Day 7

Well, Dr. Ruge came in this morning and told me that they absolutely cannot take spinal fluid from Ruthlande's neck. He said that the risks are just far too great. In his words, "We don't want to send her back to Haiti a quadriplegic." I hadn't realized just how dangerous this type of tap could be, especially for a child with spina bifida.

So, Dr. Ruge said that he wants the doctors to make their best guess at what type of infection they're dealing with and create a treatment from their. They did find some yeast in her last urine culture, so who knows? Perhaps her fever could just be from that. They put her on an anti-fungal in addition to her broad spectrum antibiotics. If the fevers don't go away in the next day or two they'll look at her cultures again and try and figure out what other medicines to add.

Day 6

As of this morning, it didn’t look like they were going to be able to test Ruthlande’s spinal fluid. They’re planning on keeping her on the broad spectrum antibiotics. I’m not too happy about this, since she’s been on the broad spectrum antibiotics since Haiti and her fevers haven’t gone away yet. The first doctor who I talked to had said that these antibiotics aren’t strong enough to treat meningitis. But, I guess there’s not much else they can do at this point if they can’t test her spinal fluid. When Ruthlande’s fever is down, she is awake and even playing with toys, but when it goes back up, you can definitely tell in the way she acts. Please keep praying that they can find a way to identify what type of infection she has so that they can properly treat it.

We spoke to the doctors again, though, and it turns out there is still a chance that they might be able to do the spinal tap at Ruthlande's neck. Apparently, in cases of spina bifida, the brain can sometimes move to a lower than normal position, which is what makes doing this type of tap dangerous. However, this afternoon, they gave Ruthlande an MRI to find out if it is safe or not to do it. Please be praying that they can do the tap and find out what the infection is!

Day 5

Unfortunately, we got some very bad news today. The infectious disease doctor came by again this morning and said that Ruthlande’s culture grew more bacteria – so many types of bacteria that they don’t know what to treat at this point. They can’t possibly treat them all because some of the medicines would have serious side-effects. They need to find out which of these infections is actually in her spinal fluid in order to properly treat her and they can’t do a spinal tap because of her surgery. The doctor said that she spoke to someone who said that sometimes in adults they can take spinal fluid from the neck with the help of a radiologist. She is supposed to talk to a radiologist to find out if they can do this for Ruthlande. Please be praying that they are able to do the test this way and they will find out exactly what type of infection Ruthlande has so they can treat her. Ruthlande is still doing about the same right now, but if they don’t get the meningitis treated, she will definitely get worse.

Day 4 in the Hospital

It's been a busyday here today because they moved Ruhlande to the main pediatrics floor (so, I did a lot of talking to the nurse in PICU about her care before she left). Then, shortly after we got to the new room, I had to go home for a bit to pick up my kiddos and bring them back to the hospital (luckily, I had a friend who was able to stay with Ruthlande while I left). At any rate, Ruthlande was awake pretty much all day, but she was acting like she was in a bit more pain and she was a bit shaky, I think from the fever, which has not gone away. They've been giving her Tylenol every four hours for the fever, and they gave her some morphine this evening for the pain. I was getting concerned about her today and then talked to the doctor and found out why she isn't looking as good as I would hope.

Unfortunately, it looks like Ruthlande does have meningitis. The infectious diseases doctor came to talk to me just before Ruthlande changed rooms. She said that the culture from the swab they did of Ruthlande's leaking fluid showed Acinetobacter bacteria. Because these results were received from the swab and not from a normal spinal fluid test, they cannot be 100% positive that it is meningitis, but the doctor said that they are presuming it is. There are two reasons for this - First, if there was bacteria on the fluid that was leaking from her sac, it only makes sense that that bacteria would have gotten into the fluid that went back up into her spine. Second, she has had a fever for several days and has no other known infections.

So, they are putting Ruthlande on a new, stronger antibiotic. She will need to be on the antibiotic for 3 weeks. If she is able tocome home with us before that three weeks are up, then they will put in a picc line.

The good news is that Ruthlande is eating and drinking a bit more today. We're still working on getting her to eat and drink even more, but I'm happy to see progress there.

As far as the hydrocephalus goes, there's nothing new to report. Dr. Ruge came by this morning and pretty much echoed the same things he'd been saying all along. He said we'll have to watch for vomiting in the coming weeks.

Day 3 at the Hospital

Overnight, Ruthlande's blood pressure rose steadily and her heartbeat went down somewhat. She also became more unresponsive (she hasn't had pain medication since 8 PM last night, so it's not due to that). The nurse was concerned because these things could be signs that she's not tolerating the pressure in her head, so she called Dr. Ruge (the neurosurgeon). Of course, as soon as Dr. Ruge came in, Ruthlande was suddenly wide awake and much more responsive than she had been all night and morning. So, he would like to just keep watching her at this point. He says it's certainly not an emergency and she may just be re-adjusting to the increased pressure. As of right now, they're just continuing to monitor her.

She did do a bit better as the day went on. She was awake off and on and was much more alert when she was awake. The nurse said that they are thinking her elevated blood pressure might be normal for her (that might have been her blood pressure when she was in Haiti, before her sac started leaking). By evening, She was really awake and responsive. And she drank a bit more milk as well. She also responded to me for the first time - I gave her some milk and she wouldn't drink anymore, so I said "Fini?" and she gave me a little grunt. I asked her again, just to be sure and again with the grunt. You'd never think a little sound would make me so happy, but I was thrilled!!

Her skin is also looking MUCH better, which is a wonderful thing. They've got her covered in Aquaphor, so she's this little greasy girl, but it's really helping. I still haven't seen her move her legs - just her feet and toes - but she's still not moving around that much in general, so we'll have to wait and see.

Ruthlande

Well, we got a call a couple of weeks ago from Robin, saying that they needed to find a host family for a one-year-old girl named Ruthlande who needed to come here for emergency surgery. Ruthlande has spina bifida and her sac was punctured, so she is leaking spinal fluid. They needed to arrange her surgery as quickly as possible - they had a doctor and hospital in the Chicago area that were willing to donate care, but they needed a host family.

Well, Scott and I talked it over - at first, Scott said, "I don't think I want to do that - if we're going to host her, it will only be because God tells us that's what he wants." That night, as I went to tuck Danielle in, a song was playing on her CD player - "Jesus loves the little children. All the children of the world. Red & yellow, black and white, all are precious in his sight. Jesus loves the children of the world." Hmmm... thanks, God, I got it.

By the time I got to bed, Scott had also felt God talking to him and he was thinking about the "what if's" (instead of ignoring the subject completely). We talked about it and came up with a lot of questions for Robin.

The next day, Robin was getting us answers to our questions when it looked like the doctor in Chicago fell through. Apparently, once he found out that Ruthlande had a tear in her sac, he didn't want to go through with the surgery. He thought the risks were too high and that she probably wouldn't even make it to the States. We were so upset to hear that Ruthlande might not even get a chance at living.

Well, about a week later, we got another call from Robin. There was still a chance that Ruthlande might come to Chicago. Would we be interested in hosting her? I called Scott and he said "Definitely." At this point, we wanted to do anything we could for her. They still weren't sure if she would be coming here, though. There was another hospital in Virginia that was a possibility.

We found out Monday night at 9 PM that Ruthlande would be coming to Chicago yesterday (Tuesday) evening. What a whirlwind!

We picked Sara and Ruthlande up at the airport and drove them straight to the hospital. The picture is of Sara and Ruthlande. Ruthlande was such a sweetie. She still had her fever, of course, and a horrible rash, but she was here, safe and sound. The night was a hard one because they couldn't get an IV into her - they literally tried all night but couldn't find a vein (and when they did find one, it would burst). But, this morning they finally put a main line in.

Ruthlande had her surgery this afternoon. The doctor who helped with the surgery said that things went well overall. He said he's never seen the spina bifida in such a progressive stage since it would usually be taken care of shortly after birth. Ruthlande is awake and in recovery now. They didn't put in a shunt for her hydrocephalus at this point. Apparently they believe that she is probably out of danger with the pressure in her head now. Since she has been living with the pressure for so long and she hasn't shown signs of developmental delays, they believe that her brain has found a way to drain on its own. There is the possibility that since they closed off the hole in her back that she could potentially have more pressure build-up since there is no release for it now. We will have to watch her for vomiting or other signs that the hydrocephalus has advanced (we'll find out more about those signs later). He said we may not see those signs for weeks or months, though.

Finally, I'm back!

So, it's been a VERY long time since I've posted. I guess posting every day was a little bit too hard to keep up with so I just ended up stopping entirely. I really need to find a happy medium! :-)

So, what can I say about the last YEAR? We're still waiting to bring Noah home, which is very frustrating. I have not been doing great with the wait lately. It seems that every time we get one step closer, a few months are added to the next step. We were sure that we would have had Noah home for his second birthday, which was in October. Obviously that didn't happen. Then, we thought maybe by Christmas. Now Easter has come and gone and I'm beginning to wonder if we'll have him home by his third birthday. A week or two ago, I read a post on the Haitian Angels board from someone who had been out of IBESR for 8 months and was still waiting. I broke down in tears. We've been out of IBESR since December 6th. 8 months would mean that Noah would be home in August. I just couldn't handle it anymore. I was sobbing. Jaden and Danielle looked over at me and said, "Mommy, what's the matter?" I told them that I had just read something that made me think Noah is not going to be home for a long time. They were so cute - Jaden said "I'll just change it, Mommy," and he started typing on my keyboard. He figured he would just change what it said on my screen and everything would be okay. Then, Danielle said, "Don't worry, Mommy, I'll save you. Noah will be home soon and Danielle will save you." It was so sweet! Who could ask for better kiddos?

Since that day, I've had my ups and downs. We found out that we are finally past the next stage of the process (Parquet), but it's still unclear where exactly our file is at or how long we may have to wait. I read a few things about MOI (the stage where they approve your child for passports) and why it is taking so long. At one point someone said that things were worked out, but now today I read something about the head of MOI being afraid that people are using children for body parts! How do people get these crazy ideas?!? So, now he's apparently going over parts of the dossier again. I was hoping it would only be a couple more months, but now I'm not sure again. It's been very draining! Noah WILL come home, but it's hard to imagine when at this point.Well, I'll try and post more often again now - when there are actually things to say. That's all I can think for now. I'm posting Noah's latest picture - he's gotten so big!!