Referral to Stanford for Seriously Ill Child.

Updated on July 31, 2013
K.H. asks from Fernley, NV
10 answers

My 6 year old son has had serious health issues for 9 months now, the most serious being blood clots in his legs, stomach and lungs. He is off the blood thinners but continues to be in serious pain and have other issues. Anyways to make a long story short his pediatrician is referring us to Stanford to a pediatric rheumatologist and possibly an immunologist asap. Stanford is approximately 5 hours from where we live. I don't know what we are going to do as far as lodging and food and gas to get there. Are there programs for assistance in that department? Has anyone ever had anything like this happen? Also to make matters worse(more complicated anyways) we are 32 weeks pregnant and before I get snarky comments the IUD I had implanted after the birth of our 3rd baby fell out-probably during our oldest son's hospitalization and I never noticed-probably because of all the stress of having our son fight for his life while my husband was across the country trying to get back home. Anyways...they want the appointment to happen asap-4-8 weeks which would put me at 36-40 weeks of pregnancy. I am so lost and feel as if we are groping blindly in darkness, but I know no one who has experienced anything remotely like this. Any advice or help or comfort is greatly appreciated. Sorry if I sounded rude-especially about our 4th baby coming when our oldest is so sick, but you wouldn't believe the comments we have had from(mostly strangers) regarding our situation. We planned our other babies and paid for them by the 2nd drs appointments and people think we are irresponsible, bad parents, and ignorant without ever knowing the whole situation.
We do know about RMD housing but I thought it was only if your child was hospitalized? As far as we know he won't be-he will just see a new medical team over 2 or 3 days and be evaluated and tested-kind of getting our foot in the door with these specialists, however the logistics are still being worked out and our insurance company sounds like they are going to try to balk at paying.

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answers from Boston on

So sorry you are going through this. On top of an ill son, you've got to put up with smart remarks from people about being pregnant?? What has happened to decency and civility in this world?

Talk to the hospital's social services department - they are usually up to date on available services. They'll know what RMD offers. Some hospitals also keep apartments available - when my father was hospitalized in NYC, we stayed at something associated with Sloane Kettering. A lot of hospitals realize that kids do better when not in a motel room!

Good luck.

3 moms found this helpful

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answers from Dallas on

I would call the social workers in the department that you are being referred to or the ones that work with families. Explain that waiting for an appointment will put you very close to your due date. Ask if there is anyway that they could schedule that appointment now before you are further along in your pregnancy and at risk of going into labor. They can review the referral forms from your pediatrician to determine the severity of your son's problems. I know you are in a stressful and frightening situation, but your attitude may be responsible for the snarky comments you are getting. It may not be the number of children you have, but your inability to make decisions. You need to take charge of this situation. Stop and think this through in pieces. Everything at one time might seen overwhelming. Do you have a car? You get in the car and you drive 5 hours to get to Stanford, stopping along the way to get out and walk around so you are not sitting in a seat belt for 5 hours. Or considering renting a car. Can't afford the gas? You might ask your church for a gas card to get there and back. Meals? Pack sandwiches and drinks for the ride. You make arrangements for your 2nd & 3rd children to stay with a relative or a trusted friend. You schedule an appointment, get a patient number assigned and call the Ronald McDonald house (520 Sand Hill Rd Palo Alto, CA 94304 ###-###-####) by Stanford and make a reservation. At the Ronald McDonald house, they supply meals to the families that are staying there. Ask the social worker if there are other options too. There are lots of families that go through these kinds of challenges with sick kids. You are not alone. You will probably meet lots of those families at Stamford and been able to meet with a counselor who can point you in the right direction. I hope that they are able to find out what health issues your son has and how to resolve them. Good luck!

2 moms found this helpful


answers from Chicago on

Are you members of a church? If so, I'd ask them if they could help you out with the expenses.

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answers from Sacramento on

RMD will take families of kids not hospitalized. Our son may go into an eating disorder clinic on a day treatment basis and the clinic said we'd qualify for RMD across the street. Call and find out. This may help to put your mind at ease. RMD may also have lodging ideas for you if you don't happen to qualify.

I'm so sorry you're dealing with rude comments from people. The last thing you need right now when you're hanging on by a thread. Just know not everyone is judgmental and there are people out there who can help if you just ask.

I'd say a great game plan is to stay at RMD. If that's not an option, consider staying at a motel in a city outside of Palo Alto, like Mountain View, and driving in ... you'll get a better deal than a PA motel. Tap the local food bank for food if you're struggling financially. Palo Alto is a very expensive area, but you can find normal priced resources there. Avoid the specialty markets like Draegers and stick with Costco and Wal Mart if you want to get your own groceries.

For what it's worth, when I lived in that area, my boss had her baby at Stanford and had a positive delivery. The hospital has a great reputation.

Good luck with the insurance company. I'm currently fighting Kaiser to get the right treatment for our son. I know how frustrating it can be.

Best wishes on your upcoming arrival and I hope you can get a solid game plan in place for your time at Stanford.

2 moms found this helpful


answers from Miami on

I can't imagine anyone giving you snarky comments about being pregnant while you have a seriously ill child. A pox on them if they do.

Talk to the hospital's social worker about this and see if they can get you some help. My thoughts are with you, mom.

1 mom found this helpful


answers from Las Vegas on

So sorry you and your son are having to deal with a serious health issue. And also sorry that people are giving you grief about your pregnancy. As best you can, learn to tune out negative words and people; they'll do nothing but drag you down, and that's the last thing you need now. Try to surround yourself with the people who truly care for you and will be supportive as you're going through this.

I'm sorry---I don't have any specific experience with this situation, but I'm sure the hospital has had many families in similar situations, and if you contact their patient services or social services, they may be able to point you in the right direction.

Just want to offer my support and send you good wishes for your son's health and for your pregnancy.

J. F.

1 mom found this helpful


answers from San Francisco on

I am so sorry that you are all going through this, and especially sorry that your little guy is in so much pain and discomfort. I will pray for you.

My first thought was RMH and I would definitely check into that. Also, call Stanford and speak to a social worker there. They would know if there is any assistance you can tap in to.

1 mom found this helpful


answers from Kansas City on

Check out the resources here:

Also, is there a Ronald McDonald House near Stanford?

I'm sorry you're going through this.
Praying for your son!

1 mom found this helpful


answers from New York on

I believe there is a very nice Ronald McDonald house right there. In case you don't know, RMD houses are for families of very sick children.

1 mom found this helpful


answers from San Francisco on

My first thought was also Ronald McDonald House. Contact them first - if they can't take you in, they probably have referrals for other places. You can also call the hospital's main admin line and see if they have referrals.

Another thought is to try or Both should have some homes in the Palo Alto area that you could possibly rent long term. If he only needs to be there a few days, just stay in a hotel. Things may be a bit cheaper if you go a little farther away - Palo Alto is quite expensive.

I'm so sorry you your son is so sick. It must be very stressful for all of you. And congrats on the new baby - it is something to be happy about, even if the timing isn't quite right.

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