Sunday, April 25, 2010

4.25.10 - Home sweet home!

We are finally home! We got home about an hour ago and the oxygen people met us here to set up the big oxygen compressor for us. It's pretty noisy... I guess I have never seen one like this before. But the cool thing is that the extension sets come in sizes up to 75 ft...that's pretty far! So right now we have it set up in the living room, but can move Liam almost anywhere in our house.

Liam seems to be very happy to be home. He is sound asleep right now, but was laughing and smiling since we got home. It is a little nerve racking to not have the monitors hooked up to know where his oxygen level is at, but he seems to be on the upside of getting over the virus. He is coughing a lot less and his chest congestion is clearing a lot better. Hopefully, we will only have to be on the oxygen this week.

We go back to see Dr Verma on Friday to follow-up and I will probably have him checked out by our pediatrician midweek sometime. What another adventure this has been! Thank you everyone for all the prayers this week!

Saturday, April 24, 2010

4.24.10 - Minor setback...

My mom stayed at the hospital last night with Liam so I could go home and get a good nights rest. Liam is still doing about the same. When I saw Dr Verma yesterday he said he would be fine sending us home with oxygen. He said he would still like Liam to get a little more stable here first though and have a few more "CPT" treatments (where they basically pound on his chest to loosen up congestion). Dr Verma thinks Liam will only need the oxygen about another week or so and that he should be getting better by then.

Last night though, Liam vomited after his 9 pm feeding and then two more times after both his morning feedings. I have not seen Dr Verma today, but Im assuming this is going to set us back a bit on being discharged. My mom said after he threw up his sats went way low and took awhile before finally leveling out. Both times Liam had coughing fits right before, so I'm guessing that is what's causing it. They still have him at 3 ltrs. of oxygen .

I was telling my mom that I am comfortable having him here as long as it takes to get him better. I am a little worried about taking him home on oxygen, because basically it will be up to our judgement as to when and how often Liam needs it. I just have to trust that the Lord is there to guide us and to listen to Him when He is prompting us to act.

Hopefully Dr Verma will be by again this afternoon so we can talk to him about the minor setback we've had.

Friday, April 23, 2010

4.23.10 - Still here...

Liam had a pretty good night last night. He slept about 7 hours straight and then went back to sleep another couple hours after a short wake period at 3 am. I noticed his sats did not get as high as the previous night, but the were still in the upper 70's. They still have not dropped him down from the 3 ltrs he was on yesterday. His voice is a little more coarse sounding today, but he us having shorter burst of coughing and his mood has improved dramatically. I think he is slowly starting to feel better finally.

I went into work for a few hours this morning while my dad was here at the hospital with Liam. A social worker called me and told me they were getting together a prescription for some at-home oxygen for us. I have not seen Dr. Verma today, so I am anxious to see what he has to say. Hopefully we will get to go home this weekend and just continue the oxygen therapy at home.

Liam is down right now for a much needed nap, so I think I'll do the same. Hopefully I will know more later after the Docs make their rounds.

Thursday, April 22, 2010

4.22.10 - Another night....

Still at the hospital...Liam is finally sleeping peacefully right now. They actually had to increase his oxygen to 3 ltrs. a few hours ago. He kept desatting into the 40's and 50' s and taking awhile to recover. But hopefully they will drop him back to 2 later tonight as he sleeps since his sats do really well while he's asleep. Overall he seems like he feels better. We got some smiles out of him today and this afternoon he hasn't been quite as fussy as he was yesterday. His cough seems to be improving slightly and they are going to have a "CPT" come in to help loosen up his chest congestion every few hours... Of course the first time they came tonight Liam had just fallen asleep... Go figure, so I told her she had to come back later. Just have to tell em how it is around here sometimes!

Needless to say my expertise at becoming a hospital mom is improving. It amazes me the amount of wisdom the Lord provides you and you don't even realize it until you through the storm and the dust has settled!! I'm learning to recognize it a little sooner this time around :)

No definite news as to when we get to break out of this place, but I told the nurses Id rather be here too long than too little. In all honesty, Id rather deal with this here than at home. Sooo, another night with the monitors and alarms is worth it to me! And with that said Im off to try to get some sleep :)

4.22.10 - Still at Medical City...

Liam is doing about the same today - not much better but not any worse either. He is still on 2 liters of oxygen... They have not started weaning him down yet as his sats are still fluctuating too much. He is asleep right now and his sats always get a lot higher when he is resting. They did an x-Ray of his chest this a.m. which came back clear and normal. Dr. Verma did say that his surgery will be delayed and postponed until he is over this medoimmune virus. They had mentioned it may be pushed back 4 to 5 weeks possibly. We were not happy to hear that, but trust that it is in God's hands and His timing is always perfect.

Will post more tonight - thanks to everyone for your continued prayer, love and encouragement!

Wednesday, April 21, 2010

4.21.10 - Waiting for the virus to run it's course...

Liam was moved to a regular pediatric room about 5 this evening. My mom was here while I went home for a bit to get a couple hours of sleep and pack up some stuff for the hospital. Dr Verma came by while I was gone and said Liam does have a virus and we just have to let it run it's course and let his oxygen sats recover before we can go home. He seemed pretty certain we have nothing to worry about. My mom said he did not say anything about this delaying his surgery, so that is great!

Liam has been very fussy while he has been here... We think he is uncomfortable with the oxygen in his nose and just probably doesn't feel good all around. He finally fell asleep about 30 minutes ago, so I hope he gets some much needed rest tonight.

4.21.10 - ICU at Med City right now....

We took Liam last night to urgent care due to a cough he developed that was worsening and causing him to choke and turn blue. From there they reffered us to take him to the ER at Childrens Plano. We were at Childrens Plano for a few hours and on request of our cardiologist was transported via ambulance to Medical City PICU for monitoring. Liams sats had been sitting in the 50s and they were concerned his shunt wasnt functioing right. We stayed overnight last night and Was scheduled for an echo this morning. The Echo went good.... The shunt is clear and working well... We just need to get Liam off the oxygen in order to get him home... He is at quite a high amount right now so could take some time...won't know for a day or so if he has an actual respiratory infection... We are praying the Lord is working it out for us as we speak! We beleive in Jesus name he will be healed of this and there will not be a delay for his surgery that is scheduled for next Thursday! Will keep everyone posted!

Sunday, April 18, 2010

4.18.10 - Time to get moving!

So, I think this is the longest time span of not posting on here...sorry bout that.  I have been feeling a bit under the weather the whole past week, so I'm amazed I had enough energy to get through the basics of my life.  I think I had an upper respiratory infection of some sort.  I went to the doctor on Thursday to get some antibiotics because it was not going away on its own.  I was a living posterchild for fun.  And now I think Liam may have caught it, which is not good, especially being 1 1/2 weeks before his surgery.  I have him on every natural remedy I can think of...Please Lord take care of this one for us!!  Luckily he is still sleeping at night and his cough does not keep him up or sound too bad yet. 

Anyways, needless to say a lot has gone on in our world since the last update.  2 Thursdays ago, we met with the Speech Therapist and it was a really encouraging meeting.  She basically asked us a lot of questions and then watched me feed Liam.  She was very surprised and encouraged by the way his voice sounds given his vocal chord issue and also how well he is eating and still sucking on his pacifier.  She said that was a huge piece of the puzzle that he already has mastered.  Score 1 for Liam - YAY!  She told us to keep doing what we are doing and that she will get a plan going to hopefully get him eating everything by mouth. I am back to feeding him everyday with her approval.  He seems to be liking it =)

The cardiologist appointment with Dr. Verma on Friday also went very well.  Liam is ready to go for surgery and we got a lot of our questions answered.  Liam's weight was up to 18 lbs. already and his sats were also reading higher, at 82.  But Dr. Verma did mention Liam was starting to look a little more blue around his lips this time, and he thinks the timing is perfect for the surgery.  I am so thankful for the team of doctors we have working with us on this.  They have been so helpful, encouraging and supportive.  We will meet with Dr. Mendeloff, the surgeon, the day before surgery after the do the heart cath.  Oh, and I did nail down what the name of Liam's corrective surgery is Complete TOF Repair - the website link has a great summary of what the surgery will involve.

Last weekend Dustin's dad came in for a visit from San Antonio.  It was great to have him here and get a picture of 3 generations of Johnsons

We are hoping Liam is well enough to go to our family reunion down in San Antonio in June.  It is a long standing tradition for us and Dustin has only missed going once his whole life.  It really is a great thing that his family takes part in and I hope we can continue to make it a tradition in our generation and Liam's.

I can't believe Liam's surgery is coming up on us so fast.  Dustin and I made the decision to stay at a hotel nearby the hospital the first night of surgery, just so we could stay late if we wanted and not have to fight Friday morning rush hour to get back to the hospital the next morning.  Everything seems to be all set to go.

Wednesday, April 7, 2010

4.7.10 - Midweek update

So I finally have a few minutes to spare to update the blog...I meant to post over Easter, but had such a relaxing weekend, time slipped by me!

Easter weekend was great - Dustin and I were able to go to church, thanks to my dad keeping Liam for us. Then we headed over to my parents for an early dinner and a photo shoot in the front yard - I think we got some pretty good shots...

No, I was not able to find a cute Easter outfit. I am limited to shopping at Target now because it's close by and not crowded if I have to take Liam with me...Unfortunately, for the first time, I was disappointed in the selection.  Usually Target is my staple...I can always find something I love.  Maybe next time...

Liam had a pediatrician appointment on Monday - His 6 month well check!  I can't believe he is that old already - it's crazy!  He weighed in at 16 lbs. 12 oz. - which is in the 50% percentile!  He was perfectly average, as his percentiles for length (26 inches) and head circumference were exactly at 50% too.  I'd say we are on the right track...couldn't have picked a better one! 

In talking with the pediatrician, I decided to play it safe and stop oral feeds for Liam until after his surgery.   I know, my motherly worries got the best of me, but I feel like this is a good decision.  Even though the swallow study indicated he was OK to start solid foods, its is still possible that he could aspirate, especially given his history with it.  What concerns me is that he has started getting a slight "seal" cough, that sounds a little chesty.  He started this a few days after we started the oral feedings and although it hasn't seemed to get worse, it definately isn't really going away or improving much.  Just to give background information, should Liam be aspirating, there is a high risk for what's called aspiration pneoumonia, when the aspirated particles get infected in the lungs and cause breathing difficulties/coughing/fever, etc.  This is very serious (potentially life-threatening) illness, especially in heart babies because it limits their intake of oxygen, when it is already at a very low level.  The pediatrician said it was most likely not aspiration, as his lungs sounded very clear.  However, she said it was fine to play it safe and not worry about the oral feeds right now.  I know too though that allergies have been rampant the past couple weeks, so hopefully this is the cause of the cough and not the food.  But I am a "play-it-safe" kinda person, so I think we'll sit this one out and pick up where we left off after his surgery.

We hopefully will get to finally meet with a speech therapist tomorrow.  Thankfully, our insurance approved us to receive in-home visits for physical therapy.  She will be working on Liam's upper body and core muscle building as well as feeding issues.  I am hoping this will also help prepare his body a little better for surgery too.  Needless to say, I am very anxious to hear what she has to say and what her plan of treatment will be for him.

And last but not least, we meet with the cardiologist for his monthly check-up on Friday.   With the surgery scheduled for the end of the month, we have plenty of questions for him! 

One last note before I hit the sack...I don't think I've mentioned it, but I am training this year to run the half-marathon at White Rock this year.  I have never attempted to run more than 1 mile at a time my whole life, so this should be interesting.  I am up to running 2 miles officially today!  A couple coworkers and I are diligently training and also holding eachother accountable to run every week.   I am wanting to run for a cause though, so I may get with our Amazing Little Hearts support group and see if we can't get a group together to raise awareness for CHD's and run for little hearts everywhere! 

Goodnight everyone!  I leave you with some random pictures that were too cute not to post

Thursday, April 1, 2010

4.1.10 - April is here...

So, I'm blogging from my phone app... They have an app now for everything it's weird! I just hope no one calls me while Im writing because I'm pretty sure it doesn't save it unless I post it!

Liam is what I call "sleating" right now...we put him to bed about 7:30 or 8 and give him his last bottle via tube at 8:30 or 9...he gets to eat and sleep at the same time - I truly envy him sometimes. He continues to eat well at his meal each day - we are on to carrots tomorrow night and I think Im gonna try adding a meal of rice cereal in the morning and see how he does. This feeding thing is really fun... It's kinda what you always dream of when you were little and used to play house and had a baby doll to take care of (at least for girls). Feeding the baby doll was important and probably the best part. Just funny how it's still like that for me! Except Liam is real and yes, it is real food we give him. And I digress...

Well all is quiet here tonight, Dustin is at Winstar with the guys and I'm at home listening to Liam sleat while I blog. Tomorrow is a day off for me so Liam and I will get to spend the day together...LOVE love love me days like that! And on the agenda tomorrow is finding a great Easter outfit for some family pics on Sunday!