20 October 2014

Getting back to normal.

I've been wanting to give an update to our stem cell trip but some parts of the trip have really angered me and I needed a break before posting lest I look like I'm a ranting lunatic. But I probably will anyway so here goes...

Atlanta on the way down.
Can't you just see him asking if we're there yet.
The flights down there went pretty great. On our first Delta flight into the Dominican, a gentleman from business class immediately got out of his seat when he saw me get on the plane carrying Liam in that seat and he grabbed one side and helped me carry him all the way to the back of the plane. Not that I was going to refuse, but there was no way he was going to let me carry him alone. :)

On our return flight home I texted Shawn and told him I was never.ever flying with Liam again. It was the heat of the moment and I was done. Liam was over done. And I never want to do it again. Liam was a trooper. He really was. But sitting confined in a seat all day long when your body wants to move is painful.

On our first flight coming home from out of the Dominican he did pretty good. I got him situated well but he still isn't 'properly' seated so it can be a problem with his head control.

And that makes him cough.

So that's what he did.

The entire flight.

And the gentle(cough cough)man in the seat in front of Rylie rubber necked the ENTIRE flight to look at Liam. He even put his sunglasses on so he could stare with out looking so obvious. Like that wasn't obvious! I put Liam's iPad right in front of his face so the lookey loo couldn't see him.  Now, I understand, Liam is coughing. A LOT. But COME ON! Where did manners go? You look once or twice, can see the child has issues, then turn your face back around and keep to your own seat. Or, if you have a heart, ask if there's anything you can do. But don't ogle my son as if he has the freaking plague. He's obviously healthy, not crying, and I am attending to his needs. Leave us alone and get your staring fix by watching a movie. Rylie got a chance to stare him down when we switched seats and when he realized what she was doing he never looked back again. asdfghjkl...

After landing, a REAL gentleman in front of my seat, who never once turned around to look and stare, asked us if he could get our bags for us. That's what an empathetic, considerate person should do. I was so proud of him for being so kind. I wanted to tell him that but thought it would be too weird.

Trying to wake from the propofol after the extraction. This time they extracted stem cells from both hips.
When we got to Atlanta we had a three hour layover. I was happy about that because it allowed us time to get Liam out, eat, and just relax before another plane ride. Well, Liam was at his over done point. He was crying and crying and while Rylie and I tried to eat he wouldn't calm down. I had to get up and walk with him and let Rylie finish and then we'd switch off. Each time I walked him back to the tables where we were eating he would freak out and cry even harder. We switched off and I finished my now ice cold dinner and kept an eye on Rylie as she walked with Liam. Whenever she'd get close to my table he would cry again. I grabbed Liam and took off for the bathroom so he could lay out on the counter and relax and when I picked him up I lifted his shirt and saw a dark black and blue depression on his spine. His stroller straps had gotten twisted and had knotted right on the middle of his back and even though there was a thin cushion over it it was still digging into his spine.

After the cath, he wasn't complaining & for that I was shocked & happy.
I felt horrible. My poor wee man had been trying to tell me he hurt and I thought he was just bothered by all the traveling. Mom fail.

With the bruising on his thighs from the procedure and now the bruising on his back, he was not a happy guy. He cried for the rest of the layover. I felt so bad for the people in our tiny little terminal. They were probably only 20 seats and there was no escaping Liam's irritability.  None of them stared at us though. ;)

Once we were home Liam ran a low grade fever off and on for days. It would only last a couple of hours at the most.  He wasn't miserable, but he wasn't his happy self either and with not being able to give any medicines due to the stem cells, we relied heavily on homeopathic treatments to treat his discomfort. We did onions on the feet, egg whites on the feet, essential oils on the chest and feet, colloidal silver, and extra vitamins. It was the first time I've ever had one of my kids go medicine free for pain from a fever and Liam ended up doing really well.

He had to miss several days of school out of pure exhaustion and crankiness though and it took a full week following the procedure before he was back to his old self.

People ask when we will see improvements. It's a valid question. When will we see improvements? I want to see them now too. I'm praying we will see them now. But we might not see improvements for a while. It could be up to a year. And that's a long time to wait looking for signs of answered prayers and hopes and dreams.


This is the moment, after 20 min of a flipping, curving catheter, the Dr finally got it through and up into his carotid. You can't hear them in the room but they all shouted and whooped and were giving thumbs up in relief for finally getting it.


The gorgeous sunset view from our room. Ocean on the left & mountains on the right.
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03 October 2014

Glad thats over

Our driver picked us up at 12:45 yesterday to take us to the hospital and Liam was already sedated and getting his stem cells extracted by 2:00.  We were in a different area of the hospital than when we were here last time and it felt much more like a typical US hospital set up. Last year our room had a thick bed comforter and a wooden armoire and couch so this set up started out feeling like much more sanitary.

The extraction was done literally on the other side of a glass partition from our room. It was clouded so I couldn't completely see but it was comforting knowing he was within reach.

Last time when they did the extraction I didn't see Liam again until it was time for the infusion. This time Liam was brought back to me, pleasantly sedated on propofol, and he slept for most of the next two hours while they processed his stem cells. Again, it was nice to have him with me right there while we waited.

Once the cells were ready they took Liam right next door through another clouded door where they got him all set up in the cardiac cath lab. Once they had threaded the cath through his femoral artery in his left leg and had it up in his carotid, they called me back so I could watch the procedure. While the procedure is done Liam is continually under an xray and I am in the room with the monitors so I get to watch the stem cells pulse through his brain. It is still such a really cool thing to witness.

I watched them infuse on the right side of his neck, then they did something different from last time in that he went up some vessel on the back of the neck with another vial that sent an infusion right to Liam's cerebellum and parietal lobe.

Next they went to the left side but the cardiac interventionist couldn't get the cath threaded. I stood there watching and getting really nervous because he kept shooting it up his torso and then it would just bend and reroute. I didn't want to watch but at the same time I was rooted to my spot and couldn't move. The CI threaded that catheter out and switched it out a few times and after 20 min he finally got it threaded up to his neck. The whole lab fave out whoops and hollers and started giving thumbs ups to me. It was a huge relief to see that catheter up where it needed to go.

When they finished with that infusion I was asked to leave while they finished up with Liam. When the CI was done they asked me back to the room and we all gathered around and prayed over Liam.

It is a full two hours in the recovery room before we can be released and Liam did such a great job. I was dreading his recovery because last time he screamed for the entire time. And if you've ever heard Liam cry, you know he cries very quietly. But not after the last procedure. He wailed like a mortally wounded animal. This time he was so calm and only fussed a couple of times.

We were given the green light to go back to the hotel and 8 hours after leaving we were back. I was a bit concerned that Liam was running a low grade fever and sure enough in the middle of the night he woke up hot and dry and uncomfortable. I spent two hours awake with him trying to make him comfy with no meds. Dr. Anthony didn't want me to give anything if it wasn't necessary in order to allow the stem cells to proceed with out interruption. I used some essential oils tried to get him back to sleep.

This morning he still felt a bit warm so we took him to the pool for a couple of hours and it really cooled him off. I gave him a cool bath back in our room and I am praising God that he has been fever free the rest of the day.  But I'm still keeping essential oils on him for now.

Dr. Anthony called to check on him and will do so again his evening. We just feel so blessed and are thankful that things are going well.  There is a lot of bruising from the cath and they took extractions from both hips this year but he is healing very nicely. I really think the worst was having to take off the tape. Liam and tape are not friends.

Thank you for all the sweet texts and messages!The comfort felt knowing others have your back is indescribable. We are excited to head home tomorrow.  We have a long day with 12 hours of travel but after a week of isolation and this trip, I am looking forward to getting back to normal and moving Liam forward.


02 October 2014

Today is the day

post signatureWith a very early wake up call of 4 am, I had a pretty grumpy, coughing Liam for the first leg of our flight to Atlanta. I was pretty absorbed with taking care of Liam and really didn't notice anyone else on the plane. Apparently a lady kept giving me and and Liam the stink eye and Rylie got her to stop by giving her one back.�� I understand his coughing fits will have people looking at us, concerned to see if he is sick (I might do the same), but there is no reason to stare us down. As always, the attendants on the flight were wonderful and the pilot even helped me get Liam through the door.

When we got to Atlanta we had a two hour layover where Liam got to stroll the airport and really relaxed and enjoyed himself. He was having such a good time that we actually missed our early boarding to Santo Domingo. When we got to our terminal, with 45 min to spare before takeoff, they were on zone 2. I was a little panicked about trying to get a forty lb boy sitting in his car seat, down the tiny aisles with people already in them. Thankfully a wonderful gentleman in first class offered to help me take Liam down to my aisle and I took him up on it. Liam did amazing on this flight. Probably due to me being able to get him out of his seat and into my lap. He relaxed, and hung out with me the entire flight. I had another lady who kept looking at us on this flight too. I looked at her and smiled. A little while later she looked back and smiled. I did the same. Then she started a conversation with me telling me how much she loves kids like Liam and that it's what she does for a living in the Murfreesboro school district. She was such a sweet lady and so fun to talk to. And she exhibited the perfect way to approach a special needs parent, smiling, gentle, and genuine in her approach.

When we landed in Santo Domingo the weather smacked us in the face. It's hot. Liam doesn't do heat. The last time we were here it was February and perfect. I didn't even think about it still being so hot here right now. Liam kept it together as long as he could and made the hour drive to the hotel (in an air conditioned van) before the heat got to be too much and he threw up. We were literally sitting in front of the hotel unloading and all I had left to get out was Liam when he had had enough.

I was happy that if he was going to throw up that he picked the end of the trip, right as we were getting our hotel room. Unfortunately, the hotel was not ready for us and we had to wait over half an hour for our room to get ready. Liam was crying and drenched in sweat so I took him to the lobby couch, stripped him down, and cooled him off with some wipes. It helped some, but he pretty much cried for the entire wait. He was done.

Once we got to the room he settled down and had a great night. We watched the sunset and all of us were asleep by 9:00.

 Our driver will be picking us up at 12:45 today to take us to the hospital and I suspect Liam's procedure will start about 2:00. I anticipate getting back to the hotel about 8 or 9 tonight.

 I can't believe the day has arrived already. It's almost surreal to be here again. Thank you so much for all your love and support and prayers. We are so thankful to not be doing this alone. ��

15 September 2014

Two weeks to go! Eeeek!


Traveling with Liam isn't the easiest thing to do, let alone flying in an itty bitty plane. It's actually quite a feat to be sure. I have to call ahead to the airline and make sure they are aware that I will need extra time in order to board and help with his wheelchair/car seat/bags/etc. This is to our advantage as it means we actually get to board before everyone else. It's actually a huge relief to not have everyone's prying eyes watching you try to wrangle an almost 7 year old into a car seat when his body is fighting you every step of the way and in such a tiny spot as an airplane seat. I've received many fat lips and bruised eye sockets from his flailing fists and the less people watching that happen, the better my psyche will be. And since we exit last, no one is around except for the flight attendants and they are usually very helpful to me, asking me what they need to do to accommodate Liam and expedite our departure.

Liam is fed homemade food, not the commercially prepared cans of  formula that he used to get so this time our travel has a different set of requirements regarding transport. Since he's g-tube fed and entirely dependent on what I make for him, I will be making all of the food in advance, freezing it, and packing it in gel pack freezer packets for the duration of the trip. When I called ahead, I asked the airline if it will be a problem bringing his food on board and she said no, they can't keep me from bringing his medically necessary items.  She says that, but you watch, they are going to be eyeing me suspiciously when I try to get through security with four 32 oz containers full of liquidy goodness. Oh, you don't want to go through x-ray with the wheelchair? We get an automatic bomb residue check. Hooray.
Liam lost another tooth yesterday! That makes for 3 empty spaces in there!
We only have $782.40 to go! Liam has the best friends, truly. Thank you for all your prayers, questions about how this all works and our expectations from it, and for your continued belief that God is still in the miracle making business. This trip wouldn't be possible with out all of you.




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