Friday, October 30, 2009

Pix of Nathan and short update

Nathan is doing great. These were taken a couple of days ago. He is talking more and is getting better with his balance.

His speech therapist has come twice and will probably not come again since he is doing so well. Occupational and physical therapy come tomorrow. He is doing better and better and even ran a few steps tonight.

He is a fighter and we are so proud of him.

Tuesday, October 27, 2009

Nathan's going home!

Great news! The doctors cleared Nathan to come home today. He is almost back to normal and his rehabilitation therapy will continue on an in-home basis. He is no longer contagious with the flu and has not been for days. He still isn’t talking very much but everything else is going fine. The doctors advised us to have the other two kids get the swine flu vaccine as a precaution, but not because of anything to do with Nathan.

Sarah and I really appreciate your well wishes, love, and concern. Thank you very much.

Monday, October 26, 2009

Recent pix of Nathan

Loranna and Daniel enjoyed their bath tonight.

Nana and Papa Blanchard together with Nathan on Saturday afternoon. Nathan has a car in his mouth, which he thought was pretty funny.

Shelly paid a visit to Nathan Saturday night as well. That was sure nice of her.

Day 15

Some more news: the nurses/doctors told us wrong. Nathan has encephalopathy, not encephalitis. Encephalopathy is basically an altered mental state, which we knew already. The MRI did not show that anything was wrong, nor did the lumbar puncture as Sarah previously reported. The plan for in-patient rehab is still the same. He had a good night last night and stood up today while holding onto Sarah’s hands. He is playing with toys and having some fun with Sarah this morning.

Sunday, October 25, 2009

Nathan's doing well, not much changed since yesterday

Nathan is about the same today as yesterday. His last IV has been removed since he has finished the antibiotics for his staph infection. He is in good spirits but is still not talking very much. Sarah and I have both been with him this afternoon and evening, and we've had a lot of fun playing together.

Sarah was told today that his MRI showed encephalitis, or brain swelling. This might explain the neurological problems that he has been having. I did some research and found that four kids in Texas who had swine flu in July got encephalitis as well. They had similar neurological problems to the ones that Nathan has, but they all fully recovered. This seems to be a somewhat rare side effect of the swine flu, but it was good to read that they recovered! We have faith that Nathan will do so as well.

Saturday, October 24, 2009

Day 13--N continues to improve

Some highlights since our last post:

  • Nathan slept really well last night
  • He is sitting unassisted now for minutes at a time
  • He has been upgraded to a "mechanical soft" diet, meaning that he can eat both soft and pureed foods
  • He paid attention when I read him stories and watched some Playhouse Disney shows this morning
  • He is talking less than last night, which the speech therapist said is normal (frequency goes up and down). However, he has said a few words today, like George, snake, and puppy (while I was reading him Curious George)
  • The pediatrician said that cases like his have been seen in Texas recently and have been attributed to lingering effects from swine flu
  • Starting Monday, he will begin in-patient rehabilitation here in the hospital. This will involve several hours per day of intensive speech, physical, and occupational therapy. I have no idea what occupational therapy means but I will ask.
  • He laughs when I tickle him and when I play dinosaurs with him.


Day 12 update:

Jarom's mom is with Nathan at the hospital and we just called her . . . they have been playing peek a boo together and he has started smiling for the first time. He has also started to say more: Mickey and Minnie Mouse, my favorite color is green, dinosaur train etc. We are feeling such joy and gratitude. Jarom's Dad is sleeping at the hospital tonight so I can sleep in my own bed for the first time since Tuesday, what a blessing. My mom and dad are still with us and have been so much help so that I can spend as much time as possible at the hospital. Jarom and I are so blessed to have the four best parents in the world and the best family and friends too!!! We love all of you with all our hearts!

Love, Sarah

Friday, October 23, 2009

Day 12 update:

Nathan's team told me this morning that they are still looking for answers about how and why this has happened to him. But right now it is a mystery. We are going to start working with the rehab team of doctors and therapists so we can help Nathan to make the journey back to 100% recovery. Speech, occupational, and physical therapy are the main groups we will be working with.

Both OT and PT came this morning and did an assessment with Nathan so they will have a baseline. While PT was working with him he sat himself up and stayed in the position for about 10 seconds and he made eye contact with me, I said to him "good job Nathan, mommy is here" and then he lunged forward and let me snuggle him. We stayed that way for about 5 minutes but my knees started to hurt and the phone kept ringing so I finally had to move. Oh how it warmed this mommies heart to feel like my sweet Nathan knew who I was and wanted me. Between this and his comment from last night "my mommy here, mommy here," I am finally feeling like he knows who I am and it's the best feeling in the world!!! Yesterday Jarom held Nathan in his lap and read half a story to him before he started fidgeting. Today I was able to read 2 and 1/2 books with him on my lap before he started fidgeting. We are so happy that his attention span is increasing.

Lastly, I just went with him for his swallow test and he did awesome. It was one of the coolest things I've ever seen. They sat him in a chair and did an x-ray of his throat while the speech therapist fed him. His throat is looking wonderful and functioning perfectly now. I was able to watch the pureed food and drink on the x-ray move down and it was amazing. He was so hungry. So they don't have to replace the feeding tube that he pulled off last night, yeah! We are so excited for his improvements, feel that we are moving forward and pray that it will continue.

Love, Sarah

Day 12

Just got some really good news from Sarah. Nathan got a really good night's sleep last night. While she was on the phone with Shelly Blanchard yesterday evening, she heard him say, "My mommy here. Mommy here." It was really good to hear him say that. He is also trying to follow commands by the nurse to turn over. The doctors were speaking with Sarah a short time ago and I will post what they told her once I hear it.

Day 11 continued

I stopped by the hospital last night to see Nathan. He is thrashing around less and paid attention while I read him a story. He also drank chocolate milk through a straw and ate some pudding. He did pull his feeding tube out of his nose, which was a pain on the one hand for the nurses, but on the other hand it is good that he realizes that it is there and that he doesn't like it! I think it is only a matter of time before he starts to remember us and talk to us.

Thursday, October 22, 2009

Day 11 Update:

We have great news! The MRI came back clear so they don't think there is any brain damage. The Lumbar Puncture (spinal tap) is also clear (no signs of infections or bacteria). The medicine used to put him under has now worn off and he is showing signs of physical improvement. His pupils are dilating better and he is not clenching his mouth shut.

They did find out that his PICC line was growing bacteria and that is why they suspect that he has had a low grade fever for the last couple of days. They have removed it and put in an IV in his hand for liquids and blood draws. It took them 3 tries to successfully put the IV in, which was sad to watch. However, during the process he yelled out loud for the first time in 2 days and is being more responsive. He still doesn't seem to recognize family members. Speech therapy is coming to evaluate him today and he is still having respiratory treatments for his lungs.

We are grateful for the improvements. Suzanne, one of the doctors, told me that we will watch him overnight and his team will meet in the morning to discuss his changes. Thank you again for all your love and concern, we love you all!

Love, Sarah

Wednesday, October 21, 2009

Day 10 continued

Since his life is no longer in danger, Nathan was transferred from the ICU to a regular hospital room this afternoon. There's no change in his condition that we can see so far. It's possible that this state that he's in is due to the drugs in his system, but as a doctor put it, every hour that goes by without him improving makes that possibility look less likely.

The doctors ordered an EEG scan to check for seizures. The scan was negative--no seizures. He ate another popsicle tonight. His feeding tube is still in. He's off the of the supplemental oxygen. His lungs are clear, but he still has some stuff in his throat and chest that he's trying to clear out. He's still not talking either--he said "ouch" to one doctor who was poking him this afternoon and that was it.

Nathan was moving around a little more tonight. He got up on all fours briefly (twice) in the three hours that I was there tonight. He rolls around quite a bit, almost as though he was trying to get comfortable. He is still not sleeping much, though he was looking pretty tired when I left tonight.

The plan tomorrow is for him to have an MRI scan and a lumbar puncture (spinal tap). The MRI is to check his brain for swelling and damage. The lumbar puncture is to check for infections that may have developed since the antibiotics were stopped.

Obviously we are in anguish over this turn of events. Please continue to pray for him.

Day 10 update

Nathan is not progressing as quickly as we would like. He’s not talking, not sleeping much, and can’t sit up on his own yet. He doesn’t recognize Sarah or me yet either. A neurologist will probably examine him today and he may get a CT scan. The ICU doctors say that this is abnormal behavior.

We’re not out of the woods yet. Please continue to pray for him.

Pictures from day 9

Nathan's still not recognizing us or talking yet. This is a somewhat common side effect from Versed, the sedative that he was on. It usually wears off after 24-48 hours. We got some pictures to post now that he looks a lot better. It was fun to see him eat a popsicle.

Tuesday, October 20, 2009

Nathan's awake, disoriented

The drugs are taking a little while to wear off. He can't talk yet and doesn't really recognize Sarah at this point. He was on a paralytic and several other drugs for a number of days. They've removed his catheter, but his feeding tube and tube to get blood are still in him.

Day 9 update

I just heard from Sarah that Nathan’s breathing tube is out! The doctors are decreasing his meds even further today, so hopefully all continues to go well. He is awake and watching some TV. He’s not talking yet, probably due to his sore throat, but maybe he will start talking a little later.

Monday, October 19, 2009

Day 8 update

Today has been another day of progress for Nathan. His ventilator was turned down some, his doses of drugs were decreased, and he has been awake a little more. His pulse was down. While he was awake, he was able to nod and shake his head when his nurses and visitors asked him questions. A couple of problems that he faced today were diarrhea and air in his stomach--this may have been caused by a bacteria in his digestive tract; we're still waiting to hear about what it is (if there is one). They also stopped feeding him since his stomach was hurting him.

Before I left his room tonight, the nurse told me that the doctors may decide to remove his breathing tube tomorrow and continue to decrease his medications. We sure hope they do this since it will allow his throat to start healing and him to communicate verbally.

Hope you've all had a great night. Another update will show up tomorrow, hopefully with more good news! Again, thank you to all of you for your faith, prayers, and well wishes.

Sunday, October 18, 2009

Day 7 update

Nathan continued to do well tonight. He has a slight fever, continues to pee out extra fluids (he's still somewhat swollen), and his other numbers look good. His day nurse said that in a best-case scenario, Nathan would be out of the ICU in three days and out of the hospital in seven. Both his day and night nurses strongly hinted that Sarah should sleep at home tonight. Two reasons for this--they're trying to have him sleep as much as possible tonight in preparation for a big day tomorrow, as the doctors will most likely try to start weaning him off the ventilator tomorrow. This will surely be hard on him and we hope that he performs up to expectations. The other reason is that Sarah will most likely want to be well-rested for when he's out of the ICU and doesn't have constant nurse attention, since she will be taking up some of that slack.

Several nurses said that we should expect him to recover fully from this ordeal, for which we are so happy and grateful to Heavenly Father. Please continue to keep him in your prayers for his big day tomorrow! We love you all and are so grateful for your continued support (prayers, fasting, well wishes, phone calls, and emails).

--Jarom and Sarah

Day 7 update

A lot has happened since my last post. During Saturday night, Nathan's left lung collapsed, which required the doctors to switch him over to the more conventional ventilator. This was done while Sarah was present. His chest x-ray at the time looked really bad--tons of stuff in his lungs. All of the crap was in the left lung, while the right lung was mostly open. This imbalance caused the lung medicine to follow the path of least resistance (right lung). This is why the doctors went with the other ventilator--the oscillator ventilator was making things worse for Nathan's lungs. Sarah was right in the middle of the action as the doctors were discussing what to do and how to proceed.

Sunday morning has seen a big change for Nathan. He is resting comfortably, with all numbers looking good on the conventional ventilator. The left lung looks better than last night--a "night and day" difference according to Sarah, who looked at both chest films. He is now off of the paralytic medicine, which means that he is more aware of what is going on from time to time. It has been great for Sarah and me to be up here with him today. We're grateful to Mom and Dad, who took the other two kids to church and have been keeping an eye on them this afternoon.

Saturday, October 17, 2009

Day 6 (cont.)

Tonight Nathan's status has not changed much. They have turned his ventilator down a little since his carbon dioxide levels have dropped (this is a good thing). The next goal is for his lungs to get strong enough to switch to a different ventilator that allows for him to do more of his breathing on his own.

The nurses continue to suction his lungs. Nathan doesn't like this very much; sometimes he fidgets and grimaces since it makes him uncomfortable. The good thing is that he is improving and not getting worse. He has had two days and nights of not getting worse now. :) More tomorrow.

Nathan's hospital update, day 6

Hi everyone. Sarah and I decided that we would start posting updates about Nathan's condition on our seldom-used blog. The blog is happy to get some use. :)

Today is Nathan's 6th day in the hospital. I (Jarom) spoke with his nurse a couple of hours ago. She said that his blood pH is still good and that he is still quite swollen. They have him on a diuretic to help with the swelling. Sometimes this diuretic raises blood pressure, so they had him on some blood pressure medicine for awhile. However, his BP has remained good, so he's off the BP medicine now.

They still have him on the "oscillator" ventilator, which is doing all of the breathing for him right now. The doctor's plan is to keep him on the oscillator for at least the rest of today--they tried to get him switched over to a different ventilator last night, but he didn't go for it. His oxygen saturation was good, but his lungs were not strong enough to help with the breathing like the doctors wanted. So we're in a holding pattern now, waiting for Nathan's lungs to regain enough strength to get switched over to the other ventilator.

Here are a couple of pictures. The first is Nathan with Jarom at his first BYU football game on October 2. The other one is how he looks in the ICU.

For those who haven't heard about Nathan's illness, here's the quick rundown:

  • Nathan developed a croupy cough on Sunday evening
  • Sarah took him to our local clinic Monday morning, where the doctor said his lungs were clear
  • Monday evening, Nathan had a fever and shortness of breath
  • Jarom took him to the ER Monday at about 10 pm where an x-ray showed pneumonia in his lungs
  • Things got more complicated when the nurses intubated him and triggered a gag reflex, which caused him to vomit. He aspirated the vomit/stomach acid into his lungs.
  • Nathan was then life-flighted to Primary Children's Medical Center at about 1 am on Tuesday morning. Further testing showed that the pneumonia was brought about by the H1N1 flu virus. The aspiration in his lungs caused bacterial pneumonia as well.
  • He got worse until Thursday night, when things seemed to level off and not get worse anymore.

Loranna is doing quite well--enjoying preschool, making new friends, and doing playdates with those new friends. Daniel is making lots of new sounds and moving around by scooting backwards. He says "Ge ge ge" when he's happy and "Baa baa baa" with a sad sound when he's sad.