October 4, 2011

Day +34: Transition

I'm sorry I've been so MIA.  Life at home is crazy.  It's wonderful but it is HARD.  I go non-stop, all day.  I think I am more exhausted now than I was when we were in the hospital.

Before I get into life at home, I have some great news regarding Kate's biopsy results.  Prior to the biopsy, we were told to expect Kate's marrow to be pretty empty.  Our goal was to simply check that all three cell lines (red, white, and platelets) were growing at all stages of maturity.  We were also checking for the percentage donor cells in her bone marrow.  Kate shocked us all when her results came back!

Her marrow is totally full - 95% cellularity and all cell types and stages of growth are present!  But the best news is that 99%+ of her bone marrow cells are HEALTHY DONOR CELLS!!!  We are so thankful for this amazing news!  Her doctors were completely shocked at how "full" she was. Apparently it is very rare to be completely full so soon post engraftment!  Your prayers are working!

Ok, back to life at home...

I don't want to come across as complaining, because Alex and I are so incredibly thankful that Kate is home, that we are all under one roof, that we aren't in temporary housing.  We are blessed to live so close to Texas Children's.  So, we are definitely counting every single one of our blessings.

However, that doesn't make home life any easier. 

Kate is having a hard time transitioning.  We expected it.  She spent almost 40 days in a teeny tiny hospital room with someone (me, Alex, or a nurse) in the room with her at all times.  Add in the fact that she is 13 months old and dealing with normal 13 month old separation anxiety and we have quite the attached little girl on our hands.  Kate has to see me or Alex at all times.  If she can't see us, and get to us, she totally freaks out.

This has lead to lots of rocking, cuddling, and holding.  I'm not complaining about that at all - I love the time to just sit and hang out with Kate!  But, it makes getting things done nearly impossible. I've yet to cook a meal since coming home.  I've yet to clean much of anything (thank goodness for our amazing house keeper).  I've yet to really do anything other than deal with Kate's attachment issues.

On top of that, sleep is a huge struggle as well.  She slept in the bed with me at the hospital and stopped taking a paci due to her mouth sores.  So, Kate lacks any ability to self soothe now.  She is still refusing her paci and if she wakes up and can't get to me, she has a breakdown.  We are trying to transition her to her crib and have been successful for night time (as long as I run to her room as soon as I hear the slightest peep) but naps are still a challenge.  I have to lay down with her to get to her take a nap and then stay with her for the entire nap.  It helps my exhaustion as I am able nap a bit myself but it does nothing for me getting things done around the house.

I've also taken over the role as Kate's in home "nurse".  I use the term lightly as I have no medical training other than the teaching sessions I had prior to coming home.  But, I am responsible for all of her medications (which she gets around the clock - I have to set my alarm for multiple over night meds) as well as her TPN (IV nutrition).  I stress myself out about these responsibilities.  I can't chance missing a medication.  What if I hook her TPN up wrong?  What if I forget to clean her line prior to flushing it?  What if I forget to hep lock her lines and they clot?

I have notes all over the house - medication schedules, lists of the steps I need to do for everything, reminders to not forget this or that.  I have put so much pressure on myself to do all of this perfectly.  I wake up in the middle of the night wondering if I left her lines unclamped all day.  Or worrying that I forgot to give her a medication.  It is stressful to be in charge of such an important part of Kate's recovery!

We also have clinic appointments three days a week that take anywhere from an hour to 5 hours.  It is all dependent on what blood product Kate needs.  She is still getting platelets a few times a week (her platelets have yet to increase on their own - she is totally dependent on transfusions right now) and red blood ever 1.5-2 weeks.  We are praying that her marrow starts pushing out those healthy cells so she can stop getting so many transfusions.

Despite how hard life is right now, we are so thankful that Kate is doing so well so soon after transplant!  We are still struggling with eat and throwing up but hopefully that will get better soon!

Again, I hope this doesn't come across as one big complaint.  We really are blessed and thankful to be home.  I just need to get everything out sometimes!

On a different note, I have some really awesome giveaways coming up soon!  I am able to host these giveaways because of the exposure the blog gets from being ranked pretty high on Top Mommy Blogs.  We've been falling recently (I'm sure due to my lack of posting) so, if y'all are interested in more and more awesome giveaways in the future, can you simply click the badge below?  One click over to TMB is all it takes to vote for us!  Thanks!

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Emily said...

Yay! So happy to see a post, I was wondering how sweet Kate was! I can imagine the transition from hospital to home is completely confusing and exhausting for everyone. Cut yourself some slack momma. It's ok to order pizza or take out for awhile. Just remember to make sure you are eating and drinking momma, you need to keep your health and energy up. Time will fix alot of these issues. Once Kate's been home longer than she was in the hospital, home routines will start to make more sense to her. I give you HUGE props for taking this all in stride and taking such great care of your baby girl. It's amazing what we can do as moms when it comes right down to it. You are doing great. OH!! I almost forgot- YAY for being so full!!!! Praying that the good news just keeps rolling in.

squarepeg said...

Thanks for sharing - I am not surprised the poor wee one is having a tough time; as is mama!

STUPID question... does she take a lovey? Sam always slept with a lovey but around 14 months or so he started carrying it around more and asking for it during the day if he felt stressed or insecure. Maybe a few different loveys could take the place of the paci?

I have no doubt she'll settle in and gain more independence as time goes no, but I can also only imagine how exhausting it is to be all things to that little one.

Hang in there!

Erin said...

Those test results are ah-mazing!! Glad to hear Kate is doing so well after transplant. And as for you "complaining", it's no big deal and I'm sure none of us blame you! All moms have issues getting things done around the house and many of us don't have the extra responsibilities you have.

I'm sure you're doing wonderful taking care of this part of Kate's recovery! Everything will come in time, just keep enjoying being at home as a family!

Jennifer said...

What great news and I'm so happy you guys are home! I'm still praying. Your post didn't come across as a big complaint at all. I pray that things continue to improve, that things with Kate get easier, and that the Lord continues to give you strength and energy. You're doing a great job and soon this will all be a memory.

Allison said...

Glad for all of the good news. I cannot imagine taking on as much as you have--sounds like you are doing a tremendous job!
I know that the regression has to be hard but just know it'll eventually even out. In the meantime it's a good excuse to get some snuggles :)

Mrs Nautical Belle said...

As an almost graduated RN I know how stressful it must be for you to do all these things for Kate. But in the end she will be so grateful that you have done all these things to help her get better. We all think you are amazing! It's really easy for a nurse to do all these things and go home for the day but your doing this day in and day out with no breaks- and that is amazing!


Jess said...

You're doing a great job!! I can only imagine how you must feel and this post is just a tiny window into what you and A are dealing with. Vent, kick, scream, do whatever you have to do to feel better. Keep it up mama! K is doing so good because she has you for a mama! xoxo

jlynn said...

So happy to hear Kate's awesome test results! You are doing an amazing job adjusting to her home needs and have every right to vent your frustrations. Thinking of you all and praying for Kate's continued recovery. (((hugs)))

Josie said...

So glad to hear how well Kate is doing and that she is on the road to recovery.
As far as all your responsibilities as her caregiver, you are doing a great job as overwhelming as it seems. Would it be possible to have the part time services of a visiting nurse to give you a short break. You need to take care of yourself, especially since you're home and the burden falls on you, and you don't want to burn out from being overwrought and from lack of sleep. Remember, asking for help is not a sign of weakness, it's an admission of being human.

Anonymous said...

I think that is a lot for a mother to endure, especially being her in home nurse, dealing with a central line and hyperal/tpn. As an RN (one who worked with very sick children) I had to go through years of schooling to learn how to administer, dress and care for central lines and medications given through it. I completely understand your intimidation and fear about her meds and lines! Is home health nursing something you would qualify for? Sometimes having a nurse come to the house at least to make sure meds are given right, or her lines are ok, makes the parents feel better. Either way- you are doing an excellent and amazing job with sweet Kate. Remaining in my thoughts and prayers!

Anonymous said...

so happy for you and your family. we will continue to pray for you all and hope that Kate continues to go stronger each new day!

Anonymous said...

Great news! And you can vent all you want. You definitely deserve it!

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Lindsey said...

So glad you are all home! And I will continue to pray that Kate's bloodwork continues to improve! I had the same concerns when had a PiCC line myself and needed to constantly write reminders as well- I couldn't imagine how overwhelmed you are- I am a nurse and wish I lived in TX to be available to help- but I am sure you are doing an amazing job! Your strength is so admirable!

Anonymous said...

You are amazing! It has to be tough dealing w/ all of the transition issues. Most of us complain about those things but don't have to do half of what you do. I'm glad to hear her medical results are going well.

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