Today is Sunday. It was raining and gloomy today. I feel that way right now. We have so much to be thankful for and my head knows this but my heart only knows that my family has left yet again and gone home while Grayson and I stay behind. Grayson knows this sadness all too well and responds with even more passion than I. When Tom, Mason and Gavin get their coats on he reaches out desperately to get into Tom's arms. Every Sunday he assumes falsely that if Daddy is holding him he will get to go too. I typically hold Gavin as we descend in the elevator from the apartment to the downstairs lobby. When we reach the lobby there is a shuffle of children and Tom and I switch armloads. This is the only time that Grayson is ever unwilling to be held by mommy. He cries and reaches for the trio that is heading out the door as I wave goodbye and blow kisses. Once the door closes he looks straight into my eyes and cries. "Why can't we go too mommy"? At least I think that's what his eyes are asking. I just cuddle and hold him and do my best to distract him by letting him press all the elevator buttons (except the emergency one). What do I care? There are only 4 floors and we aren't rushing back to anyone. He is always delighted and comforted by the noise and lights of the elevator buttons. Coincidentally, my 3-year old is also fascinated with the private elevator and I can say that we spend an unnatural amount of time in the elevator during the weekend. Tom was telling me tonight that Grayson is going to be beside himself when he finally does get to go home too!
I have for the most part lately only given great news about Grayson's recovery. There is nothing terrible to report which I am thankful for but this Sunday I was reminded that my kid has been through a lot and is definitely still not normal. Grayson threw up on me twice today. The first time I was covered in breast milk and hot dog pieces from my nose to my waist. I got my mouth closed in time ;) I have become so used to wearing Grayson's puke that I've forgotten how I smell without it. I realized after my second outfit change, that it had been a few days since he puked last. He throws up almost every morning before appointments and at various times throughout the day he will gag and spit up, but it has been calm the last few mornings. I guess he decided to make up for that lull today. I am starting to get concerned about this because Grayson is on antacids that are supposed to reduce the reflux but every time I give them to him he throws them up. He was on a Prevacid and now Zantac and he doesn't like either. I am at a loss because the medicines that reduce the vomiting make him vomit. He also has anti-nausea drugs that can be given as needed but I hate giving them round the clock because its one more drug for his body to process and the bouts of nausea are so infrequent throughout the day that it seems unnecessary.
The doctors aren't very concerned about the vomiting because he is holding most of the meds and breast milk down. His eating has really taken a dive but he still nibbles here and there and he isn't losing weight. Of course he isn't gaining any weight either. It just started bothering me today because I'm sure he can't feel good during those times when he's heaving. I am sure he is having nausea and reflux and that burning acidic after taste. This just shouldn't be. He shouldn't have to be dealing with this at just one year old. I know he's a tough kid and he's been through a lot but I don't want this to be his "normal". I would like this part to stop now and his eating habits to improve. If you think about it, please pray that his little tummy would be healed and that the vomiting/reflux would cease.
He has also been fussing more lately. I am not sure if it’s just teething or something else. No fevers thankfully. If it is teething we can't give him Tylenol because it could mask a fever but we are allowed to give him oxycodone which is a lovely narcotic that knocks him out. I don't mind giving it at bedtime but the rest of the day he just fusses. I will be talking to the NP about the throwing up and fussiness tomorrow so we will see what she says.
We will also be discussing the idea of switching Grayson's Double Lumen Hickman (Central Line) out for a port. It is still like a central line but it goes under the skin somehow and they access it with needles opposed to the tubes hanging out of his chest all the time. I am leaning toward this extra procedure because the central lines have greater risk of infection and right now he can't get his chest wet at all. Normally I just sponge bath him, but everyone once in a while I will put him in the bath tub. You can imagine that bath time for us looks like a Mars mission with Cling wrap, safety pins, and a lot of tape. The port would allow us to take baths and go in the swimming pool this summer. If we choose to go this route, I am hoping they will be able to do this surgery while he is under for his 90 day bone marrow test. Please pray for wisdom and clarity regarding this decision.
All in all these are very minor things but they are still relevant to his recovery and well being. Thank you again to all those who are praying and supporting us through this time. Each prayer sent in Jesus' name, each message filled with love and encouragement, each phone call, visit or text are a gift to me and my family. God continues to give us grace each day to get through what we need to get through and find things to be thankful for. Today I am just so thankful for my husband and my other two sons, Mason and Gavin. Having all boys can be crazy and loud and gross and smelly at times, but I am so thankful for all them.
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Oh, Pam...Yesterday was a dark teary day, but tomorrow's coming, and I can guarantee that things will change. And, besides...He does His best works in us during the dark days. So, I'm getting a tissue for the tears (mine and others') mingling with yours because of the heartbreak you're in the middle of that we're all feeling with you. And, then I'm going to talk to you about ports. :) Before that, though, I want to express tons of admiration for the heartfelt and balanced way you have of communicating what you're going through. I understand about not putting everything out there for everyone to read, but you're doing an excellent job of describing the things we need and want to know.
ReplyDeletePorts - they're wonderful!! My husband got his second Hickman out in January (the first one DID become the site of a life-threatening infection for him!), and the instant freedom was exhilarating - a shower where he could just step into the water, splash and scrub everything, and step out! What a relief! He's not the one with the port, though...I am.
It's left over from breast cancer treatment just after we got married seven years ago, and I'm keeping it...just in case. All I have to do is run into Annapolis every six to eight weeks to have it flushed with stronger heparin than they use for the Hickmans.
It is indeed so much safer than a central line in that there is nothing communicating with the outside skin, except when they access it through the skin covering it. It's just a little disk under the skin on the chest with a little tube (catheter)running up to be inserted into a neck vein (all under the skin) and down the big vein in the middle to dump meds into that nice big vein, instead of a tiny arm vein.
The difference I can see for Grayson between a Hickman and a port is the matter of a tiny bit of pain each time they access it. The surface of the disk is like a tight mesh screen. At access time, they clean the skin over that with betadine, or alcohol, or those cloraprep sticks (betadine and cloraprep are best), and they poke their needle right through the skin into the mesh. On the other end of the needle is another tube that they attach to the medicine delivery device (probably a syringe) and they're good to go. Some adults (me, included in the beginning) choose to have the surface area of the port sprayed with that aerosol freezy stuff to reduce the needle pain, but I promise you - the freezy stuff hurts LOTS more than the needle stick does! When they pull the needle out it hurts a little too, and then they cover the site with gauze and tape for a little while.
Just wanted you to know from the horse's mouth, so you wouldn't be surprised. Betcha Grayson won't mind a bit after the first time or two. And, think how nice it'll be to be able to ignore the infusion site all the rest of the time. :D
We're all in the furnace, Pam - listen to why...
Romans 8:28 AND 29:
"And we know that God causes all things to work together for good to those who love God...TO BECOME CONFORMED TO THE IMAGE OF HIS SON, so that He would be the firstborn among many brethren..."
Pam, you are offering yourself as a living sacrifice, and are being made more like Jesus with every step He lights up for you. It's a rare privilege, and the angels are watching in awe when no one else is there.
Please give your mom a hug from me - she's hurting three times over: for Gavin, for you, and for herself. :)
dlruschell@hotmail.com
Pam,
ReplyDeleteIt sounds like we have both been through a lot of ups and downs - possibly more downs than ups. I have read a little of your blog and although we aren't going through exactly the same thing, I can relate.
Of course you can share my blog however you would like. And if I can figure out how ;) and it's okay with you I will do the same.
Words to the 3rd Day song really struck me the other day: We must go through the valley to stand before the mountain of God.
And what a valley this has turned out to be. I have really high hopes for that mountain :)
We are at Johns Hopkins - have been since Dec 15. Nicu to Picu and vice versa several times.