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....
1 comment:
Well said.
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