Friday, March 30, 2012

I went with Option #3 and I'm so glad I did, Luke has pneumonia again:-/

After much thought and wavering on my decision, I finally decided to go with Option #3, cancelled Luke's Dentist appointment and didn't take him to HBOT. I also e-mailed his Pediatrician who just happened to be out of the office that day, but the nurse called to set up an appointment for me to take him in today.
I almost cancelled his appointment and when I got to the Dr.'s office was kicking myself for wasting the time to take him in, but I'm glad I didn't cancel the appointment. Dr. G decided that I should get an x-ray of Luke's lungs to be sure he wasn't dealing with pneumonia, I was so close to talking him out of it, but am glad I didn't. The Dr. looked at the x-ray in his office and told me that it didn't look like pneumonia to him and as I looked at it I didn't think it looked that way to me either. But after getting home I got a call from his Dr. saying the radiologist said that, yes it's pneumonia, ERK! Thankfully Gordy was out running some errands so he was able to go pick up his antibiotic. This is the first time since December Luke has pneumonia, yes I am thankful that he's hasn't had it in a few months, at the same time I'm so bummed that he has it now.

I was getting ready to feed 7 boys dinner when the call came in from the Dr. Isaiah who happens to be turning 13 next weekend had some friends over for a birthday celebration, which after dinner I took them skating. We had a blast skating, what a blessing it was to be able to just go have some fun with the boys tonight, it was just the right thing to get my mind off the disappointing news I got earlier in the day.
Here are the guys being silly as they wait in line to go skating:-)
Luke does seem to be doing better tonight, he has only alarmed a few times since I've been home from the skating rink. I better head to bed as I will need to be up at a decent time in the morning to feed all the boys staying over tonight:-)

Love in Christ,
Luke's Mommy Sue

Thursday, March 29, 2012

Oh, what to do, what to do?? What would you do if you were in my shoes??

I'm in a quandry, Luke has been fighting getting sick lately, which has been going on for about a week now. Last night was a NOT a good night at all, getting up every few minutes to fix his oxygen cannula or change the amount of oxygen he was needing. The reason I haven't taken him to his Dr. is because he doesn't seem to be running a fever, therefore I don't think he has pneumonia or anything major. I'm thinking it might be the weather changing or some allergies, who knows though, I sure don't, would you?

Today I am supposed to take him to the Dentist to get his teeth cleaned and then go out to HBOT for a dive. So here's the problem, he's on oxygen and sounds terrible, though he has no fever so I'm not sure if he's sick or just dealing with what seems to be his normal crud. Oh what to do??

  • Option #1 take him to the Dentist with his oxygen tank going and then head out to the HBOT chamber, knowing that I may need to pull the van over a few times to suction him.
  • Option #2 Call his Pediatrician for an appointment to get him checked out today.
  • Or option #3 cancel his dentist appointment and HBOT dive and stay home with him today and wait one more day before I take him into his Pediatrician.
  • Oh what to do?? What would you do?

People always tell me that they "don't think they could do what I do", they say things like "I don't know how you do all you do", another words they are thankful that they aren't in my shoes. I get that, I really do. Sometimes I don't know how I do all that I have to do either, the decisions I have to make some days are enough to send me over the edge. I often respond to those statements with I just do what I have to do, you would do the same if you were in my shoes wouldn't you? So I really am curious to know what you would of done in my shoes today, would you have gone with Option #1, #2 or #3? I don't often ask for comments but today I am, please humor me with your response:-)


Luke's Mommy Sue

Tuesday, March 27, 2012

Luke turned nine and I wish I could say all is fine, but no here is: The Good, The Bad and The Ugly Truth about Luke at this time

Let me start with the good news, Luke turned nine on March 10th. Luke's birthday is a very bittersweet day, so so glad that he is here with us still, so so sad that he has not made more progress this past year. The challenge of having a birthday party for a little boy that should be excited about opening his presents that he will want to play with, eating his cake and ice cream or just the simple task of blowing out his candles are realities that have not happened these past 8 birthdays. We are blessed by the fact that his smiles told us that he was enjoying himself, that day:-)

It's hard knowing where to begin to share with you all the bad news we've received about Luke lately. At his GI appointment we found out that he's still under 50 pounds, at that size he's not even registering on the growth charts. The good news that day is that the Dr. did say that Luke is looking good, just wants to see him gain some weight, more good news is that fact that he's easier to carry at his current weight, but I realize that he really does need to gain some weight, which might be bad news for our backs.

My goal lately is to get Luke into the HBOT chamber as often as I can, the challenge has been that I've already had to cancel 3 times because he's been too congested to go in this past week.

More bad news is the fact that we still are not getting the little seizures he's having under control, the medication he's been on has not been working and I'm reluctant to increase the dose as it causes Luke to get "junky" congested each time I give him that medicine. We go back to see the Neurologist on May 1st, to discuss other options.

The Ugly news was hearing the results from the recent MRI he had done on his knees. His Ortho Dr. called me the next day saying that his knees don't look good, in fact his knee caps are no longer on the top of his legs they have moved to the outsides of where they should be, he also no longer has a good curve in the cartilage. This news boils down to the fact that the Dr. wants Luke to do another Baclafen pump trial to see if we can loosen him up before she does surgery on his knees. The big bummer is the soonest we can get in to do a pump trial is May 8th, that means waiting another month to do anything to help his legs.

Some great news is that Amy is marrying the man of her dreams, yep Lance asked her to marry him and she said yes:-) So that means this summer is going to be a very busy time with 2 grand babies coming in July and then a wedding in August. Exciting times!!!

I wish that somehow they could get Luke scheduled sooner for the pump trial so that we can get the ball rolling on his surgeries. Not that I want Luke to have more surgeries, in fact the thought of more surgeries literally makes me feel sick to my stomach. But the plain fact is that if we don't get his legs bending we are soon not going to be able to take Luke out anymore because he will be unable to ride in our van. As it is right now getting him in and out of his bed, the bathtub and our van is extremely challenging to say the least and each day we do nothing about his legs make it more of a challenge.

I don't mind sounding desperate when I ask you all to continue to pray for Luke, PLEASE pray for his seizures to stop, PLEASE pray for his legs to loosen up and bend, PLEASE pray he will start to put a few pounds, PLEASE pray that Gordy and I will continue to stay strong and that we won't lose hope, PLEASE pray we will continue to hear God's voice when it comes to making all the difficult decisions we have to make concerning the upcoming surgeries that Luke has had to endure. PLEASE pray . . .

Love in Christ,
Luke's Mommy Sue

Just thought you might like to know that Gordy and I did have a nice time on our break away last month. We had a great time exploring some new beaches, a lighthouse, a waterfall and a octopus tree that we had never seen before all on the Oregon coast near to Tillamook. Though it was a bit stressful at times, because Luke got sick the day we left and each day we wondered if we should go home, but we decided that we HAD to renew our batteries if we were going to have the strength to continue on this journey we've been on now for so very long.

Tuesday, March 06, 2012

Please pray for Luke's MRI to go smoothly today, for him to start sleeping better at night, for his seizures to stop, for his knees to bend . . .

Sometimes it is so hard to blog, especially when I feel so defeated and down. I know that God has a plan for all of our lives and I trust Him no matter what happens, but some days my faith feels shaky and the hope that I desperately hang onto feels almost gone. I know God's word tells us not to be anxious about anything, to trust in the Lord with all of our strength and not to lean on our own understanding, but some days this is so hard to do.

In a few hours from now I take Luke into the hospital to have a MRI done on his knee's, the thought of having to have him sedated for hours during this procedure sends chills down my spine. I debated long and hard whether sedation was necessary, but after talking with tech that will do the MRI it was decided that if Luke moves at all the MRI would have to be done over again and putting him into that machine another day is just not acceptable to me.

Here I sit at the computer knowing that I will need to get up in a few hours to get ready for another day spent at the hospital, another day putting Luke under sedation, another day of having to put all my trust in Jesus to bring him through another procedure, another day of pure boredom, another day spent away from my other children, another day . . . You may be saying to yourself why are you awake Sue? The answer is because Luke is still not sleeping, he's back in his room as I type this wide awake, yelling for me to be by his side, I have prayed with him to go to sleep, I have begged him to go to sleep, he just doesn't even seem tired at all, it's so frustrating. I know that once he goes to sleep his oxygen numbers will plummet for this is usually what happens once he's out for the night. So what's the use if I go to bed now I will just be up soon with his alarms going off, yep it's frustrating to say the least, especially since I have to be ready to go to the hospital in about 4 hours.

Please won't you pray that Luke's knee's will still have good rounded cartilage on the end of the bones so that Luke will be able to have the knee surgery that will once again allow his knees to bend. I realize that God could just make his knee's bend and we wouldn't need this surgery, that's my first prayer, but for some reason God has not allowed his knee's to bend now for 7 long years. The bigger and taller he get's the more challenging it is to carry him, to put him into the bath tub, to get him into his car seat, to find a wheel chair stroller that will accommodate his legs and to take care of all of his needs. We will find out the results of the MRI in about 2 weeks when we go back to his Orthopedic Dr.

FYI: Luke has a GI appointment on Wednesday afternoon, I hope to hear that they are happy with his weight progress, though I'm thinking they probably won't be since he is still only weighing 50 pounds. Luke has also been having more seizures lately, I've called the neurologist office and we are currently playing phone tag, please pray that God will either stop these seizures or we will be able to find a medication that will help stop the seizures without all the horrible side effects most seizure medications have.

Thank you in advance for your prayers,
Luke's Mommy Sue