Emotions, Emotions

Where do I begin, I have been wanting to sit down and write something for so long, but the days all of a sudden disappear and by the time we get to bed I am exhausted and not sure why besides the mix of emotions that go with each day.  Our days consist of  being at hospital all morning/afternoon, going back to the house and spend a bit of time with the two other kids and put them to bed and once we are sure they are asleep, we head back to the hospital.  Chris’s mom stays with the kids.  Now that we are at the Ward, he no longer has a dedicated nurse, therefore, I have been staying with him all day and either Chris or his Mom come and give me breaks so I can spend time with the other kids.

Hudson is 5months old today, he has spent his entire 4^th month in the hospital and 6 weeks in hospital so far.  This morning we came in after having a quick breakfast with the kids, they had moved him from PICU to the Ward, but he was a happy little guy, smiling and trying to talk.  He went down to PICU on Monday afternoon thinking they were going to put in a new central line or a picc line in order to run a drug called milrinone that helps with heart function.  We are so hesitant about him getting any pokes because  he has been tortured enough with putting a million lines in him.  There was one day , before he had his surgery, they tried putting in a central line to have access for blood work and add medications and so on.   I understood why they had to put it in, once they have a central line, they can take blood out without poking everytime.  Anyways I understood he needed one at that time which we agreed to it.  Well that was just a bad day.  We were there when they started to try and get a line in him, he was heavily sedated at the time, but I don’t care, they are still poking him.  So I saw them poke him 3 times in his groin area,  I couldn’t take it anymore, so I steped out for a little bit and Chris came with me and we decided to get out for a bit and when we got back, I saw them change his diaper and he must have had 30 pokes on each side of his groin area. Lets just say the  Dr.  was not on my good books.  later on I was touching his arm and decided to start counting the pokes I saw all over his One arm and I counted 15needle pokes and than I start looking at his ankles and wrists and they had poked him everywhere, I wanted to strangle the Dr that did that to him and I am not a violent person.  I felt like he had taken advantage of Hudson being sooo sedated that he was going to get that stupid line and it didn’t matter how many times he poked.  I also noticed they had shaved a little part of his forehead and had tried once on his head.  Both Chris and I regret leaving for that moment that we left him thinking that when we got back he would have gotten the central line. Well after all that, they ended up getting an arterial line instead by mistake (in the artery instead of vein!), so now they had to send him to the radiology place to get his central line.  I am not a happy person at this point after seeing him poked sooo many times.   Anyways after being in the lab for a couple of hours, he comes back with a picc line instead of a central line.  Well apparently a picc line is good enough at this point, they are able to administer drugs through it and also get blood work.  It’s almost like the Dr’s take each kid and use them as pin cushions, to get what they want it’s not fair.

So from that day forward NOBODY is allowed to touch him unless Chris and I are around, nobody is allowed to do any blood work unless we authorize it and only if they absolutely need it.   If it comes down to need, they get to try ONCE and they get one poke and that is it, if they get nothing, oh well, they’ll just have to try some other time.  He now doesn’t let me stretch out his little arms because I think he’s so fearful that I am going to help them to try and poke him, he doesn’t like his ankles or wrists touched very much.   At this point he no longer has veins that are good enough and the Dr’s can’t get a simple IV line going anymore, anywhere!

But after all of that and everything he has been through, he is a very forgiving little guy, he is now smiling lots and smiles at the Dr’s even.

I have missed his smiles sooo much, that is one thing both Chris and I pray about is to be able to get his smiles back, he’s got the most amazing smile that tugs at your heart because it lights up  his beautiful little face and you would never know all that he has been through in his 5 months of life.  In the last month he has had three cardiac arrests, a very invasive cath and his second open heart surgery which was again very invasive to his little heart.  How can he smile after all of that?  Well he does and looks amazing when he does it.  I know God continues to hold us all in the palm of his hand, especially Hudson and his precious, unique heart.  I know that patience is a lesson to be learned, I still get anxious and impatient and frustrated about everything that’s been going on and in the last week, I have come to question God as to why does it seem like one day I see his working hand and the next day it’s as if he has disssapeared?  As humans that we all are, I know God understands my questioning, at the same time I feel bad for questioning because I really need to have more faith and trust in him that things will work out and that is where I have to be patient.  We  continue to meet other families not necessarily with the same condition as Hudson, but have endured a lot with their kids being in the hospitals for months to years.  Hudson is not yet out of the hospital, but we  believe he will be soon and we will get to bring him home once again and live our lives outside of hospitals.

Hayden and Hayley seem to be doing ok, with some acting up at times and when I come to the hospital, Hayden sometimes makes a scene about it and tells me he doesn’t mind if Daddy goes, but he wants me to stay with him and never wants me to leave,  he tells me that I have already seen Hudson today, so I don’t need to go again.  It’s so hard as a mom trying to juggle 3 kids and giving them attention as needed.  They are my precious little angels and it’s heart wrenching when I have to leave them in a state of crying and pulling my leg to try and make me stay.    Sometimes Hayden is really undestanding, but other times not so much, but really how much can I expect from a 3yr old?  Hayley is still a bit young but sometimes I do notice her to be a bit distant.  I know they miss me and I miss them so much too.   As for myself and Chris, well we are just preoccupied with juggling the kids and being with Hudson and figuring out what is going on with his arrythmias, watching him closely, any new changes that the Dr’s make.  Chris challenges them a lot which makes me very proud.  Chris really is in the wrong profession, he should have been a lawyer, when he believes in something, he will fight until he gets his way.  I know he researches stuff and we talk about it and we present our concerns to the Dr’s.  Sometimes we agree with them and sometimes not but it is all for the best interest of Hudson.  I am grateful that my kids have a father that will fight for them and their best interest.  He won’t just randomly make suggestions to the Dr’s, he will research first and then present it with knowledge.  I believe that Dr’s should always take parents concerns and observations and make a decision with that in mind.  We are the ones that watch our kids 24/7 and we know him.  For the most part we have met some great Drs here and are thankful for their knowledge and dedication.  I understand Dr’s can’t really get too attached to a patient and that is why sometimes they come out and seem like they don’t care or have any compassion.

Please continue to pray for Hudson’s little heart and that he regains function and that his arrythmias leave his little heart alone.   In the past week we have discovered that he is allergic to cows milk, therefore, is on a hypoallergenic formula for babies with cows milk protein. All this came to light when I changed his diaper one day and noticed a bit of blood in his stool.  They brushed it off the first time, second time I changed him I saw a bit of blood as well and again, they brushed it off and said they would wait and see, sure enough third diaper I changed was evident that there was blood in his stool, he had bright red streaks which apparently to the GI Drs that means he’s allergic to cow’s milk or the protein of it.  Chris was very upset because he’s been saying something had to be related to his feeds for the past 6 weeks now.  So Chris and I decided to try this new milk he is on and it’s pretty gross to say the least, it taste as bad as it smells and Hudson we think he feels the same because he will only bottle about 10ml and than won’t even try to suck.

The last few days have been kind of up and down, I think I have become an emotional wreck because just the simplest things make me all teary eye.    I feel so blessed to have my beautiful family and all our friends that support us.   I am thankful that we are here where they have a great team of very talented people and so thankful for the Ronald McDonald house, I can’t say enough about the house.

I am enjoying cuddling with Hudson for hours and hours and he loves it and is getting a bit to use to it, to the point where he cries so hard when I try to put him down, he’s so sweet, he’s got the biggest pouty lip in the world and totally tugs at your heart because you just can’t say no to him, I am going to have a hard time at home with all 3 kids Yikes!!! OH well, I am just happy that we will all be together.  I’ve had a few times where the two other kids have come to see Hudson and I have all of them under one roof, it’s awesome, even though it’s stressful, those are the times where I feel Ok,  not worrying about one or the other when I am away from one of them.

Anyways, I’ve rambled enough and I probably still didn’t finish writing everything I wanted to share.

G.