Nathan got to come home from the hospital this evening. Yippee! He is doing fairly well and we are really excited to be home. Juggling the other kids, work, sleep, meals, and the rest of life is just so difficult when Nathan is in the hospital.
After a few more tests, we determined that Nathan does not need surgery, now. We will keep an eye on the hernia and hope that it does not get worse. It is not predicted to get better, but it may or may not get worse. The big downside of this type of hernia for Nathan is potential for increased reflux. And for Nathan, that means increased risk of aspiration, more pnuemonias, more discomfort, etc. But the other tests show no significant risks at this time which is better than the downside of the surgery options.
The infection (whatever it was) seems to be mostly gone. His fever has been gone for more than 24 hours and he has not required supplemental oxygen all day. His spirits are back up and he is chatting loudly in his own bed as I type. I believe he is out of the woods with this illness, although it feels like we've all lost another 2 weeks of our lives. Somehow we made it to Madison's first performance in a school play last night (thanks to Nathan's wonderful nurses who stayed with Nathan and babysat Zachary).
We did have a couple problems during this hospital stay. The first was a medication snafu. It is our first issue at this hospital which is very dissapointing. By last night, I had gotten too comfortable in the staff to do things right for Nathan that I did not give each nurse the full line up of questions before every med was administered (which I usually do). Yesterday, the docs took Nathan off his IV meds and switched to oral meds which we dispense thru his feeding tube. Since Nathan is on the "no carb" ketogenic diet for seizure control, the medicines that he receives cannot have any carbs (sugars, etc.). We were so careful to be sure that the barium in the barium swallow test and everything else dispensed to him through the week was carb free. But somehow the oral meds they swithched him to last night contained sugar without our knowledge. Nathan's seizures were sooo bad today. After his 3rd dosage of one of his meds today, I accidently pulled his feeding tube loose and the meds spilled on me. My first thought was concern that he would miss that dose. But my 2nd thought was - hey, that smells & feels like sticky sweet medicine. So, I questioned the nurses, pharmacist, & doctors only to find out that they all made a mistake. Ok, so this was not a life threatening mistake. But it is a huge mistake to make for a patient who is getting some or total seizure control on the keto diet. This is the one hospital in the Sacramento area that actively prescribes & monitors this diet. For Nathan, we don't know how out of balance this will send him or for how long. He's only recently started getting the benefits of a ketotic state, so we don't know how hard it will be to get him back. Lesson learned for our next visit never let my guard down, even for a sleep deprived second.
The 2nd problem that happened was that his broken shoulder worsened. He had been pain free for about one week when he went to the hospital, but he is now in pain again. The painful crying first occured when a nurse was changing his nightgown and was moving the right arm. I thought she might have injured it accidently, so I had the hospital re-xray it to see if had fractured again. It turns out that the fracture has not changed at all on xray. This means that the fracture had not recovered as it should have after 2 weeks. Why the pain suddenly came back is inexplicable, but he sees the othepedist on Monday so we will hopefully understand more then.
On the upside, our excitement for the day was meeting Celebrity Tyler Hilton. I did not know that at the time, but he came into Nathan's hospital room and sang/played the guitar. I thought he was a volunteer musician/therapist making the rounds to cheer up patients, but after he came in and started singing, a crew came in behind him with cameras and releases to use Nathan's pics for PR purposes. If you don't know who I am talking about - he is on the show "One Tree Hill" and he also played Elvis on Walk The Line. It's sad to say that I'm either too old or too out of mainstream culture to have a clue who he is. His music is very good, so maybe someday Nathan can say he knows a superstar. Nathan got an autographed picture as well, which we will hang on to just in case.
Thank you all for your prayers and phone calls and emails. We couldn't make it through all the ups and downs without you in our lives. Nathan has a wonderful cheering team that makes his spirit stronger.
Until we write again....
Saturday, May 17, 2008
Thursday, May 15, 2008
Mystery Diagnosis Part II
Well, the plot thickens. We have some answers, but also more questions. Nathan does have a hiatal hernia. And for those of you (like me) that wonder exactly what that is, I've copied the definition from webmd - "A hernia occurs when one part of the body protrudes through a gap or opening into another part. A hiatal hernia forms at the opening in your diaphragm where your food pipe (esophagus) joins your stomach. Part of the stomach pushes through this opening causing a hiatal hernia".
Cause unknown. Impact unknown. Next steps - unknown. Reason for fever & high white blood count - still unknown.
As we have learned thru our hospital stays, there is often lots of talk about many different courses of action before there is ever a true recommendation. For those that are weak of heart, it is a tough road. Luckily, my typical worrisome self has somewhat mellowed thru the last 3 years. I kind of just wait until the doctors get to their own recommendations - bringing in all the various experts and then balance that against our family wishes. Nathan has been 'threatened' with many surgeries thru the last 2 years. For this hernia, one doc thinks he needs surgery and another doc thinks he does not. Typically, surgery would not be done for this type of hernia, but opinions change when an immobile child with feeding tube and cerebal palsy is the patient. So, we will wait this one out to see where it leads us.
In the meantime, the family is hanging in there. Thank you all for your prayers and well wishes. It means a lot to Nathan and the family.
Cause unknown. Impact unknown. Next steps - unknown. Reason for fever & high white blood count - still unknown.
As we have learned thru our hospital stays, there is often lots of talk about many different courses of action before there is ever a true recommendation. For those that are weak of heart, it is a tough road. Luckily, my typical worrisome self has somewhat mellowed thru the last 3 years. I kind of just wait until the doctors get to their own recommendations - bringing in all the various experts and then balance that against our family wishes. Nathan has been 'threatened' with many surgeries thru the last 2 years. For this hernia, one doc thinks he needs surgery and another doc thinks he does not. Typically, surgery would not be done for this type of hernia, but opinions change when an immobile child with feeding tube and cerebal palsy is the patient. So, we will wait this one out to see where it leads us.
In the meantime, the family is hanging in there. Thank you all for your prayers and well wishes. It means a lot to Nathan and the family.
Mystery Diagnosis
Dear Friends,
Sometimes I feel like our (or Nathan's) life should be captured on a "Mystery Diagnosis" series. Nathan is back in the hospital, this time with another unknown problem.
To catch everyone up, Nathan's pneomonia worsened last week. Last Friday we were sent to the hospital by the pediatrician, but then sent back home with different medications by the pulmonary doctor. On Monday, we had a checkup with the pulmonologist who agreed with our assessment that Nathan was recovering as expected. But on Tuesday afternoon, things took another turn for the worse. His fever spiked sky high again along with a lot of other symptoms. Tuesday night was rough. Then, yesterday morning we took him back to the pulmonologist. He sent us all over town for blood tests, stool samples, and chest x-rays. After 4 hours of testing and running around, we went back to the doctor to review the results. According to his chest x-ray, it appeared that Nathan's stomach was in his chest wall on top of his left lung so he sent us straight to the hospital.
Now, another 15 hours later, we are in the ICU at Sutter Memorial hospital (our home away from home). All of his tests thus far have stumped the docs. His body shows lots of signs of infection, but no more evidence of pneumonia. A GI doc will be performing a barium swallow study on him in a few hours to verify or rule out a hiatal hernia (which is the most probable theory they have right now). The hernia should not cause fever/infection, so perhaps he has something else going on, too. A surgeon is also coming in for a consultation this morning which I guess suggests they think surgery will be on his agenda one way or another.
Anyway - please say a little prayer for Nathan for a speedy recovery (and a not so bad diagnosis).
I just discovered wireless in the hospital so as we know more I will post updates.
Love, the McCues
Sometimes I feel like our (or Nathan's) life should be captured on a "Mystery Diagnosis" series. Nathan is back in the hospital, this time with another unknown problem.
To catch everyone up, Nathan's pneomonia worsened last week. Last Friday we were sent to the hospital by the pediatrician, but then sent back home with different medications by the pulmonary doctor. On Monday, we had a checkup with the pulmonologist who agreed with our assessment that Nathan was recovering as expected. But on Tuesday afternoon, things took another turn for the worse. His fever spiked sky high again along with a lot of other symptoms. Tuesday night was rough. Then, yesterday morning we took him back to the pulmonologist. He sent us all over town for blood tests, stool samples, and chest x-rays. After 4 hours of testing and running around, we went back to the doctor to review the results. According to his chest x-ray, it appeared that Nathan's stomach was in his chest wall on top of his left lung so he sent us straight to the hospital.
Now, another 15 hours later, we are in the ICU at Sutter Memorial hospital (our home away from home). All of his tests thus far have stumped the docs. His body shows lots of signs of infection, but no more evidence of pneumonia. A GI doc will be performing a barium swallow study on him in a few hours to verify or rule out a hiatal hernia (which is the most probable theory they have right now). The hernia should not cause fever/infection, so perhaps he has something else going on, too. A surgeon is also coming in for a consultation this morning which I guess suggests they think surgery will be on his agenda one way or another.
Anyway - please say a little prayer for Nathan for a speedy recovery (and a not so bad diagnosis).
I just discovered wireless in the hospital so as we know more I will post updates.
Love, the McCues
Monday, May 05, 2008
Get Well Wishes
Well, as I mentioned in last week's udpate, Nathan's good news is usually hampered with some not so good stuff. Somehow we seem to jinx ourselves when we share the good news. Nathan broke his shoulder last week. I wish we could say that we know how, but we really don't know. It could be from routine physical therapy, contractures, or even a seizure. The break is in a strange place for a typical movement, but it is what it is and now he must recover from it. He first started letting us know he had some discomfort on Wednesday, and by Friday he was yelling/crying every time we moved him. So, another visit to xray lab & ER confirmed the reason. He had a painful weekend, but seems much better with the pain today. They don't cast for this type of break, so he is wearing a sling and is not supposed to move his arm for several weeks.
Unfortunately he also has pneumonia now (I never should have bragged about just 1 pneunmonia). This one is not confirmed, but he has all the symptoms (fever, oxygen desaturation, lethargy, junky sounding lungs, etc.). With the broken shoulder, we don't want to put him thru the pain of chest x-rays just to get it confirmed. So, for now, he is being treated at home with a strong antibiotic & round the clock nebulizer treatments.
The poor guy. He endures so much, yet stays so sweet. Please pray for a speedy recovery and no hospitalization this time around. Thank you all for keeping him in your thoughts.
Love, the McCues
Unfortunately he also has pneumonia now (I never should have bragged about just 1 pneunmonia). This one is not confirmed, but he has all the symptoms (fever, oxygen desaturation, lethargy, junky sounding lungs, etc.). With the broken shoulder, we don't want to put him thru the pain of chest x-rays just to get it confirmed. So, for now, he is being treated at home with a strong antibiotic & round the clock nebulizer treatments.
The poor guy. He endures so much, yet stays so sweet. Please pray for a speedy recovery and no hospitalization this time around. Thank you all for keeping him in your thoughts.
Love, the McCues
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