Here's What's Been Happening - Sorry It Got a Little Long

Kirstenmumof3 wrote: Yesterday Spencer did really well. He took all of his medications no problem. He ate and drank and did really well. We went to Clinic today, which meant holding off his morning dose of his anti-rejection medication. He had breakfast at 8:00, then we had to be in Clinic (on 8D) by 9:30. He had blood drawn and we left for his schooling (at the hospital), then we went to 8B to get his bravery beads and to say hello to everyone. We went to the Parents Lounge and I gave him his meds. We went back to clinic and there wasn't a room available for Spencer. So they asked us to sit at the benches infront of 8B, very quiet there, noone around. Well he starts to feel sick. I know this is because he has taken his medication on an empty stomach. So I gave him a rice cake and some orange juice and well wouldn't you know he throws up and at the same time has an accident in his pants! I honestly didn't know what I was supposed to do. I'm glad that a parent and a staff from 8B came bye, they got some paper towel and a glass of water for Spencer. Then the doctor from 8B was walking bye and I asked her to page Spencers nurse. They sent the desk clerk from 8D over to get us and put us in a quiet room. Then the doctor came to see us. He said that it may be Graft-Versus Host Desease, or it may just be that his stomach is still inflamed from the ulcer. They hooked Spencer up to IV fluids and gave him some gravol. The doctor said that he would be on call for the weekend and if we had any problems we could call him. The doctor said to see how the weekend goes and to make sure that I give him gravol on a regular basis all day. NO PLAN, just we'll see you on Monday! Oh and I can't leave, the nurse didn't think it was a good idea to throw someone new into the situation because of the medications. And I agree now after thinking about all of this, DH wouldn't beable to handle all of the medications that Spencer is taking. And now DH isn't sure if he is coming now. We were supposed to hear a definitive plan today! We were supposed to find out when we were going home!

And another problem is these darn home care nurses! I've just about had it with them. Lastnight the nurse didn't show up until 10:00, Spencer is supposed to have 12 hour hydration at night. I explained to her that we had Clinic in the morning and that we needed to leave by 9:00, she hadn't shown up! So I had to turn the pump off and unhook him. Also another part of this Home Care is to provide parental respite. We've been out of the hospital since Monday and they are just today calling me! Well they can't have someone come to do the respite until Wednesday! I have very few groceries and a child that I can't take to public places! The plan for today was to walk home form the hospital and stop at this 24 hour food market. The place is empty everytime I go there, sure I'd be paying an arm and a leg for everything but at least we would have a few groceries,but because Spencer got sick and had the accident in his pants we had to take yet another cab to the Ronald McDonald House. I've asked my DH's Aunt to come and stay with Spencer, but have not heard back from her. It's so hard being here by myself! I need to re-fill prescriptions, I need to buy groceries, I need a little bit of SANITY!

PrairieMom replied: Ugh. I am so sorry to hear that you are having these problems. You are giving me a lot of insight. As a healthcare worker, I never see things from your side. It is really making me more aware of what things are like for the patient and their families.
I am sorry you don't have all the resources you need. you must be going out of your mind. Is there someone else you can have come stay with you, like a friend or a relative or something? someone who can help give you a hand without you having to leave?

Sarah&Mackenzie replied: So sorry you both have to go through this.

mckayleesmom replied:

kimberley replied: i am so sorry hon. i know you were really counting on dh taking over. i am a little surprised they didn't readmit him if they suspect Graft-Versus Host Desease. i will pray things take a turn for the better soon.
as for groceries, do you have net access at Ronald McDonald house? www.grocerygateway.com delivers groceries sometimes next day. i used to use them all the time in the winter when i was a single mom with the boys.
i have to work saturday morning but late afternoon or evening, i could come by if you need someone to get you supplies. or even sunday evening after james' 1st communion. let me know.

CantWait replied: I'm so sorry, I wish there was some way we could help to make this a little easier on you.

amymom replied:
Kimberley, I am THANKING YOU for offering to do this. I hope Kirsten takes you up on it. You would represent all of us who are far away and can not offer. (I don't think you are very close either) But that is so great that you could offer this. Thank you.

Kirsten,Take care. Continued prayers are going for you, Spencer and his health team and your entire family. Please continue to update us. Thanks.

gr33n3y3z replied: Its almost done hun hang in there ok

My3LilMonkeys replied:

Halo42101 replied: I wish I could help you & Spencer somehow. My thoughts & prayers are with you. You're such a strong, brave mom, for all that you do. Lots of hugs for you & Spencer.

mom21kid2dogs replied: What a disappointing way to start the weekend for both of you!! Home health here in the States (at least the ones I've dealt with) are very similar~lots of late people and no shows!! Such a nightmare!!

Hope things go better soon!!

C&K*s Mommie replied: As it has been said above, I wish there was someway to help you out.

Praying for the best and for your sanity, and for Spencer's comfort.

kayla's mama replied:

Kirstenmumof3 replied:
Thanks Kimberley and everyone else! DH's Aunt did show up and I was able to get out and mail a parcel, buy groceries and get all my prescriptions re-filled. I have not heard from the nurse yet tonight. I'm in the process of making dinner so if she does call I won't be in the room. I will talk more later! Thanks again everyone!

Maddie&EthansMom replied: Kirsten I'm so sorry. I wish I were nearby so I could help out in anyway possible. I can't imagine how stir crazy you are getting. You need to take care of yourself, too. Is there a mental health doctor that you can be referred to there. I would think in a place like that there would have to be b/c it's just downright depressing seeing that day in and day out.

Please take a few moments for yourself. It's only better for Spencer if you are healthy, too.

Kirstenmumof3 replied:
Thanks Aimee, I was seeing a psychiatrist here and I have spoken with her today. It was mainly about my prescriptions and to have her write a letter to my family doctor explaining the medication changes. I really don't have the opprotunity to see her anymore, I don't have anyone that could come and watch Spencer. Plus whenever we go to Clinic, it seems that we end up spending the whole day there. So I couldn't even really arrange to have someone come and help me if I had someone.

Kirstenmumof3 replied: If this does turn out to be Graft-Versus Host Desease then Spencer will be re-admitted to the hospital and put on steroids for 3-4 days. The only way that they will be able to determine if it is or not is to have a biopsy done of his stomach. If he is still vomitting over the weekend then they will have no choice, but to do the biopsy. They are also trying to have an ultrasound done of his stomach, but that is taking forever.

b&bsmom replied: I am hoping and praying that this will get better for you soon. I hope you get some backup soon and be able to get what you need. I am sure you are pulling your hair out and have had enough but just remember you are getting close to going home and you will be so happy once you get there. Hang in there.