice how long Mase had been asleep. Spen and Ethan got home and visited with us.
I finally realized Mase had been sleeping for 4 hours! I decided to wake him up or he'd never go back to sleep tonight! That's when it all started. He wouldn't wake up. Not only would he not wake up, he wouldn't respond or react to anything I did. You can imagine how terrifying it would be to know your child was alive only by finding a pulse. He was breathing so shallow I couldn't tell he was breathing at all. We rushed him to his Dr. By the time we got to his office it had been about 45 minutes or so and he was a little less scary but still unresponsive. He was admitted with the diagnosis of a coma. Great.
After a full work up it was determined that he was in a medication induced coma. For some unknown reason his body stopped metabolizing his seizure med and the level had built up in his system with an obvious/ scary side effect. A normal therapeutic level for Mason is between 25-35. His came back at 65.
He's been pretty sedated and distant for the past 3 days but is starting to act more and more like our Mason. It is our 4th day here and we are sitting awaiting the news from the lab. Hopefully we get to go home to see the other 3 boys.
...
We ended up staying for 5 days this time. He had one seizure and we left with no real answers, just another thing to watch closely. He still has his pneumonia from the last hospital stay a few weeks ago, but it's slowly getting better! At least this time we got some smiles from the Masey Moose!
There were quite a few times when I couldn't get him to stop screaming at me. I was worn out and tired a lot more than usual since I was recovering from surgery while being there with Mason. When we'd get past the point of no return for him the ONLY thing that would put an immediate smile on his face was to call his 'Reg'. My mom. She talked and sang to him and he ate it right up! It was fun to see how happy hearing his grandma made him.. (here's a picture of him 'talking' to Reg.)
Once again I've had a lot of people asking me how Mason is doing... I really wish I had a good answer for that question! The only thing I can come up with is that he seems stable and he's happy. We repeated his X-rays this week and they really don't show much of a change. He's not worse, but he's just going to take a LONG time to get better! He's out of school for a while. He's just too fragile to expose to much of anything still.
The other thing that we are trying to figure out are his seizures. He just keeps having them! They are called break through seizures. That just means that they are seizures that aren't normal for Mason to have and he is having despite the seizure meds they have him on. He's not having the full body seizures anymore, they are just more subtle.
He still has a long way to go to be back to normal. We see or talk to his Dr. on the phone everyday still. He will get better. At least the pneumonia part!
Thank you for all of your prayers and emails. It really is amazing to know how many people care about our Mason and about our family...
I've had a lot of people asking me about what is going on with Mason and so I've decided to post what this past week had in store for him.... I've taken a lot of the emotional stress out of it and tried not to make it as scary as it was, but Mase was pretty sick this past week. Here's what happened..
Friday January 23rd:
I got a phone call from Mason's school letting me know that Mason was having a hard time breathing and they were concerned. I promptly took him and screaming Ez to the Dr. to be checked and to make sure that there wasn't something serious to worry about going on. Ez had an angry ear infection, and she sent Mason to have a DFA and sputum culture (RSV panal) -- (negative) and a chest X-ray (minor to moderate Broncheolitis).
We came home after those fun hours at the hospital and Mason promptly spiked a 105 temp. We did all we could to break it, including quite a few chilly baths! He whined and screamed ALL night. We got his fever as low as 102 at one point in the night, but I finally called his Dr. at 6:00 a.m. after watching the clock all night and we decided we'd better admit him to see what was going on.
Saturday January 24th:
Mason was admitted to the hospital with the diagnosis of high fevers and dehydration. He had all of the standard labs and cultures done which came back positive for a bacterial blood infection (strep pneumocaucas). He was started on a few IV antibiotics to help. His fever was hovering around 103 despite any attempts to lower it. We were hoping that he would run an extended course of IV antibiotics, possibly come home with a PICC line for that and he'd be OK. By night time he still was whining and screaming and they started him on morphine for the extreme pain. He was (and I was) finally able to sort of rest for about 2 hours.
Sunday January 25th:
Mason woke up trying to scream, but he couldn't breathe at 3 a.m. They called in the respiratory team to evaluate him, but he couldn't find clear breath sounds in his right side. His left side was very coarse. They took another X-ray and his right lung was so full of pneumonia you couldn't see any good lung on the picture. It was collapsed. He still had the fever that wouldn't go away, but at least now they knew that the source of the bacterial blood infection was from the bacterial pneumonia he had. Things were not looking good for Mason. This was the first time since NICU days that I wasn't sure if he could recover from this one. The entire day the RT would come in every hour and a half to do CPT, deep suction, and breathing treatments. We were also covered in cool wet towels at this point to try and lower his body temp.
I had held Mase all but a few hours up until my parents and Spencer came. Things started to look up a little by Sunday night, but only because of the diligent treatments of his RT. I was told that he would most likely develop a plural effusion and could potentially need a drain put in to get rid of the pooling fluid in his lung. We waited until after the 5:00 p.m. X-ray for them to tell us that we would not be sending him in the helicopter, yet...
Monday January 26th:
We still had our same RT who I am convinced saved Mason's life, (thank heavens!) He continued with his treatments and Mason's fever finally broke around noon. I finally stopped crying today and things were getting more managable. He was still so sick, but finally could rest without the fever. I was even able to get out of the bed with him and let him really relax! His labs weren't a whole lot better and the consolidated pneumonia was still pretty horrilbe. We were also able to see the plural effusion on the X-ray today. It was still too small to drain, no helicopter ride yet again! His fever would come back as soon as we let the treatment go too long. The morphine also would help him sleep. He was still on a large amount of oxygen too. He did sleep tonight though.
Tuesday January 27th:
Finally the labs started improving. Fevers kept coming back still. He's still getting regular RT treatments and still in isolation, but things are looking like they will get better. While my sister was with me, we were playing with Mase and we noticed that his eyes were tracking wierd and that they would twitch when he would look a certain way. It was scaring me, but the resident didn't think it was a big deal, it was!!
Tonight just as he started to fall asleep though he began to have full body seizures. This is not a normal thing for Mason and was a pretty big deal. They treated him after 25 minutes and when that didn't help gave him a 2nd dose. He finally stopped the full body seizure after close to an hour. His seizure then turned into a more non-responsive type seizure that he would come in and out of. This lasted for the next hour and a half-ish. He finally slept, I didn't!
Wednesday January 28th:
Pneumonia slightly improving. Today it became the secondary reason he was in the hospital. He is still being treated and watched closely for it, but it's officially under control. (Other than the building fluid I suppose.) He seized again during his afternoon nap, but it was short. Then he had another big, long, won't stop even with the max treatment seizure at bedtime.
This had the doctors scrambling for a cause. Brain abscess, and meningitis were the words and ideas that they decided were most likely. After the seizure was controlled he was sent for an emergency head CT with contrast to rule out these diagnoses. They did, thank goodness, but now we were back to not knowing what was going on. He finally slept well when we could leave him alone.
Thursday January 29th:
Today was the best Mason has looked or sounded all week. His pneumonia is still pretty bad, but he was able to have periods without his oxygen today! Big news!!! He seized again when he napped, which sent me running down to the pediatric clinics to try to find the pediatric neurologist. She ended up calling his attending Dr.'s and they decided to give him large doses of seizure medication to try and prevent more break through seizures from happening. He was completely snowed and high on the meds they gave him. He didn't, however, seize when he went to bed tonight.
Friday January 30th:
His labs and X-ray actually looked OK today. Finally. He was acting like Mase today. Finally! The Dr. wanted to keep him for his nap to be sure that he wouldn't seize again. His eyes have done the crazy wierd thing everytime before he has seized and they were doing it again, but when he napped he didn't seize. It was great! Maybe the meds suppressed it from going full blown! He had to get his IV meds all taken care of and we finally left for home tonight where he did not seize when I put him to bed!!
Saturday January 31st:
Home is great! It's hard to still have to maintain all of the treatments they were doing in the hospital by myself here though. He did have another seizure during his nap which sent me back to the hospital for more testing. They sent us home to await our results. When his Dr. called he was getting ready for bed, but he felt like the tests were OK. But then, he did it again. By the time I got his Dr. back on the phone it was over and Mase was asleep so when he suggested re-admitting for monitering I decided it wasn't the best thing for Mase. We'll just have to watch him here again I suppose. At least he is off his oxygen! I've been checking his vitals to tell his Dr. when we talk, but he's been great. We go back for follow up X-rays and labs on Monday. I'm hoping that we keep recovering!
