Busy at the Hotel

Mason's stay here at the hotel on the hill (in Salt lake City) this time has been a busy one. Everyday his breathing seems to get a little easier, but he is still needing a 1/4 to 1/2 liter day and night. The goal is to get him back to room air, at least during the day, before we go home. Although, that is not what is keeping Mason here. We are going to finish out his antibiotic course via IV, rather than switching to oral antibiotics to be discharged sooner. There is concern that last month when Mason was sick, switching to oral antibiotics may not have completely cleared up his respiratory bugs.............and then it just got worse!

One huge bummer that was discovered on Sunday is that Mason's port has gone bad! Mason has had his port since May of 2010 and the hope was to keep it a few years. They can last up to 5 years. We use Mason's port for blood draws almost weekly (as an out patient) and then when needed he can get IV meds through it. It has been so nice and convenient. I just put numbing cream over the port area an hour before it needs to be accessed and then there isn't any trauma in the poke. Unlike, without a port, it is very difficult to find a good vein in Mason and becomes a very traumatic ordeal!

On Saturday, Mason's port wouldn't draw back blood, but it would flush just fine. The nurse putTPA (a clot-dissolving agent) into his line and let it sit an hour. This is to dissolve any little blood fibers or clots blocking his line. We've had to do this a few times before. On Saturday, after this his port drew back like a charm, just like the other times when we've done this. But, then on Sunday it wouldn't draw back again for his morning labs. This has never happened so close together before so the docs sent us to x-ray to figure out the problem.

The radiologist infused contrast dye into his port line and we then saw the true cause of why it wouldn't draw back blood. The end of Mason's line should be in his IVC (a large blood vessel that brings blood from the lower parts of your body back to your heart), but instead it had dropped down and turned into his liver. I was truly sad to see this because I have loved his port. The transplant team reassured me that he should be okay without a port because he is now at a point post transplant where he shouldn't need as many blood draws and what he will need should only take a finger poke. Thus, on Friday while Mason is still an inpatient he will go to the OR to have his port removed.

Mason has been a pretty happy boy this hospital stay except for when it's bed time (not a surprise), the IV team comes to visit to place an IV or do a blood draw, or a respiratory therapist comes to suction secretions or do CPT (chest physical therapy). But, even when they do come and he's mad about it he always says, "thank you". It is the sweetest thing! And it's sad too, because in his mind what he's really saying is, "okay you are done! So, thank you and now get out of here!!!"

Mason has earned a few balls as his prizes for being so brave for his blood draws:

Here is one of his, "thank you, but now get out of here moments":

(Mason is not liking the chest percussions the physical

therapist is doing. This is to help promote lung expansion

& loosen up the junky secretions he still needs to clear out.)

And of course Mason's favorite past time at the hospital is going out for walks in the wagon:

Getting ready to head out on a wagon ride.

Mason's been so good about wearing his

O2's and his mask out on walks.

While Mason is an inpatient for the rest of the week the transplant also thought it would be a good time to switch up some of his meds while he's being monitored and has daily blood draws. The one major change is that Mason is now taking Prograf instead of Cyclosporine as one of his major anti-rejection meds. So we may no longer need to shave down our little teddy bear's back , shoulders, forehead etc..... because it was the Cyclosporine that mostly caused that. Steroids can cause that too but he is on a very low dose now that it probably won't. Cyclosporine can also cause swollen gums and Mason's were starting get pretty swollen. This should be a good change for Mason over all.

Mason's also down to just one blood pressure med which is just once a day. Before this hospital admission he was still on 2 BP meds, 1 of which was three times a day. But, with the sedatives he was on while he was on the vent he didn't need ant BP meds. So far since then he's only needed to add one BP med back in. Hopefully it will stay this way!

We feel so grateful to be surrounded by great doctors and nurses here at Primary's! So many of which have known Mason since he was a newborn, that a hospital stay is almost like a little reunion. Although it would to be nice to have reunion else where, it is so wonderful to hear them say "Oh he looks so good. He's getting so big". For, they knew him when he was very blue, sick, and weak! Writing this also makes me miss all our friends we met at Lucille Packard last year who also took amazing care of my Miracle Mason. We love all of you (at PCMC and LPCH) for all you've done and continue to do for our special little boy.

Much Happier

Mason has made some great progress the last few days. Slowly his chest x-rays have gotten a little clearer each day. He still has a ways to go to get all of his junky secretions cleared out, but over all his lungs are much happier and he is feeling much better.

Yesterday (Friday) morning at rounds the docs decided to start weaning his ventilator settings. He did great all day as the vent gave him less and less support all day, so at 5:30 last night he was extubated (breathing tube taken out)! Oh how Mason is a much happier little boy now!!!

He is now on 1 liter of nasal cannula O2, which has been weaned from 2 liters at extubation. The plan is to continue weaning him down on the extra O2's now.

Mason also had an NJ (feeding tube placed through the nose that goes past the stomach and into the intestine) on Wednesday morning, so that he could continue getting calories and nutrition without the worry of vomiting with the breathing tube in and then aspirating. This morning that was taken out and he is slowly taking food by mouth and feeds through his g-tube button again. He is also much happier about this.

A few pictures:

Before yesterday...............

(Tuesday)

(Wednesday)

..........and after the extubation!!!

(Friday night)

A much happier Mason asking for some ice!

Mason's lavage sample (from his lung secretions) finally grew out a more specific micro-organism last night. He has enterobacter species in his lungs which hopefully now is getting killed off by his IV antibiotics. With this new information Mason was switched to Gentamicin, which is a more specific IV antibiotic used to treat the enterobacter bug.

Mason also will be moving from the CVICU some time today up to the third floor. This is always a great step to show us Mason is getting better and closer to returning home where he is happiest! I do not know how long he will need to be on the third floor, but baby steps forward is definitely great news! I hope in the future we can steer clear away from Mason getting sick with another lung infection like this. This was an awful one!!!

Thanks for your love, support, and prayers :)

Taking My Time

Today has been a quiet day for Mason.

His chest x-ray showed no improvement this morning.......bummer.

This means that the breathing tube did not come out yet.

Mason seems to be saying, "I'm taking my own time"!

The ICU team changed the settings on the vent to give him a little more support and added a 2nd diuretic to see if this would help his sick little lungs clear out some more fluid and junk.

This afternoon they took another x-ray to see if the changes helped.........and they definitely did His lungs already looked quite a bit less cloudy.

Mason's fevers have also stopped today, so this usually means the antibiotics are doing their job.

Praying for a restful night and good news tomorrow.

Good Night

One step at a time...........

I'll begin with the great news of the day.......... the biopsy came back a big fat beautiful ZERO!!! So, rejection has nothing to do with why Mason is sick. Which is a great relief!!! Now Mason will get to start the slow weaning process of getting him completely off his steroids. Off the steroids Mason will have more of an immune system to fight off these yucky bugs that keep getting him so sick. He will still be immune suppressed on his anti rejection meds, but not nearly as much as when steroids are added to that.

What does Mason have then? He definitely has an infection in his lungs. The samples of his secretions that were tested have so far shown that he is 2+ gram positive with micro-organisms (which could be a bacteria like strep or staff) and has 4+ (which is a lot) white blood cells covering his lungs -suggesting inflammation and infection. The lab will continue to watch the samples to see if they grow anything else and also if with more time they can identify a specific micro-organism.

Right now Mason is still intubated because the docs want to see him loose a little more fluid before they extubate. Today they started iv diuretics to help pull some fluid off the lungs and also 2 antibiotics (Vancomycin & Fortaz). The diuretics have definitely seemed to help today and I hoping by tomorrow we will notice the the antibiotics are also helping. Mason spiked a high fever last night and has continued to have fevers all day, but if the antibiotics are working-by tomorrow the fevers should stop.

It is so sad to see Mason like this. He is pretty sedated so that he isn't bothered by the breathing tube and also so he won't try to pull it out. He is getting some much needed rest but occasionally he wakes up and seems quite miserable. Some rubbing of his forehead, holding his hand, and snuggling up to his favorite blanket usually help calm and soothe him. The hardest moments for me are when he looks at me and tears begin to roll down his cheeks. With the tube in he can't talk or cry, but I'm sure he wants to do both!!!

Praying that tomorrow will bring Mason one more step closer to recovering from this yucky illness. Praying that tomorrow will bring some sunshine and a smile back to Mason's face!

The Good and the Bad

The findings in the cath lab today were very reassuring that Mason's respiratory distress is not due to anything within his heart. The pressures were all within normal perimeters which also shows that Mason's right pulmonary veins are still nice and open! That was one of my major concerns. I am certainly relieved that there were no surprises in Mason's heart function.

Rejection? There was nothing really during Mason's cath that suggests rejection, but we won't know for sure until tomorrow when we get the results from his biopsy.

The surprise and bad news of the day is that Mason ended up in the CVIVU after his cath on the ventilator!!

When the anesthesiologist placed the breathing tube (which is a normal part of a cath lab sedation) he found that Mason's upper airway was super junky. Which is so strange because he sounded very clear prior to going to the cath lab, although he was working very hard to breath today. The anesthesiologist said he did not feel comfortable extubating him with all the congestion in his airways. He also said his lungs appeared to be very stiff, usually a sign of infection. Placing the breathing tube must have loosened up a hidden pocket of mucous, because for the last 3 hours in the CVICU the nurses have continued to suction out more and more junky secretions.

The plan was to keep him only intubated for a few hours tonight, but after seeing his chest x-ray the docs want to keep him on the vent through the whole night to give his body some rest. . Both of Mason's lungs are very cloudy :( So hopefully after a night on the vent and more suctioning by morning he will be able to lose the breathing tube. Mason is fighter, so I know he will get over this new speed bump sooner than later!!

Thanks for your continued prayers for Mason's strength and comfort

Mason is in the Cath Lab

A few minutes ago I left Mason in the cath lab. I gave Mason a kiss and a hug as the anesthesiologist helped him drift off into sleep land. They will be taking extra pictures during the cath of his pulmonary veins, valves etc, along with getting numbers of the pressures in his heart, and then a sample of his right ventricle for the biopsy.

I will say I am very nervous today! We are going into this cath with the "unknown" ahead of us. I hope and pray what is going on does not have anything to do with Mason's right lung, for this is his only healthy and functioning lung. Please what ever it is........let it be treatable!!!!

A little while before we left Mason's room to go down to the cath lab I snuggled up with Mason on his bed, we folded our arms, and said a prayer together. I asked our Heavenly Father to please protect and comfort Mason during today's procedure and to please bless that our doctors may find out the information they need to help Mason feel and breathe better.

Thank you for your love and prayers.

Here We Are Again......

.......at the Hotel on the Hill!

I'll back up..........

At Mason's transplant clinic visit on Thursday, nothing was determined really about why he still needs O2 (1/2 liter) at night, except that sometimes after pneumonia some kiddos need night-time O2's for 4 weeks and it had only been 3. His echo showed no changes to suggest rejection. His labs all looked normal (nothing showing infection) and his chest x-ray looked almost back to his base line. So, we discussed the need to see a sleep doctor and possibly an ENT. It is common for transplant kiddos to get enlarged tonsils from their medications, and some need to get them removed because of the tonsils causing sleep issues. I was told to make appointments with the doctors we discussed and just to watch Mason's sats and behavior. If anything worsened to call.

Well............ on Saturday things worsened so I called the transplant team. Usually once morning comes we can ditch the O2, but yesterday he still needed 1/2 a liter or he would drop into the 80's. (I have a Pulse Ox to check his sats.) Then when he laid down for a nap, (which he asked to lay down - NOT NORMAL!!!) he began to de-sat into the the 70's! Yikes! AND he needed 2 liters for the next 4 hours while he slept to stay in the 90's (4 hour naps would be a dream but NOT NORMAL either!) Upon waking I was slowly able to take his O2 back down to 1/2 liter, but not off. Worried? Concerned? Yes, just slightly! When I called the transplant team they were also quite concerned about his sudden increased need of O2. They sent us up to Primary's ER to have him checked out.

And here we are................

........checking into the ER.

Mason would have rather been at big brother's baseball

game (where we were supposed to be), but actually was

surprisingly pleasant and polite to all the nurses and docs.

I figured it was because I remembered to bring his

favorite baseball mitt and blanket :)

What is going on??? We still do not know! The doctors are baffled. His chest x-ray even looks better since Thursday.. His lab numbers all look normal. His CRP and white blood cell counts are both normal, which if elevated can be measures of infection in the body. So far his bacterial blood cultures and PRV (viral panel) have come back negative (but can always show something up to 72 hours). If this is not an infection, then could this be his heart? Could this be rejection?

They kept us overnight to watch his O2 sats. Also if we had gone home and he had needed more than 2 liters in his sleep then I'd be in trouble! Pediatric concentrators only go up to 2 liters, because a need greater than that means the child should be in the hospital!!! Fortunately he only needed 1 liter through the night last night, but has still needed 1/2 a liter today. Something is wrong! He hasn't needed O2's since his transplant. Well, actually since he overcame that first severe rejection.

Today they have done an echo but I have not spoken with a cardiologist since then to get the report. But, I will say that to me his tricuspid valve appeared to be severely leaking. I am not a pro, but have I have learned a few things about echo's in the last few years!! Mason's T valve began to leak mildly with that first severe rejection, and slowly with him having had so many biopsies, his T valve leakage began to be more within the moderate measures. But, it has been stable there for probably about the last 7 months. If it is severely leaking what does this mean???

The transplant team also said they want to move his biopsy up to tomorrow or Tuesday. (And this was before the echo even.) They are working with the cath lab to rearrange schedules and fit Mason in. This is to hopefully rule out rejection or get it treated for immediately.

I will update with any news as soon as I can.

HAPPY FATHER'S DAY TO MARK.

What a bummer of a day to be in the hospital!!!

We are sad we are not home spending this day as a family.

(This was at Braiden's Baptism on March 6, 2011.)

Please pray the doctors can find out what is going on with our Miracle Mason ASAP and get him treated!! Thank you!!

A Mother's Concern

Do you ever get past a constant state of concern as a heart mommy???

For the last 3 1/2 years, so far my answer would be "no". With my other 4 children I was and am always concerned for their well being, happiness, health, good behavior, education - academic and spiritual, etc.... and also us as parents being a good example for them. But, with Mason it is all that plus the constant concern of looking for symptoms that something is not right with his heart (both his old half of heart that he was able to live with for 2 1/2 years, and now his new transplanted heart). The constant concern that I might wake up one day and find him not breathing. The constant concern that I may have drawn up his meds wrong (and there are still soooo many), where the slightest mistake could cause a huge problem. The constant concern that I'm not protecting him well enough from all the bad germs that come our way because of his immune suppresion. And with that being said, the constant concern and wonder, "is he living the most normal life possible for him?'

Presently my biggest concern is: that Mason is struggling getting over his pneumonia or could it really be that he is experiencing the beginning symptoms of rejection? Mason is still needing extra O2's at night (1/2 a liter) or he frequently drops to the low 80's without it, when he should be in the mid to high 90's. He also has been experiencing a higher resting and sleeping heart rate than his normal, an upset tummy, less energy, and occasional 'grunting' with his breaths. all of which could be rejection or pneumonia recovery along with just some 'bad days' with no true explanation. Ohhhh....... that constant concern and wonder of a 'Heart Mommy'!!!!

(Now it's 5:30 am on Thursday June 16, 2011)

Mason was supposed to have his biopsy and MRI today but it was pushed back about 1 1/2 weeks ago because of his pneumonia to June 30th. This is because of the risk of anesthesia after having a recent respiratory infection. He is also scheduled one week prior to that on June 23 for an echo and exam in transplant clinic. Although, because my concern I called yesterday to talk with Mason's transplant nurses to update them on how Mason has been doing. Due to all of his symptoms that I mentioned above they want to see him today in clinic. ( I forgot to mention that earlier in the week our pediatrician Dr W listened to Mason because of my concern of his continued lower O2 sats at night now, more than two weeks past his hospital discharge. The news was good and bad......his lungs sound much better in fact just about back to normal. It is great that his lungs have cleared up, but bad because it poses the question all the more- what is going on then???)

Hopefully today's appointment will bring some answers to my concerning questions!!! I'll update with any news. Please pray for the health and strength of Mason's heart and lungs :)

"Your father in heaven knows your name and knows your circumstance. He hears your prayers. He knows your hopes and dreams,including your fears and frustrations. He knows what you can become through faith in him." ~ Jeffrey R. Holland