Tuesday, January 14, 2014

Luke is once again back in the hospital needing your prayers

I just wanted to give a quick update on Luke as I lie on the fold out couch in his hospital room. Luke's pediatrician and I decided after dealing with 19 straight days of fevers and then recently dealing with Luke's constant twitching and moaning in pain that he needed to be admitted into the hospital to figure out what is going on.

We got to the hospital around 5 pm on Monday evening and I was once again doubting that I made the right decision to bring him in since his fever was gone and he seemed to be doing a little better. They did an X-ray, bloodwork and swabbed his nose to try to get some answers to what is causing the fevers and pain. Thankfully his X-ray looked about the same, no worse, his bloodwork came back improved a little bit also. And then we finally got results from the nose swab late this afternoon, good news the flu is gone and no new viruses showed up, Praise God.

The Dr. decided that we should spend at least one more night here to see if we can get him more comfortable with no more grimacing and constant twitching. He's doing good tonight. His heart rate is lower than it's been in weeks, I'm pretty sure it's the tordahl they are giving for the  pain relief. He's still on quite a bit of oxygen so we need to get that weaned down.

Please pray that the constant moaning, twitching and pain he is showing to us will be gone and for his oxygen needs to get better. I had orginally planned to make Luke's food formula tomorrow since he is currently finishing up his last bit from the last batch we made. I'm thanking the Lord for Amy who volunteered to make his food along with our good friends Laura and Bonnie and of course with Isaiah and Zeke's to help get it done without me.

I'm so ready for Luke to be healthy again and for us to get home, please pray it happens soon!

Thank you,
Luke's Mommy Sue

Thursday, January 09, 2014

FRUSTRATION is the word that keeps coming to my mind today, as Luke is still dealing with high fevers and not seeming to get better

Luke at one of his many visits to the hospital
Fevers Luke's fevers are almost constantly above 102 and often above 103, we continue to give him Ibuprofen and Tylenol around the clock, nothing seems to help. I keep hoping we are not doing damage to his kidney's.
Respiratory problems continue, he is on at least 3 to 5 liters of oxygen all the time, still needing to be suctioned and coughed often.
Unsure if we are still just dealing with the FLU or if he's contracted a secondary infection as his white blood count was double on Tuesday of what it had been on Sunday when he left the hospital.
Sleep deprived, that explains exactly what Luke is as he has not been sleeping good since they took him off the the ventilator, sometimes he goes 30 hours before sleeping, Gordy and I are also very sleep deprived too as we have been having to keep his meds and suctioning going around the clock.
Totally not sure if we made the right decision to bring him home on Sunday from the Hospital, it seemed like the right thing to do that day since his fever had come down that one day.
Really high heart rate, Luke's heart rate has continued to stay high, which we are sure is a result of his fevers and pain, though we're not sure where the pain is coming from, which is so hard!
Action vs. non action, do I keep pushing Dr.'s and the hospital to do something or do we just have to wait out the flu, which I've heard can last at least two weeks.
Trying to be patient today as I've waiting all day long for a call back from his Dr.'s office to see what we should do, if anything new.
Increased muscle spasms and constant jerking, Luke looks like he's in constant pain and discomfort which is so hard to see.
Ongoing this sickness seems like it's never going to end.
Not wanting to give up on God, though can I be honest to say at times I wonder if He's really hearing our prayers. I know that's crazy and NOT true but I'm just keeping it real:-/  I'm so thankful that when we are wavering in our faith we have so many people that stay strong to carry us along.

Tuesday, January 07, 2014

We've hit the rewind button and once again we started the year with Luke in the PICU and we're headed back to the hospital today, praying he doesn't have to go back to the PICU again

Here is our family Christmas Eve, Christmas caroling and delivering cookies to our neighbors
We feel like someone hit a rewind button and we've begun our year almost the exact way that we began 2013, in the hospital with Luke in the PICU. Isaiah starting feeling sick December 21st, but we didn't realize how sick he really was until he decided that he was unable to get out of bed on Christmas. The next morning Zeke and Lily woke up not feeling great, but after a long sleep Lily said she was feeling better, as the day progressed it looked like Luke was coming down with the same sickness. Amy had bought tickets for Lily to go see the Nutcracker in Seattle for her birthday and of course it was that day, I too had planned to go with them. I went back and forth on whether I should go knowing that Luke was getting really sick and also wondering if Lily was really up to going. We decided to go and had a great time, but came home not feeling so good myself. The next day I stayed in bed all day, thankfully Gordy did not come down with it or we would of been in real trouble.

Pictures from the Nutcracker in Seattle
I decided on Monday December 30th to take both Luke and Isaiah into the Dr. as they both seemed to be slow in getting better. The Dr. didn't think that Luke's lungs sounded too bad but went ahead and did a x-ray which revealed that Luke did indeed have a bad pneumonia brewing. He also ordered blood work which revealed a very high CO2 level so late that night we received a call from a Dr. telling us we needed to follow up the next morning with his Dr. After talking with his Dr. we decided that I should take him into the hospital, we went to the ER and was actually sent home because he was only on 3 liters of oxygen and I assured them that we could handle that at home.

Luke the first visit to the Hospital
The next day after working to get all our Christmas stuff put away Gordy and I decided to take the kids out to dinner. Just as we had finished eating out dinner I got a call from one of our wonderful caregivers for Luke telling me that he was jerking and not breathing. We immediately got in the van and headed down the I-5 going very fast. When we got home Luke was still not doing good, he was not responding to us at all and he was not breathing. We tried to get him to cough and to respond with no success so we called 911. I ended up going with him in the ambulance to the hospital, the ride there was a nightmare as they continued to not be able to get him to breath or respond. When we finally got to the hospital they immediately put in a breathing tube and within minutes he began to wake up, what a miracle to see him looking around the room and gagging on the ventilator.
Lily visiting while Luke was on the ventilator
Luke ended up in the PICU on the vent for two days. The day they took it out was very hard as he began to jerk in pain and didn't want to cough anymore, I'm sure his throat hurt. He came home from the hospital Sunday afternoon, he seemed to be doing better that day and then once again Monday he started getting a fever again and needing more oxygen.

The day the vent came out
The kids and I went on a few walks around Wrights park when they came for visits

The first time Luke slept in days

On the way home
Here we are Tuesday morning and I'm getting ready to take him back to the hospital we cannot get his fever to come down and once again he is needing more oxygen then we are comfortable giving him at home. Please pray that Luke will get over this flu, once and for all and that this visit to the hospital will be a quick one. Also pray for my other children as it is so traumatic and hard for them to have me live at the hospital with Luke. This life we live is HARD and it never seems to get easier, the only way we continue on is with prayers and help from Jesus.

Love in Christ,
Luke's Mommy Sue